Week 80 - "Your Bleeding From your Head..."

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I walked into my friends lounge and he said "your bleeding from your head". My first response was to think "thats an odd way to start a sentence, i was expecting a hello" and then i understood and said "oh".

I already knew i had an earache, we’d called 111 already when the pain got really high, but bleeding from my ear was new. I’d also just halucinated a chat with a radiator… and was loosing my vision in one eye. I collapsed shortly after when i tried to walk to the car. Not good.

A very quick trip to A&E and some doctors later they diagnosed a pair of ear infections and a chest infection. The pressure from the infection was distorting my vision and had blown an ear drum. They injected me with a bunch of anti biotics and sent me home with more.

That was a little over a week ago. A very scary evening but we got through it. I was even verbal for some of it!

I’m now back home (sort of). I have spent today sorting out my flat ready for a full time return later this week.

The vision loss (by far the scariest part) is mostly back to normal. My glasses don’t feel quite right (stuff has got a tad blurry) but on the whole its good.

My hearing loss is quite significant. I have quite strong tiniuits as well as the remaining infection and the broken ear drum. It’s a bit odd really, i normally watch TV on a 6 or a 7, but now even on 30 i need the subtitles to get everything. I can’t hear my fingers typing and cars on the road pass with an almost electric sounding woosh.

Hopefully the hearing loss will sort itself out, if not then i will need an operation. Bugger.

Pushing too hard.

I think the reason a cold others shrugged off in a fortnight turned into infections is because i was pushing too hard. I’d been pursuing new achievements as hard as i could and the three days before i got ill had been extremely intense. Three days of intense activity after two months of daily struggle turned out to be too much.

This isn’t the first time i have pushed myself to the point of getting ill and collapsing. Ooops.

The break from the flat has been good. It’s remarkable how much more i can do when the pressure and demands of the flat are removed. For example, being home alone all day is trivial and a bath or shower alone isn’t an issue. I can socialise, help with cooking and i have most of my speech!

Where next.

We knew the flat was going to be hard. About 3 months into the overnight support and i am making lots of progress. Better speech (somtimes), big achievements for travel, weekly shops with support etc.

However, we don’t think it’s working. Long term i am not going to stay in this flat. My rental agreement expires in the new year anyway so we’re just going to be focusing a bit more on what comes next.

In the short term, i am returning to the flat, but we have put more support into place. A friend is going to visit each morning and lunchtime so i have some interaction everyday with someone i am comfortable with.

The focus of this flat is changing. Rather than seeing this as "starting a home" i am seeing it as a place to experiment. We’re going to simplify the flat as much as possible (e.g. move stuff into storage) and we’re going to try and focus the time i spend here around more concrete goals.

All in, its been a tough two weeks. I am worried about my hearing and the future, but i am also proud of what i have achieved. I think we have a good feel for where to go next and we will just have to keep pushing on.


Spaced Out & Smiling is about exploring the fun side of Autism, and trying to understand what it means to be Autistically Happy.

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