Jan 282015
 

There are parts of this illness that are really frustrating. Some are really obvious, like not being able to get out of bed, my hands not working properly and fainting when sitting up too much. Others are less so.

Yesterday I wanted to watch television. Overall I’ve been relatively stable the last few months, and I was getting a bit bored of my normal mobile games/reading stuff on my tablet/resting routine. So I watched two television shows. The first was Penguins on a Plane (which I recorded a few months ago) and the second was Supernanny US. Neither show had fast movement, loud explosions, or a complicated plot to keep track of.

Soon after finishing Supernanny, I felt horrendeous. I’d been sweating while watching telly (I also sweat when going on my computer or reading a book) and now I was alternating between too hot and too cold. My pain levels went through the roof and I was really close to throwing up. All because I watched a bit of television. Now we’re pretty good at getting my symptoms back under control so they’re bearable again, yet trying to do something as normal as watching television makes me more ill. It’s not fair.

I’m not sure what it is about watching television that my body doesn’t like. I can spend much more time on the computer than I can watching telly (though recently I’ve been going from fine to really ill in seconds when on my computer as well). If I knew what it was it would be easier to deal with. It’s frustrating.

Things have happened since my last post. Somehow I got my DLA renewed before it ran out (and we only got the form in two days before the end date). That was a massive relief. We finally got everything together to tell the housing benefit side of the council that Esther is here, so we’re no longer paying the bedroom tax (they probably didn’t complain about us taking so long because it increased our amount of benefit rather than reducing it).

I had an eye test (in bed) and it turns out I’m a lot more short sighted than I was. This brings my left eye closer to normal as it’s my long sighted eye, and makes my right eye worse. Overall my right eye is my better eye (closest to normal) but it’s also my weakest. That surprised the optician. He also said he doesn’t get many people who can read the bottom row as most people he sees are older. I’m getting my new glasses (and sunglasses) tomorrow so I’m hoping they’ll help with the double vision and stuff. Maybe it’ll make watching telly easier as well?

I saw the CFS team but there’s not much they can do until I have my hoist. They’ve written a letter to the OT in charge of it asking why he’s not sorted it yet (they phoned him last year and he said he’d speak to us before Christmas). I wanna get out of bed and all that’s stopping me now is not being able to transfer safely. I also want a shower. Some stuff is the fault of the illness, but others is people not doing what they said they’d do.

 Posted by at 9:47 pm

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