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

Catch up 1 – medical/neuro

It’s been a while since I wrote on here. Last I wrote, I was waiting for the MRI and nerve conduction study in, although thar one may have already been done.

I had them both done. The nerve conduction study wasn’t done properly, I know this because my letter said 20-60 minutes and I was out in 10, and that includes transferring to the table, whipping my trousers off and giving a brief history. They put one sensor on 2 places on my lower right leg and put one needle in my right thigh, and that was it. That was the extent of my nerve and muscular testing.

I got a letter saying that the MRI showed that I have a T7 compression fracture and wedging of T8.

I had to keep on at neuro to give me an appointment to discuss the MRI. I eventually got an appointment in May 2019.

Well, that seemed to go ok (ish). I had written a long letter with my autism support worker. I wrote down all my symptoms and explained my Autism etc.

The consultant was quite open in saying he was having to take the patients from the doctor I first saw because he left. Meaning he was under pressure from all of the new patients. He said he didn’t think the compression fracture was causing my issues walking. He didn’t do any sort of examination. He said that he would refer me to someone he knows in rheumatology. He said some people never find answers but he was sure that this person could help.

When I got his clinic letter I was fuming. I lost it and threw stuff! I had a full on autistic meltdown due to the crap he wrote in his letter!

Apparently he noted that I have PTSD and so it is likely that I have a functional disorder, that I am possibly converting psychological distress into physical symptoms. He wrote that there is nothing more that can be done from neurology and so was discharging me from his service!

So yes, I was absolutely fuming!

He also wrote things on there that never happened and I took credit for things my GP has done in the absence of neurology making appointments!

After speaking to my dad, I wrote a long complaint about his letter as, on doing some research, I found that a functional diagnosis is basically a bin to put the cases they don’t want to deal with and anything can be considered ‘functional’. I found there were functional disorder clinics run by neurology at London and Edinburgh hospitals as well as one in the west of England somewhere (I think Bristol but I am not sure). So he was also wrong that if it was functional, there is nothing to be done, otherwise there wouldn’t be these clinics!

He had no idea about my PTSD or treatment. He had no proof it was functional and an MRI which showed a spinal fracture and an incomplete or ‘limited’ NCS (nerve conduction study) was not enough to dismiss a physical cause!

I asked my GP for a second opinion. They wanted to send me to St George’s as that is where my gastro consultant is. Which I agreed was a good plan, and so that was done.

I then received a letter from St George’s saying I was to be seen in the functional clinic 😳

I again lost my temper at home! I asked for a second opinion not a continuation of the neuro opinion I saw before! my GP agreed that it wasn’t what was asked for and they referred me to UCLH instead, without sending any of the stuff I had done at my local hospital, so that they weren’t swayed by his opinion.

I finally saw a consultant at UCLH in January 2020.

She did examine me and found that I had reduced sensation from T-10 down. This was news to me as the first neuro at my local hospital only asked if I could feel the needle prick, not if it felt the same everywhere. Usually I am very sensitive on my feet which is why I wear socks all the time, even in bed. I hadn’t noticed the lower sensation until she ran the needle across the bottom of my feet which would normally tickle and I would react because I hate having my feet tickled, but I barely felt it and didn’t have the usual reaction. At the time I felt a little sad. I think it was because it was another symptom, something missed due to the poor nature of my local hospital.

I think part of that was frustration too, that again, I was being failed and not listened to and not given the care I needed. It is, according to my local CMHT clinical psychologist, a trigger for me due to my PTSD.

She said she would get the test results from my local hospital and do a repeat MRI, and do full electrical studies etc and she would see me within 3 months.

Well, before Covid -19 hit, I got a letter stating my next appointment would be November 2020. I was extremely frustrated, at this rate I wouldn’t get a diagnosis for a long time and during all this mess I had found wheelchair rugby and wheelchair basketball. Without a diagnosis, I have to fight for my place in the basketball team against able bodied players. I also can’t play in wheelchair rugby 5’s without a diagnosis. So this was even more important to me than just finding answers.

I was starting to get really fed up with my clinical psychologist, when I said that getting a diagnosis isn’t asking too much, she said it was asking too much. She said it isn’t good to have lots of tests. Lots of tests?! I had an MRI which showed a compression fracture and a limited nerve conduction study – I haven’t had hardly any tests!

Then she decided my autism must have something to do with it after the local neuro 🤦‍♀️

She thought I might have EDS, which I don’t meet the criteria for.

I don’t want just any diagnosis, I want the right one with proof that it is what they say it is.

So when I wrote the complaint about the local neurologist, I also wrote one to my local mental health service’s trust, basically saying that if it is functional and I am converting psychological distress into physical symptoms, then when they could and should have diagnosed PTSD in 2007 and didn’t, I might have resolved some of this distress and so wouldn’t be in a wheelchair. I was hinting that their failure to diagnose was the reason I was in a wheelchair.

This was interesting as they then got me into the complex trauma service. More about that in the next catch up, which is PTSD or C-PTSD

Clinical psychologist, Nativity, social workers and recruiting a PA- 4 busy days

The last few days have been pretty busy.

Monday I went to what was supposed to be my last EMDR session before christmas, but as I struggle a lot with processing between sessions, the CPsych decided to let me choose between carrying on the EMDR from the previous session, or using the time to discuss something different.

I chose to tell her about how angry I have been and how it is hard for me to try and be happy and calm during the christmas period. I am not a massive fan of christmas thanks to my parents who made sure that the 3 of us were never going to enjoy christmas as teens and adults. However, I have to try and make it special for the kiddo. She never really got christmas until a couple of years ago, and me spending last christmas in hospital wasnt exactly the type of christmas I wanted to give her.

I was kind of hoping for some advice or some encouragement from the Cpsych, but nope, I ended up leaving more angry than I was before I had even got there, which in all fairness I didnt think was possible, so it turns out I wasnt as angry before the session as I thought I was.
First off, she tried to say that my legs are weak BECAUSE of using the wheelchair, which is not true, my legs are weak and painful and spasm… and so I need to use the wheelchair. I had a test done in November and it showed no muscle wastage, I do try and move around the house on crutches, so she is wrong. People dont like hearing they are wrong.
Then she kept saying ‘your Ass-burgers’ blah blah. Actually my dx was changed to Autism because of my speech delay- so it isnt ‘ass-burgers’ thanks.
To finish off the shit show, she said that when I am angry I criticise others which comes off as attacking. I said ‘no, I state facts as to why I am angry, if someone takes that as criticism or attacking, that is their problem, I am just stating facts’. She said it was a problem for everyone around me. Well, considering I dont really have friends and the only people she has heard me ‘criticise’ are my awful family members and the social worker who has taken 6 months to do a copy and pasted assessment with out of date and incorrect information on, and had to be constantly chased to send off all the right paperwork off, yet still managed to not send off the request for my direct payment to be paid… I dont think she can really say any of those people dont deserve a little criticism!

I had to shut myself down, which isnt exactly easy or nice, in order to try and be ready for the kiddo’s nativity that evening!
I got to the school and while they had the keys to get me through to the hall, they forgot that I was going to be there and so I struggled to get into the hall as they had blocked off the only wheelchair accessible door, and then they had forgotten to save me a space and most of the seating was already taken so I was kind of in the way a bit off to one side of the stage.
Didnt matter once it had started. My kiddo was just brilliant! She was an angel and stood at the back of the stage signing all the songs in makaton. She was amazing. Even more amazing was that she managed to carry on through laughing at my dad who was sat behind me and was copying her signing – even though he doesnt know makaton, and she was only put off a little. I have no idea why he kept doing it. Cant take him anywhere.
I maanged to give the teachers and the family link worker their gifts. Well deserved gifts. They have helped my kiddo get through a lot of changes this year and I cant thank them enough for all they do.

Tuesday I had a meeting with my volunteering role. It was boring but managed to get through it.
Met my social worker after. Trying not to be to critical of her… well, that is hard after finding out that she hasnt updated my care plan with the CMHT since she took over as my social worker. It had been untouched since my last CMHT social worker left when I was in hospital. If she actually did her job properly, it would be harder to find things to be critcising! However, she gives me all the ammunition!
I hope she is on holiday already, because I do not want a repeat of the assessment where she just left it, leaving out lots of highly relevent information, like the fact I am now a wheelchair user and have a feeding tube and that I struggle to keep on top of my feeds and fluids due to my poor mental health recently and my executive functioning diffiulties which makes initiating the task difficult… not to mention
-I cant reach the sides in the kitchen from my wheelchair and I cant stand up long enough without causing painful muscle spasms to set it all up
– it is a royal pain to have the feed bag on as it isnt big enough to hold anything else but is too bulky to have another bag on the wheelchair, it also makes walking with the crutches even more of an effort in the flat.
-the only way to stop the tube catching on the wheels of my chair is to have the tube coming out of the top of my jumper and that is really irritating and not exactly discrete.
-I need to go to the toilet more, which means more walking, which means more spasms which means less sleep.
So yeah, sometimes I dont want to put the feed/fluids on because it sucks. Although having done it for the past 4 days in a row, I do feel a bit better in myself when properly hydrated.

After seeing my social worker, I came home and got an email from the kiddo’s disabilty social worker as we had an appointment that afternoon when the kiddo got home from school. We had arranged to meet at shakeaway at 4. She had sent me the kiddos support plan. I was so jelous! Having just seen my bog standard boring support plan, I was in awe of the kiddos! It was pokemon themed and really captured all the things that needed to be on there in a fun way.
The kiddo was late and it was pouring with rain. I usually avoid parking in the shopping centre but it was the only way to stay dry. So when there was only one lift working and lots of able bodied people who didnt want to have to go further to take the stairs or escalators.. I was starting to get stressed. I was already stressed because we were late, but this was heading to overload stressed. The lift was packed as I got in and we went to the upper floor of the shopping centre and there were loads of people behind me as I tried to back out. The kiddo was stressed and had her headphones on. I asked her to move and looked over the other shoulder so i didnt bump into other people coming out of the lift. My kiddo must not have heard me and my wheel hit her foot and the momentum I had took me over and my chair tipped and I smashed my head on the floor. It wasnt fun. The impatient people who wer in my way now were surrounding me asking to help. I managed to get myself back in my chair and we met the social worker.
The kiddo was not interested in talking to the social worker, and it tends to be a bit awkward as then she talks to me, small talk stuff, and I feel a bit of a muppet trying to answer her questions.
It seemed to go ok though as the social worker wished us a merry christmas and said that she was happy things are going well for the kiddo. Which they are. Thankfully. I can just about cope with all the crap I have going on, I dont think I could cope with seeing her as sad and defeated as she was when things werent going right.

Wednesday. Finally I had answers to how many hours my direct payment was going to be for a PA for me. I also had some advice about doing the advert and my advocate was coming out thursday to help with that.
Me and the kiddo watched christmas films snuggled up on the sofa.

Thursday- today, I had to do some house work and was the 4th day in a row that I actually had the pump for my tube feeds and fluids on. By the time the kiddo went out with her PA and my advocate came to help with my PA advert, I was in a lot of pain from the spasms in my legs.
We discussed the other issues to do with the social worker and the Cpsych, but we are going to tackle those after christmas. Although she could tell how much pain I was in and asked if I ever went to my therapy appointments or social worker appointments when in pain like today. I said no, because they tend to be in the morning and she added that I probably rest gearing up to the appointments which is true for the most part. I had a meeting before the social work appointment but I dont tend to have done housework and had the kiddo home in the morning before the appointments. So she suggested not resting before the appointments next time and dont take the chair in and let them see how much I struggle because they dotn see it they dont understand.
I agree to a point but I also am not sure that will change anything. The Cpsych still thinks my PTSD is what is causing the medical issues.

We got the advert done and hopefully I will be able to employ someone who can help me. My advocate knows me more than most people, so she was able to do a lot of the work as I couldnt concentrate. She also gets how much I struggle with communication and I dont have to try and be fluently verbal with her, she doesnt expect it and doesnt make me feel like an idiot when I cant get the words out, which means I have time to find the right words not just say what the first close thing that comes to mind.

So that was a packed 4 days.

Tomorrow I am off to my Brother’s ex’s house to see my wonderful niece and nephews. The kiddo is all excited. I am too, but it is always a little hard for me to have to walk past my mothers house to get from where the car is parked to the house. A lot of bad memories and I dont want to see my mother.