Tuesday, 8 November 2011

The first visit

Today I visited the Peterborough ME/CFS clinic for the first time.  I allowed plenty of time to get there, according to the GPS, but the final directions weren't too clear, and I had to try three or four industrial estates/shopping areas before I found the right place.

Right away, I felt like an impostor: "Would you prefer the stairs or the lift?" asked the counsellor, in a quiet, solicitous voice.  "Errm, the stairs will be fine," I stammered.  I have it easy.  After all, I had driven myself there.

I had at least an hour and a half of consultation, during which I cried at least half the time.  (This is par for the course for me and counsellors: I'm not generally a weepy person, but for some reason, the whole 'opening up' process just makes me leak at the eyes in an uncontrollable fashion.)  "What is upsetting you most, right now?" she asked.  I'm still not sure what the right answer was, but I said something about being scared that I was going to be told that there was nothing wrong with me; that I was lazy, and should just pull myself together, and get on with it.  (Certainly a true worry for me).  My fears were unfounded.

I could say a lot more, but - the outcome?  I have to keep an activity diary for the next few months.  I also have to record my energy levels three times a day, with an intention of keeping them stable both within a day, and from one day to the next.  My levels don't have to be high, just stable: this is about finding a baseline, and working to stick to it.

Also, I have to rest three times a day: 15 minutes in the morning and afternoon, and half an hour at lunchtime.  My definition of  'resting' has been radically updated: no television, audio books, internet, knitting...  I'm not sure I can find that much nothing to do in a day!  But I will try.  I have fought for this referral: I'm not about to disregard anything they tell me.

Oh, and I have to avoid 'cognitive activity' (reading, listening to audiobooks, watching television) for an hour before bed, too.  That's going to be *very* hard.


  1. Blimey that would be hard for me! I need the cognitive stuff to distract me from the pain :(

  2. Been there! Done that! The main thing that came out of my first appointment was that I need to rest more and a prescription for zopiclone. I'm still trying to decide if the latter is helpful or not. I am completely rubbish at resting and my sleep seems worse than.
    Sorry, that's not the helpful uplifting comment I meant it to be. I hope you do get useful things out of the ME clinic. The realisation that rest is good and it's OK to stop certainly helped me feel less guilty about not being able to do as much as I thought I should be able to, even if I'm still not good at actually stopping.

  3. hey hon, well done in gettin some help and advice. I found admitting this thing is real and not imagined was the first step. And yet is still something i have to constantly remind myself of daily, when i think i am being 'lazy' or 'un productive'. And i know that you have this too. So i feel really happy to hear what your saying here. And i know how hard it will be for you to 'rest' as you are a creature of making life count and being useful in your time. A friend told me recently 'nourish every part of your life' when i wasnt eating very well. But i have found its a good saying, a mantra perhaps for all parts of my life. So nourish yourself my darling as you are most definitely worth it.