I had my first appt with the ME clinic last week and I have to say I am feeling pretty positive about it. I saw a senior physiotherapist (the clinic is also run by psychologists) and focuses on a CBT and GET based approach (cognitive behavioural therapy and graded exercise therapy for those not familiar with these terms).
The first appointment consisted of me 'telling my story' about becoming unwell, how things have been for me over the last eleven years and what helps and negatively affects my health. The physio was very understanding and appeared to have a good knowledge of ME (always reassuring!)
She talked about the role of adrenaline and how it appears to affect a lot of sufferers who feel as though their system is running on overdrive, something I can relate to. To obtain a picture of what my week is like and to try and balance this a bit better, I've been given some activity diaries to complete and have to highlight these to show whether I'm resting or participating in a low, medium or high energy activity. Initially if was quite difficult for me to recognise what categories to place activities in and also it's a very personal area depending on how affected someone is and their limitations. I've got to grips with it now though and have been finding it useful to see exactly what I'm doing in a day and how my days can really fluctuate. I've noticed my diary has had some huge blocks of highlighted orange (medium energy activities) and so I need to try and ensure that I have some low energy and rest periods around these so they are spaced out a bit more. But I'm guessing that in a fortnight at my next appointment, the physio will help me to look at this.
In terms of goals i know the clinic isn't offering a cure and is a lifestyle management course so my main aims are to balance my week better and start incorporating some more gentle exercise into my week and build on this. The physio seemed happy with this plan. So I'll keep you updated as to how it goes.
On an even more exciting note we have a house! In an area that we wanted and move in there in around six weeks so lots of packing and paperwork to be done. Will be interesting to see how my activity diary looks as the date gets closer! Eek!
It's really interesting to hear what was discussed, and how it's the activity / energy management process that they're focusing on (for now, at least!)
ReplyDeleteThanks for this update, and look forward to hearing about your (hoped-for) improvements! The activity diary with color coding sounds a great idea, I might try that!! :)
Good luck with that, and with the house move (so exciting!) x
Hi Jo yes I think getting more of a balance will be good for me and although there are set topics every week, they seem to be pretty flexible with what is covered and are led by the client and their needs and expectations. I've really done activity diaries as I couldnt see how they would help, given my work and family commitments but in fact I think small tweaks to my day could actually make a difference - here's hoping! And thanks re the house move - cant wait to get in now! x
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