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I was reading this blog for ME awareness day, where “Signs” talks about the story in the media recently where a woman (Elisabeth) in Austria, was locked up in a cellar by her father, Josef Fritzl for 24 years, and how people find ways to survive under extreme suffering. It reminded me of Alan Johnston, the BBC reporter who was held captive for 114 days in Gaza. I saw a headline after his release and it really struck a chord with me. Like Signs, i am not comparing my life or how it is living with M.E. to being held hostage with an explosive belt strapped to me, of course not, but what he said about Freedom when he came out really made me think:
“You want to do everything at the same time, to read books and papers, go to the movies, go to the beach and sit in the sun, and eat and talk and all the rest of it” – Alan Johnston
Freedom, it seems to Alan, it just being able to do everyday things. When I read this list, I could not help but draw parallels to my own life, as these are all things that I cannot do (or greatly struggle with) sometimes. I cannot do some of these things for months at a time, maybe even 114 days…
Also, in interviews about his time in captivity he has talked about things that made it easier for him to cope, such as listening to the radio and hearing that people were trying to get him released and were thinking about him, and being allowed to watch football once. This is something that interests me as i have found great comfort and joy in small and simple things when at my worst. When life becomes very small and you feel cut off from the wider world, small things can take on a greater pleasure or significance than they otherwise would.
This also brings me to a post by Rachel yesterday called “one day i will…” where she thinks about all the things she wants to do one day (when she is free if this illness) that she is unable to do now and considers that that day may never come. This is something that everyone with a disabling health condition has to come to terms with, but for those of us with fluctuating conditions where there is no prognosis as such given to us, how do we think about the future?
I am often asked by doctors, occupational health, psychologists etc the same question: “How do you see the future?” I hate this question and am usually flippant in my reply these days, saying i have not got a crystal ball. The reason it is asked is, i think, to perhaps get an idea of my mental state, and also (definitely) to judge my motivation to get back to work, but it is not a question that can be answered simply. I am also asked if I get the same amount of pleasure, or joy, from things as i used to. This is something asked recently with ticky boxes on my CBT forms… but there is no box to tick for getting more pleasure from something. Sometimes when I have been able to do something that I have been trying to do for months it can provide such a sense of achievement and pleasure, far greater than it would have otherwise.
I am reminded of Rachel M and her photo for ME Awareness Day: Long Driveway where she describes how cut off from the world she can be and also her blog about meeting up with a friend: Big Day Out where she is so full of joy to have been able to go and meet up with someone and have such a nice time, and how it left her smiling for so long afterwards.
Lastly, I read “The Plague” by Albert Camus a while ago, which is a novel about a town in which an epidemic breaks out. The town gates are closed off and the inhabitants are trapped inside and no-one knows how long they will be there for and whether they will catch the disease. These people are trapped and living in fear and the book looks at how they respond to this situation. Some of them were just visiting the town and felt they should not be there at all, some of them are separated from loved ones and do not know when/if they will see them again. These sentences are taken from pages 67-68 (Penguin Books, 1960)
“…we returned to our prison-house, we had nothing left us but the past, and even if some of us were tempted to live in the future, they had speedily to abandon the idea… once they felt the wounds that the imagination inflicts on those who yield themselves to it…
…our townspeople very quickly desisted… of trying to figure out the probable duration of their exile. The reason was this. When the most pessimistic had fixed it at, say, six months; when they had drunk in advance the dregs of bitterness of those six black months, … and… straining all their remaining energy to endure valiantly the long ordeal of all those weeks and days… (something) would suggest that, after all, there was no reason why the epidemic shouldn’t last more than six months; why not a year, or even more?…
…Therefore they forced themselves never to think about the problematic day of escape, to cease looking to the future, and always to keep… their eyes fixed on the ground at their feet. But, naturally enough, this prudence… refusing to put up a fight were ill rewarded. For, while averting that revulsion which they found so unbearable, they also deprived themselves of those redeeming moments, frequent enough when all is told, when… they could forget about the plague.”
This, to me really sums up the tightrope we (with ME and others whose freedom is compromised) have to navigate when coping day to day and dealing with the uncertainty of the future.
Well it is one week since i started taking my energy revitalisation vitamin power stuff, along with CoQ10, L-Carnetine, B-vitamins etc and over a week since i started to take D-Ribose, all as recommended in the book From Fatigued to Fantastic!
Although you are not supposed to feel any better so quickly i am a bit disappointed to have missed out on the two day high reported by Rachel!
I have had the odd moment of feeling good this last week, although not like real “lift off”, just happiness to have a whole day without head pains and so on… although i have had them most days and also bad heaviness/aching in my legs and back & arm pains that feel muscular and it’s a bit worse than usual… so if the d-ribose helps with muscular recovery then what is causing that? (I think tension caused by going to CBT and thinking about it too much may be partly to blame for the muscular aches – my thighs must tense when i am stressed as often they shake/tremble/ache after i speak to people intensely… wierd!). Walking the dog for even 10 minutes has felt almost impossible most days and i have shuffled to the nearest bench, told her to “get on with it” and had trouble getting up again. So maybe next week if these symptoms ease i will be able to see it as “proof” something is having an effect!
I am not too downhearted about it, it’s early days and i am not expecting miracles, but i am hoping i find my tasks this week is a bit easier to complete… fingers crossed!
Well, I did promise to write about CBT, a contentious topic for us people with ME (pwme)…
This post has been really hard to write, partly because I am so drained of all energy from going to CBT on Monday (It is now Thursday and I have been writing this gradually since) and partly because it is hard to write coherently about something that I am finding is linked to a lot of stress, anger, frustration, powerlessness etc. I am hoping that writing this, although draining in itself, will be more therapeutic than CBT has been so far… ha ha.
It (Cognitive Behavioural Therapy) is hailed by some as the one treatment that research has shown to be effective (but did these people who got better really have ME? Would they have improved anyway?), it is recommended in the NICE guidelines for treatment of CFS/ME but there is also a lot of evidence that it is unhelpful, no better than a placebo, or may improve people’s mental wellbeing/coping abilities but they are still as physically ill as before… see www.theoneclickgroup.co.uk and search for CBT and you will see some recent research and debate…
It also seems to be seen as a primary treatment option for this condition, which angers pwme as much as it would anger anyone with a serious physical illness… It apparently costs the NHS about £100 per CBT session so many people think that maybe focussing all that cash on physical investigations/research may be more worthwhile. I am sure it is very effective for mental health issues and for helping some people deal with their illness, but a cure it is not.
So, I had my second session and it was ok. Not much else to say to describe it really… nothing much of any excitement happened! I don’t think we have got started properly yet as we just seem to be collecting facts…
In the first session we discussed (or rather I was bombarded with questions – normal counselling, it seems, this is not!) about the time I originally got ill up until the present (a period of over 9 years), and this time we discussed all times before I got ill. I did get a bit upset talking about the time immediately before I got ill, as things were going particularly well for me then, but apart from that the session was all run of the mill. As most pwme will attest, we have to narrate our lives and histories over and over again to every new health professional we come into contact with and it just seems like going over the same old ground… While my CBT guy seems “enlightened” and does not seem to think CBT will be a miracle cure (but may help me to cope with my life better) he does seem to also be trying to figure out the mystery of it as well, he can’t resist it. They never can…
Guess what Mr Psychologist? No one who came before you made any startling discoveries about what caused my illness, but have a good rummage about anyway, be my guest…
He asked me questions about my personality… I can’t remember the question but basically was I the sort to run myself into the ground by overachieving, not relaxing, being wound up etc… Well, sorry to say that although I was young and passionate about life, threw myself into whatever I did with enthusiasm, I don’t think to any extreme that would have made me this ill… I get the feeling that it would be very convenient if I was a classic Type A personality then we would have something to work on. Even if I was, living with ME for all these years has changed me and my personality forever.
He asked me about my home life growing up, and unfortunately, it seems, my childhood does not seem to be any more unhappy/traumatic than most people’s (was your mother at home when you were growing up? er, yes, and my dad worked from home too!). Yes, I have had my share of difficult times but who hasn’t? When I try to say that the time just prior to getting ill was actually one of the best I had had for years, I am viewed with scepticism… (am I delusional now? or is it just disappointment that they can’t find anything/anyone (me) to blame…)
At the end of the session he asked me to write a diary for a week and to put in what I do each day, and also mark each activity with scores of 1-10: my mood, how much “joy” I am getting out of doing it (as opposed to before I got ill, I think), how much energy I have when doing it and afterwards, any major symptoms, how much of a sense of achievement I have from doing it, etc etc. He then said that we can look at it and he will be “another head” to be used to look at these problems and see if we can improve anything. All well and good in theory, but even he does not seem very enthusiastic. But maybe the diary will at least give him an idea of the severity of my condition which he does not seem to have grasped yet… maybe I will give him a copy of the one I did a few weeks ago for my DLA application, or one I did when I was attending the hospital group as well, just for good measure.
I may seem very negative about this whole thing, and unwilling to help myself. I do have problems coping with my illness and am getting increasingly frequent bouts of depression and sometimes anxiety too. But these are linked to times when I have an increase in symptoms and illness severity and I am just unsure if I am willing to give so much energy to this as an attempt to improve these things or whether I would rather see a friend, go out somewhere, get a massage, read a good book, etc instead… If I am going to overdo it, I would rather blow my energy on something with a feel good factor about it! It seems to take so much energy to get someone to understand my illness and how it affects me as a starting point for them to be able to engage with me, with no promises of it being anything more than a pointless exercise. I am trying to be open minded and “trust the process” but it is causing me a lot of stress already.
Unfortunately over the years I have had such bad experiences with psychologist-types (from NHS, insurance company etc) that I really am coming into this with “baggage”… I need therapy to get over my traumas from previous “therapy”… oh dear! After the first CBT session I got quite worked up about things he had said and judgements I could see him making about me (not very ill, looks fine, possibly in a “benefits trap” – yes he used that phrase) and had a bit of an anxiety attack… I don’t really care about what he thinks about me but what his report will say could matter, see HPI below…
Another reason to feel negative is how completely draining it is. Monday after the session I had a lie down but it was nearly tea time and I did not want to sleep so late on as it would affect my sleep pattern that night. I felt so awful that evening, brain completely mal-functioning and a struggle to watch TV even on quietly. The next day I was spent most of the afternoon in bed as I said in my little post, and I still feel terrible now. There are so many things I would rather have used that energy for than for telling someone about my childhood… again.
And so why am I even going? Well I have to go as it has been recommended by my HPI provider (HPI is an insurance payment – my employer has an insurance policy which means they give a proportion of your wages if you are on long term sick). So if I don’t go, it may seem as if I am not trying to help myself and they may then stop giving me my benefits… it was made quite clear to me that I need to comply with their treatments, as they want to “help me” and enable me to get back to work. While it was made clear that I should comply, they have not told me what my rights are to refuse treatment etc and what processes exist for any debate on this.
They are all nicey nicey on the surface though and ring me up all-the-time to check on how I am feeling about work, which feels like harassment sometimes. (I try to say it doesn’t matter how I feel about work as I am not in a position to even consider going! They seem to think that if I thought positively enough I would give it a go, and then everything would be ok… and cannot conceive that I physically cannot get there or at least, not without serious, distressing symptoms which would make me unable to function).
Although it is not a fortune I am getting, as I was only able to work part-time, I am very pleased to be getting this extra cash and don’t want it to stop, but how much can I put up with to keep getting it? If I say I don’t want to continue with CBT, what is next? Another doctors/psych visit (please no, I can’t cope with that), GET? (they already asked me if I have heard of it…), or just stop paying me? At what point do I say I can’t cope with the stress of the insurance company, and hand my notice in at work which will stop the payments? Why should I have to do this when I am still too ill to work and therefore entitled to the money? What about all the people in the same boat who desperately need the cash and do not have the choice? Is this what life without the NHS would be like? I feel coerced into having CBT. No, it has not been a trauma as yet, but it seems like such a waste of my energy. It is also caught up in all the baggage that I have due to the insurance company and the two doctors that they have sent to visit me, who originally recommended i go to CBT, whose visits I found very traumatic… I may talk about that another day!
Well, this has turned into a RANT! I better leave it there. I had better save some energy for my diary duties… hmm maybe I will start it tomorrow… or the next day… or the day after…
Just a quick note to say that while i have much to say about CBT, it will have to wait. After yesterday’s session i felt more ill and exhausted last night than i have done for weeks and today after a couple of hours of being up this morning & writing some birthday cards, a killer headache evolved and i have been lying in bed feeling so awful all afternoon: too exhasted to sleep or even feel properly relaxed but unable to even think straight… have arisen now at 5pm but not sure how long i will last… 😦 pretty sure CBT is not worth this – but my situation and the reasons why i am going are a bit complicated… i shall explain when i am more able…
Well “drum roll” this is the official opening of my blog! I know, i know i already wrote something on Friday but no-one read it yet and i just needed to know that i could work out the basics before the BIG DAY…
So it is (almost) International ME Awareness Day 2008! I have started this blog specifically for this occasion, as explained in my HELLO page.
I am going to talk about CBT soon (maybe tomorrow for a de-brief!) as that is what i am doing on Monday 12th May… having my second CBT session. This is not the way i would like to mark the occasion but as i can’t do more than one “big” thing on any given day (usually more like one thing in any given week), i shall have to wait til next year to join in any actual events that are being held to mark the day.
Surprisingly there actually is something going on near me – an Action for ME (AfME) pillow fight fundraising thing. I am a bit disillusioned about the whole concept, mind you, as even if i was well enough to get there and watch for a while (maybe of i took a taxi both ways – goodbye £25 – and wasn’t already having CBT), i think they really should do something people with ME (pwme) can take part in, not just their able bodied friends/family… being bashed with a pillow, however soft is not something many of us would risk with our dodgy muscles and various aches and pains… even the symbolism of a pillow fight annoys me… “lets make being bedridden sexy…” please NO. It also makes ME into just about being tired, and lying in bed, which oversimplifies an illness characterised by many diverse symptoms. Maybe i am being over-critical but it is not for me.
One thing i have heard of which anyone can do is a vigil… it may not be everyone’s cup of tea, but it is inclusive at least and creates awareness which is the general idea! See the website:
www.vigilformeawareness.org.uk/ I will be taking part!
Right, better go fill in the forms for CBT about how i have been feeling this week… I just don’t feel like i fit into the ticky box categories… i feel some scribbling coming on 😉
Well, this is my first post… on my first blog… it is also my first day of taking D-Ribose…
A friend of mine bought me a book called “From Fatigued to Fantastic” by Dr Teitlebaum and she has been taking it for 3 weeks so far (see her blog: http://chronicallyme.wordpress.com/. I had heard of D-Ribose before, in Dr Sarah Myhill’s CFS/ME book: http://www.drmyhill.co.uk/articles.cfm?subject=Fatigue and thought what do i have to lose?
I have been so full of despair in recent weeks but after reading the book i do feel a sense of Hope returning, and am pleased to be doing something constructive… although it is mixed with the feeling that i will not be able to fully try everything in the book (which is american) as a whole section is about hormones and taking hormonal supplements and getting certain tests done, which i doubt i can get via the NHS, and i don’t want to mess about with that kind of stuff unsupervised… I am hopefully going to see a hormone specialist soon as I have noticed quite dramatic fluctuations in my symptoms based on my monthly cycle recently and my doc did not know what to do about it, so maybe i can talk to the specialist about the book and it’s contents then… finger’s crossed they are open minded.
I have ordered lots of expensive nutritional supplements, including the D-ribose so that is a good start. I will be happy to get even a small improvement in quality of life as recently my life has become very small & to get further than ten minutes from my house by foot or car is a rare and amazing event. I have been really struggling to get through each day. Things have seemed to be just getting slowly worse and worse and i would really like to see a change in direction!
I feel i have been living without much Hope recently and i am unsure if that has been good for me. I can’t help but have a bit of an antagonistic relationship with hope these days: it seems at odds with Acceptance somehow.
Up until i became too ill to work again i felt i was on a very slow path to recovery as i had never properly relapsed like others seemed to; once i did i had to face the fact that after having this illness for 7 years there was a chance that i would always have it.
It seems obvious, but up until this point (when i asked my specialist straight out how many people who had been ill this long got fully better again and he said something along the lines of “not many – you will probably always be affected by it but may improve a bit”) all medical and other people had said to me that “most people get better”. In fact only about 10% of people with ME totally recover i read recently, many others improve to a good level of functionning but not to previous levels of health and about 20% stay seriously disabled, or even decline in health. (this is just from memory so don’t quote me!).
Why do medical professionals continuously say i will get better? Do they think i need to believe that and need to keep Hope? (This is especially galling when they only offer “Lifestyle Management” and don’t seem open to even trying certain tests or treatments which could help). After 9 years some of them still say it. It is the easy thing to say, but i feel it is also important to accept my life for what it is and not be waiting to be well to live it. I try to live it as well as i can within my limits, as i don’t know how i will be tomorrow or next year. Things could get (and have got) worse!
So, i had never given up on Hope completely as i want to be well with all by heart and soul, but maybe my hopes are smaller now. I just want to be able to get out of the house a bit more, be able to socialise more, be able to cope with short drives and be able to visit friends and family on the train occasionally… These things when i read them don’t seem small at all but they would be nice, wouldn’t they?
Dr T – i hope you know what you are talking about… you got my hopes up and i don’t need them dashed again…