What do I need, I think in fairness this isn’t too complicated at all. All the basic stuff needed by us all, enough money to not have to worry too much each month, sufficient clothes to wear, food on the table etc etc.
Then the other stuff, I must have books around me, music to listen to, people to talk to (mainly on line these days). When I can, I need to get out of the flat, to stretch my legs, to walk, to look in shops, smile at people, and feel like I am still part of the human race. Plus it is the only form of exercise I can do.
I also need a little help now and then, nothing major, but just sometimes, if those around me would simply think ahead a little. I do this when I am with my mum, I try to observe what she is doing, and often take over doing something I know she will have difficult doing, before she realises that I have done so. No big fanfare LET ME HELP YOU, just quietly assisting her. I often need some help, and at times, if I am honest I actually really grudge having to ask for it. I wander why no one has thought to themselves that what I am about to do will be difficult for me and so just take over quietly. In fairness though, I think I am more attuned to this simply because of my own situation, and that is why I am able to do it with my mum. So a little subtle help, not stuffed down my throat, or ‘I won’t bother as you will want to do it yourself,’ would be much appreciated.
A lot of that comes from the ‘not looking sick’ situation. If I looked pale and wan and in a chair or in plaster or a bandage wrapped round my head, people would make more of an effort. I know when I am in the supermarket, holding onto the trolley, I can gaze at something on the top shelf, and I get no offers of help. If I walk from the trolley using my stick I find it easier to ask for help and people rarely look upset at being asked.
Probably also is the fact that having a chronic illness, people get used to thinking of you in one way and they don’t change that mind-set. They begin to accept that you rarely go out, so never ask, etc. You make your bed and find yourself stranded there!
I need to feel worthwhile and not just a useless, nearly housebound, disabled boring person, because I don’t go out, doesn’t mean I might not like to, with a little assistance. But looking ok, and the illness going on and on and on and on, being taken for granted sets in, invisibility sets in, and assumptions take root.
I need more of a life than I have. I need to feel alive, I know I am sliding into becoming the old woman with the cats and the books and the TV, and that would be all too easy. I realise that mum is getting nearer to the stage when she will need more help, and I dread it, as does she. What use will I be then? But I will NEED to find strength and energy from somewhere as there is only us, no big family to lean on, or big circle of friends anymore.
I need to try and get as well as I can be , lose some weight to help with this endeavour, as mum would love to go to the USA one more time. Go to her favourite place, Scottsdale, and as I am at the moment I would be a real hindrance. You might think this is more of a ‘wish’ than a ‘need’, but we all ‘need’ something to strive for. Or we would just stay in bed!!
There is plenty that I want – but that is another story!!