Saturday, 22 August 2015

ME CFS pacing

Yesterday I went to collect DD2 from a week long summer music school which always finishes with the most fantastic of concerts.  I guess I'd watched about 85% of it before I all of a sudden felt very warm and had to remove my cardigan, then I had a pain in my sola plexus and then horrible palpitations.  I looked at Ant and I think he knew what that look meant, I had to leave.  Luckily we were sat in the front row and when the piece they were playing finished I headed out to the corridor where I sat with water wondering where I could reasonably lie down or whether or not that would make me feel any better.  I went cold and had the shakes with tremors and then gradually it all subsided.  I could hear the finale of the concert, but it's not the same as being in the audience.

It reminded me very much of a similar incidence back in June at a speech day when I was just sat watching an event and enjoying myself and almost exactly the same thing happenned.  That day I put it down to the heat in the marquee that triggered the reactions.  Ant says it was hot yesterday in the music hall, but I didn't feel it.

Anyway, afterwards yesterday my head hurt and this morning I woke up weak and with a headache which hasn't moved all day.  I was supposed to be out with Ant and Ben today, but I couldn't make it and they went for a boys day out together.  I have spent the day in my pj's on the sofa.  Yet another planned day out missed.  Probably my own fault for over scheduling myself (again).  I had had a reasonably busy week this week, but I seemed to manage pretty well as it was happening, yesterday, whilst I was sat relaxing and listening to music my body objected retrospectively.

6 years down the line you think I would be better at knowing what I can and can't get away with, but I am still unrealistically optimistic about what is possible.

Saturday, 15 August 2015

6th anniversary

Today is the 6th anniversary of me falling ill with ME.  I'm feeling OK about it at the moment.  It hasn't been the best 6 years, there has been so much in that time, that I have wanted to do and not been able to.  Equally, just because of my nature I have probably done more in that 6 years than lots of healthy people would have done.
It seemed fitting that I travelled to see my cranial osteopath today, he has helped me so much over the past 6 years.  It only takes him 40 minutes to treat me now, it used to take an hour and a quarter.  I feel so weird afterwards, light headed and vacant, but nearly always sleep better following a treatment.  It has been a valuable part of my treatment.

Thursday, 13 August 2015

It's been a while...

It's been  two and a half months since I last posted.  I'm not sure what has kept me away, maybe I just don't like writing about negative things and have avoided updating for that reason.  Now I am annoyed with myself for not doing so, as it's so easy to forget how I've been and what has happened and I've lost the opportunity for "as it happens" recollections, now everything is retrospective.

So, what has been going on in the last eleven weeks?  Well, things have gradually been improving and I would say that my steps are now at a baseline of around 3000 - 3500 per day,  that has come by means of a steady increase.  I still cannot exert myself physically in any way and am finding even the therapy center yoga class hard going (although that too has improved slightly).  I am walking around a bit more and haven't needed the wheelchair.  Walking even very short distances was making it difficult for me to talk with effort, that has gone now which is comforting.  Whereas when I first came out of hospital I was scared that I wasn't going to be able to build myself up again at all, I now feel a little more hopeful that I will get back to my pre-hospital levels of activity.  I do now feel I've plateaued again though and am not sure whether there is any more I can do to assist other than rest.

Rest is a difficult one as I am already so de-conditioned that resting (pacing) makes me feel like it's not helping, but I know it's what my body needs right now.  I know that because, the minute i try and do "too much" I get palpitations and the fatigue just cuts in.  So, it's a VERY fine line between resting / pacing and keeping up current levels of activity - a constant balancing act.  It's always been that way (as it is for anyone with ME), but right now it just feels more delicate than ever.

I asked my GP if I could access some more CBT to help me deal with the frustration of not being able to do anything and as always he kindly obliged.  I've always thought that the usefulness of CBT is dependent on the therapist and your connection with them and sadly, unlike my previous experience, which I found very useful, this lady just didn't seem to get inside my head.  She didn't seem to understand my thinking or give me any ways of dealing with the frustration.  Of course I had to fill out the mandatory "are you depressed" questionnaire.  "Well, you're not depressed" she said, ...yes I know that!!!  I already knew that before I ticked all your boxes!!!  I've come to you for help with the frustration of not being able to do all the things i want to do, not because i am depressed.  So, her advice was that she thought I had not accepted my situation and that I would find things easier once i did.  I don't even know what to say about that.

Nine weeks ago we had a long weekend in Centre Parcs where I spent a lot of time sat at the side of the pool watching the others.  We used the wheelchair a lot which I didn't like.  It did at least mean I could do things I wouldn't have been able to without it and join in a bit more which made it more bearable.  It was a relaxing break.

I've also had a Perrin technique appointment and stepped up my massages to see if that will help, so now back to having the full massage every day lying down rather than just every other day standing up.

A few weeks ago I was diagnosed with skin cancer, Basal Skin Carcinoma  A GP treated it twice with cryotherapy but then sent me to a specialist who organised a biopsy.  He was hopeful it could be treated with photodynamic therapy, but after the biopsy they have decided that it would be best treated with surgery.

Recovery has been slow, I feel I have missed the summer really, but I am trying to make the most of the energy I have and be grateful for what I can do.  Still my mind buzzes with ideas and  more things it wants me to do. In my head acceptance means trying in some way to curtail those urges to act and as frustrating as not being able to do those things can be, I'm not sure I want to "accept" and curb the desire.