I realise I've not posted in a while. I haven't had the spoons for writing anything that I would consider worthy of posting. However, it's 2.30am and my head is spinning with thoughts surrounding my future, triggered by recent issues regarding social care meaning that I am still without daily assistance.
Most of the people I know on chronic illness forums seem to base their own future hope and aspirations around being well. Amongst the majority of posters there is a fear of a future where they remain as ill or impaired as they are currently, or become worse. I beg to differ.
It's not that I do not want to be well because I do. I wish I could lose the odd physical sensations that interrupt my trail of thought and I definitely wish my cognition wasn't so restricted by fatigue and general messed up neurology. But, I can envisage a decent future for myself where I am still ill and impaired. I think this is important. I'm not going to waste the years and months away fixating on a falsely positive sense of "hope" to the detriment of any level of acceptance or adjustment.
So what are my fears for the future?
I'm scared that rather than my body and mind letting me down, it will be social services, the NHS and the government that does so.
I'm more scared of these services causing my impairments to progress than I am of the progression itself; because whilst I can accept nature taking its course, injustice is always hard to accept.
I'm worried that I will always be hyperaware of my impairments because "if I had adequate support I could have done that"
I'm worried that I will never be a performing musician or work again, not because my health prohibits it but because I have been denied the support necessary to complete daily tasks.
I'm worried about what all the above is/will do my self image and that by the time I'm awarded adequate support, my mental health problems will prevent me from doing the things I want to any way.
Hope is useful to keep yourself positive, but not to the detriment of fighting for your future.
