Category: M.E.

My health is improving. This is good 🙂

I went outside for 5 minutes on Thursday, as it was International Wheelchair Day and I wanted to use my wheelchair. It was amazing being able to go out there, though I’m paying for it now.

I’m still struggling cognitively. Things that should be easy for me to do are not. Writing to people is beyond me at the moment. I am having to ask Johan to do so for me, and he’s already got a lot on his plate.

Overall though, I’m not too bad. I can sit in my computer chair for as long as I want – normally about an hour (though sitting in my wheelchair, on the toilet or commode makes me feel very ill in about 5 minutes). I can normally watch telly or YouTube videos, though I don’t always understand the content. I can wear my normal glasses all the time, instead of needing my sunglasses indoors. I even made plans to maybe go to the doctors surgery at some point in the near future, but my outing to the ramp outside made me realise I’m not going to manage that right now, at least not in my current wheelchair.

My sleep is bad. I’m waking up around 8pm, and going to sleep around 10am. I’m sleeping fine once I get there, so I don’t need anything to sleep as such, but I’m considering melatonin or something to help me to get to sleep at a more reasonable time. I can’t even blame my M.E. too much for this one, as although painsominia is normally the cause of it going completely wonky, I’ve always had difficulty sleeping at normal times from when I was a kid, which is probably due to autism.

Pain is an issue, but my painkillers work most of the time which I’m grateful for. I can’t manage without them though, which is annoying as I did for so long, but I have to remember that despite my recent improvements I still technically have severe M.E. as sitting up for an hour a day, although great, is still not that much in the grand scheme of things, especially when you can only manage it in a supportive reclining computer chair, and can only manage 5 minutes in a wheelchair or a normal chair 😛

I can stand up a little bit, long enough for transfers and sometimes long enough to adjust clothing after using toilet or commode, which makes things much easier. I have discovered though that I can’t straighten my left leg properly. This is fixable, but I’ll probably need physiotherapy to do it. My legs can now hold me up, so long as I don’t try to move them 😛

I have been making plans. Immediate ones relate to what we’re going to buy, starting with a new cooker. Johan wants a gas one. Also on the list are paint and flooring, a travel mug for me so I can have hot drinks safely (looking at one that is self sealing and you push a button to be able to drink from it- looks cool and is probably the safest for the Danni). Other things on the list are a new laptop for me, and a recliner that massages and has a heat area. Some of the items are more of a wish at the moment, but the idea is that I save up for everything on there so I can have them eventually, even if it takes a long time.

More long term plans relate to me getting much better. I want to go out to Newcastle to Barcraft at some point (Barcraft is watching Starcraft 2 tournaments in a bar in a similar way to football). That requires me being able to cope with lots of sensory input, and sitting up, and possibly getting upstairs. Before that I want to go to the Linux User Group again. That one will be doable as soon as I’m well enough to travel and sit for long enough, as there’s not as much sensory input. I also want to travel a bit further- I’ve never been to Holy Island, and I want to take Johan to Walsingham.

The ultimate goal is being able to do Student Cross. That involves walking for around 120 miles, at times carrying a heavy cross, across part of the country to Walsingham. It takes a week, and you finish up for Easter. As I would have struggled with that before I got M.E. that is a goal that is reserved for when I recover completely, which I’m still hoping will happen. I just don’t know how long it will take.

In the meantime, I’m spending my time watching rubbish telly, watching YouTube videos, and messing around on the internet. I wish I had the ability to understand things the way I used to be able to, as I read stuff and it makes no sense. What’s weird is that this morning I can type all this but it’s like a stream of consciousness, and I can barely read it because of my double vision. I apologise for any mistakes because of this.

I’m getting there. M.E. is a bitch but I’m going to beat it. In the meantime, I’m not going to let it get me down. I’m still cheerful and I still have the amazing Johan and my penguins, so I’m happy 🙂

A lot has happened since the last time I properly blogged. I had written most of a long blog post with lots of details, but forgot to save as I went along and then the app crashed, taking my post with it. As I’m still very brain foggy, I will post just a short update now.

We had looked at a bungalow, told we could have it then told we couldn’t as it was only for over 60s. This was frustrating.

I went into a care home for respite. It went better than last time, though there were still some issues. While there I went to the shop for the first time since October and got my hair cut a lot shorter (it’s now just a bit longer than shoulder length, rather than down to my bum). Overall it was good and I’ll probably go there for my next lot of respite too.

While I was in respite Johan went to London to a disability conference thingie, went to the House of Lords, then went to Leeds to see his family for his birthday. He had a good break.

I relapsed after going into the care home. It wasn’t as bad physically as the one in December, but it was very bad cognitively.

Johan was diagnosed with autism on Wednesday, to the surprise of no-one. He’s trying to come to terms with being diagnosed (though he’s known he probably was for ages) but we’re hoping it’ll help in the long term. We’re applying for DLA to pay for a support worker to help him, as with me being more ill I can no longer do as much as I used to.

We got offered a 2 bedroom accessible flat in a central location. We accepted, and moved in on Friday. We’re not completely moved out of the old flat yet, but our lovely landlord has given us another week. New flat has a ramp to the back door (accessed from the main road, not the road the flat is on), and a roll in shower that I currently can’t use. I also can’t use the toilet as it has no back, so we’ll be asking the OT to sort it out. Once everything is sorted and we’ve decorated and put down new flooring (currently just floor boards, we’re going to have laminate) it should be good.

We went with Virgin Media for broadband, phone and telly, something I never thought I’d do. We get 50mb down/1.75mb up, which we’re enjoying a lot, as we’re getting a solid 6MB/s download even at peak times. It’ll be upgraded in a few months- the upload to 5mb in April then to 100mb down/10mb up around July. The upload speed will be about the same as our download speed was at the old flat. I wasn’t originally going to get the telly but it was cheap and the first 3 months were free, and we’ve since discovered there’s no aerial.

That is most of it, I think. We’ve got a lot to do in relation to moving, and my brain still feels like it’s operating in treacle, but hopefully things will be good from now on. I’m also hoping to be able to blog more frequently again now.