Update

33-2016-12-30-16-06-31My husband spoke to the triage service this morning. He described the conversation as “VERY interesting”.

I should probably not go into too much detail about everything that was said, because of “reasons”, but we do seem to have made some progress.

The triage service are going to refer me straight away to one of the other centres, which is in a different county. That centre maybe has its own issues and we’d previously heard that it was being closed, which was another reason we didn’t select it, but it seems that it is still operational at the moment and a new contract is being negotiated for the autism part of the centre. The triage service are going to try to get me an emergency appointment there as they understand that my health is rapidly plummeting at the moment and that we have absolutely no support. The triage person also says that they had no reason to believe that this other centre has any issues with autistics with comorbid mental health conditions.

He told the person at the triage service about the meltdown in the first appointment and the person there said that it was obvious that I’d have a meltdown in such circumstances.

If the psychiatrist returns to work while my second referral to the other centre is still processing, then I will go back to the hospital to see the psychiatrist, so the two referrals will now be in parallel.

***

Maybe, just maybe, we will eventually get there.

One thing that has happened as a result of all this taking so long is that my identity as an autistic has become more and more certain. I am no longer asking the medics to establish whether or not I am autistic, I’m now asking them simply to provide the official piece of paper to give evidence of what we already know. With all the stress and so on I am melting down more frequently, having more and more problems with speech and forming words, and am losing verbalness sometimes for hours at a time. I hope that once this diagnostic mess is sorted out that things will become just a bit easier and I’ll be able to get on with a bit more of my life.

What has also become apparent is how absolutely essential a role my husband is playing in all of this. I could not do what he is currently doing. Not only is he telephoning and discussing and making complex negotiations, he’s also still doing pretty much all care for me. Without him I’d be eating even less than I already am. I’ve lost half a stone since September, and I wasn’t trying to. Luckily my physical constitution is reasonably good and I wasn’t tiny to start with, but it’s not ideal.

How anyone without someone to care for them in the way that my husband has been caring for me in the last few months would fare, I shudder to think. I wonder how many people are out there, still struggling on, still knowing that their lives aren’t right, still wondering if this will be the day that they kill themselves because life is so absolutely bloody difficult? I wonder how many have tried to get someone to listen to them and to give them some answers, but have given up because it’s all just too much work at a time when they have so little energy.

I’m lucky I’m not in that position.

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