It is new years eve and the end of 2018.
For me the year has ended with the same questions it started with… “why is my body not doing what it is meant to do?” Only, it has got worse.
This year has seen me fight for me and what I need. Which is something I havent really done very well before or even tried all that much to do.
However, having my kiddo 10 years ago and having to fight for her to get the support she needed helped me understand how to fight. Seeing her struggle with anxiety over my mental and physical health has given me the push to fight for me, but really for her.
So I finally started EMDR trauma therapy this year. It had a 25-33.3% chance of success in ‘complex trauma’ according to the clinical psychologist and other resources. They are slim odds and I didnt manage to make it into that category. So that is a bit of a downer. I also dont particularly get on with the clinincal psychologist and her understanding of me, but also of autism in general seems poor. This isnt helped by my communication difficulties. So that is something I need to sort out quickly in 2019, I dont really have many options as in the UK there is no long term mental health service for PTSD. There is barely a short term service that will only do a type of therapy with a low success rate. Also the clinical psychologist is the lead for psychological intervention for adults in my area and is one of few people trained in dealing with trauma in the NHS in my area which doesnt help either. I cant afford to go private… which leads me to the next part
Not only did 2018 start with feeding tubes and eventually a PEG tube in february 2018, in May I started needing a wheelchair. Which was a load of hassle and the NHS couldnt provide me with one, so I had to buy one myself, which is why I cant afford private mental health care, as it will take me 3 years to pay back the loan for this wheelchair… I say this one, it was delayed but should be delivered on the 10th of January.
I am now under 2 different hospitals, neurology locally and gastro in london. I have an MRI locally and an Manometry in London in the first 2 weeks of January. Not looking forward to either, but hopefully they will bring me closer to the answers of what is going on with me, that have completely eluded us in 2018.
PIP (personal independence payments) – A UK disability benefit paid in 2 rates (standard and enhanced) in 2 areas (daily living and mobility), that has been tough this year. Updated them on my PEG tube being fitted and they took all my daily living away, and they have decided, with no proof or evidence that I can walk 200m unaided with no difficulties. I managed to get my daily living back but at the enhanced rate, but they wouldnt reconsider the mobility. My advocate is helping me fight that in 2019.
After 2 years, I finally have a personal budget/Direct payments – I should find out in a few days if anyone has responded to my advert for a support worker/personal assisstant. That was a stressful process with a social worker who didnt do what she was meant to when she was meant to do it.
The only thing I never really had to ever fight for this year was things to do with my kiddo. Her social worker is awesome, her school are awesome, everything seems to be going well. Although I am pretty sure her DLA (child version of PIP called disability living allowance) renewal will come early. It is supposed to be when she turns 12, but she is 11 in February and I wouldnt be surprised if her forms come at the end of 2019 and her rates get reduced before 2020. It wont be a massive deal as long as my rates of PIP get sorted. She would still meet the criteria, but it is much harder to prove now that she is more settled in school.
I am pretty sure I have made it through to 2019 out of pure stubborness! Everytime I have been close to breaking point, I have stubbornly refused to break and come up with some way of feeling better about things- with the help of my advocate of course. She has been brilliant this year. I dont think I could have coped without her support.
I am hoping 2019 brings me answers and support and that my kiddo stays settled and happy.
I also Hope that 2019 is kind to everyone and doesnt make things harder than they already are.
All the best