Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Sunday, 12 April 2009

Brainwashing and torture won't cure us

The Countess of Mar, speaking in the House of Lords on March 18th:
... CBT is rarely offered without GET and ME patients know only too well-and their views are supported by some 4,000 papers on scientific and clinical research-that GET makes their symptoms worse.
CBT = Cognitive Behavioural Therapy (Brainwashing)

GET = Graded Exercise Therapy (Torture)

Honestly, no-one would choose to continue to exist (you could not call it a life) with an invisible illness, if all their ills could be eliminated by "simple" brainwashing and torture. 

My GP and another doctor in the practice have both mentioned exercise to me a couple of times. Whilst I understand why, this makes me so angry, because clearly, they don't really know me (hardly their fault, given the limitations of the system they have to work within), they obviously don't know what it feels like to have fibromyalgia / ME/CFS/PVFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome) (and I certainly wouldn't wish it on them), but advocating exercise without asking what I've already done and feel about this, appears to me to be because doctors are expected to take for granted that we're all lazy, ignorant lardarses.

Now, I'm not denying that there are a considerable number of lazy, ignorant lardarses in the UK, but it's definitely undue discrimination to tar us all with the same brush.

Apart from the fact that, back in the day, I used to regularly swim, run, weight-train, take jazz dance classes, disco dance, jig about on a stage, walk miles and miles ... Believe me, I was the first to promote the theory that I need enough exercise to prevent me from ceasing up, but not so much as to cause me unbearable pain and fatigue that prevents me from even getting out of my bed. Common sense? You'd have thunk so, wouldn't you, but nobody's granted with having any of that nowadays.

Of course, the doctors have also "bought" the guidelines wholesale (as I'm sure their careers depend on doing so) that were clearly written with little or no regard to science and patients' needs and everything to do with saving money on benefits and making even the limbless walk (and therefore work).

The fact of the matter is that in a suitable climate, I used to be able to get just enough of the right kind of exercise, frequently enough on MOST days. And I did so willingly, knowingly and proactively. The number of days when the weather wasn't good enough were sufficiently few enough not to impact.

On good days, I took longer walks, slowly and deliberately, trying to keep up some level of fitness, whilst not overstepping my limits. Shopping trips did still cause me a lot of pain and fatigue, but I coped with them, by not making too many of them, resting first and crashing afterwards. It wasn't a perfect solution, but it meant I could manage most of the things I needed to do, most of the time.

Stress, pollution, diet and more also contribute to a worsening of symptoms, but if the temperature in my surroundings dips below 20 degrees centigrade, then my muscles spasm and tighten making ANY movement excruciatingly painful. Imagine a feeling like they're tearing. Imagine trying to make a frozen chicken walk. If the temperature outside is below 15 degrees centigrade and / or there is any amount of humidity (does not have to be actual precipitation), then even a short walk causes unbearable pain. The result, in the UK climate, is that for at least 10 months out of 12, it's too cold and / or too damp for me to go outside or get exercise at all without this causing pain that is totally disabling in nature. Then, even the short walk to the loo or the kitchen become monumental tasks from which I collapse, breathless, exhausted and in pain.

And I'm talking pain that is severe enough that:
  1. I feel (and on occasions have been) sick (beyond simply nauseous).
  2. Is so distracting that I cannot concentrate on anything; not even banal TV programs and my sight is blurred or eyes hurt too much to watch it anyway.
  3. If I was asked, I doubt I could have strung my first and last names together, let alone a complete and literate sentence.
  4. It feels like I've been beaten and bruised from head to toe, have half my bones broken, joints dislocated, am burning up in fever and am near delirium.
  5. It hurts so much, I'm often in involuntary tears, but I dare not sob, because even that movement would be too painful.
This pain does not respond to over-the-counter painkillers and if I take anything else it will probably cause constipation so severe that ... repeat steps 1 - 5 above.

Are you getting the idea? The only thing I can do at these times is to lie flat (even sitting up is too much) in a darkened room, hoping to fall asleep. Or die.

We're told to pace ourselves so as to avoid such "boom or bust", "all or nothing" events that cause such severe flare-ups, but without transport or real help, there is no way to avoid them. Shopping trips (I mean for essential items such as food and medication), trips to support groups (long since abandoned as harmful), even medical appointments create bloody hell. And during this past week alone, I've had over three days like that, because of 3 appointments.

Notwithstanding the fact that the cost of memberships to sports and leisure facilities or for exercise classes are prohibitive to someone on the sort of meager benefits we're required to subsist on; classes are often in the evenings when it is unsafe to go out even if we could do so, when there's no public transport running, even if it passed those places, which it doesn't. I can no longer drive. If I walked I'd be in the sort of excruciating pain I've described above and, from all that it should be obvious that I wouldn't be able to exercise on top of making the journey to the facility.

Swimming would be great, but when you've suffered with cystitis for 35 years, you know never to get into baths of water, especially not ones with bleach in them.

After at least a decade of reasonably successfully pacing and managing the fibromyalgia symptoms that I've been suffering for a minimum of 15 years, I reckon I have a pretty good handle on what I can and can't do by now and, more specifically, what happens when I attempt to push myself a little further (as in graded exercises). It does not increase tolerance making it possible to do more, as it would in a normal, healthy person. What it does do is to make matters worse in the short and long-term (possibly even permanently), by making flare-ups occur more frequently and for less.

And, apparently, 4,000 scientific and clinical papers agree with me.


fibrohaven said...

This is a very good rant! Living with FM for 13+ years myself I can relate to it all! I describe my bad flares like I was hit by a giant truck. How else can I make sense of my entire body hurting to the point of vomiting and madness.

Personally when I go off on a rant like this I often feel better afterwards, and I am not necessarily looking for advice, but I am going to make a gentle suggestions to you - only because I believe in it SO greatly.

I was an athlete like yourself before an accident sent me spiraling into FM hell. For the last 13 years I have tried over and over again to start a gentle exercise program (including pool therapy) and each time it resulted in the kind of flare that makes you wonder how it is possible to exist in so much pain.

Several weeks ago a member of my support group suggested I try yoga. I tried a gentle yoga class and now I am a true believer in yoga's power to heal. I describe it like my muscles are melting after a long cryogenic freeze. Yoga slowly warms your body up from the inside and the muscle relax and release through the posses. It has not caused a single flare up, my range of motion has increased and my daily level of pain has decreased. It is even helping my brain fog.

I am making this suggestions because I feel so much better and it has only been a few weeks. I go about twice a week. Like you I had sort of resolved myself to not being able to exercise again. Why would I ever deliberately put myself in a flare! But yoga has been a gift. I have a DVD and a mat at home, or I go out to the wellness center where I am a member. Either way I am feeling so much better, and my goal is to work up to 4-5 times a week. I believe I can do it - gently and slowly.

Please consider this for yourself. After 15 years of pain, you deserve some relief. If you would like some advice or input you can contact me through my blog. I am just a rookie and a novice, but a true believer in yoga for pain relief.

Nobody said...

Strangely enough, I'd tried Yoga many years ago (pre-fibromyalgia), so it makes perfect sense to me as a possibility, but I really don't have the ability, nor space and facilities to do this at home. If I wanted to look for a center that does classes, I'm back to the problem that there just are none within an area I can get to, without getting there being too much (and ill-advised, walking, from a security point of view), let alone attempting to do anything physical at the end of it. I'm trying my damndest not to be defeatist, but realistically, I just cannot see a way around this frustrating chicken and egg situation.