The last 10 months have been some of the most challenging of my life. When i left my old home in Harrow for my operation, i knew it would change a few things, but i never expected it to change everything.
With so much in flux, i thought now would be a good time to pause and write up a summery. Here is the good, the bad, and the ugly of my life in mid 2016.
There are good and positive things in my life. I know it seems obvious to state it, but no doubt this post will have to cover the challenges, so lets start by celebrating the good things.
Mothercare - i have somewhere safe to go which is cheap, close, feels safe and open everyday. The local mothercare has a cafe with the most wonderful polite and helpful stuff. This is the furtherest reach of my independent travel, and i spend 20+ hours there a week. It’s not autism specific, but the general family freindlyness works for me. I have a darkish quite corner to hide in where i can watch the world.
Carrie / Babysitter - Carrie continues to be amazing. Over the last 6 months we have continued to refine our routines and build on them. We have ventured to places like the park and the swings. Its extremely hard (eg, we dont leave the car at the park yet) but its getting there. She has also collected me from a mainline station! Finding a babysitter not a "care agency" is still the best decision i ever made. Finding support which understands autism is a huge bonus.
Still working - this is right on the line right now. I am just about keeping myself working, though it is a constant struggle. Having no energy really limits what i can do. I have changed jobs within the BBC to try and make things a bit simpler.
Health - My physical health is pretty good. I am doing my teeth once or more most days, washing 6+ days a week and generally fit when my body isn’t exchusted from the anxiety.
Alongside the day to day stuff, there are other notable achievements too.
NAS Talks - I have presented at two large National Autistic Society events, on technology and independent living. Including sharing a stage and being on a panel with Dr Temple Grandin! In all speaking to almost 1000 people. The feedback has been great.
Other Talks - i have also presented in manchester for Autism Together and in Grimsby for Focus Social Work. Also good feedback!
Scottish Autism Article - i contributed an article to the spring issue of Share magazine, writing about my use of technology.
Performance Article for Net Magazine - i also had an article about how we approach website performance at the BBC published in the print edition of Net Magazine. My first full print article in a national magazine. (and nothing to do with Autism at all!).
It’s been a busy 6 months, remarkably productive considering the challenges.
Okay, so there is bad stuff too.
Travel - my world has become much much smaller. It was proving unsustainable for me to travel into town so i have stopped visiting the hub. I just don’t have the energy to get there and back. I live 95% of my life in a half mile square box and pretty much any trip outside of that area is increasingly rare. This is extemely limting and frustrating.
Housing - i am still unable to be home alone for very long. It’s why i escape to the local mothercare cafe. Something is triggering me to feel hugely unsafe at my flat, and the same trigger is not present at mothercare or at my friends house. We have some ideas, but we need to experiment more to see if we can identify what is happening. We are looking for me to move somewhere else in September.
And finally, the stuff which is really rather ugly.
Some stuff is really bad.
Finances - i spend 96% of my income on my support and housing on a good month. On a bad month, i am drawing from savings. Long term, this is not sustainable. My limited monthly finance is massively limiting the options for getting support.
Weekends - i am still effectively homeless. I don’t feel safe in my flat (and that trigger panic attacks!) and i cant afford or arrange support at the weekend to be there. So i am sofa surfing each weekend to avoid my flat. This is massively unsettling. Unable to sleep in the same bed everynight and never being able to properly settle and get use to a place. However, at least for now, there i nothing i can do about it.
Overnight support - untill now my freinds have been providing support 4 nights a week so i can sleep at my flat. They have had to reduce to one night each leaving a 2 night gap. We have an overnight support lady via an agency, but i am struggling to feel safe with her. At the moment, a good night is one where i don’t panic or spend the night shaking with anxiety. Sleeping and recharging is not happening. In effect my avaliable energy each week has been halved.
Im not working this week, and probably won’t be able to work next week either. This outlook is a bit bleak. We may need to rethink this entirely.
Social Services - They have agreed some funding, but who knows if i will keep it past the next review. We are waiting for various referrals etc. Hoping at the next review they listen and act to help before this whole lot collapses entirely.