I am in the process of retraining my silly, broken brain. It is as if the power plug was pulled out before all of the important documents were saved. For example my brain seems to have forgotten that night time is for sleep, it struggles to regulate my temperature, forgets to walk in a straight line, feels dizzy if I am not lying down or have not got my legs up.
I have learnt, as have my fellow sufferers, that stress and adrenaline is not my friend. A stressful situation for me now, in my state of ill health, is having to decide what to have for dinner. It is something so simple yet so overwhelming since my brain has apparently shut down on me.
Within months of my diagnosis I received support from my local CFS/ME clinic. I attended an eight week group therapy course. Each session was two hours long. An incredibly long time for someone so poorly. It was soul destroying to see how much worse I was compared to the others. Not that it is ever a competition. I remember being too weak to take the lid off a pen to write my name. I almost didn’t go back after the first week and not just because it was too much physically. The course equipped me with the tools I would need to help regain some control in my life. It constantly reminded us that there is no cure for us, only steps to help to get some of our life back. The sessions covered:
- Sleep hygiene
- Activity cycle-Boom and bust
- Goal setting
- Stress management
- Memory and concentration
- Pacing and Graded Exercise Therapy
- Cognitive Behavioural Therapy
- Purple time (I will get to that later)
- Setback management