Physically I have got better. Cognitively I have got worse. This is not unexpected but very annoying. I am struggling to understand even simple things like my bank account and emails.
Because of this, Johan is now my Appointee when it comes to the DWP. This means he’s responsible for contacting them, filling in forms, and my money now goes into his account (which he then sends to mine because the bills come out of it, but when we’re able he’s going to be added to my account so he can manage it as well). We were worried that they’d say I didn’t need an appointee but instead they asked why it had taken so long. It was very hard for me to admit that I needed that help, and as soon as I’m consistently well enough to manage it Johan is going to hand control back to me.
Johan had his PIP renewal. We were a bit scared as it was only a 6 page “has anything changed” form and then we didn’t hear anything for weeks, but it’s been renewed again at the same rates so we don’t need to worry for now. My DLA to PIP transfer is in progress- we’ve now got the form that Johan needs to fill in. He says it’ll be easier than filling in his own, and he even managed the phone call to initiate it okay. We’re going for our usual tactic of sending tons of supporting evidence (mostly my care plans, where it says they’ll find me in bed both calls) and hope it goes smoothly.
As I’ve been doing better physically I have been out of bed a bit. I’ve been in the living room and to Newcastle (I went to the yarn shop! I bought yarn!). I saw Snow Dogs and they are awesome. I also went to the local park for the fireworks display and it was good, though people kept climbing over me while we were in the queue for food (we think they didn’t realise how long the chair was so thought there was a gap when there wasn’t). I wore my penguin onesie and was nice and warm. I’m definitely glad I managed to go, and hope to go next year. We’re planning on putting lights on my chair and skipping the food queues though 🙂
I have a shower chair now so I’ve had two showers! Showers take a lot out of me and the chair isn’t quite supportive or padded enough but person from CFS team has suggested using towels to make it better and we’re going to try that. I am so glad that it’s here now though. The main thing stopping me using it is not being awake and well enough at the same time Johan is available to shower me.
Last week we finally got my new hoist slings with head support. I’ve tried them and they make it so much easier and mean my head no longer flops backwards and my neck doesn’t get sore! We’re not sure if one will fit in my normal going out changing bag, but if not I’ll just get a bigger one.
I saw mental health team. They can’t help me because I’m not at high enough risk. Blegh. I’m both glad that I’m not that ill mentally, and frustrated that they couldn’t help even with suggestions. Last night fireworks going off made me really out of it, but I was also able to describe what was going on to Johan (he was with me at the time). I think it’s the first time I’ve been able to do that, explain what’s going on in my brain while it’s happening, but I don’t know how to stop it and I was exhausted afterwards and slept all night then all day. That was not in the plan.
I went to the local hospital for a smear test and coil change. Was funny the first time I went as they didn’t know I’d be in a stretcher, most of the information they had was wrong, and they didn’t know where to put me. They figured it out though (they had a second waiting room that had a curtained off bit- they put me there with a guard nurse at the door) and the doctor took my smear. I went back a few weeks later for the smear to be repeated as the first one didn’t have enough cells, and this time the doctor changed my coil as well as he didn’t want me having to go back there again. The second time they had two rooms ready for me- one in case I could stay on the stretcher like the first time, and since I couldn’t (the ambulance guys needed it for other people) they kicked a doctor out of his office so I could go on the only bed in the department that lies flat. It wasn’t exactly fun, but the coil change went about as well as it could have and I was in less pain than the day before, so I appreciate that. My second smear came back normal so I don’t need to worry for 3 years now, and 5 years for the coil. I’ve been a bit crampy and moody since but hopefully that’ll calm down in the next few weeks.
I have a hospital appointment at the beginning of December about my dental surgery. It’s going to be at a further away hospital, which will be the furthest I’ve travelled in over 4 years. Hopefully it won’t take too much longer after that to have my broken teeth removed- one of them has had a temporary filling in for over a year.
I’ve been playing a lot of World of Warcraft since Legion came out. I’ve done all the current quest lines, got all three artifacts for my Priest, and am concentrating on levelling my Discipline one. I’m okay doing most World Quests, LFR and normal dungeons. I’m too scared to try heroic or mythic dungeons yet, though since I have a 853 item level I am geared enough. Part of the problem is that I don’t really know how to heal with the new Disc system- in LFR it doesn’t matter too much if I’m not sure what I’m doing as there are other healers, but in a dungeon I’m the only one. I’m considering learning Holy for it, but I think I need my brain to work better first. WoW is a lot of fun though, and I’m glad I’m able to spend a decent amount of time in it (mostly at night while Johan is asleep).
The biggest problem my cognitive issues is causing is I can’t initiate conversation now. I can know what I need to say and who I need to say it to, but without a prompt I just can’t do it, and I don’t know how to explain that. Replying to someone is easier but still really difficult, especially if I don’t know the person that well. I’m also muddling up or forgetting words and stuff much more these days, which if nothing else gives Johan something to laugh at (as he hears most of them). It’s so frustrating needing to do something but not actually being able to do it, even though I technically know how.
Johan is now very busy. He’s in Newcastle 3-4 times a week now, and he’s taken up running so does the 5k park runs most Saturday mornings, and goes to the gym when he can to do more running. If I’m asleep at the wrong times, I sometimes don’t see him for more than a few minutes while he sorts me out in between stuff and sleeping. Both the exercise and being out regularly is helping him a lot, and what he’s doing now might lead to a career in the future. I struggle quite a bit if I’m awake while he’s out, but it’s mostly feeling vulnerable- if something happens, I can’t do anything about it. It also means my pads leak more which isn’t fun. We’ve asked our social worker to change the call times so I’m not left alone for quite as long (the morning call moved to lunchtime so Johan can sort me out before he leaves then the carer can sort me out a few hours later) and also for the evening call to be made much later so I don’t need to cancel it whenever I’m able to go out. He’s put the request in but I don’t know how long it’ll take.
The agency finally stopped trying to send the bad carer in October. It took my social worker putting it in the contract not to send her before they’d stop. I’ve had several carers say they’d happily do those calls if asked, so it’s not that no-one wants to deal with me, but they kept insisting she was the only person available. I’ve still not heard anything about my official complaint (that I put in during July) so once everything else has calmed down we’ve got that to chase up. It’s the usual problems we’re having with the care agency now- most of the carers are lovely and do their best, but there’s a complete lack of organisation and communication, and I still don’t get rotas so get panicky every weekend as I don’t know who’s coming.
At some point I need to see my GP as my antiemetic has started causing tachycardia and palpitations, which stops me sleeping and is very uncomfortable. I can reduce my heart rate manually for a bit (by holding my breath and tensing my muscles- I discovered it myself years ago when I thought I was panicking but was actually having POTS attacks, and it turns out it’s an actual treatment) but it eventually goes back up and the palpitations stay. I’ve been on it for several years without problem so I’m really annoyed this has started now, as it was the third one I tried and I really like not vomiting. Hopefully we can fit it in around Johan being out all the time.
I’ve now written a blog post that’s too long for me to read. That’s probably a sign I should publish it. Hopefully there aren’t any massive mistakes in it.