Month: October 2014

Danni

My Body’s Crap- Can I Have A New One Please?

Autism, Computers, Danni, Gaming, M.E., Penguins!, Physical Disability, Real Life, World of Warcraft

Asked Johan what I should blog about as wanting to blog, he came up with the title 😛

Being this up and down is frustrating. Johan thinks it’s because of my cold. He’s probably right. Although ME is a fluctuating illness, I’m not used to it fluctuating so much in so short a time span. I’m going from being able to play WoW on my computer to curled up in a ball hoping my body will behave or vice versa within a couple of hours, rather than the usual few days. The computer playing isn’t even the cause as there are days I’m waking up in agony and struggling to cope with anything then a few hours later I’m doing much better and can go on my computer. It’s visible to Johan and the carers as well. I don’t go on my computer every time I feel up to it but it’s an amazing distraction and is much easier to pay bills, do the food shop and stuff on there so I’m glad I can do it some of the time at least.

The main downside of this is my nausea is worse than usual. I’m having to take cyclizine more often, and that makes me dopey, and often needing to sleep. With taking it nearly everyday (and sometimes twice a day) I have no sleeping pattern at the moment, which is difficult for Johan and planning things. I wanted a wash this morning but by the time the carer arrived I was feeling very sick and in too much pain to be touched so I’ll have to wait until I’m up to it. I was doing okay (and on my computer) before that as well.

Next week I have an appointment with my consultant. Johan made all the phone calls needed yesterday so hopefully it will actually happen this time. Stretcher transport has been booked, and they’ve been informed it’s time critical and it’s been rearranged twice because of them. The clinic at the hospital know I’m coming by stretcher, are arranging a clinical room to wait in (as stretchers can’t fit in the waiting room – fine by me) and they’ll transfer me onto a bed in there, where my consultant will see me. Hopefully it’ll all go to plan, though the appointment is at 9.15am which is going to be fun. We’ve not been given a time to be ready by so I’m going to aim for 8am, with as much stuff prepared beforehand as possible.

I’ve got to think of what things are most important to discuss with my consultant. Muscle spasms are the big one, as my GPs haven’t wanted to treat it without the consultant having input. My inability to digest food in a timely manner is probably important too, as is discovering I’m more hypermobile than I thought. I’m expecting there’s not much he can do, but he’s pretty good at figuring out what’s ME and what is something else and he might have some ideas that will help. If he had any ideas to make my hands less useless I’d be so happy, but that’s probably asking too much.

I’m desperate for a shower or bath. Bed baths just don’t make me feel clean, especially since the carers don’t wash me how I want to be and I’m not well enough to go explaining it. One of Johan’s difficulties right now is he can’t print or scan anything, so even though I’ve got it typed up they can’t read it. I’m also not well enough to have my hair washed and body washed on the same day, which doesn’t help. I’m also really wanting my hair shaved off again as it’s too long, itchy and making my scalp really sore but that’s not likely to happen any time soon.

I feel like this post has been really negative. I’m still mostly happy, and I have penguins. They make everything better 🙂

Danni

Where Did September Go?

Autism, Danni, M.E., Physical Disability, Real Life

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.