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The last few weeks have been eventful.

I saw a Pain Specialist on the NHS a few weeks ago and it was a traumatic experience for me. I was not going to blog about it as it is a bit complicated but I will say that firstly I was very distressed by my level of cognitive function during (and in the days after) the hour-long appointment. I still have a very patchy recollection of what happened and what was said, complicated by my partner’s version of what he said (and what he meant by certain things) being different to mine, so in going over it together to clarify it I was further confused and my memory warped. Secondly, the man himself was quite strange and I found his style of communication and approach not to be one I could work with. I am still unsure what exactly he was offering me,  though I have been told by others who have been to similar things and by my CFS specialist that it is CBT-based stuff though he seemed to be dressing it up as something more. I was open to trying that for pain, which is why I went as I suspected that was what was on offer, but unfortunately he kept asking me questions and saying things that covered not just pain but my illness as well and I could not handle the overly psychological emphasis where that was concerned. He said a couple of things that were very dismissive of my physical illness and if he did not come from the “CFS is a false illness belief” school of thought he frankly should have enough nous to know it would be a sore point and make that clearer… he did not. I have been so scarred in the past that I cannot handle that kind of territory, partly as my cognitive problems mean I cannot challenge things that are said at the time or be assertive enough to make sure I am understanding things correctly if I am over-reacting. To get over this history and aversion even if he could help me with pain management would take a lot of work and feel like a fight, and I do not have the strength.

I have also just seen my CFS specialist. It has been over two years since I last saw him as I see the POTS specialist regularly so there is not really a need to see both. I wanted to talk to him about a few things. We talked about my neuropathic pain (something I did not get to ask the pain specialist about properly in the whole hour as he liked to talk and had his own agenda). I asked him why I have it, if it is common with ME/CFS, if it is a sign that I have fibromyalgia and if I can expect it to get worse (if it is degenerative).

His answers were: That is it part of the neurological changes that are responsible for the over-sensitivity to light, noise etc in pwME (he calls it CFS of course) and that this is just over-sensitivity to touch. I am very over-sensitive to touch, certainly, and cannot be touched much in everyday life, or only in certain places and in certain ways. The pain is triggered by touch, whether that be of air, fabric, moisture, heat, cold, my own hair or dead skin, etc etc, but it seems to me that touch-sensitivity and this pain are a bit different but neurologically they are obviously very connected… anyway, next question:

He says, yes, that yes it is common with CFS. I have never spoken to anyone with CFS that has these symptoms as extremely as I have, but maybe they do exist, or perhaps he does not realise how extreme my case is? Some people with Fibromyalgia seem to share these symptoms but again I have not spoken to anyone who has it exactly like I do… granted, he sees/knows more people than I do! (I also asked about my Trigeminal Neuralgia as that is also nerve pain I wondered if it is connected. He said it is not associated with CFS and it just something I happen to have and will continue to have on and off).

As for if it is Fibromyalgia (FM), he says that he sees FM and CFS to be like a piece of string with pain being predominant on one end and fatigue being predominant on the other and that people are somewhere along that spectrum. He said there has been one study which suggested they were distinct entities but he is not convinced. He says that many people with CFS have fibromyalgic pain to some extent. I would suggest the piece of string could be a loop as some people have both fatigue and pain pretty badly!

As for the degenerative nature of the neuropathic pain he says it will be worse when my condition is worse and improve when I am in better phases… no discussion of whether my condition in general could be degenerative, but he seems to think waxing and waning is the general pattern. I have been stuck in this bad phase a while though! Bring on the better phases…

He also said that I would probably not want to up my dose of Gabapentin much more than the level I am at… the Pain Specialist said it could go higher but that whatever I do, eventually my body will get used to any pain medication and the pain will be back how it was before. There’s a cheery thought. The Pain Specialist did talk about medication and said he will recommend some options to try when needed so that may be a useful outcome from that meeting.

I was happy with the CFS specialist appointment and his answers to my questions.

Interestingly the CFS specialist recommended a book by Jon Kabat-Zinn. I have ordered it. It is about mindfulness and coping with illness and pain I think, though I am not sure how specifically targetted to that. After a quick survey of facebook friends I thought it sounded worth looking into as people said he was good. One friend also mentioned Breathworks to me and the courses on Living Well with Pain and Illness look really interesting to me. I do not think I am well enough to attend the courses in person, but would prefer that, though they do do a telephone-based version. I am going to look into it.

I am reassured by my openness to this that I am not closed to the mind-body connection or to looking at my own behaviour in order to get the most out of my life limited by illness and disability. I do not know why I over-react to the CBT stuff which may in fact just be trying to do the same thing using a slightly different approach in the end. I cannot help feel though that with the CBT stuff the people offering it to me seem to want to use it to deny my illness, not to start from a basis of “yes, you are living with a physical, likely permanent and pretty severe illness, but let’s look at how you can live best with it,” but more like “You are focussing too much on your physical symptoms and making them worse, and frankly we think that much of it would disappear if you just did this CBT (and were open enough to it) and you would live a much more normal lfe.” I know that how we respond to our illness and pain, how we think and how we react can affect our experiences but there is a huge limit to the curative effects and this is the issue I have, I think; the basis and assumptions on which this is offered. The breathworks video I watched on the site showing an interview with the founder of the company shows that her attitude is much more about accepting the reality: I have pain, I have disability, I have illness and that is unlikely to change. Then we can move on to work with this reality.

Am I being over-sensitive to the Psychologist’s approach and denying myself something free and useful on the NHS? I just know it causes me so much stress to engage with it, it is probably not worth it anyway… it looks like I will be finding my own way.

One thing that came up in the Breathworks video is remembering a happy/pleasant experience in order to take yourself away from current distress. I tried it this morning when I woke up too early and was in tears in seconds. I have tried this before with similar effects. It seems that the grief is still just below the surface and will not go away despite having now been ill and supposedly processing this fact for twelve years! I think it is harder to grieve when things fluctuate and change and nothing is certain, or we grieve for what is lost, then we become worse and have to start the process all over again. That is how it feels anyway; constantly adjusting to a new reality. Well not constantly, as nothing much has changed lately, but quite often. My partner suggested thinking of something happy from my life now, rather than picturing something from “before”. I very wise suggestion and perhaps I need to choose something that is still possible, at least while it seems I am feeling so much grief.

I need to work on acceptance, though I do have quite a lot by now. I am not sure the grief necessarily leaves us just because we are accepting though? I certainly think acceptance is easier when we understand what is going on and I think I am getting a better understanding of how my neuropathic pain fits into the bigger picture now.

One thing that really made me angry in the Pain Specialist appointment was him asking about what I wanted to do with my life and how I saw the next decade etc. This always annoys me. How can I express in a sentence all that that question summons to the surface? How can I express how I get through each day and try not to make assumptions about the future? How can I endure sitting there and having my levels of acceptance and hope judged by another stranger who clearly has no idea what a loaded question he is asking? How can I genuinely answer a question I have been asked it too many times?

I answered after a long silence with a bit of waffle, a shrug and a “que sera, sera!” I was not functioning well cognitively and just could not come up with anything more lucid, but looking back that is how I feel: what will be, will be. I do not believe that hope will save me, I believe in acceptance. I may have hopes and dreams and they are important but I am not about to share them with him or anyone like him who cannot see the reality of my illness and is already judging me before I step into the room, or at least has not got proper knowledge of my illness on which to base his assessment.

Defensive? Probably. I am trying not to care and not to over-analyse myself, but that is also hard not to waste energy on… is my confidence another casualty?

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I was planning on writing a thorough review of the book How To Be Sick by Toni Bernhard, but I am taking advice and guidance from Michael Nobbs in his new ebook Sustainable Creativity and I am keeping my tasks simple and manageable. If I write a short review I can get it done today and have a sense of achievement, rather than not finding the energy for days/weeks and having the task hanging over me. He also encourages us to not care if something is not perfect, allowing us to get on with our day. This review will not be well honed but I hope it will be good enough. I am not even going upstairs to find the book to refresh my memory before I start!

In How To Be Sick, Toni combines the experiences and challenges that chronically ill people face day-to-day with Buddhist teachings in a very effective and seemingly effortless way. It does not feel like the chronic life is being forced to fit into a paradigm, it is as if these two things were meant to be thought about together.

I found that I did resist buying this book, despite the good reviews. As someone with very longstanding ME/CFS  I have become wary of self-help advice. Often it is forced onto us, inappropriate, claiming to cure, patronising, making assumptions about us and so on. Or we seek it out ourselves and get “self-help fatigue” on top of the illness itself as we work so hard to challenge ourselves, examine ourselves and change ourselves and just end up twisted in knots feeling no better, calmer, stronger or healthier. We then feel a failure and I for one no longer take part in these activities. I suspect I am not alone. Who, when chronically ill, has the energy to keep constantly looking at themselves in such an intense manner?

So against this backdrop, Toni has bravely approached the problem in a new way. It really does feel so refreshing and when I actually picked up the book and started reading I felt no resistance. It is written in an easy to understand, absorbing, humourous way (I laughed out loud at a bit about Sarah Palin!). Most importantly she takes us on her personal journey and explains how difficult she still finds some of the practices, rather than saying she has reached some level of perfection (enlightenment!) and therefore effortlessly copes with all day-to-day stresses and restrictions on her freedom. Of course she doesn’t, she is only human, and that approach allows us all to have a go, Buddhist or not.

It is really refreshing to read the examples she gives as I had also found myself in these exact same situations. Perhaps it is because Toni has ME/CFS and POTS as I do, that our experiences are so similar, but I expect that actually the experiences of chronically ill people are more universal, regardless of our specific conditions, than we realise. Which begs the question: Why is our experience so marginalised and misunderstood, even by people whose job it is so see us regularly, ie medical professionals? (See previous posts for where this issue is coming from for me!)

I have occasionally done Mindfulness of Breathing meditations over the years, in phases. I first started before I became ill when a monk came onto campus once a week when I was at university to do a guided meditation. I found very powerful and energising at the time. While it is harder to do in a body which is constantly uncomfortable and without your own monk to guide you (!), I have found that being guided by a recording is also good. The book made me see this practice in a new way and I feel encouraged to keep doing it and getting more and more from it.

Lastly I would like to say that even if you know nothing about Buddhism, this book is very accessible. It has sparked an interest in me to look at it further, especially the specific concepts that Toni works with in the book. (Michael Nobbs actually posted a link on his website to Audio Dharma and a talk about Embracing Imperfection, which echoed some ideas from Toni’s book. I just went to find the link to post here and see that Toni has done her own recording on the site! Small world.) 

What really felt encouraging for me was that although I had not heard of many of the Buddhist ideas in the book, I found that I could relate to the practices. I realised I have been doing some of them by myself. For example, I do enjoy the joy of others more than I perhaps did at the start of my illness, even when I cannot participate in the source of that joy (although there are some people with which this is easier to do, than with others who make no acknowledgement of your own situation! I still have work to be done.). It is nice to feel that you have made some progress yourself inadvertently just by living with illness so long.

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!

ME/CFS Awareness

ME/CFS Awareness

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