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.
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.
Beauts it's good to see you back. Was getting a bit worried about you for a while. But...OMG...BCC! I don't know what to say except I'm glad to see you're getting through it and wish you well in your recovery. My cousin was diagnosed last year, 6 months before her wedding. She had surgery and was given the all clear a month before her wedding. She still needs to be followed up but you can get through this. Please keep us posted on here x. I'm sorry to hear you've been set back a bit with your energy levels. I've been having similar problems. It's like you can't seem to break through that 'energy ceiling' that always seem to stop you short of just where I would like to be. Dr Myhill has put up a post on reprogramming the brain if you feel reasonably recovered but can't seem to get to the final post. It's worth reading if nothing else: http://www.doctormyhill.co.uk/wiki/Reprogramming_the_brain_in_CFS/ME
ReplyDeleteI've asked Dr Myhill if she thinks the protocol would be good for me but has said I need to see my own GP as I've never actually had a face to face with her. I KNOW my GP would be a dead end.
Anyway just wanted to let you know that it's good to see you posting again. You have been missed...x