I’ve been having to really pace my energy levels for the past few weeks, hence why I’ve been so quiet… Sorryyyyyy!
For the past six months, my physical health has been challenging to say the least. My body just doesn’t seem to be able to manage too well with what I ask it to do.
It gets to about 6pm when my pain levels become uncontrollably high and by 9pm, I have to lie still with my head pounding and my back hurting with all sorts of different pain. It even hurts to wear clothes!
So anyway, I started having problems with my wrist back in March/April and then I had a fall and both my knees dislocated. They have continued to come in and out of place, I mean the one time I did see my sister this year, she ended up having to put my knee back in place with Samuel.
I started working with a physiotherapist who specialises in hypermobility. She said that I need to gain muscle strength because my joints weren’t protected enough, and when I’m more fatigued my muscles don’t have the stamina to keep my joints in place. So I’ve been doing small gentle exercises to help my body.
It seemed to be going well, she was all about resting and only doing small amounts.
Then she hit me with a bombshell…
“I think you need to get an exercise bike to improve your overall fitness”…
In my head, I sighed and tutted to myself. The whole ‘here we go again’ and disappointment because I thought she was different…that she understood.
But the real bombshell moment was the fact that me, the person who has suffered with ME for FOURTEEN long years and has been in hospital, been subject to Graded Exercise Therapy that nearly killed me, didn’t feel able to tell her that what she was suggesting me to do was madness. I didn’t feel able to say “hang on, have you read the new draft NICE guidelines?”
It sounds stupid but hear me out…
I spent years and years being treated appallingly by a doctor (BOSS MAN in my book A Girl Behind Dark Glasses) and various physiotherapists. I’ve been shouted at for losing weight, shouted at for not improving quickly enough…basically shouted at a lot!
Even though I spent a lot of those years terrified of every medic, I did also meet some absolutely wonderful nurses and doctors. But why can’t I get rid of the deep wounds from my treatment in some of the hospitals I’ve been in?
I still feel that fear whenever I go and see a doctor…the fear of being disbelieved, or being told that I have to go without the medication that gives me a quality of life. The doctors still scare me… In fact I am absolutely terrified of most of them.
Although GET is hopefully going to be eradicated from the treatment for ME, I am scarred from what happened to me. I remember the sense of panic that came over me as soon as the doctor came into the bay to start ward round, all too well.
This latest shenanigans of physio terrorists (as I nicknamed them years ago) reinforced the fact that although the treatment for ME is beginning to change and improve and research is starting to take place, the actual issues lie far deeper.
It’s as if we have been to war and are suffering with post traumatic stress disorder.
Im oddly embarrassed that I don’t feel able to stand up for myself more. No matter how much I try to just put on a brave face and laugh at the ridiculous comments I’ve received…(a personal favourite was the “you just need a bottle of lucozade and a go on the treadmill”), it still hurts.
Unil there is more understanding for the suffering we have been put through both physically AND emotionally, I fear that many sufferers are going to continue suffering in silence.
