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Well, it is the end of February. One sixth of the year has disappeared and it has happened pretty fast. I do know where it has gone, I have been working on my Disability Living Allowance form for most of this time, when I have been up to it.

This form has taken over my life, along with appointments with all the medical professionals involved in my care to ask them to write supportive evidence for me in support of my application and also to talk to them about what is needed (as usually knowing about my medical conditions does not mean a doctor knows about how it affects me personally, which is what the benefits people need to know).

Last time I got help from a charity as it was the first time I had applied and had little idea what was required. This did help a lot in terms of energy for filling in the form, though not the outcome. This time I have largely filled it out myself, which with my physical and mental stamina has meant it has taken me a very long time. My partner has helped me type some parts and has physically written up the form, as well as checking what I have written and suggesting things I have forgotten, and that help has been really helpful but she is so busy that I could not ask for more and frankly, I am the one who knows the most about it and how it needs to be done. She could have gained that knowledge but it just seemed above and beyond to ask her to do that on top of everything else she has on her plate.

I know that my facebook friends and others are probably sick of hearing me talk about it as I have vented a little during the process and all will be relieved to hear that it will be sent off this week! Hurray! I cannot wait to see the back of it though I know that next time I hear anything it will be a request for a medical, which last time I found VERY traumatic and lead to the denial of my claim and I had to go to appeal. The whole process took a year. It was successful in the end, but I am really not looking forward to that all over again. It really takes over your life and energies and it was a hard year for me. I have filled this form in so thoroughly and carefully in the hope that it will go through and I can avoid that year of hell this time. I am crossing everything but I know that just about everyone with ME goes to appeal. Even my CFS specialist said so, so I should not get my hopes up. I know that so many people are going through benefits processes and appeals at the moment, the whole UK system is in a mess and people are being treated so unfairly. It is really inhumane.

Anyway, two months of my available energies have been used up already and I really want to use what I have now for better and more creative things. I have several new arty books from Xmas that I want to look at for inspiration as well as projects I have been planning for months (actually years) that I want to get on with. I also have a lot of fiction/non-art books that I want to read – I love having a pile of books waiting but at the moment it seems a little too high and I keep dipping into new ones before finishing the ones I am on! I need to focus on the ones in hand and ignore the temptations of the bookshelf or I will not fully enjoy each one as I go as I will have half an eye on the next one – no way to be!

One of the best things to happen so far this year was a couple of weeks ago I went to see The Imagined Village. I have seen them before and knew it would be good, but it exceeded my expectations (except it seemed to be over far too quickly) and it was a night to remember! I always love to see Eliza Carthy live, and they are all such talented and enthusiastic performers that it is a real joy to see people doing what they evidently love. There are more concerts planned by them and other related artists to raise money for Norma Waterson (Carthy) and family who is Eliza Carthy’s Mum and who is very ill in hospital. Details here.

Other news, my sister is coming to visit me this week! I have not seen her for nearly two years and I am looking forward to some fun! Also my garden is coming back to life after all that snow in December and I am feeling a little hint of spring in the air… I hope to be able to get outside a bit more soon.

Also interesting to note that though I don’t feel dramatically better, I feel that my condition is more stable in terms of energy at the moment. I do not seem to have much variation even after I have been to an appointment (or been to a concert!). I do still get post-exertional malaise, but it is not as severe as in the past (relative to my overall function levels) and I am finding I am getting more pain instead, if anything. This change is actually welcome. (I think one of the worst things whatever level of function is the unpredictable and ever-changing nature of this illness and not knowing what is ok to do and what the day will bring). I do rest more before and after an event and I am careful in what I choose to do and cannot go out often, but I feel it is not such a big risk to go out occasionally. I don’t mind taking more painkillers occasionally for a good reason. I think my wheelchair is helping me not have such a dramatic reaction to being out, and also perhaps my Alpha Stim and Acupuncture are helping me. I am sleeping better in general and I think this has a lot to do with it. My nerve pains are also more under control with the Gabapentin dose I am on and this of course helps a lot. Anyway, it is nice to have some calm and I hope it continues like this a while, especially if it means I can do some nice things at home and pop out a bit more. I could do with some fun, and I am sure I am not the only one!

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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?

ME/CFS Awareness

ME/CFS Awareness

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