Category: Danni

Bullet point update post for future reference!

• I’ve been very up and down, mostly down.
• Had urine infection. Antibiotics seemed to clear it up. Still have kidney pain, but that’s been going on a while now and I don’t think it’s infection.
• Johan got PIP! No mobility, but did get enhanced care. We technically could ask for a reconsideration for mobility (he meets the criteria) but we’ve decided that it would be too much, since Johan struggled just with the application. It took about 13 months from the initial phone call to him getting the decision letter.
• I finally saved enough money for project build Sammie a computer. I picked the parts (with help from Reddit) and Johan built it. I set most of the software up, and Johan finished it since I’d overdone it. Whoops. Johan lent me a bit of money so we could upgrade it a bit, so Sammie now has a better computer than me.
• Sammie came to pick up the computer with her grandparents and that made me very happy. She loves her new computer, which made it worth it for me. It’s her main Christmas/birthday present (I don’t normally do joint presents but this was a very big one) but she had it early so we could play games together when I’m well enough.
• Sorting computer and things meant I had payback. Was expected and didn’t last too long luckily. I’ve been sleeping a lot.
• I’m due my smear test again soon. My GP is going to ask for it to be done at home.
• I’ve been referred back to gynaecology to sort out my coil (it was meant to be changed nearly 5 years ago). For some reason instead of giving me an appointment in the hospital five minutes away, they gave me one at a clinic near the MetroCentre. That clinic can’t see people who need stretcher transport, so it’s having to be rearranged back at the local hospital. If the original appointment had been there, I’d have been sorted last year as I could still manage my wheelchair then.
• I should be seeing my consultant at the end of the month. They’ve changed the afternoon appointment for a early morning one, which is going to be fun. This time we’re insisting the appointment is time sensitive, and also contacting the clinic to make sure they understand I can’t get there before the ambulance can get me there. They’ve told my GP they’ll see me that day anyway, so hopefully it’ll happen.
• The last few days have been a bit bleh. On Thursday I woke up as I couldn’t open my jaw as when I tried there was horrendous pain going up the side of my face. After getting heat on it, I managed to open it where it made a massive clunk. Since then the right side of my face has been very sore. Not something I want to repeat.
• Yesterday the neighbours woke me up arguing. I felt terrible and ended up needing cyclizine so fell asleep again until last night. My sleeping pattern is now completely broken, instead of just mostly.
• We have an awesome friend staying for a bit until she can get sorted out. More forms and stuff to inform the relevant people, but at least we’ll get out of paying the bedroom tax 😛 I think she’s on the sofa until I buy the daybed for the living room, as despite what the government claims we don’t have a spare bedroom.
• Johan bought me a new telly for Christmas! Because my vision is getting worse (I suspect muscle weakness from ME) I was struggling to see the subtitles on the 32″ we have, so he bought me a 50″ one. I can read the subtitles and see what’s going on now, so I’m very happy. He’s planning on going to Sweden next year.

I still feel like it’s August, but my tablet tells me it’s October. Being ill messes up my sense of time. Last time I saw my tree (I now have a blackout sheet covering my window) the leaves were turning red and there were lots of berries. Some day I’ll find out what type of tree it is.

That week when I last blogged? I’d done too much. My body has come up with a new form of payback and I’m not impressed. On top of the normal increase in symptoms, it’s added a high (39-41C) temperature and vomiting to its repertoire.

The first week it happened (starting the day after I last blogged) we didn’t know what it was, but since I couldn’t keep my meds down we got the GP out who diagnosed gastroenteritis. I was a bit confused since neither Johan or my carer had been ill, but went with it. He gave me buccal antiemetics so I could keep my meds and drinks down, and after a week my temperature went back to normal.

The week after that our lovely neighbours decided to play music so that everything was shaking in our flat, including my bed. Despite still being weak from the payback, Johan got me into my wheelchair to find the quietest part of the flat, which ended up being the hallway. The suspension on my chair also absorbed the vibrations, which was good.

Unfortunately the combination of being out of bed and the music caused more payback. Knowing more what we were dealing with now, I went into rest mode and we kept me dosed up with antiemetics and ibuprofen to keep my temperature down. It only lasted 5 days that time but I was even weaker afterwards.

I was just getting over that when I was woken up by loud music playing. It was nowhere near the level of last time, but I had sleep paralysis for a while so couldn’t get my ear defenders on. Once I could move I put them on, but the damage had been done and I had another load of payback. Possibly because the event triggering it wasn’t so bad this one was shorter, lasting just a few days. It still sucked though, and I missed Doctor Who.

I’m now feeling weak but better than when in those payback episodes. I’m hoping to be well enough to watch Doctor Who soon. I have been watching The Great British Bake Off (less thinky than Doctor Who) and enjoying that. My sleep is all over the place and I’m needing a lot more of it than is even usual for me, but after what my body has been through I’m letting it do what it wants.

Other than that I grumbled to the CFS team when they visited, my DLA renewal form has come through (I’m glad it’s not a PIP one), and played far too much of the Kim Kardashian Hollywood game (which I’m finding a lot of fun, even though I don’t like Kim Kardashian).

My normal carer is off so I’ve been having to deal with a lot of new carers. Some have been good and understanding, some less so. I’ve been trying to be awake for at least one care call a day, but even that is hard sometimes. Johan has had to deal with the carers when I’m asleep which hasn’t been good for him, but until we can find a solution to a fixed time call when my sleep is variable (for both autistic and ME reasons) I don’t know of a solution.

Johan has had his PIP assessment. I really wanted to be with him at the time but after the payback I was getting I knew it was impossible. I gave Johan a note to help the assessor communicate with him if he got anxious (luckily it wasn’t needed, but it’s gone in as evidence now) and he said it went about as well as it could have. He’s now checking the post every day in the hope of a brown envelope telling him if he’s been awarded it or not, but they’ve all been for me so far.

I’m a bit fed up of being ill now. It’s been 5 years since I got swine flu, which triggered my ME. The new payback hasn’t helped. I’ll be asking to see my usual GP next week or so to check the temperature isn’t due to an infection or something, and to ask a few questions about other symptoms. I just want to get better, or at least stop getting worse. I’ll get there, but it’s looking a long way away right now.

(Wrote this on Tumblr yesterday. Figured it would also work here.)

Trying to explain my communication difficulties (to care workers, social workers and similar) when I’m verbal is really hard.

They assume that because I can speak (most of the time) I don’t have communication problems. Some will accept that I also can’t use the phone, but beyond that think I’m okay. Except I’m not.

I really struggle to ask for stuff. There’s a few reasons for this. Sometimes I forget what it is I need. Sometimes I know but can’t figure out how to ask for it (may have forgotten words, or just can’t get them out). Sometimes I can ask, but can’t explain the details. It means I’m not getting what I need done.

I’ve tried mentioning the obvious ones, like don’t ask open questions. Yet they still are asked, and no amount of asking them will let me answer them other than with something just to get them to stop (such as no for “do you need anything?”, when I need something).

Then there are the things being done, but are being done wrong because I can’t explain what I need (example: I need to rest in between tasks like washing and dressing, but as the care workers aren’t used to that and I can’t say I need to rest so I either try and get it done in one go and become more ill, or end up having to abandon it in the middle when I’ve pushed too far and it’s obvious to others).

Ideally, I’d have a list of tasks that I could have done, and then I’d choose from that. With reminders, such as when I’ve forgotten to have my hair washed for 4 months. I have a care plan but it’s not detailed enough, I can’t access it without help, and I’m not well enough to fix it so it’s accessible to me.

Johan has similar issues. Yet during his assessment for care, the social worker put down he has no communication issues because he could speak at the beginning of the assessment (he was barely able to form words by the end and I had to provide the answers to the questions, which was mentioned in the assessment). We both have large vocabularies and sound intelligent when verbal, so there’s the assumption we can’t struggle to communicate.

It’s not helped by there not being a place for autism. I’m under physical disabilities as that’s my biggest need, and they don’t get autism at all (I’ve been told I just have to accept strangers coming to provide personal care and not being told of any changes, which I simply can’t do). There’s currently an argument over whether Johan’s care will be funded by mental health or learning disabilities (in the UK, that means IQ under 75- we’re both good at the stuff IQ tests measure, so don’t count).

Autism isn’t a learning disability, but the kind of help we require is very similar to that needed by those with one, though it might need to be provided slightly differently (I know that’s not the case for all autistics, but it is for us). Autism isn’t a mental illness either, and treating it like one doesn’t work very well in my experience.

I’ve always felt a kind of kinship with those with learning disabilities, like we’re more similar than different. I excelled at academic subjects until life exceeded my ability to cope, yet understood what it was like to struggle to learn other stuff. Many of my friends over the years have had learning disabilities, and I know it’s confused people but they’ve been great friends.

We don’t really mind who provides the funding, so long as we get the help we need. I know we’re lucky to get any help at all. Yet the help I’m currently getting doesn’t quite meet my needs, and Johan’s been struggling for years without and nearly died because of it. I wish there were an easy way to fix it, but neither of us have the spoons.