Moving “backwards” to go forwards

Since I wrote my last blog post, a whole lot has happened. The owner of the flats in Milton Keynes has decided to make it a supported living scheme rather than residential. The day I found out I literally cheered and burst into happy tears. Surely now I will be able to go…


Apparently I have to “justify” my reasons for going into supported living as it is a “step backwards”. I have to have more tests, more prodding and poking. I have to prove I cannot cope in “independent living”. I have already outlined the reasons I need to move to the house in MK in my previous post (here)

I am becoming extremely unwell. I rarely get a full night sleep without the aid of benzodiazapenes, earplugs and ear defenders and even then I am woken up nearly every night. I am having constant problems with my stomach. The stress is pretty much paralysing it. I am having tremors, my tics have come back ten times worse and I am having dystonic storms which is a lot like an epileptic ‘tonic’ seizure minus the unconsciousness. On the days when I can, I cry. The days I cannot I retreat into myself, unable to do anything. I am depressed. My environment is slowly killing me.

I know it is living in this flat and the community around me that are causing the problems. Over the Christmas holidays I have stayed with my Mum in MK and my Dad in Pontefract. I went out alone in both places without fear. I was able to sleep with only earplugs (that’s a comfort thing rather than a need) the whole time I was away and I was waking up feeling as if I had slept. Well until it was nearly time to go back, that night was filled with nausea, shaking and insomnia. Since being back it has been the same old rubbish. Noise, drugs, crime, just generally horrid. The only thing keeping me strong is my bunny, Barney. If he wasn’t around I honestly can say that I would not be alive much longer. I am running out of reasons to keep going as my life is a constant fight (please do not be concerned, I am not currently suicidal as I write this, but it has been crossing my mind a lot recently). It seems that nothing in my life will ever be simple, but constant arguing for my rights.

We are not giving up on me moving to MK, even if people are putting up pointless barriers left, right and centre. With it’s status changing to supported living, the flats did not open in November as originally planned, but will be opening in the next few months. I don’t know if I will be able to go. I am living in limbo, not knowing what will happen to me next. For an autistic person this is literally living in hell.

I am rambling a bit tonight. The stress means my thoughts and feelings are being scrambled. I can’t make plans and I cannot think of the future right now. It is very hard for me to write as it is, but stress makes it worse. Sometimes I cannot write at all. That is why this blog has been so quiet since the last one. I want to write about how stupid it is that autistic people are being put through the mental health service which is focused on ‘recovery’ but I cannot put my words in order right now. Please be patient while Lucy v2.9 reboots.

Barney comforting me

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