Showing posts with label graded exercise therapy. Show all posts
Showing posts with label graded exercise therapy. Show all posts

Wednesday, 18 May 2011

New Path Awaits

So much to digest since my last update.

Let's begin with the previous post. In it, I very bluntly talked about the future and the fact that suicide was always one of the options on the table. Mostly, this was understood but I feel the need to clarify that I was NOT suicidal. I don't intend to take my own life tomorrow, next week or next month. It's simply the case that it must be kept in mind along with the possibility that I might be permanently unable to take part in life to any great degree. I know there are some people who love me who worry when they see me mention such subjects but I have always taken the view that this blog should be full of raw honesty and I have to maintain that decision. I will, from time to time, talk about subjects that are taboo within society or that unsettle others. That's just the way it is.

My last update also elicited a very interesting conversation with a friend. Let's call her April (not her real name). April was one of those I probably classed in the broad category of 'healthy friends' and my last post expressed how I felt like I didn't exist anymore. April got in touch and was quite angry about the assumptions I was making on the subject. What initially began as two very opposing views gradually turned into a very useful discussion that made me think a lot about my present reality and my future. It turns out that April has been suffering from Rheumatoid Arthritis since October last year, a condition just as incurable as M.E. and every bit as disabling (and probably much more painful). April has also had to adapt to a life where a lot of her independence is lost and she is battling very unpleasant symptoms with an illness that is regarded as chronic.

April takes a very different approach to the one I have taken. She doesn't make her condition public on places like Facebook for example. I, by contrast, have surrounded myself with Facebook friends who are also chronically ill as I need to feel understood, believed and supported. After reflecting for a while on our different approaches, I can see positive and negatives in both. The subject is way too long to get into right now but I will be writing about it in due course as it fits in with some very important decisions I've been making lately.

Returning to the present, today I was visited by my existing Occupational Therapist and an OT and Physiotherapist from the Rehab team at the local council. My existing OT was delivering my new bath chair and the Rehab team were here to talk about how I can have a decent level of independence and keep my muscles from wasting away without risking crashes/relapses.

The bath chair was a shock. Such equipment is very clinical looking and is designed with the elderly in mind more often than not. It therefore is quite difficult to psychologically adjust myself to needing it. It looks very like a stair-lift and operates the same way so it's hard not to imagine one of those TV adverts with the old dear travelling up the stairs with her cup of tea in her lap. However, I tried it out and there is no doubting it will be useful and will allow me to use much less energy when bathing.

The rehab team were focused upon more physical aspects and we have agreed a low-level exercise plan to try for a couple of weeks and see what the after-effects are. I'll probably keep an 'activity diary' so I can measure how much I can do without 'crashing'. I'm also going to get elbow crutches to try as they may allow me to be on my feet a bit more without being in danger of falling over! They also told me about a Community Car service that sounds wonderful. I would pay for it in much the same way as a taxi, and would have to book the service a few days in advance, but the driver and vehicle would be a lot more disability friendly and could allow me to have some independence in terms of GP and hospital appointments etc.

All of this has really lifted my spirits. I am delighted with how helpful and compassionate the therapists have been and I really feel like I have people on my side. I also feel like I have aspirational goals in terms of independence and getting some sort of quality of life back. It feels good to entertain the possibility of escaping these four walls.

A few days ago, I had been at a cross-roads and had made a decision that it would be worth having temporarily increased symptoms if it meant I had some sort of life experience again. So, the support from the therapists are going to fit very nicely with that decision. It might be that my abilities remain pathetically low for a long time to come but it seems important to try and check where my boundaries are and how much I can do. Even having one day of 'activity' each week would be much better than the current situation where I am almost living in bed.

So, a new path awaits. One that will be difficult and will contain setbacks but one that has great potential and that I want to try. I still have to work out a lot of stuff in terms of what I want from my life, healthy or ill, but that can be a work in progress. For now, it just feels important to have a little hope for the future. There are also a couple of 'treatment' options I am considering but I will get into those another time as this post is already way too long!

Wednesday, 23 February 2011

Licking The Wounds



Sometimes it's necessary to retreat. To lick our wounds and admit we are fragile.

Lately, I have had to do just that. I had a birthday at the beginning of the month and have gone downhill markedly since then. I am confined to bed much more than I was previously (and even previously it was a lot!), I am unable to take care of my daily 'maintenance' tasks such as washing etc. I haven't had the strength to write to many of those who were kind enough to send birthday gifts and cards. I haven't had the strength to go back to see my doctor or to have the remaining blood tests done. I haven't even had the strength to have a telephone conversation with my own mother for the past three weeks.

I have had to abandon thinking about anyone other than myself. I haven't been able to do any work on the projects I was hoping would benefit the M.E. community and I haven't been able to support fellow sufferers in the various groups I am a member of. I haven't had the strength to take my pills some days.

All of this isn't said to gain any pity. I think there is a larger point I want to make. Actually, there are two, maybe even three!

Firstly, the personal aspect. A lot of my sense of self worth has always been dependent on my output. On what I achieve and on what I can provide others with. I am largely a rescuer by nature - trying to intercept and fix problems. The past few weeks have taught me how damaging that is to my health. I literally have the energy supply of someone who has congestive heart failure and yet I'm beating myself up for not being more supportive of others. That can't be healthy, if you excuse the pun.

Which takes me onto the second, more general, point. For all of you reading this - whether sick or healthy - do you also need to consider whether you are looking after yourself enough? I'm guessing the answer is "yes" for most of you. Please give it some thought as health is so very valuable, I realise that now. And, even if you are sick, the current level of health you have, however low, is also to be cherished and protected. Don't let well-meaning personality traits take that health away.

And finally, the PACE trials that have managed to generate so much worldwide publicity. Why is it that the mainsteam media are able to ignore most of the scandal and the meaningful biomedical research on the subject of M.E. but are so willing to swallow the dishonesty provided by a bunch of UK psychiatrists and a study that any fool can pick apart with ease? I must admit, I lifted my head off the pillow on the day the news hit, looked around me with despair at how widely it was being reported, wrote a grouchy post on Facebook and went back to sleep. So depressing. My guess is that the only way to counter this is to win the PR war. For that is what this is, in my view. The truth has become irrelevant. Most of the world take, without question, what they hear in the mainstream media as gospel. Only by accessing that powerful influencer of the masses will we be able to fight back.

Friday, 28 January 2011

Illness and Politics


My last update delved into politics. It was a move away from my usual blogging topics.

This update is asking for less politics. Especially in relation to the millions of us who are ill and caught up in political storms.

I am utterly pissed off with the politics and sniping that accompanies my illness. Yesterday, the Medical Research Council (an independent UK body that decides which research proposals will receive Government funding) made the almost unheard of decision to ring-fence £1.5m for the biomedical research priorities that the working party had identified. Note - biomedical... not Cognitive Behavioural Therapy or Graded Exercise Therapy!

The announcement was met with, on the most part, scorn by the 'community'. £1.5m isn't nearly enough - this is an empty token gesture - blah blah. Now, I know the sum involved isn't huge. But for fuck sake people, it's an almost unique scenario. Never before have I heard of the MRC giving such special treatment to specific research proposals. Change has to start somewhere and isn't always massive initially.

Then we have the two camps still bickering about whether XMRV is THE key or whether it's a load of bunkum and the fight should all be about separating M.E. from CFS. For ordinary idiots like me, I read one side of the argument and decide it makes sense. Then I read the opposing side and change my mind.

I'm ill. All I can know for sure is that I'm ill. I want to be made better. I want to be cured. In the absence of that, I want to exist in as positive an environment as possible and to provide support free from politics for others who are ill.

Why couldn't I have got a disease that wasn't so bloody political?

Friday, 21 January 2011

The Power of Being Heard


Here in the UK, our expectations of treatment for ME/CFS are somewhat lower than some other countries. We are still routinely offered Cognitive Behavioural Therapy and/or Graded Exercise Therapy with little attention paid to physical symptoms. This, of course, angers me and the more I hear of the injustices served out to fellow sufferers the more angry I get.

Today I reflected on that sense of anger almost making me give up. I keep very up to date with all the advocacy groups and, whilst I'd never recommend burying your head in the sand and ignoring all that is wrong out there, I do wonder whether I need to spend a little less time focusing on what is wrong and more time focusing on what can be turned into positives. This update will address two areas linked to the theme.

Firstly, I visited my GP today (primary care physician, I guess they'd be called in other countries). I had, after being referred to the 'ME/CFS Centre' and not finding much of value there, almost given up on the medical fraternity and decided it was pointless dragging my exhausted body to appointments with doctors if nothing was going to be treated. However, I decided to give my GP one more try as I knew he was a guy who generally listened and took my opinions onboard.

So, I spent a large part of this week nervously preparing. I had booked a double appointment so that, in theory, I would have 30 minutes of his time. I had also booked a nurse appointment for straight after, in the optimistic hope I might get some blood tests authorised. I identified various tests that I felt should be carried out to exclude underlying infections (from parasites, bacteria or viruses) and meticulously prepared mini-speeches on why he should accept my requests.

I began by asking him to honestly share his views on ME/CFS and on what he was doing with other patients who had the illness. He was very honest about finding treating the illness frustrating (he's a man and a doctor - he likes to fix things!) and that he believes it is a physical disability of unknown origin. The poor guy must have felt like he was speed-dating me whilst I weighed up his pros and cons. I explained that I was frustrated with the diagnosis having the implications of me being beyond treatment and simply being left to manage as best I can. I then began what I thought were going to be fraught negotiations on which tests I could have. I fully expected to be told that I had received all the standard blood work and that nothing else would be done.

To my surprise, he agreed to every test I asked for! In fact, he added one I hadn't thought of. He also said he wished his medical student had been present as I was an "expert patient" who could pass on valuable learning. Whether this was empty flattery or not, I don't know, but it sure hit the spot!

Regardless of whether or not the tests throw up anything we can treat, I left feeling validated. I was heard and I was respected. Sometimes the positive outcome doesn't have to be that what is wrong is fixed. Sometimes it can be that we are simply listened to. He has said he is open to exploring different treatment options with me as long as I can back up my requests with meaningful research papers/data. This is potentially massive when considering how far behind the U.S. the U.K. currently is. There is much I can explore now, with the faith that the wisdom of people such as Dr Lapp, Dr Cheney or Dr Klimas might influence my own doctor.

So, I gave some blood for tests and I have to go back to give more (a lot more!) soon. A very productive day!

This also links in with the aims I had when setting up M.E. Community Projects. What I hope to achieve isn't based upon righting all the wrongs out there. It isn't based on anger or cynicism or negativity. It is solely focused upon those little, tangible ways of making a difference and helping others to feel supported, heard and validated.

Things are moving well in this area. I have been lucky enough to convince two very talented people to take overall responsibility for the editorial and design elements and we have already begun scoping out the first resource we will develop. If you want to get involved in some way (be it research, opinions, writing or supporting the cause in some other way) I'd love to hear from you.

The email address is: me_community_projects@live.co.uk

Here's to more of us being heard and supported :)

Friday, 12 November 2010

A Corner Turned

Quite a lot has happened since my last update. Well, in relative terms - my life is hardly swimming with activity these days!

I realised that I was still doing that 'headless chicken' thing of devouring everything I can find in terms of a possible cure. I was so keen to beat this illness that I lost sight of reality a little. I thought I'd come up with the perfect combination of supplements and be back to normal in no time. I guess it's understandable that I thought like that but it's not very helpful. So, I'm done with searching for now. I'm sticking with what I still think is a good range of supplements to support me whilst my body heals.

In a very timely manner, a lady on the Vimeo group I mentioned posted an intriguing video about working within our aerobic thresholds. As we try to 'push through' the fatigue and weakness to get things done, we call upon energy we don't have. That leads to episodic relapses that leave us feeling worse. It's why exercise can be downright dangerous for people with M.E. and why I get really angry when I hear people with the condition being told to 'roll up their sleeves' to overcome the symptoms. The symptoms are there for a reason; to protect us from organ/tissue damage.

So, the concept is that, by using a heart rate monitor that alerts us when we are reaching our aerobic threshold, we can avoid over-exertion and thus avoid relapses or periods of feeling a lot worse than we did. Conversely, it should result in me being able to do more. I'll learn what my limits are and what I can achieve without my heart rate getting too high. It won't be easy as my heart rate heads over 100 when I stand up but with patience and common sense it should free me from either being afraid to do anything or doing something that knocks me backwards.

I think I mentioned previously that I had joined an online community of people who are dealing with very similar challenges. That really has been the biggest boost I've had in ages. I decided that I wasn't going to join a local support group as, rightly or wrongly, I felt it might end up dragging me down further. It's so easy for me to be negative or feel sorry for myself nowadays and I was worried I'd get involved with a group where there was lots of whinging and not much in the way of proactivity. That's probably very unfair to all the local support groups out there but it was how I felt.

Anyway, I'm glad I took a bit of time to find somewhere online that I could get involved. It's strange but I already feel closer to some people I've interacted with in that place than I do to certain people that I've known in the flesh for many years. I guess that is partly because we have shared experiences and therefore understand each other and partly because most of those who were in my life previously have carried on with life and we've lost touch.

Another positive is that I have been awarded Disability Living Allowance. I felt strange about applying for this, partly because I don't really want to be tagged as disabled and partly because I always said I'd never claim benefits. However, I have to be realistic as I am now unable to do the smallest things. I completed the form honestly so I have nothing to hide or live up to. I'm spending a fortune on medications (you can get relatively little via NHS prescription) and various gadgets and amenities to be able to function in my home so some money coming in will definitely help with all that.

I've moved into a top-floor room now (house has 3 floors) and that has been a wise move. It removes me from all the activity that takes place on the ground floor and means I can choose when I'm able to take part in things rather than just always 'being there'. I'm doing a few things to make the room more comfortable and functional and I think it'll do me the world of good to have this quiet space as noise is actually painful to me now at times.

Sleep isn't so good unfortunately. Although I was a zombie at the beginning of my illness I did get loads and loads of sleep and that helped protect my body from damage. I think I still need 11 or 12 hours of sleep or complete non-activity each day but sleep isn't forthcoming. I have an appointment with my GP soon so that's top of my list to discuss with him.

I think that's enough for now.

Take care,

Barry

Thursday, 30 September 2010

The Hard Truth

My previous post focused upon the dilemmas involved in managing an illness that is still so poorly understood. Moving on from that, I want to now address my Grand Plan of Action. Okay, so maybe the capitalisation is overdoing it ;)

The past week has contained some challenging days. Days where I've seriously wondered whether I have the desire and strength to persevere for the long haul. To clarify, I don't mean I am suicidal or depressed (although I naturally have periods of low mood, as anyone in this situation would). I mean from a more pragmatic point of view. If my life for the foreseeable future is to be led from a sofa/bed and I am unable to retain enough energy and concentration to do meaningful things that stimulate my mind then how much quality of life is there?

Part of my journey has been to learn as much as I can about my illness and how best to manage it. I now feel I have a reasonable grasp of what I'm up against and have digested the views of many different leading practitioners who have been working with M.E. patients for some time.

The first thing my knowledge has provided is a dose of realism. It's natural that people will tell me I'll get better soon etc. Even I still sometimes refer to myself as being temporarily unwell. But let's be realistic and use real data involving real people. The likelihood of me making a full recovery and being the person I was before I got ill is around 5%. Which of course means there is a 95% chance I won't ever be the old me again. Amongst that 95%, it is roughly split in half between the probability of having periods of remission and relapses (boom and bust in economic terms!) and the probability of getting progressively worse before I stabilise.

Now, I'm not being a doom and gloom merchant here and I'm not giving up all hope of a recovery. Rather, I am merely being realistic in gathering comprehensive data as opposed to anecdotal tales of individual outcomes. So, what about the stories of 'magical' recovery using techniques such as the Lightning Process or other 'mind over matter' approaches?

Undoubtedly the mind is a massively powerful tool and plays a huge part in how we feel physically. I completely accept that. However, if I do indeed have M.E. then there are various things going wrong within my body at a cellular level that positive thought or determination cannot possibly cure. I mentioned in my previous post that the landscape of understanding of M.E. is a rather unruly mess. To expand on that a little, I think I now have a better grasp of why M.E. and CFS should not be used on an interchanging basis.

Chronic fatigue is a symptom rather than a diagnosis. Yes, I have fatigue but it is only one element and probably not even the main one. I have had post-viral fatigue before and I can say with absolute certainty that this is way different. In fact, this all probably started with post-viral fatigue (I was sleeping lots and lots in the early period) but it has developed into something much wider. I'm still not totally convinced that M.E. (as defined by the World Health Organisation) is the correct term for whatever is wrong with me but I must accept that there is currently not an adequate clinical definition at this stage. It is my belief and hope that this will change in the future and that a better understanding of my condition will lead to a more appropriate clinical definition. It's not an easy task as every time I try to pin a description on it I am reminded that I am describing symptoms rather than disease itself.

I am therefore convinced that there needs to be a separation of those who have chronic fatigue syndrom/post-viral syndrome from those who have what we currently know as M.E. in order that clinical diagnostics are more readily definable. It might sound like I'm saying I am more ill than someone with post-viral fatigue syndrome or more deserving of research/sympathy/compassion but that isn't it at all. The waters are murky because a whole load of conditions are being lumped together under the M.E./CFS bracket and that makes the task of classifying, researching and treating the conditions almost impossible.

So, now that I've dipped my toes into these politically charged waters and risked the wrath of those in the community who disagree with me, what next?

Independent research is still the way forward, I feel. I've been able to build up a comprehensive understanding of what different treatment methods are being used in various specialist clinics (not NHS ones, i'll come to that in a minute!) and of the theories surrounding what is going on within my body. I am still of the view that nobody has yet uncovered the full picture and therefore I must approach each theory with a healthy dose of skepticism. However, impressive track records exist in various countries, including my own, in terms of managing similar conditions and I should not ignore that.

I mentioned the NHS. The current NICE guidelines worry me a lot and the more research I do the more I am convinced that I should retain control of my own treatment plan. Graded Exercise Therapy is a key tenet of those guidelines and is something I will be encouraged to partake in. There is overwhelming evidence that suggests to me this increases the likelihood of a severe worsening of the condition and I will be refusing that particular method of treatment.

So, now I've mentioned all that is wrong - what is right? Well, I will make use of this blog to cover in detail the treatments I am going to be relying on. In fact, my next post will begin that process in earnest. I say this with a full understanding that I am merely 'managing' my illness. There is no cure (yet!) but my understanding of what is going wrong within my body, and the clues afforded by various pioneering souls in the medical community, does allow me to make some pragmatic choices about how best to lessen symptoms. That in itself would have a major impact on my daily life. Imagine if I could have a shower without feeling like I'm going to pass out afterwards or walk to the bathroom without feeling like my heart is going to burst out of my chest or without breathing like a breathless old man. Yes indeed, managing symptoms and reducing their severity even a little will benefit me greatly.

Take care,

Barry