A big update! (Health, Getting Out & Support Changes)

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Operation at last.

Two weeks ago I finally had my operation to remove my gallbladder. The results have been life changing. The pain has now gone and I am slowly returning to normal life.

What more I have been able to eat gluten again with no side effects beyond an icky poop or two.

I have other health issues to tackle and overcome. But that’s the big one out of the way. Awesome stuff.

Gettting Out

In the weeks before my operation things were most stable. I had build up to a small but notable achievement. I had become mostly self supporting for food shopping.

This is good from the food perspective but it also means I was getting out of the flat more.

I’m in the flat for 23 hours a day. Due mostly to shyness, I then hide in my room most of time others are here. So on a day to day basis I probably spend 25% of my waking hours trapped in my bedroom.

So getting out to the shop and back in a sustainable way is a great step. It lets me see more of the world.

Additionally, I now have support in place for traveling to the office too. So, at least in theory, I should be getting out more that way too. Marvellous.

I’ve only been back home half a day but I can already feel the impulses to go adventuring. Hopefully this weekend will present an opportunity or two.

Support is evolving

The aims of the support we put in place earlier this year was to get me stable and back to work.

We have achieved both goals. The next goal is now to make my support network itself more sustainable.

For me that means two things:

  1. Financially sustainable
  2. More third party involvement.

They kind of go together.

I’ll start with number 2. We have been building up a relationship with a babysitter (see note below) since April. It’s been slow going but we are making progress.

She has been doing the odd night and then in August she did 3 nights a week for two weeks.

I find it extremely difficult to interact with her. I get very shy and quiet. On a good day I might be able to speak with her enough to tell her 3 facts about my day before I go and hide again. Even that is exhausting.

The ultimate goal is that she can provide the sort of support my friends do. For example taking me to the Drs, or helping me get out more.

Unlike my friends, she has more free time and she lives locally. So whereas it would be very hard for a friend to commit to helping me attend TaeKwonDo lessons, the babysitter is able to built it into our weekly routine. This is another way to getting out and about more.

From Monday were moving to a new arrangement where the babysitter we have been working with takes on ~60% of the stuff my friends have been doing. She will be popping in each morning to check all is well, and then coming around for a few hours each evening Tuesday to Saturday.

With some luck this means we can continue to build momentum. Perhaps even building up to nights alone and other more exciting things.

All this support costs money. One benefit of using an actual babysitter is the lower rates. She is around 1/3rd cheaper than care agency staffing.

However i still I can’t afford to pay for the amount to time I need. So we have applied for funding from social services.

Asking for money is not something I am proud of. But it’s a necessary evil. We have applied to see what we can get and hopefully it will mean I can afford to work and live.

So in summery form.

My major health issue of the last 11 months appears to be fixed. Wooohoo! I’m getting out more. Doing more things and support continues to evolve towards something more sustainable. Hoping for more good things soon.


Babysitter is term I like the most. ‘Support worker’ or ‘home carer’ is not what she does. She mostly watches TV, makes a meal and reminds me to do things. In short. She babysits. Using other words feels clumsy and forced and annoys me more than using the term which best describes her role.


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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Jamie: @JamieKnight
Lion: @Lickr