I suppose I'm just venting, I'm not having a particularly positive experience of Universal Credit and PIP right now, so there's a lot of reflective thought. (I'm not at crisis point, and I am booked in to see my GP next week, my 'emotional well-being' needs a serious tweak.)
There's 300+ pages of DWP/ATOS 'evidence' on why they've declined to award my PIP claim sitting on a cupboard behind me. Most of it is bad photocopies of the original medical evidence I sent them. I dread to think what the cost for photocopying alone must come to, before we even get onto the contentious 'Oops, we hoped nobody would notice.' issue around the reviews where they've declined to award cases under the 'overwhelming psychological distress' descriptor in the 'moving around' section.
Setting aside the fact that the DWP/ATOS end of the paperwork looks like it was typed by a monkey, and then put back and forth through Google Translate several times, I'm hung up on phrases that run through my official medical notes. 'Extensive, exhausting compensating behaviours' is a clear favourite, 'should improve over time' less-so. In the early days, and, I accept that I'm still in them, my SAH was only February 2015, there was a lot of "That should improve over time.", coupled with "You were lucky to survive, some people don't." I suspect that a lot of us had similar responses.
My issue is that none of my vast and debilitating range of side-issues really did 'improve over time', and the 'you were lucky' responses made me feel guilty about complaining. I stopped complaining, and tried to 'get on with it', nobody likes a moaner, do they. (Slight complicating issue in that the ex's Mum died from a brain haemorrhage when he was 11, an extra layer of survivor-guilt, there, because I'd come through what killed his sainted mother 'apparently' unscathed. It's complicated. I'm complicated.) I know that 'covering things up, so I didn't upset the ex or our son' was a poor choice of coping mechanism, BUT, every time I tried the 'ask for help' route, medically, or at work, there wasn't any help available, I was stuck in the land of wait-it-out.
I acknowledge that I made some poor choices, and that some of my behaviours weren't ideal. I am aware that the situation I'm in now is, in part, down to how much I internalised my difficulties, to 'prove I could cope', and 'not upset other people.' (Like not upsetting the girls in the office who were CONSTANTLY shrieking about Slimming World with the fact that I'd lost over 3st, and you could see my bones through my skin...)
The situation that I'm in now is 'awaiting PIP Tribunal', the start-date for this application was 14/3/17, the process is making me more-ill. I do understand that the previous disability benefit systems might have been open to exploitation, and that more rigour was needed, to reduce the number of dubious claims, but the PIP system is atrocious. It's very much 'guilty until proven innocent', with all the "You said you had difficulties with... I have decided that you can..." statements in the decision-maker's reports. I'm frustrated, I'm more than that, I'm angry, I'm furious, because at no point did I say I "could not" complete the descriptor-activities, I evidenced that I had difficulties completing most of them repeatedly, reliably, and within a reasonable time.
I 'can' microwave a bowl of soup, but I have to stay in the kitchen while I do it, or I'm prone to wandering off, and having a few days of "What's that SMELL?", before I find Cousin It in the microwave.
I 'can' wash my upper and lower body, but I very frequently fog-out on part of the process, and get out of the bath with one armpit shaved, or the conditioner still in my hair, and have to get back in.
I 'can' get myself on and off the toilet, by holding onto the bath-side and radiator, who doesn't love having to keep repeating to strangers how they mount and dismount the lavatory...?
What the PIP-system, the Universal Credit system, and every well-meaning acquaintance who says "Can't you just...?" (In-joke between my son and I "Have you tried just NOT having brain injuries, Mum?") don't take into account is the extra energy I think we ALL expend compensating for our various deficits, and the emotional energy of internalising our difficulties. I usually don't post on here when I know I'm in one of my low-phases, I don't want to appear to be negative, or to 'scare off' new members. (New members, I'm just having a rant, I am having a bad day, not all of the days are this bad, and, even when they are, they pass.)
No idea where I'm going with this now, I'm just conscious that most of us make our own adaptations to remain as functional as we can, and that some of us, whether consciously, or subconsciously, do try to manage everything ourselves. Vent over, I think, I'll wait to see if the post brings my PIP Tribunal date, or whether the 'review of existing claims' knocks it back even further.