Living with Chronic Fatigue, Lyme Disease & Rickettsial Disease

Easy there girl..........

2012-01-25T10:50:00.005Z

Hey People,

Just a brief follow up on yesterdays post. After I finished my blog post I went for a walk. I was still feeling rather elated. Our car was in for service. I usually drive down to the flat patch along the coast. As we had no car I decided to walk around our estate, which has some hills. With uplifting music playing on my iPod and panoramic views of the ocean I had a bounce in my step, and it felt more than great! Perhaps I let myself get a little too hyper, loosing some grounding. It did enter my mind that I was perhaps walking a bit too fast. But it just felt so nice in my brain that I continued.

For the afternoon I was very tired. I thought, "perhaps I over did it slightly". I just rested for the rest of the day in bed. Today I am wrecked... I have been told in the past not to get my heart rate up much by my doctor. My heart doesn't quite push the blood out of my heart properly. I guess my body just isn't there yet. I have been enjoying fifteen to twenty minute very slow paced walks along the flat path of the coast recently. This isn't the first time this has happened lately. I just can't walk too far or too fast, and I need to stick to that. I also know too much exercise played a big part in my relapse a few years ago.

I shall rest in bed for the day. I'm sure I will be better tomorrow due to my quicker recovery times. I just wanted to illustrate the need to remain grounded, and to go easy, even when we feel we have a little more energy.

Over and out.......... : )

Treya : )

Such welcome luxuries : )

2012-01-24T12:24:00.015Z

Hey People,

I've finally returned to the blogging world, and I hope to be blogging on a more regular basis now. The last few months have encapsulated many experiences, and I'm all about experiences at the moment! I've been quietly witnessing my body throughout all of this. There's no doubt it was a very rough summer symptom wise. But I thought I noticed a change with my energy levels around October. I tried not to put too much thought into it as I've seen such improvements before to only fall very quickly from grace. I thought it was best to keep my thoughts to myself for a while and see if what I thought was an improvement in my energy was of note over a longer period of time.

What better way to reach my empirical conclusion than to have a wedding to get through, followed by Christmas. For me Christmas wasn't something I particularly look forward to over the last few years. For someone with chronic fatigue it can be a very challenging time, with an inevitable crash for a month or so afterwards. My health held up as good as I could have wished for for my wedding day. I did have quite a bit of pain and discomfort, but my energy was pretty good. I did catch something the week before so I was still recovering from that. The issues I worried about the most before the wedding day would be fatigue where I just couldn't function, or migraines which have once again become a consistent and unwelcome part of my recent life.

I danced to about three or four songs, and enjoyed watching others dance to all the others. The photography took a long time, but it was very relaxing and a much appreciated bit of quite time after a crazy hectic morning. I got to lie down for about forty five minutes whilst everyone was eating their deserts and after dinner drinks. Of course the next day I was tired, but I wasn't 'I can't lift my arm tired'. I got out to say good bye to everyone and had breakfast and lunch. Christmas was tough, and my infection that I caught before the wedding persisted, but I got through it better than previous years. Usually by Christmas Day I'm crashing.

The most evident thing to me through all of this activity was that I was recovering from pushing myself quicker. It's all very subtle. But the most apparent thing is that there has been a shift within my mind and spirit. I can say with absolute certainty that this has only happened since I have got a bit of a break from my symptoms. Even though my energy appeared to improved somewhat a while back I just couldn't judge properly as I was in so much pain. Since December there has been a significant improvement with this spastic type pain and nerve problems. It has been that break that has given me the luxury of being able to think a bit more clearly.

It is my belief that when bogged down by such a varied array of symptoms every day that we are in pure survival mode. This just doesn't leave any room for the kind of positivity and ease that motivation is born out from. Indeed it takes a huge amount of 'survival motivation' to get through each day when suffering so much. I do feel terribly sorry for those of you who just aren't getting a break for such luxuries. I promise to always fight for those who don't experience such.

Something to note is that I'm not being reckless with my emotions here. If anything I'm being very kind to myself. I'm practicing very much on letting things just be, whether that be bad days or good days. I'm particularly conscious of the Buddhist teachings of suffering being caused by grasping. I'm trying to just live in the moment as much as possible. Just being and partaking without grasping to the outcomes of things. This includes my thoughts. Everything is 'impermanent' is at the forefront of my mind. I'm back meditating once a day, and in general I'm just trying to live and experience a bit more. This is all very basic things, such as reading books, writing, walking.

I'm still not feeling so good in many ways. In fact just yesterday I finished a gruelling three weeks of IV antibiotics which was an intense rollar coaster ride. I still have symptoms. I just don't feel like focusing on them too much. I'm also trying to be very conscious not to attach myself to my symptom's. I'm trying to allow them to just pass through my mind also without much thought. Clearly these symptoms aren't as bad as I don't feel that I am in survival mode.

To sum it all up. I'm taking every subtle change and break I get and using it to enthusiastically enjoy being and experiencing. I plan on keeping up my walking, reading, writing, and meditating. That's more than enough for now. I'm feeling very happy. There is a big inner shift taking place. One that I don't think can be reached when being assaulted by constant terrible symptoms.

I am thinking of those of you who aren't as fortunate as myself right now.

I hope you are all ok...

Treya : )

Wedding photos.......

2011-12-22T18:34:00.005Z

Hey People,

I've decided to get over my shyness and reveal myself for a short while, by putting up some wedding photos as I know you have been following my story since the 'interesting' engagement scenario last year. I will probably take them down after a couple of weeks as I like to keep my identity private as it gives me more freedom to be honest about difficult matters I discuss. Ireland is a small country you know... : ) Ain't to many of us blogging out there. My blog would be quite easy to source if someone I knew really wanted.

It was an AMAZING day!! I'm proud of my body for getting me through. I had a couple of big lulls, and I only got to lie down for 30 mins. I had quite a bit of pain also. But given my health I couldn't have expected to get through it any better. I also danced quite a bit. My legs were very sore the next day. Even my ass cheeks were sore... My poor little body isn't used to that kind of exercise. But it was a ll worth it.

As you can see we went for a 'Great Gatsby' theme. My dress was vintage, seventy years old...

HAPPY CHRISTMAS EVERYONE!!!!!

I hope you're all ok....

Treya : )

Christmas cards!!

2011-11-27T12:02:00.003Z

Hey People,

The Irish ME/CFS Association is selling Christmas cards again. The don't get much funding or donation and rely on a lot of their funds coming from Christmas card sales. They have some really cute cards. You have different options for making your payment, which is great! I just bought mine using Paypal. It couldn't have been easier.

Here's a link to their site

It's exactly three weeks until my wedding... I can't wait for the celebrations!

I hope you're all well...

Treya : )

A quick hair Vanity tip!

2011-11-04T19:41:00.005Z

Hey People,

I have recently discovered a God send! To me anyway, and I wanted to share it. Something that causes me problems is my hair. I have long hair that is curly, and I only ever wear it straight. It uses up so much precious energy trying to wash it and style it with such limited energy and weak arms. I also have very greasy hair, even just after I wash it...

I recently became aware of 'Dry Shampoo'. Now, apparently this has been around for a long time, but I only heard about it recently. It comes in a spray can like hair spray. You basically spray it in to unwashed/greasy hair and it gets rid of all the grease. It is great!!!!! I now only have to wash it once a week!!! Apparently the less you wash your hair the better it is for your hair anyway.

The product I use isn't expensive and has been SO helpful. There are many times when I could go out for an hour and I haven't as my hair is horribly greasy, and too hard to manage effort wise.

I just thought I would share this to any of you who haven't heard of it. The product I use is Bastie. Link here.

I hope this has helped someone...

I hope you are all ok...

Treya : )

A quick apology

2011-10-31T13:55:00.004Z

Hey People,

I've only now just realized that blogger had changed things around with comments and sending them straight to blogger spam?? before you publish. I was no longer getting them into my email for approval. As far as I knew I wasn't getting any comments. I thought self doubt had gotten so angry for my ignoring that he stole all my blogging buddies : )

I wasn't ignoring comments. Sorry about that... Thanks to everyone who has been commenting!!!

I actually managed to read and publish all comments that were written just now, but then I somehow deleted them by mistake... Oops! They're gone for good I think. I shall read and publish all comments from now on.

I hope you're all well......

Treya : ) x

Out of hiding : )

2011-10-23T11:05:00.012+01:00

Well Hello People!

It's been way to long since I have felt inspired to write a post. There are many obvious reasons why I haven't been up to writing physically. There has been a lot going on over the last few months, and I've taken quite a dip health wise. However, it's the less obvious reasons that I find myself more curious as to why I haven't felt like writing. In some ways I think I was rebelling against this illness. It takes so much already from me that sometimes I resent using up anymore time trying to write about it. Then I guess I wanted to challenge myself and see how far I have come with just letting things be and not forcing myself to achieve things. If I didn't feel inspired to write on my blog, then why force it??? Why not give myself a break?? I want it to be something I enjoy, not something I resent having to do each week.

I think the break has been a very healthy decision. Where has this new relaxed attitude manifested from? Is it here to stay? At six years down the long road of chronic illness I find myself at a good place. This place--somewhere in Treya's head I guess--lets call it...... Strong Hold! Yes, that's it. A place called Strong Hold deep within Treya land! This place houses wisdom, confidence, acceptance, and peace of mind. Now, If I'm honest, most places have a bad neighbor hood, and Strong Hold is no different, having one tiny one called self doubt. Now self doubt is strongly out numbered, so it doesn't have much of a voice.

I think Strong Hold is a natural part.............. Hmmm...... Urghhh.... Having word finding issues, and now my thoughts are gone further and further........... gone!............................

Ok, here goes. It would appear that strong hold is a natural part of the psychological journey of living with a chronic illness. I guess it's like a domino right in the middle of a line of falling domino's that stands tall and stops the rest of them from falling! Six years is a long time, and I think I have leaned some very hard lessons. Yes, I still struggle with extreme lows when on treatment or feeling very unwell. I guess I'm beginning to find myself again within this jumbled up mess of contradictions. When one becomes ill and loses work, hobbies, social life, friends, health. One loses confidence, loses oneself.

I guess I'm getting back my confidence. Getting a new me! The greatest gift about this new manifestation is the gift of living in the present! This is something I have been trying to achieve for a few years now. Living within the moment. Living within that day. Not thinking about tomorrow. This illness and the life it forces on me, seems to have naturally strengthened my mind and given me the gift of 'NOW'. Some how my mind naturally doesn't even think about tomorrow anymore. It's amazing!

Now of course if we come back to the whole yin yang thingy, and life and all that, of course I'm not living in some blissful paradise here. I"m still having major problems with my health, with worrying new symptoms, for which I have to go through MRI's, EMG tests, etc this week. But I'm not in the mood for talking about questions that have answers that are questions that keep going on into an infinity of questions........ Nope, I'm saying despite all of that I'm managing to live my life as well as can be expected within which ever challenges life throws me each day. I'm hanging out with my new friends Wisdom, Acceptance, and Peace of mind. We don't really let self doubt play with us. I know it's kind of mean, but self doubt can go find some new friends.

Six years down the road: My body is still sick, but my mind is still growing!! Things ain't that bad right now : )

Over and out for now.

I hope you're all ok....

Treya : )

The psychological Effects of Lyme

2011-09-11T13:50:00.003+01:00

Hey People,

I recently came across this article on the psychological effects of Lyme. My partner found it very good as it is written in layman terms and easy to understand. He found it so good he sent it on to some members of his family, as they are always wanting to try and understand this illness.

I found good as I feel this illness has REALLY affected my brain: personality, behavior, etc. This has been incredibly difficult as I haven't always understood it and often loved ones have judged and been angry at me when really it should have been directed at the cause. However, its not exactly black and white. How do you separate the two........ : )

Perhaps you may find it helpful to pass on to those around you. It's not too long.

HERE IS LINK

I hope you're all well...

Treya : )

EXCELLENT 10 min video testimony- US Lyme doctor

2011-09-11T13:40:00.006+01:00

Hey People,

Below is what I think is an excellent video testimony from a Lyme disease doctor (Dr. Smith) from Pennsylvania. He has 10 years experience with over a thousand Lyme patients. I think it would be very appropriate to show family/loved ones who find it hard to understand why its so hard to be effectively treated for chronic Lyme disease.

It's well worth the watch!!!

I hope you're all well...

Treya : )

Excellent Video informing about ME

2011-09-11T13:12:00.005+01:00

Hey People,

I've been having a pretty bad run of it lately. I'm on a longer and heavier treatment which has left me with few good days. It's not long now until my wedding on 17 December. My brother is getting married in Spain on October the 1st next, so I will be going there for a week. I'm trying to get myself as well as possible for these two big events. Realistically speaking I can't see myself getting back into my blogging routine until after Christmas. I'm sure I will get to write something short before my wedding.

For now I have a very informative video to share. It is on ME.

ME VIDEO - From GETTING WELL FROM ME

I hope you're all well...

Treya : )

Professor Hooper's response to Wessely - on ME

2011-08-29T22:19:00.005+01:00

Hey People,

I haven't been up to blogging lately for various reasons. I'm hoping to return regularly soon. I just wanted to put up a link to a good article written by Professor Hooper in response to Wessley's latest allegations on ME.

Article link here

I hope you're all well...

Treya : )

Link to great article!! Relapsing and Adrenaline Surges

2011-07-10T14:08:00.003+01:00

Hey People,

I've had a crazy three weeks with a trip to Paris and three funerals. I've had way too much pushing to do and I can feel a big crash creeping in. I have a hair trial on Tuesday for my wedding and then I have to go and try hair pieces. I think its going to be a very challenging day and I just hope I am up for it... I'm going to Spain for ten days on the 25th. I need to do some serious resting before hand so I'm thinking it might be sensible to leave my blog until after that. I may feel like doing a post before I go, but probably not.

Anyway, I wanted to share this link to a wonderful blog post on another blog which discusses a new paper that covers "Relapsing and Adrenaline Surges". It's very informative and I feel great information to families and friends of people with Chronic fatigue. I certainly will be giving it to people. I found it very helpful for myself too.

I hope you're all well...

Treya : )

A mixed bag

2011-06-16T10:08:00.007+01:00

Hey People,

Today is a bit of a mixed bag, with general updates. I just don't feel like even attempting to write about anything interesting. Ok so the symptom that's been giving me a real pain in my ass (literally : ) ) of late is neuritis. Last year I started to have a lot of pain in my lower back/butt, and down my legs. You might remember me saying I had to use a donut ring. Well, this improved somewhat after a few months of treatment and I didn't really have to use the donut ring in bed much. Last month it returned after I generally took a big dive. You see, I had made some progress after a few months of treatment, but then I took a good few steps back and I actually developed some new issues like bad spasms. Anyway, to get back to my point, my issues with the lower back, ass, leg pain started a few weeks ago badly. Before it was only really when I was sitting/lying in bed. This time it hurts with sitting, lying, walking, driving.

So my doctor sent me for an MRI of the lumber spine, and also a daxascan. Both came back normal which initially irritated me as I thought it was just another list of issues that were unexplained, and I couldn't understand how I could have such pain. As it turns out it did help a lot as it rules out structural damage, but told us that it was neuritis:

"Neuritis is one of the serious nervous disorders. Neuritis refers to an inflammation of the nerves, involving a single nerve or a series of nerves. At times, several different groups of nerves in various parts of the body may be involved. Neuritis is known as polyneuritis. Neuritis is also known as polyneuropathy, for strictly speaking, Neuritis condition is not an inflammation, but a change in the state of the nerves resulting in weakness, loss of the reflexes and changes of sensation".

I've actually had nerve pains for a couple of years now, but it has got worse. My doc said it is polyneuropathy, which involves many nerves throughout the body. I've also been having weakness, numbness, and tingling/pins and needles. Again these are issues I've had for quite a while. It's just they are worsening.

I have been on Lyrica, and amitriptyline for the last two years for these types of issues. My doc is taking my off Lyrica (this has to be gradual), and starting me on Cymbalta. This medication is used for depression a lot, but it is also used for neuritis.

My spasms are persisting on the left side of my body, and they can be really quite painful at times. It just feels like something is really overexcited. When it gets really overbearing I take a muscle relaxer. I try not to take it too much as I'm afraid of the addictive side of things with these tablets. I also take over the counter pain meds, probably too much, for my neuritis. I'm hoping this can stop with the new medication.

I'm on treatment at the moment (month 8). Its not too bad. I don't seem to be herxing as bad as when I first started treatment. I still feel ill, but before I could hardly stand out of bed, whereas now I can do a little. I'm on 1400 mgs a day: 800mgs of Flagyl, and 600mg of Tetraysal.

I found out a couple of days ago that my latest smear test is abnormal. I've had precancerous cells twice already and I've had to have two Lletz procedures. The last one was only a year ago... Its not really a good sign. I am a little concerned. Before I just got a letter with the results and I made an appointment and was seen a few weeks later by a gyne. This time I had it two weeks ago and the doctor rang me to say I need to see the gyne and that she would contact them. They then rang me yesterday to see if I can come in next week... Its all a bit too rushed for my liking.

I'm actually going to Paris next week to see a new specialist about my Lyme, etc, so I can't go then. Then my gyne isn't there the following week, so my appointment is for the 4th July. I definitely think my illness is causing this recurrence. Anyway, I don't want to think about it anymore as worrying isn't going to help me in anyway. A I said I'm off to Paris next week to see a new specialist. My other doctor (Dr. Jadin) was in a bad car accident before Christmas in South Africa (where she is from) ,and she damaged her spine, so she can't travel to Europe to see her European patients. This Paris doc is a colleague of hers and he follows her protocol. I'm interested to meet him as he seems to be quite like the LLMD's in the US. He takes quite a holistic approach, using antibiotics, and essential oils that you drink... I shall let you all know how it went. I will find out if I can share his name. My Dad is bringing me over (and paying-I am truly blessed). The only thing that is concerning me is that he booked it all in one day. I have to fly out at 7am and my returning flight is at 10.45pm. I know––alarm bells!!! This is why I'm saying I won't be able for anything else next week like gyne appointment. My Dad said we can hopefully get a room in one of the airport hotels after my appointment for a few hours so I can rest. My appointment is at 14.00, so even leading up to that is going to be tough going, since I will have to be up for around 5am. Ah well, I stressed my little head about it all a few weeks ago, now I just think it has to be done, so no point. I am having total rest for the next few days. I even said I wouldn't do any blog posts, etc, but I guess the will won this fight : )

To finish on a positive note. I finally finished my Japan short story for my creative writing course!!! It's great to feel I have achieved something. It was 3,000 words and it had to be set in a place I had never been before. So, between months/weeks off due to being sick in between it actually took over a year to do as I had to do lots of research too. It just highlights how hard it is for me to get anything outside daily tasks done with this illness and chronic fatigue...

So that's it people!

I hope you're all well...

Bye for now,

Treya : )

Checking in with myself

2011-05-25T12:18:00.006+01:00

Hey Party People………..

Last week I talked about the Feldenkrais Method. I want to talk about it and body awareness in general. Basically it all comes down to checking in with my body. I have been back trying to analyse and see how I can prevent myself from overdoing it in general. This is very hard for me not to do and I would say it’s the same for all of you. I shall use my home study course and walking as an example. These are two of my goals to try and achieve on a regular basis (a few days a week). Often when I wake up not feeling good my will and my body jump straight into the boxing ring and have it out. My will is very strong and often wins unless I’m in major crash mode. This is something I’m learning has to change.

If I don’t start listening to my body more perhaps I may ruin my chances of reaching better health. My therapist suggested to me that I need to start being more kind and loving and caring to my body. So, first thing in the morning I have to pause and check in with my body: How am I feeling today? ( I don’t say this out loud, but feel free to do so if you wish) Is my body trying to tell me something? And the biggy: Is my body up for doing what I had planned? This is the part that seems to go against my character, the stubborn me with a lot of will. I often override my body's needs as I am determined to get something done. Acceptance is what is required here if the body is saying ‘I ain’t up for doing anything. I needs me some rest’. This is easier said than done, but I will be practising this until it comes naturally to me. Its good to check in with the body throughout the day.

Another area where I need to listen to my body’s needs is that of going out and about. In this area I’ve been told I need to become quite rootless. You see, my natural tendency is to put others feeling before my own. Some examples: when my sister asks me to baby-sit for a couple of hours etc, I often feel obliged as she will possibly be left stuck. I know she only asks me when she's desperate. A perfect example was last Saturday night. It was my brother’s engagement party. I struggled with this all week as I knew I wasn’t feeling so good, however, I wanted to show my support. There were lots of people going whom I hadn’t seen in ages and it would have been great to see them. In general it was going to be a great and fun night. So, the fact that my sister and her husband and my partner were going made me feel better about not going as there was family there to show support. But then my sister and her husband had to cancel and my partner wasn’t going on his own. This was the BIG test for me: I felt really bad that there was going to be no family there and started to feel that I should push myself to go. In the end I would have got top marks as I listened to my body and didn’t go. I’m hoping this is the beginning of me getting stronger in this area of saying no. It’s funny there always seems to be a pretty good reason to feel obliged to go to things.

Now back to the psychical. I went to a Feldenkrais workshop last Saturday! It was three hours, but I arranged to only go for an hour. I REALLY enjoyed it. It was perfect for my needs and limitations. It was all very gentle and slow movements. We were just lying on the ground all of the time and turning to the sides doing slow movements with the arms and hips. All the work was on the spine. I have a lot of issues with my spine and hips so this was great for me. It was so relaxing. A major problem I’ve been having the last couple of months is painful muscle spasms on my left side, especially the back of my neck, upper spine and all to the left back around the whole shoulder and arm. It runs also down my leg, but the leg isn’t as bad. I have doing these new Feldenkrais movements at home each day and they REALLY help with this uptightness and spasms.

Another kind of body scanning: I've been trying to be aware of how I hold myself and my posture in general. The things that I’ve noticed are that I seem to hold my upper body and head in a tense manner. Some of this is probably neurological and causing the spasms. For weeks now my body seems to be stuck in an overexcited way. Like overexcited nerves or something. However, I think paying attention to this and consciously relaxing myself throughout the day should help. I have also noticed that I hold my breath a lot when I’m concentrating on a task. I also seem to hold myself in a tense way when doing a task. I slouch my shoulders forward a lot too. I’m sure this is because of the chronic fatigue, as it takes energy to hold oneself up straight, right?

Finally with my creative writing I am doing exercises throughout the day for description, where I have to stop and be aware of my surroundings and my senses. I’ve also been meditating in the mornings when I’m well. So there is lots of work going on with me and my awareness. It’s all good people, it’s all good.

Over and out for now!

I hope you’re all well…

Treya : )

Imagination. Friend or foe?

2011-05-18T10:22:00.014+01:00

Hey People,

Friend or Foe? I would say a bit of both. Our imaginations are powerful tools and can be put to great use for us. Take visualization for instance. They say that our minds have a great power over our bodies, down to a cellular level. Now, I have a VERY active imagination, but I’ve never really enjoyed visualization. However, I do believe the concept of changing things at a cellular level using our minds. I’m not saying we can cure ourselves completely by doing this, but I do believe we can use it as a tool in certain situations. For example there was a study done at the University of Chicago by a Dr. Blaslotto on visualization and physical exercise. His research showed

“ that visualization can actually increase productivity in nearly the same extent as physical exercise”. Athletes often use visualization as part of their training.

One can even visualize themselves exercising whilst lying in bed. I really like the idea of this. I wonder how much power we have to change our bodies doing this? It may take a bit of practice.

So, How does Visualization work?

With each experience, a neural pathway is formed. Neural Pathways in short, are clusters of neurons in the brain that work together to create a memory or a learned behavior. Dr. Blaslotto explained, “As your brain conceives of an act, it generates impulses that prompt neurons to ‘perform’ the movement being imagined by transmitting those impulses from the brain to the muscles.” This in turn creates a habit, or neural pathway in the brain, programming your body’s actions as if you physically performed the activity….

I was told about a particular technique called the Feldenkrais Method. It sounds very interesting to me. I have just done a small amount of research on it at this point.

“The Feldenkrais Method of somatic education is a system of learning that offers a different paradigm for the exploration of human integrity, function, maturation, and overall health. Feldenkrais^® lessons are designed to change the way you think, move, and sense yourself in the world. They use movement, attention, and imagination to enhance your awareness and improve your physical, mental, and creative performance.

It is an instrument used to explore the landscapes of your interior self and to investigate habitual patterns from past conditioning that may be hindering your ability to live fully. Feldenkrais will help you find different ways of organizing yourself to meet your environment and will influence the quality of awareness in your day-to-day life”.

Amanda Lynn Halldorson, thenatureofmovement.com

“Most of us accept the ways we move as if they are a part of our genetic makeup, whereas in reality, we learned to move by trial and error, and our nervous system is wired according to our experiences. Unless we are challenged to question this wiring, and to explore new possibilities of movement, we limit our range of expression.

Who Benefits from the Feldenkrais Method?

Anyone—young or old, physically challenged or physically fit—can benefit from the Method. Feldenkrais is beneficial for those experiencing chronic or acute pain of the back, neck, shoulder, hip, legs or knee, as well as for healthy individuals who wish to enhance their self-image. The Method has been very helpful in dealing with central nervous system conditions such as multiple sclerosis, cerebral palsy, and stroke. Musicians, actors and artists can extend their abilities and enhance creativity. Many Seniors enjoy using it to retain or regain their ability to move without strain or discomfort.

Through lessons in this method you can enjoy greater ease of movement, an increased sense of vitality, and feelings of peaceful relaxation. After a session you often feel taller and lighter, breathe more freely and find that your discomforts have eased. You experience relaxation, and feel more centered and balanced”.

http://www.feldenkrais.com

Here's a link to a video on the technique. For some reason I'm having troubling uploading it.

I have been told that this method is perfect for people with such limitations as ours who want to strengthen their bodies as if doing a workout. I really like the idea that you get to use your imagination and learn new ways that the mind and body are connected. I am going to do a lot more research into this and hopefully find somewhere near by where I can do classes. I’m sure I’ll have a lot more to say about it in the future.

Now, moving on to the Foe part, and our imaginations ability to trick us. This applies to the sick and the healthy. However, here I am concerned only with those of us who are chronically ill. I’m still dipping in and out of the book I talked about a few posts back ‘After the diagnosis’. I am currently reading the chapter ‘Intermittent Depression’, which she says is a natural part of living with an illness that has forced change and loss on us. She talks about these depressions being largely unavoidable. However, she does talk about ways we can look at and prevent how bad we feel at times. Here, she talks about the ‘phantom psyche’.

“that is, the composite image of how life would be without any limitations”. As long as we allow this to exist “the phantom psyche has the power to haunt and belittle our current efforts”.

The unrealistic components––their idealized past and exaggerated expectations of the future––tend to perpetuate depression”.

Pg. 130, After the diagnosis, JoAnn LeMaistre.

This is something that is talked about a lot in Buddhism and believed to cause suffering. They tend to call it writing a story in our heads. That’s why they teach you to only live in the present, the present moment, which is the only true reality we should spend more mental energy on... If you are interested in this I would suggest reading Joann’s book and looking into Buddhism. I have mentioned before how helpful I have found ‘The Tibetan Book of Living and Dying’. I have a link for it in the side bar.

Of course some of my depressions are phsiological in nature. In fact, I had a depression like this over the weekend, and I just felt numb. Nothing triggered it, and I wasn’t upset with my circumstances. But above I am mainly concerned with depression that is somehow triggered when we are reminded of what we cannot do anymore (situational depression). I am currently working on trying to be aware of what triggers certain responses in me. Often triggers cause us to act out, whether this be over doing it to prove something to ourselves, etc. I’m hopping that if I have some of my triggers listed and thought out that I can deal with these issues more.

As for the ‘phantom psyche’. Can I have a show of hands for all of those guilty in this area?? : ) This is something that tricks me time and again, so I am working hard on this one.

There will be lots more on this I’m sure…

I hope you’re all well…

Speak soon,

Treya : )

New challenges. Or maybe old challenges…

2011-05-10T15:03:00.002+01:00

Hey People,

New challenges. Or maybe old challenges… Just plain old challenges in general. They seem to come attached to this illness like a piece of chewing gum stuck in ones hair. For anyone to follow this blog they will see a perfect example of the roller coaster ride that is living with an illness such as mine. This is not a moan, its just fact! My last post was about how good I was feeling. Then without my control I was sent a few steps backwards; actually make that miles…

I’m beginning to wonder if my quest to find balance will ever be found… It truly is very difficult to remain on the ground all the time in the same place, nowhere near that sticky-icky chewing gum. There’s no doubt that ones very own nature and personality come into play here. Life is a contradiction of sorts. This illness is a contradiction of sorts. My personality is definitely a contradiction of sorts. That’s a whole lot of contradictions covering the ground.

I find myself constantly coming back to the same questions:

How does one learn to truly listen to ones body and try to live in a world that runs on not listening to ones body??

How does ones hope stay strong when the very things we put in place to strengthen our hope wreck our bodies?

There’s one thing for sure: I have a deep hunger for life. Sometimes my partner says to me that he can’t understand how I keep going and don’t give up. Firstly, I don’t have a choice : ) But really it comes down to that hunger for life and everything in it that have. It’s a fire deep within my soul that will never go out, EVER.

Probably my biggest challenge is trying to deal with the frustration that is born out of daily life living with this illness. I won’t go into it again, but yes I’m talking about my whole ‘achievement’ issue here. To give a quick example: I was enjoying doing my writing course and then I started having bad problems with my arms and using them on the computer. In unison with this my brain started really acting up. Both of these things alone make it very difficult to write and think properly. In fact, I had to totally stop using the computer. Then followed a deterioration with the rest of my body. Then it was back to my boring old bed to just lie around––BORED––waiting for myself to get better.

To be honest, my brain is still not great at all. I’m having a lot of trouble writing this post and sticking to the point. So its going to have to do for now.

So, what is it I'm trying to take away, and learn from this recent fall from grace? Patience! The art of patience… Patience in every aspect of my life and the way I live it. My wedding has to take top priority over everything. I have to keep that at the forefront of my mind.

In my next post I will give a general symptom update and talk about where I’m at with my treatment right now.

I hope you’re all well…

Treya : )

Dear blogging friends

2011-04-11T20:33:00.002+01:00

Dear people,

I felt I wanted to tell you all something. Since I have been fortunate enough of late to be experiencing times of better health. What I mean is: I’m still having bad times, but my better times are better than they used to be. During these times of lightness I am seeing more clearly through the clouds. Those awful clouds of sickness that only a chronically sick person can know.

Before, when I was waking up feeling awful all day every day I used to just survive through the day. Living this awful existence for so long ones ‘more normal’ or ‘better’ days are cherished. When the body is very ill and one is in survival mode, it really leaves little energy for the brain function.

I was out on a walk today––this following a very good week––and I have to say apart from painful joints I felt normal… I had this kind of ‘wow’ feeling, and it dawned on me that this kind of normal was something I hadn’t felt for a long time. What I’m getting at here is that I am so used to feeling awful, that even what I thought I remembered and thought was ‘normal’, actually wasn’t. What I felt today was more near the normal that I used to feel like.

I then began to reflect on how hard I have been on myself at times, thinking and questioning my illness. All of this relates back to the stigmas attached to these illnesses. As I was walking I thought this is how it must feel for healthy people: doing an activity with such ease, and lightness. I then had such an urge to share this with my blogging friends.

Basically, I write this now to all of you, who still only have their heads just above water, to let you know that you ARE doing your best right now. You have a disease that is dragging you down. Believe this 100%. Its only now that I’ve had a little glimmer of the ‘real normal’ that I really realize that my body has been very sick. It’s only when you get a glimpse like this that you wonder how you have been surviving at such a low level for so long.

I write this as I know I have been lucky enough to find some answers and get some treatment, but I know there are so many of you that still await help and answers. I just wanted to tell you all to go easy on yourselves. Your body is very ill. Your body is running at a level a million miles from normal…

I write this for those of you who are so ill, you’re putting all your energy into surviving through the day, leaving no energy for the luxury of thought I was given today.

That’s all for now.

I hope you’re all doing ok…

Treya : )

P.S I’m still being cautiously optimistic : ) not foolishly optimistic…

Cautious optimism

2011-03-24T10:04:00.005Z

Hey people,

The weather is truly glorious in Dublin the last few days, and my mood is on a par with the weather. Ah yes, it’s nice to be back in the vicinity of the land of ‘everything is just that bit easier’.

So what have I learned from my latest dip, where my illness and my mind joined in forces and pulled the wool over my eyes? Cautious optimism people… To explain it simply that is.

As I’ve been reading the book I talked about last week I’ve come to realize I’m somewhere near the reconstruction phase of living with my illness. I say near as I feel that one can never truly have both their feet on the reconstruction stepping stone with this illness, certainly at the level of debility I’m at now. I say this, as we all know even in one day we take two steps forward, and one step back, and so forth…

I speak of all this lightly as I find my self with this sunny disposition. It is in fact a continuously frustrating place to be at, constantly challenging oneself to keep a level attitude/spirit.

What I learnt from my latest dip is that it is very hard to have that fighting spirit, or feeling of ease when doing things when feeling ill. I thought I’d turned a corner as far as not feeling that confliction between my body and my will. It would appear that was just when I was feeling overall better.

So where does this leave me? Well, I’ve come to realize that I’ve been unrealistic in terms of the goals I’ve set out to achieve. These goals need to be built around me being mindful that this is a chronic illness that I’m living with. Without such mindfulness, one is almost being reckless with ones emotions, leaving the fall a much more uncomfortable landing!

Back to cautious optimism and what that is. Well, all I know right now is the whole ‘mindful’ thing. This is a work in progress… If I knew all the answers to living the cautiously optimistic life then I’d have living with an illness like this nailed. As far as I can see it’s a middle ground place, probably not too far from limbo land. These places are quite hard to gain complete clarity on. As I said earlier, it’s with one foot on one steppingstone and one on the other. Not the most stable of places to find oneself.

Something else I’m currently revisiting is that of living in the present. Again if you look at things/life broadly this is difficult to truly execute. We have to think about the future to some extent, like with my wedding plans, etc. However, when I find myself worrying about how god dam slowly I’m taking to do my course, it pays to remind myself to enjoy the work I can do on it at that present time. The same goes for any worries one has for the future, whether that be the next day, or the next week.

For a few months now I’ve been working on research for a story I’m writing in Japan. I’m really enjoying it as so many of their traditions are focused around appreciating the simple things in life and using these methods to truly live in the present. For example the whole art of Tea making is fascinating in this area. I’m loving it! I've also been getting into Haiku poetry which again focuses on the present and appreciating the beauty around you. In fact I would highly recommend checking out some Haiku poetry. A good starting place is the following book;

Haiku Mind: 108 Poems to Cultivate Awareness and Open Your Heart

Here's one I wrote from my bed,

Through dirty glass

Withered branches

highlighted by

luminous sky

So that’s where I find myself people. I guess I’m on similar ground with my writing course and with what I’m working on in my illness. I just need to remember that everything is always changing, and so will be the same with my illness, my ‘chronic’ illness : )

Life is a work in progress anyway…

I hope you’re all well…

Treya : )

A good book

2011-03-17T08:32:00.005Z

Hey People,

I've yet to improve again since going down hill. Due to this I find myself struggling emotionally. I had been doing so well and like so often before I feel I've almost been foolish to think that the improvment was there to stay. The mind has a funny way of forgetting how bad things were before. All of this has caused me to retreat into myself and I have been quite moody. I feel so tired that I don't feel able to cope with much more than getting through each daily task/the day. My moods have been causing arguments which makes things so much worse...

I don't feel up to writing a full post today. I just wanted to mention a good book I'm reading at the moment that I would suggest reading. It's called 'After the diagnosis' by JoAnn LeMaistre. She has MS.

The books chapters cover:

CRISIS

ISOLATION

ANGER

RECONSTRUCTION

INTERMITTENT DEPRESSION

RENEWAL

HELPING

That's all for now.

I hope you're all well...

Treya : )

Excellent presentation- Stanford

2011-03-13T13:58:00.002Z

Hey People,

This is an interesting presentation on CFS by Dr. Montoya. It's long, but well worth it I think.

A change in the wind

2011-03-02T14:03:00.032Z

Hey People,

I wrote out the post below the other day in my notepad. I'm on treatment now and I'm feeling very ill. I'm in survival mode, so it isn't easy right now to practice what I preach below : ) I just have to go with the flow for now. I'm on 450mg of Dalacin C (clindamycin) a day. Me no likey!

Anyway, I still want to discuss how well things are going. I'm glad I wrote it all down the other day;

A few days ago

At present I find myself in a curious place. I feel as though a subtle change in the wind has occurred, affecting my mind like a breath of fresh air. My spirit appears to have been lit. The reasons for which I can't be sure. Perhaps it's the tweak we made to my antidepressant dose a few weeks back? Perhaps it's the treatment?

I was on low dose amitriptyline 25mg to assist with sleep for the last year and a half. As some of you will know I have been struggling with moods and depression over the last 6 months. For this reason my doctor and I decided to up my dose of amitriptyline. It was only another 25mg for now. Now I'm on 50mg. Still very low... Could this small change have contributed to this subtle change... I have definitely seen some improvements with my symptoms this month. It's hard to say which has caused the change. I'm sure it's a combination of both.

All I know is that I generally don't feel so laden down by sickness. I generally feel more positive. If it is the antidepressants perhaps my dose should have been raised long before now. I am more inclined to think it is the result of everything I've been doing/taking-the holistic approach: Antibiotic treatment, antidepressant, therapy.

To explain myself better. A lot of you will be able to associate with the inner conflict one experiences when their body feels ill but your trying to will yourself to do things, with your body crying out to be resting up. Well, this seems to have somewhat gone. With this lightness of mind I have found myself questioning patterns of thought I have gotten into with this illness. I spent a long time trying to learn to pace myself. Then my body gave in and I was forced to my bed most of the time. I fought for answers through lots of research, desperate for more answers.

What patterns of thought or behaviour am I questioning. How has having to spend so much time researching my illness affected how I deal with my illness? Have I become somewhat conditioned? Can I focus my thoughts in a more positive direction? Let me say this has all been my 'own' thinking. I say this as I'm sure alarm bells are going off for some of you right now. You may be thinking this sounds like CBT. I wondered myself was I in the vicinity of CBT myself with these thoughts. However, I decided instead of resisting, turning towards a curious approach to CBT.

So I decided to ask my therapist her thoughts on CBT and if she did it, if we could discuss it. She says she does do it, but she felt my mind/way of thinking was to complex for CBT. (whatever that means... : ) )

I told her what goals I had in mind for this new change in the direction of my thoughts. As experience has told us what we are able for in relation to expenditure of our energy. This is where my main focus is for now. Instead of always saying I can’t do that or I’m not able for that, I want to try doing things and then when my body is telling me to stop, I will… Like going into the city centre for an hour on my own. Instead of thinking it will be more of an unpleasant experience than a pleasant one. I want to drive in and have a little walk around. Maybe pop into my favourite vintage shop. What's the worst that can happen. I might get a crash in energy. But then I will just have some food in the car and rest. It's about trying to build up my confidence in doing things like this on my own. Feeling independent can only have a very positive outcome. This is the theory anyway. I've yet to venture into the city centre on my own.

I want to try and start off the day doing positive things. Getting up feeling positive, not oh God I feel awful, that being my first feeling of the day. I told my therapist I would like to go for a small walk in the mornings or yoga or meditation. You have heard me talk about these things already. For my walk I will drive down the road and walk for 10 mins on the flat paths. Hopefully then my first though of the day will be one focused on positive things as I live by the sea.

My therapist did note that a lot of the things I wanted to achieve were outwardly goals which is good but that I needed to also focus on nourishing my inner life, my soul. I am generally a very spiritual person so I think it is important to focus on my inner world too. It's all about balance. Perhaps this is where I've been going wrong. Perhaps I've focused too much on achieving outwardly things. For example instead of approaching my walks as exercising I should be walking and soaking in my beautiful surroundings.

My therapist suggested for when I'm feeling ill when I wake up turning on some music that I really love, that lifts me... This can all be organized the night before. I have been doing this and I've found it very helpful. I've also been getting myself up and going for a short walk even when I feel like crap. It has definitely helped me feel more chirpy, going into the day in a more positive mood.

Here are some photos of the two benches I sit on when I do my small walks and the lovely uplifting views. This is right beside where I live. I'm very lucky!

So that's where I find myself at right now. I did a small bit of my writing course four days last week! I want to make sure this illness is stealing as little time as possible from me. That includes my mental energy/thoughts. I don't do any research anymore really as I just want to try and experience all the other things life has to offer, no matter how limited I am.

Perhaps this place I find myself is simply a matter of where I'm at on my journey of my illness. I've been sick a long time now. I want to have as good a quality of a life as I can and spend as little time as possible loosing to my illness.

Maybe I'm just ready for these changes...

That's all for now folks. I'm truley wrecked after that. It is definitely not as coherent as I would like it to be.

I hope you're all well...

Treya : )

Symptom update

2011-02-16T21:24:00.023Z

Hey People,

As promised I'd like to give a symptom update. I've done 5 months of treatment so far. Each treatment as I've mentioned is different antibiotics each time. Each one causes different reactions and aggravates different symptoms. Also, some months some symptoms have improved and then they go down hill again another month. I have even got some new symptoms. I think I told you all up to month three. So for month four I was on doxycycline 300mg a day. For month five I was on doxycycline 200mg a day plus Avelox (Avelon) 400mg a day.

The good news is that my ESR has gone from 28 to 9 in three months. This may go up again, but I think it's encouraging. My doctor gets us to rate our symptoms in numbers: 3 for extreme discomfort, 2 for moderate disturbance, 1 for minor disturbance, and _ for no problem.

So to start with things that haven't really improved (at a 3): Fatigue, Memory/concentration loss, Cold feet & hands, nerve pain, skin sensitivity, spin/bum/leg pain, tendonitis, noise sensitivity/ringing in ears.

Then on to things that are moderate, which I have marked at 2 or 2 1/2: Headaches, depression/mood swings, sleep disturbances, muscle pain, joint pain, post nasal drip/sinus discomfort, chest pain, nausea, night sweats, poison/fluey feeling, tingling/pins and needles, extreme cold/chills, eye pain (right).

And the 1's: Sore throat, tender/swollen glands, dizziness/loss of balance, abdominal disorders, shakes/tremors, twitching, respiratory problems, clicking noise in head.

And then the –, the symptoms that have gone away: stabbing ear pain, uptight/locked jaw pain, blocked/watery ears feeling.

So there you have it. I added symptoms to my docs list as I had a few other symptoms. As I said some things that have improved a bit one month have got worse again in other months. It's good to observe these things though. The new symptoms that have started of late are the tendonitis, the eye pain and clicking noise in my head. I would really like the tendonitis to go away as it's in my right arm and I'm right handed. Basically I'm experiencing pain, weakness, numbness, tingling/pins and needles.

The last couple of days I'm experiencing quite a few neurological issues. There is definitely inflammation or something going on. I have numbness at times in head, tongue. Tingling in head and face, twitching/jerking, head and eye pain.

If only the fatigue would improve. That's the big one... If that was gone at least I would be able to do more and just deal with the other stuff. It's just so hard to do things with such debilitating fatigue. I'm feeling positive though. Hopefully by my wedding I'll have seen a good improvement with my energy.

'so there you go energy, I'm giving you 8 1'2 months. Get on the case!'

That's all for now folks!

I hope you are all well...

Treya : )

Managing CFS & Fibro-free online book

2011-02-08T17:26:00.003Z

Hey people,

For any of you who may be interested. Here is a free online book called

'Managing Chronic Fatigue Syndrome and Fibromyalgia'

You can find it on the CFIDS & Fibromyalgia Self-Help site.

I hope you are all well...

Treya : )

Consistency...

2011-02-03T08:48:00.016Z

Hey people,

As you can see I pulled another one of my disappearing acts : ) But I'm back and once again motivated. I guess I have a bit of a consistency issue. I've talked about this before and it's something that frustrates the hell out of me. The issue at hand I suppose is trying to get things done in the small windows of opportunity that I have. I've also had quite bad tendonitis in my arm/hand which using the computer really doesn't help.

The last few weeks I have been looking at wedding dresses. I could pretend that it's all been such fun and excitement but I'd be lying. I've looked at it as more of a hurdle to get over than anything else if I'm honest. One of the biggest issues was trying to find a dress that covers all my scarring and rash on my back/shoulders. Every god dam wedding dress is low cut on back and front... All of this has used up all my windows of opportunity, and more, leaving me with little time to get other stuff done.

I did really enjoy some of it as I love clothes and fashion. I went twice with my sister which was nice as we don't spend a lot of quality time together. I went twice with my best friend which was great! One of those days was my birthday and I was feeling as good as I get at my best. We had a lovely breakfast in the city centre and then spent some time looking around. It really felt like old times. I used to love going into the city centre when I was well. I was on such a natural high from it all. It was the best day I've had in a long time!!! Who would have thought such simple pleasures could cause such happiness. The last day was with my Mom which was the day I bought my wedding dress!! So I'm over that hurdle now : )

There has been a big problem with my engagement ring... It is white gold. I noticed it seemed to be turning slightly gold on the palm side. This can happen with white gold, but it shouldn't happen after two months. The day I was in the city centre with my best friend I went to a couple of Jewellers to get other opinions before I went back to the place I got it from. When the jeweller looked at it under her magnifying glass she said "that's the least of your worries, there are two big cracks in it and it could snap at any time". Surprisingly enough I didn't freak out as I was having such a good time hanging out in the city centre that day. It has been back at the jewellers about three weeks now. I'm still waiting to find out what the goldsmith says. That day I went to two jewellers one of them was one of the top ones in Dublin. They basically said it's such a big job that they would never take it on... I really hope I don't end up having to get a different ring as I've grown quite attached to that one. We shall see... Here's hoping people.

Now back to the consistency thingy. The problem is that I'm only getting a few good days in a month. What happens is I do my week of treatment, that knocks the crap out of me and just around the time when I've climbed back out of the hole I have to do another treatment... In-out-up-down... Not knowing whether I'm coming or going. It's constant starting and stopping. Even in one day as a lot of you know. I don't get out very often. When I get the chance I do it as I just love to be out experiencing life. The problem is that going out for a couple of hours wrecks me and then I'm too wrecked to do anything else at home.

So, I've got two goals I want to achieve. Yoga and my writing course. I want to try and get back into some very light yoga each day. Some of you might remember I was doing a home study creative writing course. It's a small enough course and you get three years to complete it. I never would have thought at the beginning that I would actually need that long... This is the person who used to do not one but two college courses at once. One full time day course and one part time at night. You can see where my frustration and beating myself up comes from.

The yoga I feel will really benefit me if I can do it. I used to work out five times a week and do yoga. I was extremely toned. Now I don't think I have one muscle left in my body. My calves feel gross when I thought them as them are so soft and floppy. I'm also going to do sit ups. I used to do three hundred a day. The first few years of being sick my stomach remained quite toned, not so now. I've already started them on my pilates ball. Not three hundred mind you...

With the yoga I really want to work on my circulation. Trying to get lots of blood flowing to my brain and organs. I've already been back meditating a good while now. I used to do it religiously twice a day for years. For now I'm mostly only managing to do it once a day.

So that's it really. I'm feeling positive and motivated. At this precise moment in time anyway... Heheheeeee... In an hour I probably feel wrecked and unmotivated : ) Ah yes people, it's all about living in the moment, right?

One thing I definitely have to do is stop wasting a lot of my precious energy online... Yeah, you know what I'm talking about people...

That's all for now folks. In my next post I will do a symptom/treatment update.

I hope you're all well...

Treya : )

XMRV-French study!!!

2011-01-10T14:40:00.002Z

Hey People,

I read this on my friend Dominique's Blog. Very interesting!

De Meirleir on Retrovirus
Retrovirus in European patients: De Meirleir confirms NIH/FDA & WPI findings (in FRENCH)
Study results will be shared at the Sept. 7& 8 international XMRV conference
————————————————-
Google translation of article below
Discovery: a new virus could cause chronic fatigue
Magazine – Health Sciences and Tues, August 24, 18:46
Researchers at the Vrije Universiteit Brussel (VUB) and the Belgian company biotech RED Laboratories “are able to identify a new retrovirus in patients with chronic fatigue syndrome, said Tuesday the VUB in a statement. These results corroborate a recent American discovery.
U.S. researchers from the University of Nevada were discovered in October 2009, the majority of patients suffering from chronic fatigue syndrome were carriers of a new retrovirus XMRV. Before the Belgian study, the U.S. findings had been confirmed by the Harvard Medical School and the National Institute of Health (NIH).
Research conducted under the direction of Professor De Meirleir (VUB) is a novelty because the virus has been found in sick patients from across Europe.

Moreover, the immunological signature is comparable to that of a patient with AIDS.
This new discovery will be presented on September 7 and 8 coming at a workshop of the National Institute of Health in Washington. (Hat tip to Life as We Know it)
Copied from Dominique's Blog (Thanks Dominique x)

I hope you're all well...

Treya : )

Blood transfusion transmission of babesiosis

2011-01-08T17:28:00.005Z

I found this interesting as I was watching the webcasts of the Institute of Medicine of the National Academies Webcast. A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term Outcomes

Blood transfusion transmission of babesiosis

The most commonly reported transfused pathogen in the US.

More than 70 cases described with 10% - 20% mortality.

Transmitted by whole blood, Packed RBCs, platelets

Largely under reported, more suspected.

Gerber M, Shapiro, E Krause PJ, et al. J Inf Dis, 1994

Gubernot DM, Nakhasi Hi., Mied P , et al. Transfusion 2009

Tonetti I, Eder Af, Dy B, et al. Transfusion, 2009

Perhaps there are people out there who have been diagnosed with ME/CFS who have babesiosis?? Have you had a blood transfusion in the US???

That's all for now.

Treya : )

Swine Flu vaccination........

2011-01-08T13:09:00.004Z

Hey People,

Back in 2009 I wrote a post about the swine flu. Someone who has ME/CFS just wrote in the comment section under it about their recent experiences with the vaccination. I felt it may interest some people.

"I have had ME for 24 years. I got swine flu very badly last winter and was ill for 3 months, with severe symptoms. My GP advised me that as I was in a high risk group I should get a flu jab this year, which I did for the first time. Two days afterwards my symptoms started to flare up. By 4 days I had full swine flu. This has continued now for 3 weeks, with severe effects on my breathing. It is not just a flare up of my ME, it is a full renewal of the H1n1 symptoms in my immune system. I don't know how long it will take to recover. I am even reluctant to visit my GP as I fear the too familiar funny looks, and I expect them to be defensive and say it is a coincidence, and I have caught swine flu again. But following that logic why wasn't i immune from my first bout? I am sure that the cause is the jab, as I am also sure my condition is essentially an immune system illness. I find it incredibly frustrating that there is no clear advice within the medical profession on this situation. I regret taking the jab now and would not do so again. I am concerned that I will be ill for 3 months again, or even longer. I wouldn't have minded if the GP or nurse had discussed the conflicts inherent in my condition, what I resent is the lack or recognition of how a jab like this can affect someone with an immune system illness. "

I personally wouldn't get the vaccination for the fear of getting sicker.

Thanks a million to the person who wrote on my blog and shared their experience with us.

I hope you're all well...

Treya : )

A little tip

2011-01-05T21:34:00.004Z

Hey people,

Just thought I would share a little tip in relation to the computer an sleep hygiene. All of us with sleep problems know we are not supposed to be on the computer after 21.00... How many of us stick to that : )

Anyway, if I am on my computer after 21.00 I go to my system preferences and I turn my screen brightness right down very low. That's it! I'm sure some of you already do this, but I just thought I'd share that as it may help someone somewhere...

Night night..............

Treya : )

How to be sick book

2011-01-04T21:02:00.010Z

Here is a link to a video by the author of 'How to be sick'. I and many others I know are reading this book that is filled with wisdom and guidance for living with a chronic illness.

I tried putting the actual video up, but for some reason it just won't work. I've done it before, hmmm..

Anyway, here is link for any of you who don't know about the book.

Cape Town - Doctor recommendations???

2010-12-27T16:10:00.005Z

Hey people,

Just a quick post to see if anyone from Cape Town can help this guy Rory who mistook me to be from Cape Town. He is looking for a good doc from Cape Town. I think I have a few followers from Cape Town... Any suggestions anyone??? PLEASE SEE HIS COMMENT PASTED BELOW

"Hi Treya

I am a fellow Capetonian.

I am 29 and was diagnosed with ME/CFS 6 years ago, the first 4 years left me in a position where I could live a fairly normal life, although at a reduced level. However I have gradually declined over the years to a point where I am now bed ridden.

I was recently diagnosed with two forms of Rickettsia by Dr Jadin and prescribed with antibiotics. During the treatment I too experienced a similar symptom of extreme itching without any visible rash as well as severe twitching in my legs, both these were new symptoms which I had not previously experienced.

I unfortunately have stopped the antibiotics as I steadily declined throughout the period (8 months) even though I was retested and found that there had been a positive effect on the Rickettsia.

How is your treatment going?

Could you recommend a good Doctor in Cape Town as I have been living in the UK for the past 7 years>

Looking forward to hear from you.

Take Care and best wishes for the festive season."

Christmas has been ok. I'm down with a tummy bug at the moment... Fun times : )

Thanks in advance to anyone who can help.

I hope you are all ok...

Treya : )

New symptom

2010-12-22T13:33:00.004Z

Hey People,

This will just be a quick post. I've had a new symptom over the last few weeks. Itching... Intense itching!!! My back rash has always itched at times but this is pretty much all over my body with no rash. Its burning itching. The worse parts are my legs and it seems to get a lot worse a night. It has been waking me up and I have cut myself from all the scratching. I did some research and there is something called neurological itch... Something about mixed up brain signals, like what can happen with pain. I have also seen it related to Lyme. I'm wondering might it be a positive sign that some of my nerve damage is trying to heal???

Does anyone else experience this? If so, any recommendations for relieving it??? I'm guessing if it is neurological that the only answer is what I'm already doing, antibiotic treatment.

It's driving me mad... Even though I am already mad, hahahaaaaa....

I'd like to Wish you all a very Happy and Peaceful Christmas!!!!!! xxx

Over and out,

Treya : )

Video - Lyme Disease Destroys The Mind

2010-12-20T20:58:00.002Z

This video is a very honest portrayal of how Lyme can affect the mind

Video - Chronic Lyme Disease and CCSVI

2010-12-20T20:56:00.001Z

Very interesting video on CCSVI and Lyme disease treatment

A good kick in the ass : )

2010-12-18T14:53:00.006Z

You kick me

I stumble,

maybe fall,

maybe hurt,

maybe cry...

But falling is movement.

And that kick only moves me forward,

and then upward.

And the tears

wash away my pain.

Indeed maybe a kick was what I needed

THANK YOU

Time to dust myself off and get over the moaning people!

Treya : )

Behavior - Contribute if you can please : )

2010-12-17T11:53:00.014Z

Hey People,

I feel like I'm always moaning in my posts and I had a much more upbeat post in mind to write this week. However, I have had a very stressful week and I feel this one is important to talk about. I have been very on edge and down at times. There is probably a few reasons for this. First of all we were away on a family trip last weekend. It was very enjoyable but required pushing myself. Due to this, one has to put every once of their being into getting through. I was very obviously wrecked after. When I am running on auto pilot like this ANY type of stress CANNOT be handled. Actually I can never really tolerate stress... So any type of normal small argument is soooo overwhelming that I turn into a crazy person, kinda like I mentioned in my last post. I am not always like this. It's just when I am struggling to get through a situation and then something comes at me that I just can't cope with, like a small normal couple argument. So reason one for crazy behavior is exhaustion from weekend.

Reason number two was more of an issue thingy. A lot of the family that were away with us are around the same age and it highlights to me the things that I am missing when hearing all about their lives. One of the big things was finding out my partners sister is expecting her first baby. Firstly let me say that I was overjoyed for them. They are a lovely couple. Its just she is the same age as me and well lets face it, I probably won't be having kids of my own. I know that both Lyme and Rickettsia can be passed on to the baby. Apart from that with my health the way it is now I just couldn't look after a baby anyway. This is something that has been playing on my mind a lot lately. I know there would be other options but there is no point in me thinking about any of that until I am better. So I was feeling a bit sad inside about that.

Reason number three was more of a hormonal issue. As I've mentioned before I have a lot of hormone issues. Suspected PCOS. I've always had irregular periods, spots on face and they found multiple cysts on my ovaries. Anyway my hormone issues got worse after getting sick. My estrogen levels were very low so I am on estradot patches. I have to take them off for three days every month. Three of those days were this week and I was very on edge due to this.

All of the above stresses and my behavior were causing a lot of arguments this week. I was biting the head off my partner unnecessarily. Here is a perfect example. I went out with my mom the other day and overdid it as usual. ON arriving home my brain was in shut down mode and I was so tired that even a conversation could not be tolerated. My partner was just asking me question about my mom and what we got up to and I snapped saying "why are you asking me so many questions?". Totally unreasonable, I know. However when one is so tired in the brain normal questions can feel like torture!!

So it has been a very stressful week and a frustrating one. I know its not right to speak or behave in this way. I totally understand why my partner feels bad and I feel bad for my behavior. I also feel very frustrated as I just can't help it. I need to learn to communicate myself better when feeling unable for much. I have to work on that. So I have felt very depressed both from the situations and because I think I am a bit chemically depressed at present too. When these arguments happen I feel very alone and I don't always know how to explain things to others. I was talking to my Dad yesterday and well I really broke down as he knew I was upset and started asking me questions. I was trying to explain everything to him as clearly as I could but as all of you know it is very hard to be clear of what your saying when upset and also I just don't understand everything that happens in my body. This is the reason for this post. My Dad was trying to understand and he was asking do my blogging friends talk about experiencing the same problems. I said yes they do. However I think it is sometimes hard for people to honestly talk about their negative behavior. However I don't hear people talking about the lack of tolerance and outbursts and generally emotional confusion/struggling that much. For that reason to help me explain myself and these conditions more to my family I was hoping that my followers could contribute in the comment section about their experiences and thoughts on these kinds of difficulties and struggles with the illness. I don't mind how long or short they are or if its someone who has ME/CFS, Lyme or Rickettsia. It can be anonymous if you want.

Any help here would be much appreciated... The main thing is for my family to see that I am not crazy that a lot of these problems are linked to my illness and others have them too. Or maybe I am crazy and it isn't linked to my illness... Ha ha haaa... Of course as a young couple we need to learn to argue/communicate better. We are still learning how to live together.

That's all for now. Thanks in advance!

I hope you are all well...

Treya : )

Lyme Urgency

2010-12-05T16:59:00.012Z

Hey People,

I'll be finished my third treatment in two days. I haven't been feeling as good the last couple of days. I've had bad sinus headaches, fatigue, depression. I'm ok though. I've also had a kind of anxiety feeling. I don't even know if that is what I should call it. I've had it before when on treatment. It's not psychological anxiety. It's more physiological. Like a giddy feeling in my stomach and chest area. Kinda like how you feel if you are really nervous, except I have know reason to feel that way and I am perfectly calm in my head. I'm sure some of you will know what I'm talking about. Maybe it's related to the adrenals?

Anyway, this led me to do a little research online and I came across an article that talked about Lyme Disease and panic. It doesn't relate to what I talk about above as it talks about the psychological aspects of the disease. I was reading a couple of paragraphs and I just thought "wow", that is exactly what I'm like. I have copied and pasted the parts that relate to me.

"many of these folks are sullen, irritable, and, feisty. At the smallest provocation, they can go on a verbal attack. At times, they lash out with a stream of unedited hostility which comes straight from their subconscious minds. They justify this at the time, but sometime later it may seem to them, as it seems to others, like an extraordinarily strange over-reaction.

There are many Lyme disease cognitive symptoms that cause rushes of panicky feelings. The most typical is what I call "Lyme urgency." This is a psychological feeling which is related to a need to drive oneself to attend to tasks, combined with a feeling of concern if one doesn't act on every task at the moment that one thinks about it. What results is less overt panic at the time and more chaos in the long run. The distraction that one experiences from this compulsion leads to unfinished tasks and then exhaustion as one works longer and later to fix the chaos from all the interruptions. This, in turn, connects the panic to depression in many people."

Virginia Sherr, M.D.

Lyme and Panic Disease

The Human Side of Lyme

I wasn't always like this. This has helped me focus on what I want to work on in my therapy sessions. I want to try and work on my confidence. In terms of knowing what is 'me' and what is the 'illness'. Having gone for so long undiagnosed I was constantly questioning myself, blaming myself for various things––"why are you so lazy? why can't you get it together? Am I going crazy? why do I act like this?"––constant lack of understanding and confusion. I need to believe in myself, be gentle on myself, have the confidence to know that it's the illness that is doing these things. I need to try and iron out what's me and what's not... Easier said than done. My therapist didn't know me before I got sick so she won't know how much I've changed. We need to try and figure this out together. My fiance also didn't know me before I got sick so he can't really help me on this one.

So that's what I'm going to try and do. Is it possible??

Over and out people!

Hope you're all well...

Treya : )

Small improvements???

2010-12-02T13:16:00.010Z

Hey People,

I'm in the middle of my third treatment. I'm on Minomycin 100mg twice a day and Rulide (macrolide) 150mg twice a day. All in all I'm feeling pretty good. I have a lot of dizziness and balance problems, which must be the minomycin as I was told this can happen. In general feel a bit out of it in the head. My big toes have been going numb and tingling the last few days. I haven't had this before. My concentration isn't great and I'm have lots of twitching.

Apart from that I'm feeling pretty good. I'm definitely noticed an improvement over the last week and a half. I finally got rid of the never ending chest infection. My energy levels have improved a little. I'd say I'm back to how I was feeling in the summer. If you remember I said things got a lot worse over last few months. So this is all great. My nerve pains have improved a lot. My ear pain has gone and they don't feel watery anymore. They're all small changes, and maybe I'm just experiencing a good period as we sometimes do, but I'm choosing to be hopeful.

If you remember I said I was very happy a few weeks ago that my moods had been stable. I think I jinxed myself... Over the last three weeks I've been on edge and snappy and feeling very down at times. I'm feeling ok again now. I'm starting back with my therapist next week. I haven't been since before my holiday in August as I haven't been up to it. Also after I got engaged I decided that I should try and save all my money for a honeymoon and therefore not go back. I think I was feeling very conflicted about this as I find that support very helpful, and I wasn't giving it up for the right reason. If anything now that I have decided to take on a wedding I will probably be a bit more stressed at times. I sometimes find it so hard to explain my moods to loved ones as I don't understand them myself. So I decided to put my health first and go back. I feel for me it's an important part of my treatment. I still struggle greatly with acceptance of not being able to work, etc. I see people on facebook who I went to university with who have successful business now... Hopefully by going once a week I can get the frustration and pain out and then get on with my life and not think about it too much for the rest of the week...

My brother got engaged last week. So there is going to be lots of excitement and happiness in my family this year!

All is good people. I'm in a good place again. It's so encouraging that I'm seeing some small improvements.

There's lots of snow here in Ireland at the moment. It's funny to see how ill equipped our country is for snow. The country is coming to a stand still...

That's all for now folks!

I hope you are all well...

Treya : )

Dreams verses Reality...

2010-11-18T15:31:00.005Z

Hey People,

Dreams verses Reality. Ah yes, isn’t this one of the biggest struggles of living with a chronic illness. The main culprit being chronic fatigue! We all have the ability to dream and this is something that the illness doesn’t steal from us. While it is a beautiful thing and something to cherish, it also sets us up for disappointment time and again.

A perfect example of this is me getting engaged and planning a wedding. Something that encapsulates a diverse range of emotions. Whilst getting engaged has been very exciting for me, it has also highlighted how little I can do. I haven’t really been able to celebrate properly. Sure I’ve had celebratory meals with friends and family. But the amount of effort it takes to participate in such events means that I have been in survival mode. It’s hard to truly enjoy oneself when you have to push so hard. I guess what I’m saying is that it’s a huge mental and physical task to celebrate when weighed down by sickness. This then leads to frustration, highlighting how crappy my life really is. I’m not choosing to be negative at a time when I should be positive and joyous. I’m just simply saying that my illness doesn’t obey and go away so I can celebrate.

Most people feel light and free all the time, which means they can lightly and freely enjoy a celebration. Whereas when you have chronic fatigue it is a huge struggle to even listen to someone speak sometimes. Last weekend I was at a family christening and I was sooo tired. My partners aunt who I love was telling me a story and it was like I was on drugs and her face was just there moving in front of me and there were noises coming out of her – whawhowhawho….. That’s what I was hearing anyway. She was just talking and I was just nodding my head thinking I have to get out of here. That’s just an example I guess.

So back to my wedding plans which has again highlighted the whole dreams verses reality scenario. Its fair to say I have freaked out a few times. I booked my wedding venue last week. I am getting married 17 December 2011! It is going to be a very intimate affair of twenty six people, if even, just immediate family. I did a lot of looking at venues online before hand. Thank God for the Internet, for those of us with chronic fatigue!!! I also found my engagement ring online : ) Anyway, I’m having it in a private Manor house (have a look if you like) about 40 minutes away from where I live. My family get exclusive use for two days. So I went to see it last week with my parents and we booked it. I was probably out for six hours altogether. I had a complete meltdown when I came home when my partner started asking me about it. My brain was in shut down mode and I just felt so overwhelmed by the whole thing. I even said I don’t want to get married, as I’m just not able for all of it.

This is what I mean when I say dreams verses reality. I am looking at getting married as a welcome and happy distraction from my relatively depressing life. It’s a positive goal to want to achieve. Hopefully I will see some improvements by that time. It’s a cause for celebration for me and my family, instead of worrying about me. I have fun things to talk about with people now, instead of always feeling I have nothing but depressing things to talk about (for example, “so what have you been up to?”. Hmm let me see… I spend 90% of my time in bed. Should I make something up : ) )

Let me say my feet are firmly on the ground and I’m not just getting married so I can have a nice distraction. I’m getting married because we love each other very much and we have won the battle of the last few years and it has made our love stronger. We want to be partners for life.

So the dreams are part of the planning. However, the reality of it is that the participation of the planning is a big struggle for me. Most healthy brides to be find the year before very stressful, so for someone with chronic fatigue it’s hugely overwhelming. I have seen a few of my demons come out to play. For example my father has happily offered to pay for the big day and had always intended to, for which I am eternally grateful. But it gives me anxiety as I have already and continue to need his financial support for just living. This in turn highlights to me how much of my life has failed and causes great frustration about not being able to work and reach my ambitions.

So there you have it really. Dreams verses reality. The struggle of balance living with chronic fatigue and chronic illness. I am a positive person and I mostly grab on to those dreams and live them as much as possible, but I can’t avoid my reality. I guess I will have to look on this dilemma as another go at understanding where my life is today and to learn how to better live with my illness in a harmonious way. All in all I feel this wedding is going to be a positive thing for my illness. Lots of hopes, lots of dreams…..

That’s all for now folks. I would have liked that to be more coherent. But hey, it's the best I could do : )

I hope you are all well…

Treya : )

A weight off my shoulders!!

2010-11-05T12:18:00.011Z

Hey People,

I’m still on cloud nine following my engagement. I like things this way. That is, happy clouds as opposed to dark gloomy lurking heavy clouds… I finished my second week of treatment yesterday. This was nicely finished off by me collecting my engagement ring yesterday (on the left), which I looooove! It wasn’t as bad as last month. I was on Flagyl 200mg three times a day, and tetralycal 300mg twice a day. I was expecting it to be worse as I was put on flagyl last year following my Lletz procedure and I had a very strong reaction to it. Also I was feeling so awful the week before my treatment that anything would have been better than that. My doc said I had bronchitis again with pleurisy (you were right Joanne). So it was my lung that was causing the pain.

I haven’t felt very stressed or emotionally weighed down for a while now. I have been thinking about it and without a doubt there has been a significant weight taken off my shoulders since getting diagnosed and starting treatment. It has highlighted to me just how much of a burden the whole ME/CFS thing was. I am not saying for one minute that ME/CFS is not a real illness, because we all know IT IS. I guess the fact that it is a diagnosis by process of elimination, and by the fact that it is so poorly misunderstood, and because there are still some medical professionals who continue to dismiss it all equals a SIGNIFICANT amount of stress added on top of the illness itself due to the above. All of the above also unfortunately influence even our loved ones judgement on the matter. None of this is fair! I find it ironic that some health professionals suggest that ME/CFS has a psychological component when in fact this very thing is what can give the sufferer psychological issues. Certainly that was the case with me. The importance of being believed and taken seriously is HUGELY important, and I’m not sure they ever stop to think about this.

So have I seen a difference in the people around me since getting diagnosed and starting treatment? I think so. It would appear an easier thing for my family to accept, even though I still have the same symptoms I’ve always had. It’s just a different tag. However, perhaps I was so sensitive in this area, that now that I feel less burdened I’m not so sensitive and I’m not questioning if people do believe me, therefore they may still be the same as they have always been. All of this may not be true for all of you. But all of the above had a significant impact on me emotionally. So much so that it became deeply ingrained. Even after my diagnosis, and even after seeing Dr. Jadin I was almost waiting for someone to ring me up and say that a mistake has been made. For example I don’t get bad night sweats like a lot of people seem to do. Up until very recently this has been playing on my mind “maybe I don’t have Lyme or Rickettsia if I don’t have night sweats”… Silly really, as I actually do sweat at night, but not excessively. Anyway, you get the picture. I will say that now at this point in time I BELIEVE people!!! I am gaining confidence.

All of this of late has been easier as I haven’t been having any major mood problems. June and July were probably the worst I have suffered with moods ever, scary times.

At this point I am in very high spirits. Now I have to figure out how to keep things this way, he heheeeeee…

That’s all for now.

I hope you are all ok…

Have a good weekend!

Treya : )

Good news!!

2010-10-27T10:34:00.010+01:00

Hey People,

Obviously I've been meaning to write a post, but I just haven't really been up for it. I have another bad chest/respiratory infection. When I had it before I went to Spain I was put on 200mg of Doxycycline a day for a week. It went away for about 5 days and then it came back. Then when I finished my first treatment about a month ago it went away for about a week and a half, and now its back. Its a persistent little bugger, I tell ya.

I start my second treatment this Saturday and I'm actually quite eager to get started because of this chest infection. I've just been filling out my symptoms form that I have to fill out after every treatment. There isn't any significant change. Some things have got worse. My pain was the worst its ever been for the month of September. It has improved slightly.

You might remember me saying I started to have pain in my lower spine after Christmas. Well, this has got continually worse and its in my hips and down my left leg. In Spain I bought a childs pokemon rubber ring to sit on which was very helpful. As you can imagine I wasn't exactly flashing it around... When I got home I set out to buy a proper medical one. They are actually really hard to get here in Ireland. So for that reason I will put up a link to the site I bought it from for any of my Irish followers who may need to get one Here is Link

I don't really seem to get good patches here and there anymore. I'm sure this is just part of the treatment process... I got my bloods done last week and I will be interested to see if there is anything new since starting my treatment. I will be having them done in between each treatment. I've been getting a new pain that is worrying me. It is around the left rib cage about mid way down. It is mostly at the side, but has been at the front and back. I hope it isn't an inflamed organ or something. I guess it could be coming from my lung due to the infection.

Now! Moving on to my good news............ I got engaged last Friday! It was a total surprise and I wasn't expecting it at all. God love my partner trying to find the right time to do it, as I spend 80-90% of my time in bed now. I shall tell you the story. I woke up feeling very ill on Friday morning and he was out somewhere. When he got home he wanted me to go out to lunch in a hotel nearby that is by the sea. I said no, and that I wasn't up for it. He had intended doing it the following week but realized that I was on treatment then. Between one thing and another the next few weeks weren't suitable and at Christmas he thought my brother might ask his girlfriend. Anyway, he was very persistent about me going out for lunch and I thought he was being very inconsiderate of how I was feeling. As I feel guilty for our lack of social life I decided to make the effort.

When we got to lunch and I saw the menu I got into a bad mood as I couldn't really eat anything on it due to my strict diet. Not going so well for him... On the way out he asked me to walk over to the beach with him. I said "NO! I came out for lunch and that's that I'm going to the car". In the end he got down on one knee beside the car door. Not how he imagined it to be. I obviously said yes. It has been such a welcome distraction from this illness. Happy happy happy as can be!!

So that's my good news amongst all the sickness.

That's all for now.

I hope you are all well...

Treya : )

Belgium & Treatment

2010-10-14T12:07:00.017+01:00

Hey People,

Things are finally settling down after all my traveling. Things went very well over in Belgium, except the air traffic control going on strike the day we were leaving. This meant all hotels were full and forced us to make a very tiring road trip...

The name of my doctor is Dr. Cecile Jadin. She grew up in South Africa, then moved and worked as a doctor in Belgium, and now lives back in South Africa. Her father was a pioneer in the Rickettsia field. She became a surgeon and then eventually started working in the same field as her father.

Here is a link to one of her sites. She works with a lot of people who have ME/CFS.

She has been very successful in treating people like myself and people with CFS. I am going to be buying her book, which can be found at the above link. Based on what I know about her so far I would strongly suggest anyone with CFS to read it.

I met lots of people there in the waiting room. Most of them have Rickettsia (there are many different types). There was one other girl like me who had Rickettsia and Lyme. One lady there from England (who caught Rickettsia in England she thinks) was bedbound and in a wheelchair three years ago. She is now significantly recovered. No wheelchair in site! She is still on treatment though. There was two people there who were on deaths door when they first started seeing her; one with liver failure and one with heart failure. Both are now well enough to work!! They are still on treatment.

People come from all over the world to see her. There was even people there from the US. She is more knowledgeable about Rickettsia then most docs in the US. So many of the stories where the same. It was great for my Dad to meet and hear other people with the same stories. He couldn't believe how we all described things the exact same. Seeing this he can't understand how the medical world doesn't take people like us more seriously.

She was a very nice lady. She basically said my case was pretty straight forward. She could not understand how I wasn't taken more seriously and treated after suddenly getting sick in India. It is the India part that made her say straightforward. I obviously agree with her!

She was fascinated with my back rash, which had got a lot worse since putting photos up here a year ago. There was an American doctor in the room and she said it looked like the spotted fever they see in the US. One of the Rickettsia I have is a spotted fever so I guess it makes sense. As I have all different marking she said some are probably from die off. She took some photos of it anyway.

She said my heart was making a clicking noise and that it is suggestive of some damage. However she couldn't say that for certain as it was her first time hearing it. As you know I had heart tests a while ago which picked up on a couple of things, so I don't know if it is just one of them. My doc over here said it is suggestive of Mitral Valve prolapse, I think? which was not on my cardiologist report. Anyway, we can check it again in the future.

And on to her treatment... Well, Rickettsia and Lyme are treated with the same antibiotics which makes things easier. She doesn't believe in IV as she thinks it is to dangerous for the liver. She also doesn't believe in continual antibiotics, as she feels they will just learn how to become resistant to them. Instead she treats you for one week each month on very high doses. Therefore you give them a huge kick in the ass and then hopefully the body can do some of the fighting for the other three weeks, then Bam!!!! again with different antibiotics at high doses again. Each month I will be on two new types of antibiotics.

I finished my first week last week. I FELT LIKE CRAAAP on them : ) I was so weak and shaky that I couldn't stand out of bed for long. I was on 1200 mgs a day: Doxycline 200mg a day & Ciprofloxacin 1000 mgs a day. I also had to have an injection by my doc every morning of Neurobion to assist the body in killing off what has been aggravated by the antibiotics. I also had to take a nexium before breakfast and acidophillus thingy at midday. Oh yeah, also I was told to drink slimline Indian tonic water to assist with absorption. One without aspartame as she doesn't like us taking that. The only one I could find without aspartame is Tesco's on brand. Also I had to take a hot bath 40 degrees C each night for ten mins with two tablespoons of Epsom salts in it.

So.... on to the NO's: NO caffeine, NO sun (not a problem here in Ireland), NO dairy products, NO smoking, NO getting pregnant, NO sugar (no giving in ever, as they feed on it), NO unpasteurised milk or yoghurt's, NO alcohol, NO close contact with paint, fertilizers and pesticides, NO flu vaccine, Gamma globulin, Beriglobulin and Cortisone, NO boiled water if it has not been filtered.

CAUSES OF RELAPSE: Operation, Trauma, Motor accident, Traumatic fall, sugar intake, vaccine, dental work(do not remove fillings), change of seasons, travelling, new pet.

Dr. Jadin does have some other sites with research on them if you do a search online. Also I think there may be some kind of contact details on one of these sites. I did hear that she isn't taking on anymore patients at the moment. Whether this is true or not I don't know. I personally don't feel comfortable giving out her contact details myself. As I said though, seek and you shall find!

So there you have it people!

Tired now.

Hope you are all well...

Treya : )

Chlamydia Pneumoniae article

2010-09-26T17:18:00.004+01:00

Hey People,

Here is an interesting and informative article to read on Chlamydia Pneumoniae for which I have tested positive. I think anyone with ME/CFS should consider testing for it.

That's it for now. I'm heading to Belgium tomorrow.

I hope all of you are well...

Treya : )

More Results!!!

2010-09-03T10:01:00.009+01:00

Hey People,

Thanks for your welcoming comments at my last post. They are always much appreciated! I have a bad respiratory infection at the moment so I'm afraid the enthusiasm I had in my last post has vanished for now. I seem to be getting more and more infections lately. This is the third chest infection I've had in the last few months. I'm not feeling down or sorry for myself, just heavily weighed down with sickness right now. However, I'm going to give you a quick update as promised.

As most of you will know, I tested positive and was diagnosed with Lyme Disease a few months ago. It has taken until very recently to get the ball rolling in relation to a specialist and treatment. I have an appointment on September the 28 in Belgium to see a doctor. I will not be giving her name unless she says its ok after my consultation. I have had to have lots more tests done before I see her, which had to be sent to South Africa. Here is the list of tests she asked me to have:

Mycoplasma, Chlamydia Trachomatis and Pneumoniae, Q fever, Bilharzia, Troxoplasmosis, Cardioplipin, CK, Rickettsia.

The doctor's team specializes in Rickettsia and has very highly developed and specific way of testing for it. I also had to have to usual battery of tests done here and sent over.

I have come back positive on Mycoplasma, Chlamydia Pneumoniae , Rickettsia Mooseri and Rickettsia Conori. The rest of them were negative. So there you go... As you can see I have put links to information on each of the above. It would appear that the same tick that gave me Lyme gave me Rickettsia. Although one of the Rickettsia is transmitted from a flea, so I was probably unlucky and got bitten twice. Both of the Rickettsia are of Asian origin confirming that it was indeed India where I was bitten. Which of course I've always known, as I had a very sudden onset over there.

I would heavily bet that these respiratory infections I keep getting are caused by either Mycoplasma or Chlamydia Pneumoniae, or both.

My heart tests didn't show up anything major. I have low blood pressure, and a slight sign of damage from an infection. There was one other thing that was abnormal, but I would have been born wit that and I may see some problems with it in the very distant future.

There you have it! Five years later and I'm finally finding out what the hell happened to me. I just wanted to update you on all of that for now. I'm going to concentrate on getting over this infection for now. My parents are bringing me to Spain for a small holiday in 9 days, so I REALLY hope I am feeling stronger for that. Then I arrive home on a saturday and fly to Belgium on the Monday. My Dad is coming with me, and obviously financing the trip. He will also hire a car so we don't have to worry about taxi's walking, etc.

I hope you are all well...

Over and Out for now!

Treya : )

Ready to go again!!

2010-08-28T18:18:00.006+01:00

Hey People,

I've finally got myself together and I'm eager to get back to the blogging world. As you can see I've changed my template which I really like. Here begins a new chapter in my life and my journey through this illness. On a metaphorical level I feel the multicolour of the books represent the colourful nature of this journey. The books certainly represent the huge amount of research and knowledge one has to acquire in order to fight for their health in the mist of these illnesses.

I have so much I want to talk about. However I'm keeping this one short and just want to say I'm back!!!!!!

I will be writing again in this coming week.

I hope all of you are keeping well...

Treya : )

Time Out.......

2010-07-12T17:14:00.007+01:00

Hey People,

This is just a quick post to check in. I have found myself extremely emotionally drained of late. The stress of the last few years is catching up on me. That coupled with erratic mood problems related to this illness are a bit much for me at present.

I just haven't felt like blogging which is strange... I think I'm just a little numb and have no desire to talk about my illness. I'm taking some time out this week to really pamper myself and rest. I've got a cheap spa and hotel deal an hour away from here where I am going to go and stay for a few days.

I am thinking of going on antidepressants for a while as the inconsistency of my moods is just to hard to live with at the moment. I will be back with my doctor next week to discuss this.

There is a doctor in Belgium currently reviewing my case. I hope she will get back to us soon and I will know if she is going to take me on or not. I saw a cardiologist last week and he sent me for a stress test and an eco(this followed problems I've been having since two recent chest infections, which were viral). The stress test was tailored for me and I didn't have to do any running so it went really well. Today I'm feeling physically quite good so I was happy about that.

So that's it for now. I will be concentrating on building my emotional reserve back up. Hopefully I will be back more regularly to the blogging world soon.

I really hope you are all keeping well...

Treya : )

Dr. Weir talk - points covered

2010-06-10T12:20:00.015+01:00

Hey People,

I was at a presentation on May 29 in Dublin by Dr. William Weir a UK specialist who has 25 years experience with ME/CFS. I have been meaning to write a post on some of the main points he covered for those who were unable to attend since then.

Sleep hygiene - He talked about doing some simple things that can help promote good sleep. Don't be on the computer or watch tv too late. I think he said after 8 or 9p.m. When we are looking into these bright lights the brain still thinks it is daylight outside and therefore doesn't switch to the normal night time mode chemically. For this reason all lights should be switched off early.

He also said for some reason the sleep we have before 12 at night is more beneficial to us than after. So it's good to try and get in at least a couple of hours before 12.

He says for those who need it he prescribes Melatonin and in some cases low dose Amitriptyline.

Vitamin D - He always tests these levels and says treatment in those with low levels can see some real benefits.

Essential Fatty Acids - He talked about the work of Professor Basant Puri in this area and spoke positively about it. I have personally read Professor Puri's book and I also took the doses of VEG EPA that he suggested for two years. In fact I met with him once myself. His book is worth reading - review here.

Meditation - He talked about the proven physical effects of regular meditation and suggested it. I have been meaning to do a post on meditation for a while. I will try and do it next week. I read a good article that give some good websites to look at. I have read that Dr. Weir has been mediating for years himself.

Reiki - He said he is very open to the holistic approach and spoke highly about Reiki. He did say he doesn't have much faith in holistic medicine in relation to ME/CFS.

PACING - He stressed the importance of pacing.

He spoke at length about the two schools of thought - those who believe ME/CFS is a psychological illness and the others who believe that it is a physical illness - this is the side Dr. Weir falls on. He talked about dogma's and how the psychological school of thought are just a group of people that 'believe' something and that they are ignorant.

He spoke about Parkinson's and Syphilis which were both thought to be psychological illnesses in the beginning just because science didn't have the answers for them.

Finally, he spoke about the past and how Descartes said mind and body were separate and how this has negatively impacted medicine. He then spoke about how this has changed and the modern world sees the mind and body as one and the medical world is starting to see things this way.

So that is all I can remember people. I hope it has been in some way helpful.

I hope you're all well...

Treya : )

Recharging!!

2010-06-01T16:54:00.010+01:00

Hey People,

My doctor is currently in the process of finding me a specialist abroad. It is proving to be a slow process for now. I find it interesting that all of this has happened at this time on my journey of ill health. After a very tough year; one with multiple rainbows of emotions, I had come to a place where I was of the belief and had accepted that possibly I was influencing my ill health in some way... I was opening my arms to this idea. For me personally having an illness like ME/CFS––which has an association with 'psychological' components––has meant that I've always had a niggling question in the back of my head as to whether I was the cause of my illness. I'm sure a lot of you can associate with this. I was at a really good place of acceptance; with this I no longer felt the need to talk about my illness, trying to get people to understand how debilitating it can be. I was enjoying getting on with my life as much as possible, and thinking of it as little as possible.

So as I sit here in limbo, awaiting my journey into the world of Lyme treatment, I'm feeling kind of numb, I think... I'm finding it hard to believe it until I actually start treatment. I'm feeling very drained emotionally and mentally. I guess this is probably due to letting go. When you are fighting to be heard and believed for so long it takes a lot of energy. Now that I have breathed out a sigh of relief with the new diagnosis, I feel kind of emotionless about it all. I guess what I'm saying is I'm tired, very tired and I don't feel like I have much fighting spirit left in me. I'm very aware that I need to find the resources as the journey ahead is going to be equally as challenging, but in a different way.

I'm still in a place where I don't really want to think about being sick or spend any time talking about it. I think this is why I haven't been blogging much lately. I'm just don't really want to talk about being sick in anyway. I'm just speaking with honesty about how I'm feeling right now. As everything is impermanent––so will be this feeling, which isn't necessarily a bad thing, at all. It's just another part of the journey.

I guess really what I'm saying is that it kind of suits me for now that the process in starting treatment is moving slow. It gives me time to rebuild my fighting spirit for the next battle : )

That's all for now folks.

I hope all of you are well...

Treya : )

Fight or flight response

2010-05-13T15:49:00.014+01:00

Hey People,

As I mentioned previously I am researching stress at the moment. My main reason for starting all of this was because of how I was reacting to stressful situations. You know what I'm talking about here; the tiniest bit of stress=complete overreaction and breakdown........ This can be very embarrassing and difficult to explain to others, especially when we don't really know what's going on in that moment either.

It all goes back to the animal instinct, like a deer being chased by a lion. The same thing happens in humans when they feel threatened. The problem with ME/CFS is that it is said that the body is stuck in an alerted state anyway. Then when we experience the smallest amount of stress, the body already being on alert goes straight on in to fight or flight response.

Here's a little bit of what happens to the body during the stress response(fight or flight):

"The core of our stress response is built around the fact that your muscles are going to work like crazy.
Therefore, the muscles need energy right now.
One of the hallmarks of the stress-response is the rapid mobilization of energy from storage sites and the inhibition of further storage.
Glucose and the simplest forms of proteins and fats come pouring out of your fat cells, liver, and muscles, all to stoke whichever muscles are struggling to save your neck.
The delivery of all this mobilized glucose sets about the increase of blood pressure, heart rate and breathing. All of this is done to transport nutrients and oxygen at greater rates.
During the stress response, the body puts a halt to bigger jobs(less urgent) – digestion, growth & reproduction
During stress, growth and tissue repair is curtailed, sexual drive decreases in both sexes”.
Immunity is also inhibited during the stress response",

Robert M. Sapolsky,

Why zebras don't get ulcers

So, a few things that are important here are:

Now I know why I personally freak out, and feel like just getting the hell out of the situation is–– because all that energy has been taken from other parts of my body and into my arms and legs - flight!

Also we can see why one feels so uncomfortable when the stress response takes hold.

Lastly we see how the body holds off all those bigger jobs for the time being. This is very bad for the body when one is experiencing high levels of stress continuously, which is not uncommon when living with such a crazy and confusing illness.

I'm personally really trying to work on not getting too stressed when I can. Not just for how it must affect my body, but also for how much it freaks me out when the smallest situation can set me off for the day, which inevitably makes me ill.

When I'm aware what is taking place in my body at these times, it helps me to understand the situation better. It has also been very beneficial for my boyfriend to know, since he is the one who gets to experience it at its worst when we argue!

I would have liked that to be more coherent. My brain isn't working properly at the moment, so it will have to do : )

Thats all for now folks.

I hope you're all well...

Treya : )

Test Results!!!!

2010-05-11T18:30:00.003+01:00

Hey people,

This is just a short post. My results have come back from IGENEX. I have tested positive for current active Lyme Disease. My doc and I were a bit confused by the results so I emailed IGENEX and asked for a written confirmation. They said my results were 97.5% specific for exposure to Lyme. I got 6 bands on the IgM. Of course we all know that the final say has to be a clinical one, for which I've been showing signs for 4 1/2 years. But I will have to go see my doc again and sort things out from here. How exciting to have confirmation of my suspicions! Now for the difficult plans of doctors and treatments ahead...

I hope to write again this week.

I hope you are all doing ok...

Treya : )

Anticipation??????

2010-04-22T15:23:00.014+01:00

Hey People,

In my post last week I said that I was starting to look at stress and stressors. I am on a mission now to understand the whole world of stress - stressors, biology, humans and stress, mind body and stress, fight or flight.... and so on.

This is all going to take time to work through. As you know I have started this by going back to therapy, but also I am trying to truly learn how to rest/relax deeply, instead of just intellectualizing it and not fully following though with it - hence all the research. This is one of the main reasons I haven't been blogging as much lately, or even writing comments on peoples blogs (although I have been reading them), or sometimes not replying to comments on my own; I've realized that I have been doing too much - generally pushing all the time.

I intend on writing a lot about this subject over the next while. So, to get started - a little biology : )

Homeostasis:

"The body has an ideal level of oxygen that it needs, an ideal degree of acidity, and ideal temperature, and so on. All these different variables are maintained in homeostatic balance, the state in which all sorts of physiological measures are being kept at the optimal level. The brain, it has been noted, has evolved to seek homeostasis.

A stressor is anything in the outside world that knocks you out of homeostatic balance, and the stress response is what your body does to reestablish homeostasis.

But when we consider ourselves and our human propensity to worry ourselves sick, we have to expand on the notion that stressors merely being things that knock you out of homeostatic balance. A stressor can also be the anticipation of that happening".

Robert M. Sapolsky, Why Zebras don't get ulcers.

Now this is just a little something to get started. I could go on and on, but if I do I will end up collapsing in to bed, which is what usually happens after I write a post and ignore the signs my body is giving me, and I'm trying to change all that!!!

Quickly, back to the quote. The obvious question arises; What kind of anticipating do I do that can be seen as stressors????? This is an area of the physiological process/goings wrong that I may(most certainly) can do something about, whilst I'm waiting to get allllll the rest sorted out. A good example might be what is involved in thinking about traveling alone tooo....., anywhere really for me - standing around in airports, noise, etc. As you all know the list goes on. So begins the process of becoming aware of how my 'anticipatory thoughts' might be adding to the whole problem with this illness.

In my next post I want to talk about the 'Fight or Flight response'. And, we all know the craziness surrounding where this has been stuck on in us with this illness. For example quickly to mention, just because I put up that post about constipation yesterday. Did you know that during the stress digestion is inhibited! There is no time for that - the body feels that it has more important business to attend to......

That's all for no folks. Must dash.......

Hope you're all well...

Treya : )

P.S. Awaiting results from IGENEX for a lot of different tests I got done. Sent my bloods there two weeks ago. I'm not holding out for anything.... If something does show up, I shall be pleasantly surprised!!

Toilet relief.....

2010-04-21T13:04:00.004+01:00

Hey people,

I found this last week. For any of you who may suffer from constipation - this may help...

I have tried and tested the technique myself. It really helped on some occasions, but not always.

Anyway, I feel it is worth putting up. Some of you may find it helpful.

I hope you're all doing ok...

Treya : )

Self-Administered Colonic Massage

Taking the plunge.........

2010-04-15T16:46:00.013+01:00

Hey People,

The wheel is turning again, and once more I find myself at a place of change. I've found myself at a place of greater awareness, a place where awareness of myself and my life is needed. Whilst there are still many questions unanswered about my health, and still many more investigations to be done, I find myself questioning other parts of my illness that I perhaps can change a bit for the better?? So the big 'issue' that I find myself pondering–– is stress, and it's unbelievably tangled web in relation to this illness and life in general. The last few months have been very stressful for me. Why??? `probably this is a natural part of the journey, but there has been no doubt some triggers involved. Feeling really well at Christmas, to crashing badly and being very sick––to turning thirty, and snowballing from there really. I guess I really thought I would be better by now, and I kinda freaked out when all of the above happened.

I feel that there are many elements to this illness: peoples reactions, emotional support, financial problems, relationship issues (friendships, family, etc), loneliness, loss of Independence, etc, that are constantly pushing buttons that 'we' don't want pushed, or have never had pushed.

I read something the other day that I feel is very appropriate to what I feel one experiences when living with this illness, and which I'm sure is true for many difficulties that are 'forced' upon people in life,

"You can never tell what people have inside them until you start taking it away, one hope at a time"

Gregory David Roberts. Shantaram.

So basically, I feel that many of these issues (surrounding ME/CFS) I find myself having to deal with are in fact triggering issues that go way back. Things that I don't understand about myself. It's scary as hell!!!!! There are things coming up from 'inside'. This is something that I feel is only natural, and that would happen to anyone in this position, but it can be VERY VERY confusing.

The thing is that I don't have anywhere to hide anymore. I have to get to know myself inside-out. So with that, I decided to go back to therapy. I went for the first time when I relapsed a year and a half ago, but stopped for financial reasons about 7 months in. I need to learn more about what is triggering what with me. What am I having to deal with now psychologically that is also triggering things deep within my subconsciousnes??????? Yes people, I'm ready to go to the scary place... If it means that life now can be made any less stressful, and if it can help with my recovery the I am ready. Nothing major has happened in my life. But every one of us has some kind of issues. I reckon a lot of my issues will be linked to me being a very emotional/open/individual person living in a thick skinned, sheep-like world. A square living amongst circles.....

So that's it for now. I'm taking the plunge!!! I've already had to two sessions, and I feel it has been a very positive decision. It has been SO good to talk to someone, to be truly listened to.

This is a big turning point I hope : )

I hope you're all doing ok...

Treya : )

10 things about me

2010-03-29T18:33:00.021+01:00

Hey People,

I've been pretty inconsistent with my blogging lately and it's been irking me. I had a weekend away with friends which took lots of my energy and then a wedding for which I took the week before for total rest and the week after for some much needed recuperation. All went well and my energy wasn't too bad for both. However, I found all the going very stressful––being constantly around people. Most people don't know how much energy it takes to just talk to people (most people assume it's just physical fatigue), being around people constantly can be extremely draining and emotionally stressful for ME sufferers.

To move on... I received 'The Sugar Doll Award' from a fellow blogger called Forgetful girl a few weeks ago. Thanks again Forgetful Girl!!! The reason for the Award is so people can show appreciation for other bloggers and whoever wins has to share ten things about themselves, and then pass on the award to whom ever you wish. I've missed a lot of these blog awards over the last few weeks and haven't really been able to follow other blogs to read other peoples lists. Anyway, here goes, 10 things about me:

1. When I die I would like to come back as a bird. Why? I've had a recurring dream for as long as I can remember that I can fly. It's an amazing dream and very realistic. I really feel that I know what it feels like to fly!!!

2. My favourite band is Pink Floyd. That music was made for me......

3. My claim to fame is: Sean Penn reciting an Irish poem to me in a bar in Australia about 12 years ago.

4. I am RIDICULOUSLY sensitive and very deep–not by choice, just born like this. This can make life challenging. But I am mostly grateful for these qualities. It also means I am very sensitive towards other peoples feelings––to a fault...

5. I can't do small talk––I don't have the ability to be false. I guess this comes from being a very open person (I'm not one of those people that is blunt though. I can hold my thoughts to myself if I feel they may be rude).

6. On a lighter note my weird and pointless talent is: I can do the fu%k you gesture with my right foot. As I said pointless. But I think its funny. Try it. Bet you can't do it as well as me. : ) And, don't go picturing me now, to be like Shrek because of my ugly feet...

7. My favourite items of clothing are my small black leather jacket and my brown Suede biker boots. It's sad to say, but I would be very upset if anything happened to them. OH I'm sooo materialistic : ) Oh and my new badges. I love them... That's them on the right.

8. My favourite comfort 'thingy' is my hot water bottle. It comes almost everywhere with me and always has!

9. My most memorable, amazing memories/adventures that I've had are travelling around Vietnam on my own at 21 and living in a little village in the Himalayan foothills when I was 24. Definitely the highlights of my life. I really hope I can do things like that again.

10. My favourite quote is: "Be thine own palace, or the world's thy jail", John Dunne

That's it people. I enjoyed that. Beats the usual heavy/emotional content. Although I am still wrecked and shaking all over with weakness. Rest time...

The people I would like to pass on 'The Sugar Doll Award' to are:

Upnorth

and

Joanne

I've know a good bit about other people who's blogs I follow, except these two I think. So here you go girls. I will notify them on their blogs, as I am supposed to.

That's all for now people, I'm wrecked.......

Hope you are all well. xx

Treya : )

ME/CFS DOCUMENTARY TO BE MADE!!

2010-03-23T19:42:00.004Z

"People are suffering. But they are being told it’s all in the mind. Our aim is to investigate ME further, to put the plight of an ME sufferer in the public’s consciousness and to encourage further research and health policy reform. We hope to spread the word through this website which will have videos and podcasts on ME, short virals on the ME situation delivered multi-platform, a TV documentary aimed at a prime-time audience, a worldwide theatrical release and a docu-drama dramatizing an ME sufferer’s struggle, based on the novel “The State of Me,” by Nasim Marie Jafry.

"Confirmed Interviewees, but not limited to:
Dr Ellen Goudsmit : ME Association advisor on psychological issues. C Psychol FBPs

Dr John Gow : Head of ME research Glasgow Caledonian University

Professor Malcolm Hooper : B Pharm. PhD. MRIC. C Chem

Nasim M.Jafry : Author

Dr Sarah Myhill : Largest list of patients with ME in the UK.

Helen McDade : Retired vetinerary surgeon and carer.

John Sayer : Chairman of ME support Norfolk .

Dr Charles Shepherd : Leading medical spokesman for British people with ME

Annette Whittmore : founder of the Whittmore Peterson Institute for ME/CFS research, USA"

FIND OUT MORE HERE!!

Thyroid talk

2010-03-08T14:32:00.015Z

Hey people,

I am not as good as I was last week. I have been very tired over the last few days and I have a very sore throat and more chills than usual. I think this is the ENT infection I've had for the last couple of months lingering. It appears to be manifesting a bit differently each time. I still have swollen glands behind my ears. They've been there for about three months now. This is why I believe that same infection has been lurking around. I think I probably did too much last week which I'm sure has contributed to this. I really want to try and get out of the "push crash cycle", if that is even correct? Am I sometimes getting sick from doing too much or is it unpreventable infections coming and going? Actually, I think it's a mixture of both and I don't know if either can be controlled any further than what I'm doing. However, I will look into this further soon. First I have things to do.... He heee : )

I was at a talk by a woman from the US called Dr. Gina Honeyman, who is a chiropractor and a respiratory therapist last Saturday. She does some work with ME/CFS and Fibromyalgia patients. As I wasn't feeling great and my concentration is so bad at the moment I didn't remember everything she talked about. I wrote down some points. I also found the presentation very fragmented. She says she has a large success rate in helping people significantly improve.

The young Irish woman who arranged the talk has ME/CFS. She had a slow onset and was a student when she became ill. She spent some of that time bed ridden. She put on four stone, her hair fell out, was in a lot of pain and lots of the usual symptoms. She had been to many other doctors specialists who were of little help. She is a chiropractor herself and I think this is how she came into contact with Dr. Honeyman. To cut a long story short Dr. Honeyman has helped turn her life around and she is significantly improved now.

I can only talk about my take on the whole talk and it may differ to others. Dr. Honeyman is largely concerned with inadequate thyroid regulation. She says that the standard thyroid test doesn't tell us if there is a thyroid problem and that we need to do a range of tests. Many doctors will move on if a thyroid test comes back normal, even if the patient is presenting with symptoms of an inadequate thyroid, for example weight gain. Also a lot of doctors won't even do the test if the patient is slim. Slim people can have inadequate thyroid regulation too.

Dr. Honeyman said that the TSH test is worthless if the information is not used appropriately. If it is used appropriately then it is a good test. She said we need to test how we use the thyroid hormone at the tissue level. She went on to say the problem may lie with the thyroid receptors and where the antibodies are being formed. She said test usually show that thyroid hormone resistance is normal. But the patient is showing symptoms that say otherwise. She said it is very important to measure the metabolic rate ( a test that has been around for years). This is controlled by the thyroid hormone. She measures lean muscle mass, questioning "can it support" their metabolism?"

The tests that she said are important are:

TSH

T3 free

T4 free

Thyroid peroxidose antibodies (very important test)

Thyroglobulin antibodies (very important test)

Dr. Honeyman said that once and if you find out you have a thyroid problem, that there are over the counter products that can be purchased and that are very helpful. I didn't get the names. She said that they are only to be used if a thyroid problem has been found.

She also talked about adrenal issues. The main point she stressed about this in relation to cortisol levels was that the only accurate and good test for measuring these was the 24hr saliva test. I was surprised that a lot of people said they're doctors don't even do or know of such tests, something which she confirmed. My doctor, Dr. Magovern had done all of this with me. We send the tests to the UK. So basically, I personally didn't learn a whole lot that I didn't already know. Although I feel there were a lot there who did really benefit from it. I felt that Dr. Honeyman was just another professional who felt very passionately about HER hypothesis, something I took with a pinch of salt. She failed to talk about infections and their part in these illnesses. I do believe the endocrine system is a big part of the puzzle, but a PART of the puzzle at that.

I must say a big THANK YOU to Louise Marry, the young women who organised the talk. I think it helped a lot of people. I will be investigating and doing further research on the whole issue of thyroid hormone and its role in the body myself.

One very simple and useful piece of advice that Dr. Honeyman gave: was to go out and buy a good human physiological book and learn how the body works and how all the systems are linked.

That's all for now people.

I hope you are all well...

Treya : )

Grounding

2010-03-01T12:39:00.031Z

Hey People,

Last week saw my health begin to go up hill once more. I've been trying to get my head around all of this lack of ground in my life. This once again has had me thinking a lot about ‘ground’ and what that is or means to me?? The wiser part of me knows that 'life' essentially is groundless in nature. The thing is that for centuries we have been working at cementing a ground under ourselves –– to make us feel safer in this groundless world. I've touched on this before. I guess this is the problem that I find myself constantly trying to solve whilst living with this illness.

By groundless I mean that we live in an unpredictable world, one filled with uncertainty. Yet, we are born into a world that teaches us to find a ground for ourselves through structure (school, work, identity, etc). Building a structure on an unstable ground... Hmmm... What a strange thing to do? It's the BIG control issue. The great escape from reality. We like to develop different forms of escapism. We like to try and control things that are basically out of our control. Control our destinies??

This is where I see a lot of positives being born out of this illness. Learning that the control thingy is really just an illusion that we have dropped ourselves into. Or onto should I say; a ground built from illusion! The very nature of this illness is that it is constantly changing– Like the weather. Maybe that's not the best analogy... I'm thinking of the Irish weather, as it is very unpredictable, very changeable and unreliable. Anyway, you know what I mean. We are not in control, our illness is. So I've been trying to embrace this whole issue of not being in control. Living in the moment, not knowing what the next week, hour is going to bring. If I try to live life like this then hopefully I will be able to cope with life in general better; after all we never know what the future holds anyway, even the healthy people. Life is in control of us. So this illness has taught me about the realities of life, its unpredictability and it's groundlessness. And most importantly I’m aware of the illusions we create. Nothing is permanent with ME/CFS. I’m being forced to life with my eyes wide open.

So I have managed to grasp this one and have been aware of all of this for some time now. Life is essentially groundless and I'm living with an illness that doesn't allow me to build a ground of illusion. Great! Life is going to be a breeze, everything is in sync now, right??? No... I've figured out the A and the Z of this problem, but I'm still missing all the letters in between! Being aware of this really helps me when I am really not well. But years of working away at building 'my' structure means that as soon as I am starting to feel well I'm off.... Hi ho, hi ho, la la lala la la... Building away like everyone around me–perfectly conditioned! By this I mean, wanting to achieve something like my course for example. Be part of life like everyone else. Participating… Not feeling left out.

It would appear that I can’t escape this ‘ground thingy’. I like to participate in life and do all the things that everyone else does. So basically I freak out if I don’t have ground under me, structure of some kind.

So where does this leave me and my faithful friend ground?

Well…

I can’t live with and I can’t live without!!

Wowser. I'm wrecked after that. Wish I could have been a bit more coherent.

Hope you're all keeping well...

Treya : )

Symptom update

2010-02-18T08:34:00.004Z

Hey People,

The roller coaster went down hill again last weekend. I'm just going for the ride and not getting frustrated or down about it. I've been getting infection after infection since November now. I really haven't felt the same since that flu and then chest infection a few weeks ago. I still have a cough and it feels like I still have an upper chest infection. I've had swollen lymph nodes behind my ears on and off since before Christmas. My pain levels have gone up and I'm having worrying problems with my arms and hands. I've been having bad weakness with pins and needles, tingling and throbbing. I've also been finding it hard to use them at times which is accompanied with bad heaviness. The tingling is also running down my legs and I'm getting pins and needles in my heels also. I've also been getting some very worrying pains in my cervix/uterus, which are crippling and I can't stand up straight when I get them. These pains are not frequent. My yeast problems are bad at the moment so I think maybe inflammation may be causing this??

My local doc did blood work on me a few weeks back and my white blood cell count is low. I have to go back for more test in four weeks. If they are still low my doc said they will be referring me to a Haematologist. I've been in bed for five days now and I'm pretty weak. I've had bad sinus headaches for two days. I'm going to go to my local doc to see if he can give me some kind of spray today. I definitely have an ENT infection, but I'm NOT going on antibiotics again with my yeast problems. My sleeping tabs aren't really working anymore either which is disappointing. I will be seeing my M.E doc next week to discuss all the above problems.

Patience, patience, patience...... Right??

Just thought I would give you an update on my symptoms of late.

I hope you're all keeping well...

Have a good weekend!!

Treya : )

Reflection & Gifts

2010-02-10T12:00:00.013Z

Hey People,

Well, I'm back, and feeeeling good!

Each time this illness forces stagnancy upon me I have to sit, feeling polluted, heavy, in pain and lost in a fog - forced to do so without choice. I'm learning slowly that the things we 'have' to do without the luxury of choice are where we really learn. In the mist of this it doesn't always seem so. But reflection is there for me if I am patient.

With lots of confusion and an unwelcome bombardment of unpredictable emotions - one must use the mind to sift through it all from every angle. With the sick body preventing me from running away, perhaps this is a gift of sorts.

When movement becomes my friend again, it does feel like a rebirth, with an abundance of knowledge learned about myself and life! All of this I have stored nicely away in my mind for times ahead. he heee... Take that in the face M.E.... : )

At Christmas I felt really good, with moments of ease and freedom. It was at one of these moments that I decided to write down how this felt so I could use it when I wasn't so well. I wanted to figure out how to go easy on myself when I'm unwell. I can be quite hard on myself.

Here's what I wrote,

When I'm feeling well,

I naturally have a passion and desire to do things.

Like yoga, meditation, walking.

Creating.

These things are what make me happy.

They have always lit a fire in me.

When I am ill the 'natural' part diminishes,

along with the passion.

However, the ambitious, driven, seed is still there.

This contributes to me beating myself up,

as if I am being lazy.

But I have now become consciously aware of the spirited me.

So when I become tainted again I must remember,

to trust who I am and go easy on myself.

That's all for now folks!

I hope you're all well...

Treya : )

P.S Thanks to all for the kind and supportive comments you left on my last post. xxx

Growth and Stagnancy

2010-01-23T08:52:00.010Z

Hey People,

This will be a short enough post. I'm very run down at the moment and all sorts of infections are queuing up inside me to have their time in the lime light. I turned 30 last week. I'm not the kind of person who gets freaked out by age. But I think after coming down with such a bang after a relatively good Christmas health wise and not really being able to enjoy my BIG 30, I'm feeling all mixed up. Once again I find myself riding a rainbow of emotions, or should I say - just about holding on. All of this has brought about a reflective mood.

As time goes by life appears to move on with ease without me. It's four and a half years now, and people are growing tired of my health complaints and need for emotional support. It's difficult for me to move past the raw emotions that this illness continues to trigger, and bombard.

Four and a half years doesn't change the fact that I am still fighting for my health, fighting for answers. If I'm honest, I'm still very much grieving after my old life and learning (trying to learn) how to dissolve deeply ingrained conditioning. This is VERY difficult when everyone/thing around me is still positively living off the mechanics of this conditioning.

Conflict between growth and stagnancy are forever orbiting me...

I am once again trying to find my ground.

I am learning the reality of impermanence on many levels now.

That's all for now folks!

I hope you're all doing ok...

Treya : )

Happy New Year!!!

2010-01-10T13:26:00.002Z

Hey People,

Just a quick post. Happy New Year to all of you!! I hope everyone had a lovely Christmas.

I had a very enjoyable Christmas. My health held up very well. Better than the last few times. Although it was very tough on my body to be constantly going over the few days. I crashed badly about a week and a half ago and have pretty much spent most of that in bed. I also then got the flu and now I have a bad chest infection for which I'm on strong antibiotics. So it's lots more bed rest for me although I am trying to get a bit of fresh air over the last couple of days.

I hope you're all doing ok...

I hope to be back soon.

Treya : )

Busy little Beeeeeeee

2009-12-18T16:11:00.016Z

Hey People,

I haven't been great with my blog lately. I was determined to get my first two modules of my course finished and handed in two weeks ago. As you all know this means no time for anything else. In module two I had to write a short story. I really enjoyed all the preparation, eg. character development. I also really enjoyed writing the story as I have never done creative writing before and found it gave me the buzz I miss so much from working as a graphic designer. However, I also found it frustrating as for me creativity is all about getting lost in what you are doing and not even realizing the time going by. With this my body made me stop smack bang in the middle of creative flow. Sometimes I wouldn't be able to return to it for two weeks due to being ill. It's hard to keep things consistent this way. But I did my best and REALLY enjoyed it. I felt so happy to have achieved something. I can't wait to continue the course even if it can be frustrating and highlight how little I can do. I have two years left to complete it anyway.....

Oh yeah. My friends operation was a great success! They managed to cut out the section of the bowel without going near the artery. He is recovering well.

I recovered from my infection after the antibiotics. I have been feeling really well over the last week. I think this is probably due to a combination of things. I'm sleeping sooooo well and I feel I have more energy. My uptight/locked jaw has gone, which I think is due to the Lyrica. I'm still having neuropathic pains in my legs, but not as much. I can't say yet whether this is due to the Lyrica or the good patch that I am experiencing. Strangely I have felt a lot better since stopping all the antibiotics I was on. I haven't had my fluey/poison feeling much. I'm having joint pain, but moderate pain. My glands are still painful on a daily basis. This is something that has got worse since being on antibiotics. My rash on my back has come back worse than before the antibiotics...

I started getting pain 'down south' again a few days ago, so I went to my local GP for an examination. I have a very bad yeast infection which is casing inflammation and this is what is causing pain. My scar from procedure is not infected again, but is still healing slowly. My doc has put me on a strong anti-candida medication for five days to try and tackle all my yeast problems as my scar will never heal properly if the yeast is out of control. I guess all of this is to be expected, after all I have bad yeast issues in my bowels and then was on antibiotics for 3 months.

I met up with another ME/CFS sufferer for a coffee three weeks ago. This was my first time meeting someone with ME/CFS in person. It was great to chat to someone who can relate to this experience.

I'm really beginning to feel the benefits of upping my dose in hormones. Some of you may remember me saying that I felt "nothingness" all the time, which is hard to explain. Anyway that's gone and I feel I have a bit more umph, which I attribute to the increase in hormones. I'm really looking forward to lots of dressing up for Christmas

With all this feeling half normal going on I have been able to do a little Christmas shopping. I really enjoyed this and it has helped get me into the Christmas spirit. I'm can't wait for Christmas. I reckon I may go down hill over the next few days with the yeast die off as I only started yesterday. Maybe I won't... But if I do, I really really hope I improve again for Christmas.

And... I REALLY hope all of you are feeling as good 'as possible' over Christmas.

HAPPY CHRISTMAS PEOPLE!!!!!!!!!!!!

Treya : )

Sleeping beauty!!

2009-12-04T09:31:00.015Z

Hey People,

I had a visit with my GP last week and he put me on Zolpidem sleeping tabs and Lyrica tabs for neuropathic pain. All I can say is HALLLLELUJAH!!!!!!!!!!! I was told to only take the sleeping tab 3 -4 times a week, and I have a lovely deep sleep on those nights, not waking once. It's amazing! I don't even hear my partner coming into bed OR snoring. We had to sleep in separate rooms before this. My sleep without tabs is so light that if someone got up to use the toilet next door it would wake me and it's rediculiously disturbed. As for the Lyrica, they haven't fully kicked in yet. As far as I'm aware it takes time to kick in.

Unfortunately I am after getting an infection following my procedure two weeks ago. It started last Friday with pain and bleeding. I haven't had to go back. They sent me out a prescription for BioFloxin (Cipro) for 5 days. So, I finish them tomorrow and hope that everything ends there.

I have been down with my other GP this week and we had a long discussion about the whole Lyme issue. He has always said that something is being missed. He has always suggested that it could be Rickettsia as he knows someone with a very similar story to mine who was found to have it. He is also very open to Lyme. So, we have put in an order for 'Complete Lyme Panel', 'Complete co-infections panel' and 'Complete Rickettsia Panel" test kits. All of this will be done at IGENEX in the US. I will be waiting until the new year to take blood and send it off. Maybe 2010 will be a year full of answers...

A friend of mine is having a very serious operation today. In fact, he is on the operating table now. He has been told that there is a significant chance that he may not come out of it, so it is a very tense time for his family and friends right now. He was diagnosed with Crohn's disease a few months ago. When they scanned him to look at his stomach they found a much bigger vascular problem. One of the large veins that comes up from the right leg to the heart is wrapped like a ball of wool and is also wrapped around the organs in the abdominal cavity. Due to this so far they haven't even been able to deal with the Crohn's. It is very rare and they have been in communications with doctors in the US for a while now trying to figure out the best ting to do. I think it will be a very long operation. So, please God all will go ok for my friend.

I forgot to mention that I have been granted the disability allowance. I received my first payment two weeks ago. As you can imagine I'm very happy about that.

That's all my news for now.

I hope you're all well...

Have a good weekend!!

Treya : )

Lyme theory update

2009-11-24T17:33:00.007Z

Hey People,

I had my appointment with my tropical specialist on Monday. He feels that I don't have Lyme. He said that I don't seem to have had a positive reaction to the treatment, which is what he would have expected. Instead he said a lot of my symptoms persisted throughout with some intensifying. Due to this he is closing the door on the Lyme theory. He did say we could try some more treatment at a higher dose for a while, but didn't really see the point. All of this kind of threw me as I felt all the strong reactions I was having, was possibly herxing... He dismissed this and said he would have expected me to be worse at the beginning and then improve and that most people improve after 2 weeks. I asked him if he thought this would be the case if even someone had it for four years... His answer was yes.

As you can imagine this all left me very confused. I respect the mans opinion and he was nice to me. So, I didn't even push for more treatment as I felt if he was falling on that side of the fence it is not worth it. He says there is nothing more he can do for me. I felt overwhelmed with confusion after. Of course I might not have Lyme. However, that little voice is still niggling inside me. I just don't think it should be dismissed so easily. Why was I reacting so strongly to the antibiotics? Although I felt at times my symptoms were a little less unpleasant, they were more constant.... I also felt very ill on the flagyl, especially the second night when I woke up feeling VERY ill, as if something nasty was pumping around my body and I was jerking all over the place and felt very fluey and as if my body was swollen????

I guess all the above could be due to the possible toxic effects of the antibiotics and maybe my body was just sensitive to this??? I have been getting mild rashes on my face and the palms of my hands. It is all blotchy red and white, kinda like corn beef... Strange... I will be keeping an eye on this. Anyway, I have made a decision. I am not going to take any more antibiotics for now, as I'm sick of the whole guessing game thing. I've been consistently sick for 8 weeks now except about four days here and there. I want to try and enjoy Christmas and my 30th Birthday in early January. I am definitely going to order a full Lyme panel test kit and co-infections test kit from Igenex in the US. If the results all come back clear then I am going to close the door on my Lyme theory for good. I feel the test is the easiest and the least stressful next step on me.

I'm off the doxi just over a week and unfortunately my back rash, which had really cleared up is coming back and getting itchy again... I will leave this issue for a while. I am really sick of my sleep problems. I suffer from bad insomnia and disturbed sleep. I have been on Melatonin and 5HTP supplements for a year, which help a bit some times. But they are no helping nearly enough and I am sick of it. There is some serious imbalances in my brain as far as I can tell. I am never going to improve if I am not sleeping well. I have been trying to hold off on taking low dose anti-depressants for this. I was on them a few years ago and they helped. I am going to be going to my Doctor on Thursday and discuss going back on them. Something has to give... I am really worn out and can't seem to see a gap in the clouds. I haven't really improved overall over the last year and some of my symptoms are getting worse. I would imagine an anti-depressant will definitely help with some of my problems.

So that's all my news for now.

I hope you're all well...

Treya : )

Christmas cards!!

2009-11-22T15:06:00.003Z

Is anyone interested in buying Christmas cards, with the proceedings going to ME/CFS research??

If so, you can find a variety of packets on the 'Irish ME/CFS Association' website, at great value...

A quick Thank you!!

2009-11-19T09:23:00.002Z

I would just like to say a big THANK YOU to everyone who has voted for me so far!!!

Treya xxxx

: )

Treatments Galore.......

2009-11-18T14:16:00.006Z

Hey People,

I had my gynecological procedure yesterday. It is called a Lletz procedure, to remove the lesion that was found on my smear test. Everything went fine. I have not had any drastic effects from the anesthetic. I am feeling very tired, but that is probably due to the long day I had yesterday too. The doctor put me on a very strong dose of antibiotics called Flagyl for 5 days. I looked these up and coincidentally they are actually used to treat Lyme disease as well. I know it's only 5 days, but I will be interested to see how I react to them as it is two tabs a day at 400mg each. I finished my doxycycline treatment on Monday. I am back with the tropical disease specialist next Monday to reasses the situation... I will be pushing to go back on doxycycline at a higher dose for a while. But you never know what will happen once I enter the "Headmasters office", as I like to refer to it. I have been looking into prices for Igenex testing kits being sent over from the US and CD57 from Germany and lots of other tests, which I will also discuss with him. But we shall wait and see what the vibe is next week...

My spirits are good at the moment. I'm still finding it difficult to maintain any kind of routine. At present I am managing to do my course every second week, which is frustrating me, as it's hard to make any significant progress at such a snails pace.

So this is just a short post. I'm pretty tired... As I said, all is good in Treya land at present!!

I hope you're all keeping well...

Talk soon.

Treya : )

The smaller things in life!!

2009-11-09T12:58:00.008Z

Hey People,

Last week was by far my best week since early September. Dare I even goes as far as to say I encountered a few moments of ecstasy… Perhaps we can thank our illness for these little moments?? Like so many of you, I have spent the last few weeks feeling like I was being beaten up from inside on a daily basis. This beating attacks the mind, body & soul, slowly depleting any spark that exists… When you are chronically ill there is a desire to latch on to the positive in order to try and fit in to normal life. But this positivity is most of the time an act and can take an enormous amount of energy too.

So before the ecstasy, I better rewind a bit…. I haven’t talked about my doxycycline treatment much as I don’t really know what to make of it yet. I am in week six of a six weeks course. I was starting to feel unwell the week before I had started and continued to go down hill after starting. However, the pattern wasn’t really different to my usual pattern of deterioration. There are a few things that have stood out though. I was definitely more tired than usual in the first couple of weeks. I also had extreme chills internally all day, especially in the chest area for the first two weeks.

In week three I had a lot of internal anxiety that felt unusual and very unpleasant. I occasionally suffer from uptightness and pain in my jaw. This was constant through week 3 and very unpleasant and painful, nearly locking at times. I looked back at my notes for August which was a terrible month for me, and I feel that my symptoms were a little less unpleasant, especially my fluey/poison feeling which I had noted as “debilitating” as opposed to “moderate” this time.

Week three and four were the worst with very bad joint and general body pain, nausea, very bad sleep, anxiety, fatigue, brain fog, etc… In week five my joint pain pretty suddenly disappeared along with the anxiety, nausea and very bad sleep. Aaahhhhhhhhhh….. and back to those delicious moments of ecstasy!! With that battle over, it can only be expected that one would take extreme pleasure in the small things in life. I was able to do my course three mornings a week for two hours, and the creative juices were A flowing…This feeling has always given me a real high. Then last week I had a couple of small walks when I couldn’t take the smile of my face, basking in all the autumn beauty around me. I also enjoyed spending some time with family. Yes all of these things are small and these are things I try and do when feeling crappy too. But to do these things and feel ‘relatively normal’ is nothing short of exhilarating!!!! No acting needed. This was all real : )

What goes up must come down unfortunately. After about four days of delight I began to get a sore throat. This has continually got worse over the last five days, leaving me quite fatigued again, with sore lymph nodes in my neck, armpits, breasts and groin. My neck and armpit nodes are swollen. I’m sure this is something viral?????

Last week I really enjoyed those moments of ‘freedom’ and I do have this illness to thank for helping me enjoy the smaller things in life!

So here’s to enjoying all those smaller things that life has to offer us!!

I hope you’re all well.

Treya : )

Living the Cinderella Life..................

2009-10-29T12:26:00.002Z

Ah yes People, Living life against the clock! Isn’t this what everyone has to do in life anyway? I guess this is very true. However, windows of opportunity to do things are much smaller when living with ME/CFS. I have discussed before my wariness of making plans due to the frustration that arises through not fulfilling those plans.

One becomes a slave to this illness. Serving it’s every need, and usually being punished if these duties aren’t met appropriately. But I don’t want to be a slave to this illness for any longer than I have to. This is easier said then done on many levels. When one is a slave, one isn’t in control. You have to learn to put your body’s needs first, which isn’t always easy.

I had mentioned that I wanted to work on my course a few days a week and do some other things. This is where the small, and I mean usually very small windows of opportunity come in. The thing that you learn with this illness is that all the things that you took for granted before, like showering, or clothes washing, etc… must go into these windows of opportunities too.

So on a good day I need to rest several times a day to prevent being “punished”. These rests take up time. An example of one of these days is study for three hours, plus allocated rests, plus showering, making lunch/dinner equals day over. Another example might be if I am to meet a family member for a couple of hours. This would usually require making breakfast, showering, drying hair, trying to get a rest in before meeting… Returning from being out usually results in being flat out for the rest of the day.

When things aren’t so good you can say goodbye to any of the extras. Making a trip to the local shop for something for lunch may be it and then you are probably to wrecked to make lunch anyway. No time for the course, writing posts, etc… Just enough time for our basic needs, if even? Also to get things like my course done, I let things like house cleaning slip and clothes washing. Obviously this gets to a point when it has to be done and because everything cannot be done in one day when you are unwell, this usually takes up a few days, so no course that week. So you get my drift here…

There are many things that call the slave into action. A sleepless night, debilitating nausea/flu feeling, pain, fatigue, neurological issues (concentration). Many outsiders don’t realize that we are slaves. They get to see us all done up and ready to go to the “ball”…

So what the hell am I saying here????? Oh yeah. This is not something that you get used to. It is incredibly frustrating to be a slave, putting all the masters needs before your own. I haven’t been able to do my course this week or any house cleaning, etc..

I am ambitious and I certainly have always liked to achieve the goals I set out to do. Not being able to do these things usually results in mental frustration. This is in itself is a goal to try and get over, as it is not healthy for the body to be getting stressed in the head about these things. So even giving in is an ongoing struggle for me. This illness is seriously multifaceted, challenging and relentless on an ongoing basis.

Yes people…. That’s all I wanted to say for now, even though it’s not as coherent as I would have liked. But hey, you got to learn to let go, right….

Go Team Cinderella!!!!!!!!

Hope you’re all keeping well…

Treya : )

Living with Chronic Fatigue, Lyme Disease & Rickettsial Disease

Easy there girl..........

Such welcome luxuries : )

Wedding photos.......

Christmas cards!!

A quick hair Vanity tip!

A quick apology

Out of hiding : )

The psychological Effects of Lyme

EXCELLENT 10 min video testimony- US Lyme doctor

Excellent Video informing about ME

Professor Hooper's response to Wessely - on ME

Link to great article!! Relapsing and Adrenaline Surges

A mixed bag

Checking in with myself

Imagination. Friend or foe?

New challenges. Or maybe old challenges…

Dear blogging friends

Cautious optimism

Haiku Mind: 108 Poems to Cultivate Awareness and Open Your Heart

A good book

Excellent presentation- Stanford

A change in the wind

Symptom update

Managing CFS & Fibro-free online book

Consistency...

XMRV-French study!!!

Hey People,

I read this on my friend Dominique's Blog. Very interesting!

De Meirleir on Retrovirus

Blood transfusion transmission of babesiosis

Swine Flu vaccination........

A little tip

How to be sick book

Cape Town - Doctor recommendations???

New symptom

Video - Lyme Disease Destroys The Mind

Video - *Chronic Lyme Disease and CCSVI*

A good kick in the ass : )

Behavior - Contribute if you can please : )

Lyme Urgency

Small improvements???

Dreams verses Reality...

A weight off my shoulders!!

Good news!!

Belgium & Treatment

Chlamydia Pneumoniae article

More Results!!!

Ready to go again!!

Time Out.......

Dr. Weir talk - points covered

Recharging!!

Fight or flight response

Test Results!!!!

Anticipation??????

Toilet relief.....

Taking the plunge.........

10 things about me

ME/CFS DOCUMENTARY TO BE MADE!!

Thyroid talk

Grounding

Symptom update

Reflection & Gifts

Growth and Stagnancy

Happy New Year!!!

Busy little Beeeeeeee

Sleeping beauty!!

Lyme theory update

Christmas cards!!

A quick Thank you!!

Treatments Galore.......

The smaller things in life!!

Living the Cinderella Life..................

Video - Chronic Lyme Disease and CCSVI