The last few weeks have been really busy and for the most part positive. I’m slowly traveling more. I have been going into the BBC office in white city every Tuesday and have now done it three times.
For my last visit, I also took the shuttle bus between BBC sites. Even when I lived in Shepard’s Bush and had my speech I never found the shuttle easy so that was a really big achievement.
After every visit to the office it takes me a few days to "bounce back". This time, it was complicated by a support gap. Normally a friend would visit each night, but on Tuesday (right after the most exhausting work day yet)! They were not available. Instead I headed to their place and slept there.
This worked, but was so close to failing. The babysitter pulled a small miracle out of the bag getting me to my friends house by taxi when I was so tired and clumsy I could hardly walk straight. When I got there, I fell down the stairs. I didn’t get hurt (coat stand broke my fall and I only fell from about 4 steps up) but it was not a nice experience.
While my support is stable, it’s not sustainable. My friends are being amazing, but it’s starting to take its toll on all of us. We all need autonomy from each other and we cant do this long term.
It highlights the need for more external support and were making good progress there. After over 4 months, I now have a social worker and they have done an assessment. She is writing a report soon and then they will hopefully be able to fund some of my support and help us to find overnight cover.
A little alarmingly she said that overnight support would be rare for them to fund. Normally, if they feel overnight support is required they would generally place the person into a "care setting".
However, her experience is mostly with older people. She was unsure what their approach would be with supporting me.
It’s going to be another week or two till we get the report. Until then things are very uncertain.
The uncertainty, anxiety and guilt is very challenging. I can see the effects of my care on my friends and it feels bad to be a burden. When I get very down I have considered killing myself on many occasions simply to free everyone else from having to help me. It’s not a nice frame of mind at all.
This baseline stress and insecurity has really got to me. I’m starting to have more meltdowns again as I just get overwhelmed.
The meltdowns to me are a sign I am pushing to hard. So I am taking it as a hint to slow down a bit. I have a busy two weeks coming up (I am speaking at the NAS Autism + Tech conference, plus i am visiting my boyfriend in Taunton) but after that I am going to be focusing on keeping things simple so I required less support from my friends.
Hopefully, this will help maintain the stability for a bit longer while we wait for social services to get back to us with a decision. Once we have the decision (good or bad) we can then focus our efforts on moving forward.
