This is Part 2 of the story I began last night. Writing it down like this, it’s made me realise just how unbelievable it all sounds. Because it gets worse. Really.
On 3rd July I received a letter from Avanta, the people who conduct the work-focused interviews, telling me they’d made me an appointment for 28th July. Yeah, they really held off, didn’t they? I phoned them and politely enquired if this could be a mistake because I’d been told by the ESA Advisor at my local JobCentre that a deferall was being requested while I waited for the Newcastle Benefits Centre to get back to me. Unsurprisingly they’d heard of no such thing and insisted again that the interviews couldn’t be deferred. I said again that it was impossible for me to get to these interviews, that was why I was put in the Support Group in the first place, and what did they suggest I do? Thankfully the operator was very nice and suggested I give it until a day or two before the 28th, and if the DWP still hadn’t got back to me, to phone Avanta back and see what we could organise then.
So I waited. To be honest I fully expected to hear back from Newcastle before the 28th came around; I’d read repeatedly on the internet that although they say to wait 8-9 weeks for a reply, most come back to you within 4-5 weeks. But 6 weeks and counting, and still nothing. I started to worry.
Now, I’ve already discussed that I have enough physical limitations to prevent me from attending these things or taking on regular work, but this month it’s been beyond a joke. I developed something truly horrible that I’ve never had before, and it almost landed me in hospital.
On Sunday 13th July I made the mistake of going out in the sun for a few minutes. I shouldn’t have done, I knew that; I did it to please a friend that still visits me even though I’m a basket-case (okay, he’s my ex-fiancé, but let’s not make things too complicated!). On Sunday night I developed hives all over my body. I didn’t panic because I’d had them mildly once before, due to an overdose of B-12, and they cleared up pretty quickly that time with Sudocrem. I thought the same would be true this time. But the Sudocrem did nothing and although they disappeared briefly, they were back by Wednesday morning and absolutely everywhere. I think only my face, the soles of my feet, and one ear escaped.
For those that haven’t had serious hives, they look like massive red blotches all over your body, often white around the edges where the circulation is cut off, and they feel like severe sunburn and itch like crazy. They’re caused by histamine rising to the surface unevenly and creating “bubbles” like blisters under the skin. It seemed that only a few minutes of sun had triggered them. I’ve always been intolerant of sunlight so I wasn’t surprised – but formerly it only gave me headaches or a butterfly rash on my cheeks. Looks like I really pissed off Apollo somewhere along the line! I hadn’t changed anything else in my day-to-day routines, so it had to be the sun.
I put up with the pain and itching for three days, hoping it would fade on it’s own, because – well, that’s what I do. I always hurt somewhere, you learn to block it out to some degree. But on Friday night I woke up in the early hours and went into the bathroom only to find in the mirror that the hives had spread to my face. I also looked different and couldn’t figure out why – until it dawned on me that my eyelids and lips had swollen. Seriously, I looked Chinese all of a sudden. I tried to go back to sleep, dosed up on painkillers, but woke two hours later (around 4am, I think it was) to find that my glands had now swollen and my throat was closing up. It was sore and I couldn’t swallow or breathe properly. I had to go to my mum and see what she thought I should do, because this was getting worrying.
She said that as soon as it was 8 o’ clock she would call out the out-of-hours GP. It was Saturday so no chance of going to the regular one or getting them to come out. But between 4 and 8 I got steadily more swollen; I went into convulsions and began hyperventilating and scratching so obsessively that I was making myself bleed. I couldn’t stop. When Mum called 111 and told them what had happened they didn’t mess about with an out-of-hours GP and a prescription for anti-histamines, which was all we’d phoned for – no, they sent out paramedics. Three minutes later and there were two nice strangers in my front room and an ambulance waiting on the doorstep.
Andy and Emily were absolutely fantastic – very soothing and efficient, checking everything out and not causing any fuss. My heartrate was up (big surprise) and so was my blood pressure, but in the couple of hours we’d waited to phone them my throat had eased up a little. I could breathe again, just about. But the swelling was still bad and I couldn’t open my eyes all the way or talk very well.
They wanted to take me to A&E, ideally. Andy in particular recommended it but it wasn’t mandatory and I honestly thought that with my other conditions it might be difficult and do more harm than good. Because my blood pressure and heart rate went down a bit over the course of their visit they agred I could stay at home and they would contact the emergency GP for me.
I thought it was over, after that. I got my anti-histamines three hours later and I expected the hives and swelling to clear up. The swelling did. The hives didn’t.
Come Wednesday 23rd I was swelling up again. The Cetirizine had done nothing and I realised I would have to go down to our surgery (more sun exposure, brilliant!) and get something else. Thursday morning, the 24th, I saw a GP that, to be honest, I’ve had screaming rows with before now, but I couldn’t wait the extra five days to see my regular one, so I had to put up with it. Shockingly he was very helpful this time, and gave me a different anti-histamine and steroids. They worked beautifully on Thursday but on Friday I had new hives all over me that were the worst to date. I’ve scratched so much that I don’t even notice anymore where I’m bleeding. It cleared up Saturday, but then on Sunday (28th) I lost all circulation below the lower knee. My legs and feet were blue and as soon as I set my feet on the floor I actually screamed with the pain – they felt like meat slabs with burns on top and to the touch they were like a corpse with rigor mortis. I was very scared at that point – you can lose your legs getting shit like that.
But that cleared up, too, as these things do. The hives came back today and I’m more than half-way through my prescription, so I really don’t know what I’m going to do. The scabbing all over me makes me look like I’ve been dragged backwards through a bramble-patch! And I still had that pesky work-focus interview scheduled during all of this, didn’t I? You might have forgotten that, reading this – but I didn’t. On Friday I had to phone Avanta and explain that I still hadn’t heard back from the Newcastle Benefits Centre. Now, I’ve read repeatedly that in certain circumstances you can do these interviews over the phone, and I offered to do that, despite the fact I’m still not-quite recovering from the events of the past fortnight and shouldn’t even be doing the interviews – but the operator I spoke to had never heard of that and said no, I couldn’t. Well, I know my rights, thank God. I know that you are entitled to miss TWO interviews a year on the grounds that you’re too sick to attend, provided it’s not two consecutive interviews. I told him to mark me down as too ill to attend and if the DWP still hadn’t replied to me by the time they scheduled another interview I’d worry about it then. The new interview is on August 11th – about three weeks – and after that, I’m screwed.
I wrote to the Newcastle Benefits Centre with this new change of circumstances, of course. Partly because not being able to go out in sunlight definitely qualifies me for the Support Group, but partly to jog their memory of my case. It’s been nearly 7 weeks and nothing, you know. I’m terrified they’ve lost it and I’ll have to start all over again, waiting for up to 9 weeks for them to move their arse, whilst all the time I have Avanta on my heels. I know I can’t hold them off forever and if, when the next interview date comes up, I still haven’t had this situation corrected then they’ll cut some of my money – a quaint little thing they do called “sanctioning”, but which is really legalised blackmail – for failing to attend the interview. I honestly don’t know what I’m going to do if it comes to that.
This has been such a whiny post, hasn’t it? I don’t feel sorry for myself, though – that’s the thing. Angry at the government and their performing monkeys, yes; but that’s what they call righteous indignation. I know the same thing is happening to thousands of people like me, and not all of them have the means to fight it that I do. Not all of them have the support that I do. It’s been called a silent holocaust because of the number of suicides it’s caused, and I have to say, I agree.
But there has been a small miracle in all this, at least for me. As my health has plummeted this year it’s forced me to think of ways in which I might train myself to write directly into my iPad, which I can do lying down. Before now I did everything longhand, draft after draft, copying out vast chunks in order to move things around and alter bits as I went. It was the way my process worked and I couldn’t get my brain to compose in any other way.
But now, slowly, I’ve begun to learn. I can now type great swathes directly into my iPad, lying down and tapping with one finger if need be, and it’s vastly sped up my production. Just this past ten days I’ve written almost an entire chapter, something I haven’t done since my fanfic days in the early 2000’s. It means I can finally see a way to not only finish Out of Egypt but also the rest of the series before I’m old and grey! So I guess this long, arduous post and its predessor have really been, not only an apology for taking so long, but a light at the end of the tunnel, too. It won’t be long, now.
If only I could say the same about the DWP.