Firestormm, who is one of the regular contributors to our news blog, has passed on this information from somebody with whom he is in regular contact. We think it's worth reposting here, and have the lady's permission to quote her:
I don't know if you guys ever get to hear tales of how the system – or rather some practitioners – actually does good. Me? All I tend to hear is the bad stuff most of the time.
So here you go (I have been told I can pass on by the author). She posted yesterday. Had previously had a nightmare time with her GP until this…
“…just wanted to say that I have had the almost opposite appointment today with my Physio at the ME clinic. I was fearing the worst after yesterday, thinking it was all doomed and I might as well give up all hope! Today was my first appointment with the Physio and she was great. She couldnt have been more sympathetic – though in a practical way rather than a patronising way.
She felt that my GP had been pretty unhelpful and to see someone else and that the GP obviously had very little understanding of ME and how hard it is.
Physio has given me some great starting points for pacing, and has told me that its no good pushing against this illness as I have a lower threshold than people without CFS/ME and need to work within my own energy threshold. She is hoping I get things a bit more stable so that I can start to build up some reserves and stop peaking and troughing, but not to expect it all at once as its going to take time. She believes I can recover, but she cant say how long.
Regarding work she thinks I may need several more weeks yet and will have to think about changing my work pattern and advised Occ Health involvement to do this. And she said I can ring her anytime for advice should I need it.
Its just so nice to have someone ‘on my side' with it all. I've got a few things to start trying at home in my own time and then I will see her in 2 months.
What a change from yesterday – today I am full of optimism and encouragement – and feel like ‘anything' is possible with time and the right changes in place (obviously I am never going to run a marathon nor write a book but at least there is hope of better times).”
Amazing how different things can be isn't it? I mean no new treatments, same old stuff, but done properly.Hope is out there and it doesn't take money to achieve it – well not all the time.
Thought it might cheer you a little.
Firestormm
Comments will be welcome.
Sorry to be a sceptic but this just concerns the first appointment.
Lots of professionals offering therapy can be nice for the first appointment as they want you back and you won’t have not improved/got better at that stage so no blame will have been put on you.
The physio has told her she can recover:
“She believes I can recover, but she cant say how long.” which may influence how she feels.
Basically too premature to say much I think.
Have to agree with Tomk on this.
‘Physio has given me some great starting points for pacing, and has told me that its no good pushing against this illness as I have a lower threshold than people without CFS/ME and need to work within my own energy threshold. She is hoping I get things a bit more stable so that I can start to build up some reserves and stop peaking and troughing, but not to expect it all at once as its going to take time. She believes I can recover, but she cant say how long.’
Recovery means an improvement from the present position. Not to full health.
This is about the pragmatic use of pacing, and the postive reinforcement of that belief.
There was no talk of a ‘cure’ or of other overstated practices that one could mention.
But your points are valid of course. The point was that she had been poorly treated by her GP and the comparison with the more understanding approach from her physio is, I believe, a noteworthy one.
Exercise will not improve the symptoms of ME, it will only affect secondary depression and anxiety. It’s not pacing though.
‘Health and social care professionals can help with managing fatigue, but because fatigue in [?] may have a variety of causes, and affects each person differently, there is no ‘one size fits all’ treatment.
Some people may be prescribed drugs that help. But for many, a combination of self-management strategies, physiotherapy and exercise helps reduce the impact of their fatigue.’
This is about pragmatically trying to live with our illness JT.
No one has said that we do not all suffer from a chronic neurological disease. No one.
The above extract relates to Multiple Sclerosis and is part of the MS Society’s brilliant range of support literature. I picked in up on my recent visit to hospital.
There were at least three displays full of A4 size brochures covering all aspects of Multiple Sclerosis.
Much I think can be learned from other organisations representing Neurological Disease sufferers, that could also be of benefit to us and our help and care.