In learning to take care of myself I've discovered that just because a task is not completely impossible for me to complete, that doesn't mean that it's something I 'can' do. This is something I'm still struggling with. I've tried analysing tasks to see if they fit in to boxes of "can't": things I literally cannot do and; "bad idea": things that would involve a lot of payback.
Completely useless!
Tasks placed in the "can't" folder just get moved to the "do it in a different way" folder and equally, things in the "bad idea" folder get moved straight over to the "definitely worth it" folder. The result is that I get no rest and become more unwell.
To illustrate this:
I experience transient paralysis in my legs. Walking and standing are a "can't". The sensible thing to do here would be to rest. Instead I "do differently" and start transferring using my arms. The result - I soon start experiencing the paralysis in my arms too or, as has happened before, I pull a muscle and can't use my arms anymore anyway.
Or,
I really want to do something outside of the house but my heart is going crazy. This is a bad "idea", I should be resting. I start to bargain with myself: "if I go outside then this will increase my mental wellbeing and that will be "worth it", regardless of the set back". The result - My health worsens and I become so foggy that my mental health turns to jelly anyway.
I know that most of what fits in "bad idea" should really be a "can't", that "can't doesn't always have to mean literally impossible. If you'd decided not to meet up with a friend for coffee you'd probably say "Sorry I can't" regardless of the reason behind it. So why, when it's something relating to my own health can I not bring myself to use that word?
I guess I know that actually this would result in me doing a lot less than I currently am and since I don't know my prognosis, it might not even stop the progression anyway. I worry I would regret not having done as much as I possibly could before my illness progressed too far.
This block has presented me with a whole bunch of barriers in accessing social care. Social services have now accepted I have a need and have placed me on their (now compulsory) 'reablement' programme. This means that every day whatever I need help with is recorded in a folder along with the length of time it takes and a numerical rating of the amount of assistance I need. I also know that there has been talk about me in the office and that there is a general assumption from social services that I will not need support after this point. This period of time has become about proving to social services that I do need support.
So, why then am I only accepting the minimum amount of assistance?
I'm scared. I'm getting ridiculously anxious at the thought of accepting help with personal care. I'm happy for someone to help with shoes, socks, trousers and putting a coat on but due to various body issues I don't feel able to ask for help with anything involving any degree of nakedness. The result is that I am struggling to get dressed in the shower room quicker than I did before care, or I'm just not showering, telling carers I'm feeling "too ill" to do so. A large part of this is because of the anxiety this whole process has caused but also because whilst I can keep putting personal care in to the "bad idea" folder I don't have to ask for help and best still don't have to have the anxiety provoking conversation about how my body differs to that of other men.
If I could employ someone myself (as I initially asked to do) then I would try. I really would. It would be like our little secret that I was asking for more help than I want to need. Instead I get carers with poor communication skills, a book recording my "failures" and an office that talks about how I'm just lazy and refuses to deal with issues with carers.
Somehow, I can't see my anxieties reducing any time soon.
