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It was my “birthday week” the week before last. I had a good week! I was careful to rest and eat nothing different (like cake) as i planned to go out into town on the Sunday to meet some friends. It really felt like a whole week of celebrations though, with cards, messages and presents trickling in day by day (unopened of course!). I was feeling a bit down after Christmas, just struggling in general, and it was nice to feel my mood lift (if not my energy levels) and to feel genuine excitement about my birthday, getting some presents and going out to see friends i had not been able to see for months. As usual i was blown away by the kind and thoughtful messages, presents and the efforts people went to in order to make me feel special. It was really nice and a much needed break from the norm.

I did make it into town and went to an art gallery, saw my lovely friends, then also stayed in town for an early meal at a place which does food i can eat (rice and tofu based). I will never forget the taxi driver’s face when we asked him to drive me a very short distance along the road, he seemed to be unable to understand that, yes, we really do mean just along the road there… he didn’t refuse though, which was good. Although i became uncomfortable sitting in the restaurant with heavy blood-filled legs, i felt pretty good while out and it felt so nice I did not want to go home. I knew i had to but it felt like so long since i was out and about, i did not want it to end.

It almost seems easy when i am out and not feeling too bad and i find myself wondering why i don’t manage such things more often, until i remember the whole week of resisting the urge to leave the house (despite feeling quite stir-crazy at times) or do anything more than the basics, eating safely, the morning of lying in bed trying to get that extra boost of a nap, the day before of preparing myself, making sure i was bathed, hair washed etc so i did not have to do before i left, and the inevitable recovery time which would be just as long, all for three/four hours of being out.

This week since the trip out has been a hard one. I did not get a proper full recovery from that before other things happened. A decorator came the next morning which i had to get up for, after not sleeping well at all (as usual after doing something stimulating/exerting myself in any way). As it happened i managed to have a bath and go back to bed and sleep with my earplugs in while the decorator was here and when i woke up she was almost finished but still it was not as relaxed as i needed. My stomach was upset after the meal out, despite being so careful, which always saps my energy. Then there was the hospital appointment a couple of days later which should have been quick and easy, taxi in and out. Long story short, i looked on the website to find the appropriate entrance but it was incorrect and i did not ask for a wheelchair transit as i did not know how far it was (thought i was ok and receptionist made it sound like not too far) and walked far too far. Had a POTS episode (didn’t actually pass out but got to the department in a bad state, could hardly stand/breathe/talk) had the very quick appointment  after recovering a while in the waiting room and then went home. That evening i felt awful and i am still recovering from that. I also had to pop out briefly with my partner on Friday, she drove me only ten minutes each way but i ended up sitting in the car for 3/4 hour and although it was no exertion and i was relaxed and warm enough, it just sapped that little bit of energy i had left away… Last night i could hardly function and the tv was too much for me even really quiet so i was in bed from early evening and only just got up properly about 16 hours later. I have slept a lot so i hope i am ok now for my dentist appointment tomorrow… very tempted to cancel but i really need to go, it is overdue.

There is more plastering/decorating happening in the next couple of weeks but i won’t be alone with them so hopefully i can ignore it mostly. I hope things calm down a bit as i hate getting myself into that really bad state by overdoing it. It is distressing to feel so ill and incapable of simple things (like holding a mug without dropping it – it bounced luckily). I have felt quite emotional and i think that for me is one of the main benefits of pacing well, it that i can avoid burning out completely and feeling so helpless. When i do very little i can still feel pretty bad, but it is different to the feeling of teetering on the edge of total meltdown… some little voice says, have i broken myself this time? Will i get over this crash this time? My usual level of functioning may not be great but it feels so different to that.

I have been watching a BBC4 series called Dear Diary (still available on iplayer until 25th January i think, for those of you in the UK).

I have found it very interesting. The first episode was with Richard E Grant, the second with Mariella Frostrup and there is a third and final programme this week.

I use my diary every day for organising myself but I have never written a diary in the sense of writing my deepest thoughts every day. In times of stress/emotional turmoil i have found that writing things down just for myself to be of great benefit in making sense of my emotions. Sometimes there is no-one who will listen, or who you think you can be completely open with but the exercise of expressing (literally getting it out) onto paper is still useful, even if it does not come back with a hug and reassurance!

 Of course, there is this blog – though not like a diary in terms of a private, no holds barred account of my life – of course it is a diary of sorts. I thought about the points raised in the programmes and why i write the blog, what i gain from it and what the intentions are.

One reason discussed in the first programme was loneliness. A diary is someone to talk to. In the second programme they talked about Anne Frank’s diary and how she calls it Kitty, as if she is talking to a friend.

In the second programme Mariella raises the question of self-obsession. Are people who write diaries self-obsessed? This is something i struggled with when i considered writing a blog. It is a bit arrogant/egotistical to write about your life and expect people to be interested? What were my motives? Did i have anything useful/interesting to say?

I would say that yes, in some ways you do have to be a bit self-obsessed, but as someone with a chronic illness that is all i can be. It is impossible not to be when you are stuck with yourself, and your daily concerns and “work” (it is hard work) are to do with managing your self and body, trying to cope in a private adversity that those around you are affected by but cannot directly share in. I do not think i am special, except in the sense that we all are! I see my self obsession and all the management i do of self and body not just as survival for myself but also an exercise in minimising the negative affects on those who live with me and share my life. There is a sense that our life revolves around my needs, just because I have more needs as a disabled person. This is something i struggle with, but i know i should not apologise for, as i cannot help it. I do what i can. Also, honestly, everyone is a bit self-obsessed aren’t they? If you listened to people’s thoughts rolling through their heads i think most would appear that way at least some of the time.

As for blogging about my life with illness, I think there is a community and a sharing of experience that makes blogging not self-obsessed. Sometimes it really helps to read what others are going through to snap us out of a moment of self pity! It also helps with the loneliness of feeling outside of mainstream society.

I also think that blogging about living with chronic illness is not just saying “here, listen to my marvellous brain talking to itself” or “see how hideous my life is, i am in pain, pity me”; it is giving a voice to our lives and experience. We may not feel that we have this space anywhere else. Our lives seem invisible in the context of wider community. Our experience is misunderstood. For me it is also about reaching out and connecting with others that i cannot do in person. Being among others who share our experience, at least in part.

I would go further and say that this blog is a chance for me to document the truth as far as i can make sense of it: my experience of my own body and illness. I feel that i am constantly being monitored, being judged, graded and assessed by the medical profession and by benefits-related people and processes. I have to interpret my life and symptoms to fit the criteria deemed as acceptable, squeeze myself into the little boxes and simplify the truth. Things are being written about me on a regular basis! Letters fly from one department to another stating various “facts”. I also feel judged by people i meet in everyday life. “You look so well”. Hmm.

The second programme also talks about diaries written by people fighting in wars and those in concentration camps. The urge to write down and document their experience so strong that people have written on anything that was to hand, to make something that might outlive them, making a claim to existence, saying “i was here”; to not be forgotten in the face of death. It is bearing witness to what they have suffered, and documenting events that should be known.  It is a testimonial and giving value to each life. Each voice. When our personal experience becomes political maybe this urge is even stronger.

I think it is human nature to make a mark, to change something to show we were there, that we exist. We carve our names in benches and desks, we write graffiti. I would love to be published, and i think many people who have been feel a sense of having left something to be remembered by. Proof of existence. Maybe when faced with our mortality we cannot help having these urges. Chronic illness may fit into this category. Our relationship with our bodies changes and we perhaps see life differently. I feel there is a sense that it is political as well as personal, and that also drives me to document my struggles. I am here.

The extension of asserting our existence is being understood. As Mariella says in the second programme, as good diary can take the minutiae of life and make it universal; make it meaningful to others. That sounds very compelling to me and i have the urge to read some diaries! (Published ones of course…) Does anyone know of any good ones to recommend?

I just got home from my appointment. I go every three months and it is now over a year since i started to see her. This time i saw another doctor who works with her, though she was there and he went to talk to her about me at one point. This new doctor was really very nice and talked to me at length about how things have been and what my current main problems are. I told him that my itching has been very bad, though i have found a way to make it manageable it is certainly not a cure. He has made me a dermatology referral! I don’t hold out much hope of getting help with it or understanding it but i am very happy to have a referral after having had this problem on and off since i was 13!! (That’s twenty years or so). I hope that the dermatologist will be open minded and as keen to help as the POTS unit are… we shall see.

I also explained that i had only felt a very minor effect of the increased dosage of Midodrine due to all the other symptoms i have been having, particularly the viruses which have felt fairly constant in their impact. He decided to keep the dosage at the same level this time so as not to increase it too quickly and also in case the medication is contributing to the increased itching i think.

I told him that i had seen my GP about my lymph nodes in my groin area (though they seem a bit better now) and he felt my neck and underarms (said they seem fine) and took more blood to check. It is nice that they are so thorough. He also took blood to check my kidney function, not sure specifically why but it’s good to feel that they take things so seriously.

All in all it was a good visit, if a little intense, energy-wise. I managed to get my favourite taxi driver to take me there, and although he was not available for the return journey the man who came was also very nice. Even better, i met a nice family in the waiting room who had travelled quite a long way and were making their first visit to see the specialist. The daughter has ME and POTS like me and I spoke to them for a while and swapped emails etc so i hope we have some more contact. All that talking and effort expended has left me slightly buzzing (which is why i am foolishly writing this now, but i will rest when i am done) so i expect a (hopefully) mini crash over the next few days…

Although there is nothing to be done about how hard things have been recently, i really needed some positive feeling to come out of today. I feel that i was listened to and taken seriously as always there, which is all i can hope for in the short term and it is more than many people get! I feel good and cheered by my trip out of the house, and the social interaction was a real bonus.

I am attempting to meditate every day. It happened that i decided on New Year’s Day but it was not really a resolution so much as a coincidence. There has been some stress affecting me and i thought it might help me to take control of my mood a little, and make me feel stronger and calmer emotionally. I have a favourite meditation on CD that i use: Bodhipaksa – The Mindfulness of Breathing.

No, i am not on commission or anything, but i do recommend it as a simple and no-nonsense version of this classic Buddhist meditation practice. There is no silly music and he has a really nice voice with a Scottish lilt. That said, relaxation CDs are very personal, taste-wise, and you just have to find something that works for you.

The breathing exercise takes you through 4 stages (after the initial relaxing and settling in part) where you focus on out breaths, in breaths, spaces between breaths and then the point where the breath first enters and leaves the body, before widening the focus again to the whole breath and then body. It takes half an hour. I find it very effective and it feels like gentle exercise to me, as it stretches my lungs and i think relaxes my stomach muscles (as deep breathing makes the stomach rise and fall). I think this must be good for digestion/IBS too. I think deep relaxation must be very healing as the body is dealing with less stress, even if just for a short while each day, it must be good – maybe it releases some good chemicals or something! It makes me feel good and that is what matters.

It also feels like an achievement to do it regularly in a disciplined way, as i have done it every now and again in the past but have not stuck to it for long. I find it harder to do when very stressed/low/ill but i think with practice it is easier to get into that state and therefore it should be easier to continue in trying times. I thought it might also help when i get stressed/annoyed when i can’t sleep and help me to focus on myself rather than any snores/distractions coming from the other side of the bed! Well, i can only try…

I wonder if taking some control over breathing, one of the functions of the autonomic nervous system (ANS), can help it to re-wire/heal or whatever it needs to do… the brain is supposed to be able to heal and my ANS is obviously not behaving itself well these days. It would be nice to feel i was re-programming or something although my breathing is not really a major problematic area, except when i exert myself. Anyway, just a rambling associated thought there…

When i was at university i used to go to a weekly meditation group for a while, with an actual Western Buddhist Monk! It was the first time i had tried it and I found it absolutely amazing. I used to float down the road afterwards feeling fantastic. I think him being there in person guiding us through it really helped to get into it (despite the freezing university building and numb feet and nose). I tried after that on my own but found the internal/external distractions too much. This CD is the closest thing i have found to having my own monk with me! I have listened to it so many times over the last few years but he has yet to annoy me, which is no small feat.

I am not a Buddhist, but many people practice meditation and take things from Buddhism without being actual Buddhists. I think my capitalisation of buddhist is wrong also, i am sure i read somewhere that it shouldn’t be, because he was not a god, just a man… i don’t know!


I am happy to report that after yesterday’s walk in the snow i have not felt too bad at all today. I did meditate then sleep deeply this afternoon which may have helped, but i am encouraged, and have even dared to make an appointment to get my hair cut on Friday, which i could not face the idea of recently. I hope I stay ok until then. I will try to be good in the meantime!

Yeah! At last i went out in the snow! My partner shovelled the snow away so we could get the car out and drove me up the road to the woods. The snow was crunchy and quite deep but not too hard to walk in, the sun was out and I felt well enough to wander about for quite a while. I sat on a bench a while and the snow beneath me did not even melt! It was pretty cold but the sun made it feel not too bracing. It was such a relief to get out of the house and to be able to seize the moment when there was sun and fresh snow. It was breathtakingly beautiful.

I took some photos on my phone, some of which i will post here. I took others on film so i have not got them yet.

And here I am in action with my holga! I did not take this one, evidently. Oh, it was such therapy!

(I don’t care how bad i feel as a consequence, it was worth it.)

Well, it’s 2010. Happy New Year to all of you! As most of you have health problems like my own i would like to wish you all a better year in your bodies than last. I am certainly wishing it for myself, as i don’t want to be negative but this last year has been bad on that front. A little improvement would go a long way and just make life a little easier for myself and those around me. I hope we can all see some personal progress and if not, then some medical/research progress would come a close second so we can see some hope of change a-coming…

Here is a candle flame i took a picture of last night, seeing in the new year:

So i woke up this morning to unexpected snow! My partner went out and brought back some beautiful photos:

I desperately wanted to go out and take some myself, but i resisted as i knew it was a bad plan. I took a picture of my redcurrant bush through the window, which looked nice:

There is more snow forecast so i am hoping to take some more another day and maybe leave the house, even if i don’t get far there might be something different to see. It will certainly make things look nicer than usual!

As i contemplate the New Year, my concerns and feelings are much the same as i expect they were last year… how to manage my time and energies to allow me to do things i enjoy and not get bogged down in essential daily activities and medical/health-related appointments (although to actually be able to go to them would be a change on recent form!); what to focus that “excess” energy on for the most benefit to my mental/physical wellbeing; how to express myself creatively; how to spend time with people; how to give my partner a break from my illness and the extra pressure it creates; how to give myself a sense of a break, when i cannot really have one; how to plan for the future when i don’t know whether to assume the best or the worst or something in between…

Most of all i just want to see a bit of improvement, to be able to do a little more, go out a little more, eat more varied foods, be in less pain, feel a little stronger and have some concrete basis for hope that the rest of my life will not be like this, or worse. I would hate to look back on this past year and say that compared to the next it was a good one, but i know it is possible. I am a little scared of that. All i can do is stay strong and as positive as i can and see what happens, i am willing it to be better, i don’t know if that will help but it is all i have got, so that is what i will do. Onwards…

ME/CFS Awareness

ME/CFS Awareness


January 2010
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