I didn’t write an update last weekend. I was really struggling and after a few more days ruled by anxiety i needed a break. I went to stay with friends for all of last week and it has really helped
In many ways it was going to happen eventually. We know I don’t have enough support in place so rather than get upset and see it as a failure I am happy I lasted as long as I did.
Once again my friends have helped and been amazing. We have a decent plan to bridge the gap between now and what will hopefully be a better future.
I’ve stopped working for a month. The Dr told me too and my manager (who’s amazing!) agrees. When I returned to work 6 moths ago after my operation I expected to get my speech back in a week or two.
That’s not happened. It’s improved slowly but generally gains are short lived. I loose them once I get stressed.
As I have a month were going to try something different. For the next week and a half I am staying with my friends. They are amazing and have set me up a little playroom / den.
That will mean I get a total of a two week break from the flat. A solid change to get stable away from the anxiety and demands the flat places on me.
By the end of the month we should have a new much more sustainable and stable support pattern in place.
I will stay with my friends every weekend from Friday night into Monday morning. All the other days I will stay in my flat but with support in the morning, the babysitter in the evening and either my friends or a sleep in carer each night.
During the day three days a week I will visit the hub too.
On average that works out too just under 20 hours of support a day. That’s ~85% of the way towards support living and should be sustainable for at least a few more months.
It’s not enough for autonomy and i am still going to be massively over dependent on my friends each weekend, but it’s a step in the right direction.
For now the focus is just on building positive momentum and making sure things are getting better as time goes by.
I wish i was more able to live alone and be independent. This is the second epic crash after about 3 months and this time i really wanted to last longer.
However, we are making progress and thats a good thing. I didnt think it would take anywhere near this long but at least it is improving again now.
