Forbearance
Not the most helpful text in the world, considering I know I asked them this, and it doesn’t say when this six week period starts from. When they wrote to me to tell me, hey, you’re not expecting this but we’ve stopped paying you PIP? When I wrote to them to tell them how very wrong their assessment was? When they found my letter in amongst the teetering pile of other ‘Mandatory Reconsideration’ letters? When they sent me that text?
“He’d previously been appalled at how little money we received each month. Which, you know, is nice, but not actually very useful.”
When your PIP stops, your Carer’s Allowance also stops, and Carer’s Allowance is one of the benefits that is deducted from the amount you receive in your Universal Credit payments. That amount has continued to be deducted from our Universal Credit since then, even though we’re no longer receiving Carer’s Allowance, and I’ve explained to my designated Universal Credit Work Coach several times now that we’re no longer receiving it, and that this is leaving us £280 a month worse off – on top of losing our PIP payments. But the only thing I can report through the online Universal Credit reporting system is a change to our circumstances, and our circumstances remain the same.
Talking to my Work Coach during my scheduled phone appointment this month, he was surprised to find unanswered messages from me in his queue of Journal messages – I don’t know why, since they only go to him. “Doesn’t Carer’s Allowance continue being paid for 8 weeks after PIP stops, though?” he asked me. “That’s what happens, so there’s a safety net, and people aren’t just cut off without warning.”
Well, obviously not. As I’d detailed in all the other messages I’d sent to him since January – which he’d read – asking him how to report this, which he was supposed to be looking into. Work Coaches are very considerate, and often very kind, but also often very overworked and sometimes simply useless, as they’re often as unaware of the changes to other benefits since full Universal Credit was rolled out as the rest of us. He’d previously been appalled at how little money we received each month. Which, you know, is nice, but not actually very useful. “You’ll need to sort that out, then,” he eventually said. “Try calling the phone line.”
I was talking to him to find out if he could help me sort this out without having to do that, since that was the point of having a Work Coach and the online Journal system. I’m on limited capacity for work because of my mental health, and I’m not necessarily up to wrestling with the intricacies of the damn phone line, right now, but what the hell…
“But it’s up to me to try and get the money we’re owed back, or presumably they’ll just keep it, it seems.”
If you go to the ‘contact us’ section of Universal Credit, it encourages you to ‘Use Your Journal!’ as if I wouldn’t have already tried and failed, and as if I didn’t dread being in that soul-sucking, endless queue on the phone, to people who really aren’t interested, and whose job has had whatever joy it might have once had destroyed by sanctions and anguish and complaints. When you do have to call the phone line, you are tortured by being constantly reminded that you could be using the website. Have you tried using your Journal? Could you do this via your Journal? Why not try going to double you, double you, double you, dot…
And why, WHY, would you choose a short loop of the worst bit of Vivaldi as your hold music? Where the violins almost but never quite crescendo, and hit those stabby ‘Psycho’ soundtrack high notes again and again, making you more and more tense, if you weren’t already, all made extra tinny by being played directly into your ear down a phone line. It honestly must be designed to make people hang up in despair before they get through.
And as an aside, the unjustness of the sanctions system is a thing unto itself. If you’re going to give people the bare minimum they need to get by, you cannot justify sanctioning them financially for anything, no matter what. People don’t miss appointments or fail to hit their targets for job applications on purpose, generally, and taking money away from them isn’t going to help them ‘get back into work’, or somehow encourage or inspire them to do better. Not when they are barely surviving anyway. You’re just making people who are struggling struggle even more, and pushing people into giving up. But then that’s the whole point, isn’t it? Jesus wept.
Anyway, I spent another day on hold to various departments of the DWP, who all said I should speak to someone else, until eventually I got to speak to Carer’s Allowance, who had obviously dealt with this before, and were genuinely helpful and patient, when I was really quite tired of the whole thing, and I’m not good on phones at the best of times. But they took our claim off hold and cancelled it, and said they would contact Universal Credit for us to tell them that since we were no longer getting Carer’s Allowance, they should stop deducting it from us – although they couldn’t tell me how long it would take Universal Credit to process this, once they’d been told, of course.
Perish the thought.
So. Even after this, our financial situation remains not that much further on than it was, and if it wasn’t for the grace of so many kind, wonderful people, we’d not have made it to this point at all. But from this month, we shouldn’t have Carer’s Allowance deducted from our UC payment any more, which will mean we will have something closer to a liveable amount coming in, at last. We’ve had over two months where we’ve had people help us out in so many ways; not just buy us food and contribute money, but so many ways that people have been so kind and lovely, and it’s been the first time in as long as I can remember where we didn’t have to stress about what was in the fridge or how much electric we’ve had left – which has been weird – and we are so, so grateful to every single person who has helped. But until we know if we’ll get anything back or when that will happen, right now we are still stuck pushing the fundraiser to get by.
We had been getting £250 a month for both of us to live on, but thankfully that will change from April, so we should get more like £530 a month for the two of us from then onwards. But the money that’s been deducted from us over the last three months? No one seems to know about when we’ll get that back. Try ringing the helpline again, my Work Coach has at last suggested. His message then went on to helpfully explain to me that they pay Carer’s Allowance for eight weeks after your PIP stops being paid, too, so that you have a safety net… Argh.
Still, I did also get a nice message from the lady from the regional office thanking me for (slightly patronisingly) explaining what I had to do to get Carer’s Allowance to contact Universal Credit and get my CA claim closed. So at least now they know what happens for their future reference. But it’s up to me to try and get the money we’re owed back, or presumably they’ll just keep it, it seems. I suspect that’s not what happens if your account receives an overpayment…
But I’ve had another GP appointment, one where I could go, “Remember last time you saw me? Well, that’s all changed again now…”
At my previous appointment, I was two weeks into hypomania, after seeing her a month before that in the depths of a depression where I’d been unable to eat or get out of bed. I like to give her some variety. I’m so grateful to have a considerate and proactive doctor who I know wants the best for me. If you don’t feel your GP is anything like this, try to find one who is. It’s an absolute godsend, and they are out there.
We are still waiting to hear back about the expedited psych appointment requested at my last visit, but the blood tests checking my last lot of blood tests are all ok, and now I just have to have my B12 and iron rechecked and then I think I’ll have had everything checked twice. I’ll have had five lots of blood taken in the last month, all told, which just seems greedy to me. But hypomania did at least leave me able to get caught up with everything I could get caught up with, and I now know I don’t have either cervical or breast cancer, so that’s nice. Get yourselves screened, people. It’s simple, reassuring and ultimately it saves the NHS money if you catch things early, too. I have a re-made physio appointment for my ‘good’ ankle, and even an MRI appointment to try and see why my hands go so tingly and maybe why I fall over, as well. I also have an appointments with the ‘Be Well’ team which sounds… interesting, at least. I’m pretty much agreeing to everything right now, and seeing what sticks. Some of it is bound to work out, after all. And who knows how long we’ll have an NHS, right? Best to make the most of it…
“Words tumbled out of me in a tumult, forcing their way out faster and further than I wanted them to, escaping from between my fingers even as I tried to hold them back.”
It’s all progress, and taking steps forward. But steps forward are really hard right now, because the energy I had before has gone away, and so everything is twice as hard to do.
‘Twice as hard’ is a bit arbitrary, as measures go.
Because I wrote about the euphoria of hypomania as being like a puppy, with all that attractive, impulsive playfulness, you might expect that here I would be going to go with the traditional black dog metaphor.
But there’s nothing dog-like about this. There’s no dog this size. Dogs are companionable, social creatures. This is a bear. It is huge, and heavy and hopeless.
It only knows how to be alone, and that hibernation is how you get through these endless winters. Its weight is overwhelming, and its fur is dense and stuffy and smells of sadness. It shambles and lumbers about the place, when it can bring itself to move, but often it will just come to a complete stop, weaving its head from side to side, not knowing where it’s supposed to be. Sometimes, its weight is comforting, but often when I should be standing up, it makes me want to lie down and just curl up on the floor. Often, I feel like it wants to hug me and keep me safe in its arms, but then sometimes I want it to fold me up as small as I can go, and bury my head into my own stomach like a tick, so I can just disappear into myself forever and never come out. When I sit, I can feel the weight of its jaw resting on top of my skull, slowly pressing me down into myself, its huge limbs on my limbs, that ancient, patient somnolence stealing my need to do anything other than let it hide me deep inside the chambers of its dark heart.
And I miss writing. Not just the energy, but the urgency, the creativity and the need to write that hypomania unlocked in me again. I had got used to not having it, before, and it was so joyful to feel it again, even if it soon got turned up far too high. Words were coming gushing out of me in a flood of hyperbole, faster than I could could really cope with. I think entirely narratively, and the need to write became overwhelming, keeping me awake at night, filling my thoughts in the day, and sparking new ideas with every new thing I encountered. Words tumbled out of me in a tumult, forcing their way out faster and further than I wanted them to, escaping from between my fingers even as I tried to hold them back, impossible to truly keep under control. I ended up letting them flow free, hoping I could corral them again afterwards and have the discrimination to cull the unworthy ones. Yes, it was tiring, but having previously spent what felt like an age struggling to make myself write, it was utterly glorious – and so, losing it again now hurts in an almost visceral way. Words have gone again in a profound way, a way I want to mourn. The torrent paused, then slowed, and was suddenly back to a sluggish trickle, trapped inside my head, needing to be forced out again one word at a time. They can take days to make their way to the outside world, if they ever do, and every word is hard to find, slippery and easily misplaced.
Conversations too can stick on the inside, never quite being born, but just stagnating in my head whilst I stay silent, unable to articulate the simple interactions that should make up the flow of daily life. Even thoughts can dry up and disappear before they reach their end, and because the stream bed has vanished, I can’t even trace them back to their source. I’m left floundering, stranded in the wide open spaces of the silent desert that my mind has become.
But, I am still writing – even if it now takes several days to write one thing, rather than writing several things a day – still writing, one word after another. It helps me stop my thoughts from evaporating if I put them down. Text is my water bowl for these precious droplets, when my mind is too tired to remember their rhythms. That vast creative torrent, that hypomanic flood, reset something, and I’m pushing on in its wake, keeping that trickle flowing, carving a line I can keep following, word by word, drip by drip, no matter how slow and viscous they get.
I keep pooling them together, and coming back, and pooling some more, until there are enough to actually amount to something. From a teaspoon of tears to a pool just large enough that maybe a bear might find a sweet, tasty fish lurking somewhere in its dappled waters. I think it would like a fish.
And so, once more unto the breach, or at least, the phone line. But today has been a bit too much and I’ve had to spend most of it lying on the sofa, hoping this is just syncope instead of labyrinthitis. So I’ll start again on Monday, and see if getting money that is owed us out of Universal Credit is any easier than the ubiquitous blood out of a stone. Fingers crossed, eh? Let’s hope their name isn’t too ironic.
