http://nickyclark.blogspot.co.uk/2016/02/shropshire-council-dwp-emily-and-me.html
That’s what’s REALLY annoying me now, more than the noise of the washing machine, and that weird, dusty smell that I can’t quite place, but suspect to be the husband.
I’ve instigated a claim for PIP, with the combined forces of DWP and ATOS, DWP told me I’d have four weeks to fill in the form, then didn’t send it for two of those four, ATOS put incorrect travel information on the letter- must compose angry email, I’m REALLY good at those, and it will corroborate the fact that the brain damage makes me incredibly irritable. Yeah, more than I was before.
I have brain damage, I know I’m supposed to say ‘An Acquired Brain Injury’, because that’s the PC term, but ‘brain damage’ has more impact. The brain damage impacts on every single aspect of my life, last week it took me over an hour to change the bedding, because I couldn’t figure out how to find the corners of the pillow-cases, or line up the seams on the duvet. Every single work-day I get out of the bath with either the soap still on my face, the conditioner still in my hair, or one armpit shaved, and then I have to get back into the bath to sort it, leading to bits of carpet-fluff in my bathwater, and an increased level of UTTER FUCKING RAGE when one of the straps on my bra becomes detached. I know, I DO sit in the bath chanting ‘soap, conditioner, armpits’, and then I’ll remember all of that, but forget to put on deodorant, or moisturiser, or something, and end up spending the whole day wondering why people are looking at me like I’m a Leper, smuggling dead badgers.
The main feature of my brain damage, apart from the UFR (see above), and the crippling irrational anxiety about there being a mouse in my bag, or what-if-a-leaf-blows-in-my-eye, oh, and the exhaustion, because my brain has to double-process everything, because the first impulse is ALWAYS inappropriate, is the fatigue. Fatigue and exhaustion are different. Every day, at the end of the day, I’m exhausted, that’s what happens when you have a job. The fatigue is different, it’s a complete shut-down scenario, and it’s actually dangerous. Day-to-day, my higher-level functioning can generally be sustained during my working hours, the lower-level, basic stuff has GONE, it quite often takes me more than one attempt to get my shoes on the right feet, and I’ve lost count of the number of times I’ve called myself a wanker for wandering into the bedroom with a teaspoon in my hand. I can do hard, and complex, and intense most of the time, I just can’t do ‘simple’.
The fatigue is a bitch, it rolls in, creepy-slow, and, being the pedantic control-freak that I am, I have a million processes and procedures in place to attempt to minimise my brain-shut-down impacting on others. Doesn’t help them much, when I’m sitting on the floor of my office, trying not to cry, because I know I need to go home, but not wanting to be at home, on my own, in case one of the aneurysms ruptures. I forgot to mention that, for anyone new, in addition to the aneurysm that ruptured a year ago, there are two more, that could blow at any time, only one of them’s operable, but, no, I don’t suppose that’s enough certainty for the ‘terminal illness’ or ‘special circumstances’ clause.
So, I managed to phone for the forms, and fill in the forms, and submit the forms, in accordance with their timescales, and their ‘warning’ letter, that arrived about two days after the forms themselves. I managed to copy enough medical evidence for them not to just decline the claim outright. I managed to get myself to the appointment on time. Not without MASSIVE anxiety, though.
The fact that I got there, on my own, with my shoes on the right feet, and didn’t eat the post-it notes, or poo on the floor, will mean that they probably decline the claim initially. Their timescale for deciding the outcome of my claim is 4-8 weeks, during which I have more brain surgery scheduled, and another appointment with a psychologist, to teach me more tricks to not-hit-people. I’m fortunate, my higher-level processing is terrifying, during my functional windows, so I know that I’ll have to appeal the decision, to state that I AM disabled, and will continue to be, to a greater or lesser extent, until the small aneurysm on my brain stem ruptures, and kills me.
Not everyone is as fortunate as me, and not everyone thinks like me. Lots of people would have just not phoned for the forms, or not filled them in, because the questions about your ability to clean yourself after using the toilet are horrible. Lots of people would have relied on the directions on the ATOS letter, and waited for an imaginary bus, or followed the map that wasn’t quite accurate, and missed the appointment time. Lots of people, in this 4-8 week window, wouldn’t have supportive, if frustrated employers, who understand that sometimes, a key member of some very complex teams just doesn’t work. (No, I can’t work from home, my job doesn’t work like that.) Lots of people have died, they’ve taken their own lives, because this system is ludicrous. This system expects the most vulnerable to perform some pretty difficult admin, and then, IF the criteria are satisfied, to jump through more hoops, being assessed, and watched, and double-questioned, after having made a journey that, for most, like me, will have been stressful. This 4-8 weeks is what will strain most people, and, from what I’ve read, there’s the chance they’ll lose my paperwork at least once, and miss their own deadlines, where I’d be dropped out of the system if I missed theirs.
The system, meant to support people with difficulties, is killing them. The fact that my higher-level processing is mostly intact will keep me going, that, and being a tenacious cow. I’ll appeal when I’m declined, because, as much as I know I just-about-can function, the Personal Independence Payment would make that functioning much easier, much safer, and much less likely to make a mistake in Child Protection, or education, not that the government that’s testing me would know ANYTHING about mistakes like those, of course.
