Catch up 2 – PTSD, or should I say C-PTSD

Last I wrote on here I was having EMDR with the clinical psychologist over Christmas 2018.

EMDR was a bust. It caused lots of PTSD symptoms to increase while doing nothing for the trauma I was trying to process

According to the clinical Psychologist, I was dissociating too much to get the processing done. So we switched to doing some CBT stuff.

We got on ok. I was constantly trying to teach her about autism as we went and she said she had learnt more about autism working with me than she ever learnt before. Which I only ever considered a good thing, as it was obvious that she knew very little apart from the ‘little professor’ Asperger label (which is no longer used and for good reason!) and ‘classic autism’ (which is also no longer used).

It was the clinical psychologist who sort of pushed me toward wheelchair sports. Well, sort of, my local football team have an outreach programme for mental health called ‘moving the goal posts’ and as I liked football, she thought I might enjoy it. I laughing as some of it was playing football as exercise to help with mental health. I looked at her, and then gestured to my wheelchair and said I don’t think that is for me!

It did get me thinking about exercise for mental health, and I had put on some weight so it was a good idea to find something!

Long story short, I found wheelchair rugby and then wheelchair basketball.

For a while at least it was good to be playing sports. Being autistic makes team sports harder. Especially indoor noisy sports like basketball and rugby.

As I said in the neuro post, the relationship between myself and the clinical psychologist went sort of ‘downhill’ after she said she thought I was asking too much, when I said I didn’t think it was too much to ask for a diagnosis for my physical health issues. She said that I can’t keep asking for more tests – but they hadn’t actually done many tests. I also got frustrated having to keep teaching her about autism and then she also tried to say my physical health issues were down to my autism – or actually EDS, which I don’t have.

It was getting harder to believe that I would get over my trauma history. I really struggled with that, and mentioned it during our sessions. I started feeling as if life wasn’t worth living if I was going to continue to struggle with PTSD for the rest of my life. Not to mention being in a wheelchair and having a neurologist say that was also down to my PTSD. Plus being autistic struggling with interacting with other people and being tube fed. Life just didn’t feel appealing, everything was a struggle and it looked like it wouldn’t be something I would overcome.

It was a dire time mentally.

I think that is why when I talked to my dad he was talking about them taking responsibility and they couldn’t blame my mental health for everything. This is when the idea formed between the both of us to find a way to make someone accountable for my situation.

Either

I don’t have a functional disorder and they need to look into why my legs don’t work properly. The doctor shouldn’t be able to say that it might be funtional without properly checking that first, and definitely shouldn’t be discharging without a firm answer either way! (Also that if it is functional there are places where neurology would be responsible for my treatment)

Or

I do, and then the trust responsible for my local mental health service is partially responsible for me being in a wheelchair because they should have diagnosed my PTSD in 2007 and here we are in 2019 *at the time I wrote the complaint- had I had proper psychological intervention and treatment from 2007, then maybe I wouldn’t be in a wheelchair today

So they became the 2 complaints I wrote. My dad says it is ‘playing one off against the other’, and he thinks it is brilliant that we got to that idea. I don’t agree that it is that, I believe that it is making them take responsibility. The first one is more about the doctor that wrote me off just because I have a PTSD diagnosis. His attitude and the way his letter was worded. The second one is more about the late diagnosis and the impact it has had, especially if it is why I am in a wheelchair.

The first complaint is at ombudsman stage because the consultant lied in his response, rather than saying he doesn’t know or is unsure, he made stuff up to suit himself, except I have proof that he is making it up!

The second complaint, well, that actually got me somewhere!

I was referred to the complex trauma service. There they have people with more expertise dealing with dissociation and also they were asked to do an assessment of whether I might be converting my psychological distress into physical symptoms.

I met with a second clinical psychologist. We had some appointments before covid 19, and initially she said from reading all the information about me from stuff I had written and from years of reports about me from mental health professionals, she didn’t think it was likely that I had somatic symptoms- which is their word for functional. Although she would do a screening of that later on.

We chatted in those few sessions before covid and we planned to do the EMDR again and see if they could help. Once covid hit we went about 6 weeks without talking and then we chatted and we decided to give emdr a try over video using tapping. Before we got into that we did the somatic screening, I only ‘endorsed’ 2 questions, both of which weren’t actually scored because they weren’t somatic symptoms. I only have numbness in my feet but only specific areas of them not the whole feet which is under investigation, and the question really meant like whole limbs. The other was speaking and that is an autism thing which she agreed with.

So I DON’T have a functional condition! I can’t wait to send that in to the ombudsman re my complaint about the neurologist! That neurologist is going to wish he never met me!

So that made me happy, but what didn’t ake me happy was starting EMDR again.

Just to make matters worse, the EMDR would only run for 10 sessions, it wpud be to see if it worked. I then found out that the first clinical psychologist from my local team wanted to pass me on to someone else within the team, but not someone who was able to support me like I was meant to be supported during the EMDR, no, by the social worker who doesn’t actually work for the mental health team and who doesn’t take on people in that role. 🤦‍♀️

It was a shit show!

Apparently she had forgotten about autism when it came to getting rid of me! There was no hand over, no transition – nothing. I said I was worried that the EMDR would end and I would be left on my own, especially if it didn’t work. That I was in no better position then we started, actually worse because I had lost the belief that my life would get better once I was ‘over’ the PTSD.

Then as it turned out the very basics of supporting me through the EMDR was lost on the social worker because instead of having appointments to ‘debrief’ etc, she would just message every so often asking if I wanted to talk over the phone. The complex trauma service clinical psychologist was also getting rather frustrated by the complete ‘balls up’ of my support surrounding the sessions.

To make matters worse, the EMDR with her didn’t work either, despite both of us doing everything we could, it just doesn’t work for me. But neither would trauma focused CBT. So it turns out what I was worried about came true

The EMDR didnt work and now I am alone having failed again at EMDR, knowing there isn’t anything really that can be done for my PTSD and I have no support in the mental health team because they didn’t set me up with a proper lead professional!

Apparently I am supposed to use the ‘duty’ system, yet both clinical psychologists agreed that it doesn’t work for me due to my autism! 🤦‍♀️

Honestly you can’t make this up!

I got a draft of my letter and she is changing my diagnosis from PTSD to C-PTSD, and has said I also have a dissociative disorder. I know I wanted proper diagnosis, but was hoping for my physical problems not mental health, especially seeing as they wont do anything to help me with any of it 🤦‍♀️

Apparently I’m on the list of people to be assigned a lead practitioner.

So again waiting. Probably just to be let down again

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