My illness/disability has followed a progressive path. Sometimes that's really hard for me personally to notice. Sometimes things do just stop you in your tracks and remind you though.
Guess who's currently filling in a DLA application? Ok, ok I've been eligible for DLA for over a year now (actually I could have claimed low rate mobility for about 10 years). I know I've lost out on thousands of pounds, but, in a (as a friend put it) "tragic to the point of hilarious" turn of events, I was too ill to deal with DWP's mistakes with my claim a year ago. Yes, that's right, my care needs were too high to prove that I had care needs. What a load of old...
There's just so many things on that form that really make it hit home how restricted I am these days..and how much worse things have gotten. Of course, I'm now actually getting care too. I knew I needed the help, but nothing brings you back to reality quite like a middle aged woman wearing a plastic apron and gloves stood in your bathroom.
This is my reality now. I mean, what the hell? I wonder why acceptance can't just come in small bite sized chunks, rather than these massive realisations knocking me for six.
Don't even get me started on my mobility. I have so many issues with this topic. I've been told by doctors repeatedly that I have no problem with my walking. Recently a neurologist finally acknowledged there was a problem but decided it was neuropsychiatric (code word: - all-in-your-head). Despite the fact that there were positive signs of spasticity in his examination he's decided there's no sign of organic problems. I'm dreading these muscle and nerve tests coming back negative. It's like a never ending competition between me and the medical profession for who gets to say "I told you so".
The thing is, the neuro has a point...well sort of. I mean, quite obviously I don't think this is psychiatric but I can see how he might be perplexed by my choice of mobility aids after watching me walk. See, my walking is impaired, there's no doubt about that. I look like a cripple when I'm out of my wheelchair too. But...it's not *that* impaired*. What I mean is...if you watched me walk a few steps you'd probably think I could do with a walking frame and maybe a manual wheelchair for long distances. Hell, maybe that would improve with some physio. But, what the doctors seem to completely ignore is that the 5m to their bed is making me ill and that all the little 2 steps here, 1 metre there adds up and takes all of my spoons for the day, and the next, and the next whilst causing my mobility to deteriorate in the process. If I want a life, I have to use an electric wheelchair, effectively nipping the symptoms in the bud before my mobility deteriorates so visibly. Of course, this is very hard to capture in a 15 minute appointment (particularly when the doctor in question is not bloody listening). So, rather than them looking at my walking impairment and seeing...an impairment, they see something incongruent with my own *choice* of mobility aid and jump to the conclusion that I must be perpetuating things.
I mean, I know I'm right. I know if I push myself too hard I get ill. The problem is, a few of my care/mobility needs are imposed by these boundaries of being unable to push myself...and I guess I find it quite hard to trust myself when everyone around me is either questioning my illness or trying to insight me with hope for the future (as if there's something I can do that will improve this). So, I can either push the boundaries knowing they're there for a perfectly logical reason, something I've realised is pretty much self harm. Or, I can try and accept that whilst some things in life are a "choice", really if we're to live, there is no choice to make at all.
I really wish other people would realise that chronic illness is not really something you can fight. That sometimes the best we can do to "fight" is to rest and to listen to our bodies. You really can't push through this. I know I need to cut myself some slack and get some self trust but it's really hard when carers, social services and doctors don't get it and just perceive me as giving up.
*and on this occasion having been well rested for a few weeks in hospital was at its best with any visible spasticity being overshadowed by problems with "initiation of movement" - something which is apparently indicative of neuropsychiatric issues (despite the fact it's really common in things like parkinsons!)
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