I am struggling with quiet frustration at the moment due to an extreme lack of energy. Well, not so quiet, as am sure Andy would tell you.
The problem is that, for any Chronic Fatigue/ME sufferer, intense tiredness is frightening. We know what it can do, how long it can last, how it has dogged us in the past. We are terrified of tiredness – the word itself completely inadequate – because we cannot reassure ourselves that we will get over it by next week, or that a good night’s sleep will see us through.
At this time I’m on more meds for these idiotic headaches (much eye rolling and not so quiet frustration, again). I am aware of the possibility that this utterly shattered state could be a side effect. I spoke to the doctor on Thursday; she said I can come off them if the feeling becomes unbearable, if only to see if it is indeed the tablets to blame. I’ve decided to do that. I need to know what I am dealing with – and if I discover it is the medication, I can ease away from the automatic feeling of dread.
I have appointments coming up in April – one for the orthoptics department yet again – I’m praying they can at last work out my prescription. I appreciate them taking so much time over it, but I long for the diagnosis to eventually be made. (They find my eyes fascinating. ‘Did you see the way her pupils dilated?!’ They whisper to each other.) The first woman I saw about it shook her head and said ‘Oh, you poor thing,’ with such sympathy and understanding I almost burst into tears on the spot. Funny, isn’t it, how a kind word or action can break you in half.
I’m seeing the neurologist in May. Hopefully there will be some clarity. I know some of it is muscle problems with my neck. I suspect the sinus problems I frequently have contribute to it. I know that at least some of the problem with my headaches is to do with the way my eyes work together. They ache continually. All the time. With that and the wider headache (triggered by whatever) and the tiredness caused by medication for the headaches, I feel fenced in, limited, gasping for air.
I’m a writer. I write. Headaches, eye pain and mind-fogging tiredness are…not good.
And they make boring blogposts, too!
Glasses image from stock xchng