#If I’m lucky I might be able to use the UC payment to get most of this without cutting into savings

[yaminerua]

Genuinely looking into the idea of trying to throw together a budget Rimmer cosplay for September now asdfhhjjdssfhk

[gaiatheorist]

Flux.

“You wait ages for a bus, and then three come along at once.”, I actually used that line in a message to my Work Coach. I don’t ‘have to’ update her on progress, her systems are configured so that a check-in every three months is all that’s required to tick the box on whether I’m meeting my commitments. Part humanity on her side, and part knowing that there’s no real point in summoning me to the Job Centre every few weeks, I’m doing everything I’m supposed to and then some. Of course I am, I wrote my own ‘Claimant Commitment’ targets, I have a better idea than the non-medically trained DWP staff what my own ‘limited capacity for work’ means in practice. 

In this case, it’s not buses that I’ve been waiting for, it’s intervention for the rapidly increasing pile of medical issues I’ve had since the brain haemorrhage, and ‘ages’ is a little over four years. Hooray, it’s finally being investigated, and interventions are forthcoming! Boo, everything’s happening all at once, which is not only a physical and cognitive strain on me, it has also flung me into one of my limbo/flux episodes. It’s almost as if the various ‘bits’ of the NHS dealing with me haven’t spoken to each other. (The POOR Trainee Clinical Psychologist assigned to me last week was a little taken aback when he reached the end of his Safeguarding script, about contacting other agencies if it was perceived that I presented a risk of harm to self, or others. “I understand your duty of care, and you also have my fully informed consent to discuss my case with other parties dealing with me, in the interest of collaborative working, and avoidance of duplication or omission.” *Blank* “There’s a letter floating around here somewhere from Neuro-Psychology, detailing my tested deficits,  if you can’t find it, you can copy mine.” “Oh, that would certainly be very useful!” Of course it would, that’s why I pointed it out.) I’m smirking at myself, I had all the big words, and correct technical terminology at the start of the appointment, 50 minutes in, it became very apparent that I was cognitively flagging. I flux from fantastic to fucked quite quickly.

The Cognitive Analytic Therapy starts this week. I’m lucky to have been allocated any therapy at all, it’s only 16 months since my GP set that ball rolling for me. (Side-rant about NHS procedures being so ‘stepped’, and having to prove that the lower-level interventions have been tried before moving on to the next level. Other people have commented on that ‘gap’, where you’re too ill for ‘a nice walk and a bit of a chat’ to have any impact, but not at crisis-point, until you are.) My flux-frustration here is that the Social Prescribing for Mental Health intervention also starts this week, AND the carousel of medication that Neurology want to start me on, for all the background-factors that come of having chunks of metal in your brain will also start soon. That’s going to be a delicate balance, and I’m not particularly delicate, or balanced in myself, I’m incredibly fragile again, but haven’t crossed my own warning-line into brittle. Yet. 

I’m ‘doing what I do’, and accepting that, while the timings are unfortunate, I can’t control them, I need to work with and through the interventions as they are offered, because ‘failure to seek or follow medical advice’ will see me booted out of the systems as ‘did not attend/engage.’ It will ‘get worse before it gets better’, I’m actually less concerned about doing myself a physical mischief during the discounted gym-sessions with Social Prescribing than I am with the potential rabbit-holes that *could* follow the CAT sessions. (Potential, ‘could’, not ‘will’, I know the mental issues are going to be more difficult than the physical ones to address, but I also know that I’m not going to make any progress until they are addressed.)

‘On paper’, I have a little short of six months to balance out the contents of this unholy grail. My disability ‘award’ expires next March, the brain injuries are permanent, and the Mental Health issues long-standing, but ‘on paper’, I was allocated a 3-year award, and I need to re-apply in December of this year for it to be continued. (It’s an inbuilt flaw in the PIP system, that it took 17 months to be accepted for that award, a chunk of the payment was backdated, but, by that point, I’d accrued substantial utility debt, which took over half of the lump sum. My insistence on fixing or replacing household goods, to accommodate for the difficulties that come with my disabilities accounted for most of the rest. That’s what it’s for.) There is no doubt whatsoever in my mind that the response to my renewal-request will be ‘computer says no.’, and I’ll end up back in the reconsideration-tribunal quagmire again. Come on, ‘on paper’, I’ve had 3 years to ‘get better’, obviously I’m just not trying hard enough. If the PIP award is not-renewed, my ‘limited capacity for work’ status with DWP will also be removed. How backwards is that? I’m looking at a future-potential of being deemed fully capable of any/all work at the same time as appealing through the labyrinthine PIP-process, to evidence that I still have bits of metal sealing up aneurysms in my brain, and a third, inoperable aneurysm, just sitting there, lurking. 

That’s far-future-flux. Immediate-future-flux is that my son finishes university at the end of this week, and I don’t know what he’s planning to do next. Practically and emotionally, that’s going to be an issue. He’s sprawly-messy, our sleep-cycles are out-of-sync, and we end up walking on eggshells around each other, it’s do-able, but it’s not altogether healthy. Having him home limits me in many ways, Mother-of-the-year I’m not. What I need to do is give him a little down-time, and then have a discussion with him about what he intends to do next. He probably won’t know, and I’m genuinely dreading the thought of him possibly returning here full-time, long-term, even the uni summer breaks were just about manageable, because, for three years, I’ve known that the three months had an end-point, when I’d be able to dump his clutter back in his room. I don’t know what impact having him back home will have on my Universal Credit unemployment benefit, but I do know that, right now, I’m in no way ‘fit for work’. He’s 21, he won’t qualify as a ‘dependent child’, even though I’ll be feeding and housing him for however-long. There’s a possibility that I don’t want to consider, of starting processes to register him as my ‘carer’, to prevent him having to enter the benefit-system as unemployed. I don’t want that, for him, or for me. 

So much flux. I’ve already notified my Work Coach that I’m struggling, but complying with my Commitments. I’ve also notified her that the boy returns next week, that’s a dick-move, I’ve given her the information on future-change-of-circumstances, and I’m awaiting instruction on what to do about it, while I’m juggling all these other interventions. Best-outcome would be that I don’t have to do anything about it, but that’s highly unlikely. Worst-outcome would be my son being classed as an ‘other adult’, and my Universal Credit allowance reduced accordingly. The UC and PIP just barely cover my outgoings, and my buffer-zone of savings, originally allocated against the gap between coming off UC and my first future-salary will now need to be allocated to the gap for the reconsideration-tribunal when my PIP award ends. 

It’s a long way from perfect, but life can’t be all roses, I’m functional for part of each day, and the interventions might stretch my functional window a little more. 12 weeks of discounted gym membership to deal with the physical and ‘social’ difficulties, and 16 weeks of CAT, to unpick the mental side of things. Then there’s the medication, the first option of the five the Neurologist is considering is an incremental dosage-increase, taking up to 14 weeks, with a further 12 weeks to verify stability. If that doesn’t work, we move onto the next option. That’ll probably bring me to October. Did I mention I’m going to see Tim Minchin in October?