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| St Paul's is closed today |
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| Weary camper |
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| No tuition fees here |
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| Barking mad protester |
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| Pitching an idea |
I was happy with my CBT sessions. My therapist was amazing—she was understanding and encouraging, which is a very rare quality. She offered my a couple of appointments with a physiotherapist which I accepted—and it turned out to be the dreaded Graded Exercise Therapy.
The physio who does the GET programme believes that most if not all ME symptoms are due to deconditioning. Cognitive symptoms, light sensitivity, headaches—it's all because we rest too much. Even catching a cold can be explained by deconditioning. Apparently. I sat though her pitch. We looked at the GET info together—her idea was to do this sitting side by side 1-to-1 thing—and I listened to her recite her mantra whilst she traced on the page with her finger the vicious cycle of rest that leads to deconditioning that leads to more rest, that leads to road to hell. And so on. If you suffer from deconditioning, so she says, it will even become more difficult to socialise and you will feel demoralised. And on and on. And then she tells me it's a 12 session course! Oh fucking no, I thought.
But it get's worse. She read out a list of types of exercise and asked me if I was interested in any of them. Jogging? No. Joining a gym? No. Playing sports? No.
Now, I'm not against physical activity. And yes, I agree to some extent that a degree of physical deconditioning is inevitable. But…you need to get better before you can increase your levels of activity. Increased physical fitness is a beneficial side effect of getting a bit better but you can't force it. Been there, done it, bought the nightie.
At the end of the session she set me some 'homework'. I had to write down what she wanted me to do by the next session on some sort of task sheet at the back of some ring binder she produced for me. One of my 'homework' activities is to read up to page 11 of the GET bible. The other is the dreaded activity diary which she will no doubt read and tell me off for having some immoral hedonistic lifestyle of breakfast in bed and snorting too much diet coke.
I left the appointment feeling like I'd been spoken to like a wayward schoolgirl who had been caught smoking by the games mistress. I was seething. I thought that after my appointment I'd be going out to play with my novelty plastic lens and taking some fun photos. So much for that idea, I thought. I took the train into town with no particular destination in mind and after a seriously indulgent caffeine and chocolate fix I went to see what was happening at St Paul's.
A toy camera lens is hardly the right choice if you want to do a bit of photo-journalism but it was all that I had with me. The best kit in the world isn't much use if it's at home in the wardrobe, is it? And as Julia Cameron tells us, you've got to show up at the page—even when your page is a plastic fantastic toy lens. Gotta click!
As for my activity diary, yes, I think I will fill it in with: joined a protest camp: 15 minutes
The physio who does the GET programme believes that most if not all ME symptoms are due to deconditioning. Cognitive symptoms, light sensitivity, headaches—it's all because we rest too much. Even catching a cold can be explained by deconditioning. Apparently. I sat though her pitch. We looked at the GET info together—her idea was to do this sitting side by side 1-to-1 thing—and I listened to her recite her mantra whilst she traced on the page with her finger the vicious cycle of rest that leads to deconditioning that leads to more rest, that leads to road to hell. And so on. If you suffer from deconditioning, so she says, it will even become more difficult to socialise and you will feel demoralised. And on and on. And then she tells me it's a 12 session course! Oh fucking no, I thought.
But it get's worse. She read out a list of types of exercise and asked me if I was interested in any of them. Jogging? No. Joining a gym? No. Playing sports? No.
Now, I'm not against physical activity. And yes, I agree to some extent that a degree of physical deconditioning is inevitable. But…you need to get better before you can increase your levels of activity. Increased physical fitness is a beneficial side effect of getting a bit better but you can't force it. Been there, done it, bought the nightie.
At the end of the session she set me some 'homework'. I had to write down what she wanted me to do by the next session on some sort of task sheet at the back of some ring binder she produced for me. One of my 'homework' activities is to read up to page 11 of the GET bible. The other is the dreaded activity diary which she will no doubt read and tell me off for having some immoral hedonistic lifestyle of breakfast in bed and snorting too much diet coke.
I left the appointment feeling like I'd been spoken to like a wayward schoolgirl who had been caught smoking by the games mistress. I was seething. I thought that after my appointment I'd be going out to play with my novelty plastic lens and taking some fun photos. So much for that idea, I thought. I took the train into town with no particular destination in mind and after a seriously indulgent caffeine and chocolate fix I went to see what was happening at St Paul's.
A toy camera lens is hardly the right choice if you want to do a bit of photo-journalism but it was all that I had with me. The best kit in the world isn't much use if it's at home in the wardrobe, is it? And as Julia Cameron tells us, you've got to show up at the page—even when your page is a plastic fantastic toy lens. Gotta click!
As for my activity diary, yes, I think I will fill it in with: joined a protest camp: 15 minutes
10 comments:
'Graded activisim' - yes, I like! I do not like the sound of the GET business at all - all those assumptions. They do not apply to me or any pwme I have had contact with. I push at the boundaries all the time, rising, risking, only too painfully aware of deconditioning effects on the body. How did you come to have these therapy sessions?1 The GET part sounds dreadful. But keep us informed!
Brilliant pics...love them and always appreciate when other people share what they have seen and I cant get to :O)
Didnt know you were being dragged down the CBT/GET route ....what brought that on. Had your ESA assessment yet ? Great fun.
Have you ever thought of taking your camera to such sessions and using it there...a la Jo Spence....could see you doing that..taking control.
If I hear of a physio being bludgeoned by a Scot with choccy all round her mouth I'll know the rozzers are looking for :O)....and breathe........
I asked my GP to refer me to a CFS unit last year because I wanted to find out whether there was anything on offer that could help me. I was offered a course of CBT which I found helpful particularly as I was doing my photography course and I needed a bit of help organising my life around its demands.
I'm not of a fearful or fatalistic disposition. I'm not the stereotypical wiling wallflower. My thoughts don't need a lot of challenging in the sense of the CFS/CBT model of treatments that assumes we're all wimping out on 'self limiting beliefs'. As a talking therapy it was worthwhile especially after my experience of a so-called ME support group where I encountered a degree of disbelief and a lack of acceptance.
As for GET, I had no idea that it was a 12 session course. I thought it was 2-3 appointments of general advice from a physio. I can't decide whether it is worthwhile. There may be aspects of GET that *might* be helpful, but with many ifs and buts and caveats.
I'm not impressed with the GET woman. My first impressions are that I'm dealing with a zealot who quotes the GET bible chapter and verse.
I did hear a new one though—"relative rest". We might not 'rest' but if we have 'relative rest' if we reduce what we do, she says. So, they can argue their way out of a paper bag these people.
Horses for courses I think. I did CBT years ago and found it a complete waste of time...mind you the Practitioner told me herself she knew nothing about M.E. and tbh she didnt seem inclined to learn. Did GET too....very early on and I'm convinced that is what made me permanently worse. Sorry to sound a misery but just my experience.
BTW I never ever had you down as a 'wilting wallflower'....as if !! LOL !
Thanks, Cusp. Stay tuned for more 'graded activism'!
I guess I've got to be political about GET. There's an element of keeping the GP sweet and I have NHS funding for treatment even if it is CBT/GET.
But to be honest I don't have a lot of faith in GET. I'm also a chronic ME sufferer as a result of inappropriate advice in the early stages.
As for photographing the GET sessions, well…the GET physio is some scrawny skeletal woman who looks like a refugee from an eating disorders clinic. Perhaps a secret audio boo project might be an idea ;-)
Doesnt matter if she's scrawny and ravaged looking....a little touche eclat and WONDERFUL lighting darling....thats the way... and then a really good key light for you when you tell her where to stick her GET :O)
Dig, You have to get away from this GET wifey, she is surely crazy as a bag of snakes.
Ha, word ver is 'gonedef'.
I would certainly go deaf if I had to face this GET fanaticism.
Take a copy of the recent International Consensus Criteria and the Rituximab trial as your homework. Seriously.
Well, to quote "Mr Dig", with regard to my activity sheets he said "You've got an imagination, haven't you?"
I'm going to play it by ear but there's no way that I want to do less of the things I love just to struggle to meet someone else's idea of what is 'good for me'.
The worst thing about this GET woman is that she doesn't seem to have much spark or imagination or understanding of what makes people tick.
Dig, Please be careful, really - these CFS therapists are brainwashed, they do not understand the mitrochondrial damage in ME, they read from a script, their CBT/GET bible - I would not touch them with a bargepole - why be in a situation where you are stressed and seething, I think it so unfair that you feel you have to 'keep your GP sweet', though I do empathise, of course I do. I am actually glad we don't have these CFS services up here.
NMJ, I agree with you about treading very carefully with this GET thing. I'm far to cynical to buy into the GET propaganda. I'm not convinced AT ALL that ME symptoms are created by deconditioning, although I would say that maybe 5-10% of symptoms might be the effects of deconditioning AFTER exertion/overdoing it in the following 2-3 hours - such as some muscle symptoms. Feeling crappy the next day, or a delayed reaction of 2-3 days is NOT down to deconditioning.
I know that the GET woman will tried to assert that it's all the other way round, but we know that's bullshit.
I do have good reason to increase my physical abilities and maybe work a little bit on improving my mobility and physical stamina, but I have found that in order to do that you need to get better from ME first. You can't make yourself better by forcing yourself to walk when you're not able to.
I don't agree with that stupid Blue Peter diagram of the 'vicious circle' that they conjure up to explain their theory because I know that I can suddenly and unexpectedly start improving when coming out of a bad phase after several weeks. My legs will feel like jelly when I'm in a relapse and suddenly those symptoms will just go despite having been physically inactive for several weeks. All that stuff about increasing your hoovering by 2 minutes a week is also a load of bull. Either you can do something (within limits) or you can't.
I also told her that living your life according to timed episodes of mundane activities makes for a boring life. If someone's goal is to walk twice a day to their local Spar shop, well, they might as well aspire to be a goldfish swimming around a bowl all day.
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