Honeymoon Part 1

Hey People,

It's been a pretty rough week. One filled with horrible migraines! Without a doubt there has been strange neurological, and chemical/hormonal issues going on. I have really been quite depressed, and my moods have been quite erratic. I haven't been like this in a long time. I think there has been many reasons that have come together at once: I have had my period. I have had to take my HRT patches off for three days as I have to do every month. I also started a treatment. Two weeks ago I ran out of my natural Melatonin which I used to use at night. Ireland seemed to have banned it, so I can't order it in again. I wondering if this could be causing it?? Also, my blood result are showing up some strange high prolactin levels. I'm sure my last IV treatment which went to the brain did some messing around with things too.

It frightens me when I'm like this as I become quite withdrawn, and the gap between myself and everyone else seems so big, that I don't know how to explain it to people, so I usually just keep to myself.

Anyway, we are heading off to Paris tomorrow for five days for the first part of our honeymoon. I am also seeing my Lyme doctor on Tuesday. It will be good to talk to him about this recent issue. I don't have a migraine today , so I feel I have turned a corner, and that hopefully things are at a more balanced state within my brain.

I'm sure I will be leaving these issues behind me in Dublin, and Paris will help lift my spirits. I probably won't get back to my blog for a couple of weeks.

Things can only go up from here : )

I hope you're all ok...

Treya : )

Those tears of the night

Dearest People,

For it happened again last night. Like so many, many, and many more nights before. As the lights go out, and I breath out a sigh of relief at the end of another day. But then as my weary body and my clouded thoughts unite in the silence, the tears come. Sometimes I lay there peacefully and these tears just trickle down my face slowly. Others, come violently, the pain bursting to come out; with the pillow held up against my mouth, I cry those aching tears as if I were crying for the whole world.

This became a strange and uninvited ritual after I got sick. When the lights went out. I often wondered about this. Do others do it? Either way, it became just another part of living life with chronic illness. This doesn’t happen too often at all anymore. No doubt as I have seen some improvement since starting treatment. And of course, as I have been given a glimpse of hope. Do these tears come from abandonment from hope? IN fact I asked this very question to myself last night, and then I felt so sad and cried for all of you out there who haven't been given a glimmer of hope.

I had a very busy day yesterday, which no doubt had a part to play. A weary body, and mind. I took my first trip in a long time into Dublin City centre on my own, to get my hair done, and have a look around. It was a lot on my body. I got the usual migraine that follows such exertion, and my body was full of internal tremors. I know I’m close to my period, for which my moods often become erratic and strange. Yet another thing that sets off this illness: a change in hormones.

Back to those tears of the night. My therapist told me once that she thought it was because my life was so uncertain, and because I never knew how I would wake up feeling. It dawned on me last night, as they quietly made their journey out, and down my face, that those tears, from all those nights, are a result of feelings that have been ‘forced’ away during the day. This comes back full circle to my last post. Where I talked about a trigger and how one of the automatic responses is to repress, and busy ourselves immediately in some other way. This Tonglon practice teaches us to gently allow that issue to sit with us, to open our hearts and let it hang around until it passes. This is very different to repressing and running away from that feeling there and then.

The tears come because it is the first time that day that I have had to sit with my thoughts, and issues and just let them be! Sitting with them is what we should always do; Day or night.

Last night as I lay there, my old ritual paying me a visit for the first time in a while, I wondered, how many other people are out there lying in the dark with only their thoughts, and their tears.

To finish with a beautiful quote that I love by Washington Irving;

“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief… and unspeakable love”

That’s all for now.

I hope you’re all ok…

Treya : )

P.S. Have you ever seen the tiny sacred crevices where your tears come out from? If not, go and have a look in the mirror. I have always found them fascinating… In fact the whole process of crying is fascinating to me.

Don't loose faith in ALL doctors

Hey People,

A lot of us have experienced some terrible and scarring experiences with doctors. But try not to let it ruin your view on all of them across the board. Easier said than done, I know. Whenever I'm going in to see a new doctor or one I'm not too used to I feel like a child who has been summoned to the headmasters office to get in trouble.

I recently came across this doctors blog called Musings of a Dinosaur, and I wanted to share this video. I'm currently doing research on doctors for a new character for a short story.

Here you go:

It's doctors like this that we need to be seeing. I am fortunate to have a doctor with a similar heart and good intentions.

I definitely feel that GP's/family practitioner's are the best ones to deal with our multi-system diseases(not so sure how they feel about having to deal with many of us : ) ), as they see such a wide array of patients with so many complaints from different parts of the body. Me no likey specialists(except the odd one). Best to stick with the GP's I think!

I think this is going to be a very positive experience for me as I will have to jump inside doctors heads, and try to see things from their perspective...

Hope you are all ok...

Treya : )

Little Miss Trickster!

Hey People,

As you know of late I’ve been trying to do some work on myself and how I approach my life, and thoughts, etc. I’ve come to realize that I need consistent, daily support, or guidance in some way; call it what you will. I was raised as a Catholic, but like many of my generation I did not keep practicing, and it’s teachings just didn’t work for me. I know lots of practicing Catholics, and I fully appreciate their belief system.

I mentioned previously that I have read up quite a bit and taken interest in other Religions, Spiritual philosophies. But I never kept anything up. Of late I have realized that I need to focus on daily practice of some kind to keep my mind and how I live my life in a more stable place. I’m not suddenly becoming born again ‘anything’. I’m simply acknowledging that I need that structure, and some form of teachings to try and keep my mind focused on what’s good for me.

I’m achieving this very well by spending forty five minutes to an hour every morning after meditation reading some books with messages I find helpful, and that make sense to me. I’m not concerned which religion they are; what I like and find helpful is all that matters.

I’m still reading and practicing Tonglon, which is taught in the book I talked about in my previous post. Today I have been learning about those things that are perhaps toxic in my life, or even within my mind : ) Pema talks about Poison, which comes in the form of good and bad: Passion, Aggression, and Ignorance; discussing how we can use all of these as medicine. She says these three things are triggered “by people and situations in our lives”.

If we even look back over a couple of my posts from last week you can see a perfect illustration of how I have allowed others and their judgments to affect me. Pema discusses how when we fixate on something, whether good or bad, we are making it into something solid and that this is a trap as it is using up the precious energy of our minds, and makes us feel bad.

A trigger usually causes one of three responses: A pleasant one causes craving, an unpleasant one causes aversion, and a neutral one causes ignorance. This is simplifying the ways in which we react to people and situations. It is very handy to know this for both us and for understanding, or observing others.

An important message that Pema expresses, and of course the main teaching of the Tongln practice is that it is vital that we do not try to force either of these unwanted feelings to go away, or let certain feeling hang around in our mind. When we do the above our reaction is usually one of two things: we act out, or we repress!

So how do we stop ourselves from acting out or repressing, from grabbing or mulling over? Pema names these unwanted feeling or situations as a character called ‘Mortimer’. I have decide to call mine ‘Little Miss Trickster!’ The objective is not to allow Little Miss Trickster to grab me by the hand and make me follow her around, nor is it for me to try to make her disappear… It is simply to acknowledge her and basically watch her patiently walk by with compassion and an open heart. She will walk out of the picture at some point, as all thoughts do. The result aimed for is that we are turning the ‘poison’ into medicine! Teaching us to be more gentle and deepening our awareness of our minds tendencies and how they can trap us and stop us from experiencing a happier, simpler, and more calm life.

Daily diving into these teachings is very important for me, and I find it very helpful. I go into the day feeling calmer and happier, and less imprisoned.

From Little Miss Trickster, and Treya, Bye for now!

Hope you’re all ok…

: )

Contradictions Orbiting My Poor Little Brain

Hey Peeps : )

There are some complicated problems that accompany an illness such as mine. It is very paradoxical in nature: I often find myself drowning in a contradictory world; one full to the brim with confusion. I’ve been asking myself what effect does this have on me? Is there some way that I can lessen the conflicting feelings that manifest out of these situations??

Firstly, it’s probably best that I try to categorise where I find these conflicts arising:

1. Physical

2. Medical

3. Emotional

4. Social

Physical examples

Too much lying around can lead to deconditioning, and muscle wasting. But I am told to listen to my body and not push. All my sick body wants to do is lie around. Then, exercise is important to keep the immune system strong and to prevent the muscles from wasting. Most exercise sends me to my bed, and makes me sick. It’s also important to keep the circulation moving, and for a healthy heart. But any time I push myself to do cardiovascular exercise I end up feeling worse.

Medical examples

What one doctor says, the other contradicts. Long-term antibiotic treatment is bad for your body; yet not treating will see your condition deteriorate. Don’t take certain medication because you can become addicted. If you don’t treat that symptom then your body can’t heal, as the body isn’t getting any relief. One doctor says you have Chronic Lyme. Others like to say it doesn’t exist.

Emotional examples

Continue to be positive and have hope, even though every time you see an improvement you then get worse again. Try to get on with your life with a smile on your face and don’t moan, even though you feel far from smiling most of the time and you constantly feel terrible. Don’t get stressed, even though you never have straight answers or know what tomorrow holds. Don’t talk about being sick, even though you have little else going on in your life due to your health problems, and much of your life is about chasing doctors, etc. Try to get on with your life regardless, yet the damn chronic fatigue stops you from doing that. Don’t get down or withdrawn, even though you have little emotional support.

Social examples

People comment and judge, yet they know nothing about the illness. You try to teach them, yet they take that as you being obsessed or pushy with it. People say they are there for you, yet the last thing they want to do is listen.

Of course all of these lead back to the same place: Within our emotional world. This is where my questions come in:

What effect does this have on me? Simple. It uses up way too much of my precious energy across the board. This just can’t be good for me. Of course I realized this some time ago.

Is there some way that I can lessen the conflicting feelings that manifest out of these situations?? Yes! That is exactly what I am busy working on at present, and I’m really finding Buddhist teachings to be the best way forward here. Buddha says to accept the things that we cannot change.

I am a very curious and analytical person, and I like to find the answers to questions. One is constantly faced with few answers, or else paradoxical answers with this illness, which is enough to make me go crazy. Sometimes I actually feel like my head is going to burst with all the question marks bobbling around inside. So I have set off on my biggest mission yet: To accept the things I cannot change.

It comes back to not grasping at my thoughts. Just letting them pass by as if on a conveyor belt. Whether it’s an answer I like, or one I don’t the same technique applies. I am learning to get better at this through the practice of daily meditation. I really am finding it so helpful. A book that I’m studying like mad at the moment is ‘Start Where You Are’, by Pema Chodron. I would highly recommend it to anyone. It is a great place to start, and it is very easy to understand.

Pema talks about life and its Paradoxical nature. So I guess when I’ve mastered accepting all these contradictions that orbit this illness, then I will be a master on life………….. : ) Eh… No! Something tells me that one can never reach this place. But I can damn well try, and I’m sure I’ll improve at this acceptance game.

Over and out for now People.

Hope you’re all ok…

Treya : )

How Chronic illness is viewed

Hey People,

I wrote this topic in my notebook a couple of weeks ago. I feel that it's an important topic to highlight as it's one of the many extra stressors that we have to take on when we get sick.

I still get paranoid and feel judged sometimes. I feel that people with chronic illnesses get judged by others often. Its like people think that you somehow consciously or unconsciously enjoy being sick on some level. That you are afraid of life…

Today I discussed with someone how I sometimes worry that when I get better that I will forget some of the valuable life lessons I’ve learnt. I immediately felt that I shouldn't have said this as it may come across that I enjoy being like this on some level… When living with a chronic illness you do feel like you have to censor yourself on some level. You can’t say things as they are. I guess this is a hard lesson that I’ve had to learn. I’ve always been a very open person. Most people wouldn’t be as open and therefore may not struggle in this area.

People are just so judgemental. It scares me quite frankly. It does make me feel like I don’t want to be around people very much. I guess I’ve kind of lost faith in people over the last few years. I need to start to focus on the positive things people do too. A piece of advice I gave to a friend lately, and that I need to pay heed to myself: is that every time I have a negative thought in terms of this subject I should try and think of positive things I think people do too.

I really need to not let what people think bother me any more. This is a very important lesson.

Something I'm trying to revisit and work hard on at present is forgiveness. I'm sure I will be writing about my experiences of forgiveness in the near future.

I hope you're all ok...

Treya :)

A road less traveled!!

Hey People,

I shall start with a quote:

Two roads diverged in a wood, and I –

I took the one less traveled by,

And that has made all the difference

Robert Frost

Although I did not choose to take a different road a few years ago, I was forced to take one. I do like to look at this as something out there somehow knowing my fate. Knowing the direction my life is meant to take. I was at a peak in my life. But who knows how things would have turned out had I not got sick. I’m sure I would have continued to live off the mechanics of modern life and it’s superficial tendencies. I’m very sure I would have continued to try to achieve more and more. I’m sure I would have seen some success too. But ultimately I know I still would have had a sense of dissatisfaction with living such a superficial life, as I already had these issues throughout my life.

From a young age I was very curious about life and why we are here, and what it all means. This naturally led me to flirt with a spiritual life on many occasions. I practiced yoga, I meditated, read up on religions, and I tried to give to others. Yet there was always something not quite sinking in. I was finding it hard to live life with a healthy balance between being and doing. I was having problems bringing my inner world and my outer world together in a unified way. There was some confliction in this area, with one contradicting the other.

I feel that this illness, and the life I was forced to live, has taken me by the hand and helped me to find the rest of these answers. This illness and its multifaceted nature, with its many contradictions, that has encapsulated such intense highs and lows, has been the perfect metaphor for life and all the trials and tribulations we face. I feel I have learnt so much about life. I just don’t think I would have learned all of this had I been plodding along through life without many problems.

I have learnt to become a good listener. I have learnt to be kind to myself. It has strengthened my relationship with my husband. I appreciate the simple things in life, like being able to go for a walk. I have learnt to become more patient. I have learnt not to judge others. I have learnt that I am still someone, even without all that made up my old identity. I have much deeper compassion for others who are suffering. I have learnt some harsher realities also, but I’ve equally gained from this knowledge. These harsher things mainly involve people and how cruel they can be. How narcissistic many people are in this modern world. How people care, but ultimately life goes on and people don’t really have much time to spend thinking about you. But that’s ok, and it helps me understand that that’s just life.

All in all, I have learnt that I can come back from the lowest of the low, and the depths of loneliness and still be content, actually because of those lows probably more content than ever. After getting through the last few years I feel that I’m not really afraid of too much. Which should really help as I improve and try to take on more in life.

This may not have been the road I chose to walk down, but it is the road I’ve had to walk down, and it has taught me SO much. It has scared me, hurt me, and caused me to be lonely, made me go crazy, taken from me. Yet it has equally enriched me, given me intense highs, given me moments of deep happiness within. It has shown me that I am quite sane whilst others are not so : ) It has introduced me to many lovely people, and of course to my writing. It has given me wisdom.

I’m grateful I walked down this road!

Perhaps I should take some more roads that are less traveled in my future.

If I have the choice………. : )

I hope you are all gaining from the roads you've traveled.

Treya : )

PS. It took me three days to get over my walk last week when I over did it... I feel like every time I write about an improvement I jinx myself and a disimprovement happens.

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

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 : )

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.......

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 : )