The disabilities balancing act

The disabilities balancing act

Most people would see my upcoming situation and say that it is brilliant news. It is. But there is a whole layer to it that people don’t know about and don’t see.

That is what this page is about. Explaining that hidden aspect that some people will not know about and others will understand completely.

So, Friday, I have the surveyor out to do final checks and to talk to me about how the accessible kitchen will be fitted.

Part of me is excited. I can’t wait to be able to learn to cook more things in an oven that is easier for me (and the kiddo) to reach.
The only lower surfaces will be the sink and the hob.
The high cupboards will have drop down shelves so that I can store things and get them down by myself.

For being a wheelie, this is AMAZING 🤗

Part of me is really struggling and will continue to struggle until the kitchen is finished.

Being autistic makes this so much harder.

Sure, everyone would not be happy with the noise of destroying the old kitchen and putting a new one in. Being autistic, noise, both loud and complex (because there is also the complexity, too many different noises, even if not loud, can be very very difficult) can be very difficult.

For me personally, when overwhelmed by loud or complex noise, I can feel it all up my neck, sometimes into my jaw. The sensation isn’t painful like my legs are painful, it is more an extreme discomfort. It is overwhelming, I don’t have the brain space for anything. I sometimes stim using my hands to help, the repetitive movements give me something to focus on. I don’t know how it works, just that it does. I sometimes click my fingers near my ears or flick the outside of my ears because it is familiar and familiar is soothing when overwhelmed.

It’s not just the obvious noise and disruption.

I have 2, possibly 3 ‘conditions’ that affect executive functioning
Autism and complex PTSD are the confirmed, but I’ve been recently referred for an appointment with the psychiatrist to discuss ADHD.

Executive functioning is really important for organizing all the things needed before and during the works.

It is my brain’s ability to plan, initiate and carry out things, like a commander on a space shuttle, except mine is pretty useless and needs ground control (PA, my dad – although he is a ‘desperate times call for desperate measures kind of ground control 😂, my autism support worker, and intermittent mental health support depending on the whims of my local nhs trust) to come up with the plans and go through it step by step.
Don’t get me wrong, mine tries sometimes and succeeds occasionally, but this is harder than it should be.
My ground control at the moment is not great. My PA has been off for 6 weeks and could end up going off again, which would be a disaster. My dad has been trying to help, but it has been hard, his heart is in the right place, but both myself and the kiddo are properly drained when he has been ‘helping’. My autism support worker used to have more appointments with me, but now they are less. The mental health team have let me down massively at the moment. My second PA lied to me today, saying that he checked and the waste and recycling centre isn’t open today, but I know it is, I double checked and it is open. I don’t like being lied to.
I don’t have anyone else in my ground control so, it might get quite stressful and I might mess up and cause both the kiddo and me lots of problems. 🤦‍♀️

So, there is way more to it than just, noise and disruption and ‘Hey presto’ sparkly new kitchen. This is what I have to navigate with faulty executive functioning –

I have to work out where my appliances are going – washing machine, tumble dryer and fridge freezer.

I have to pack up ALL the things in the kitchen and store them, except I only have 1 cupboard, possibly 2 if I use the one in the kiddo’s room which she doesn’t really use.
Which means organizing myself to know what I can move now and what needs moving closer to the time.

I need to figure out how we are going to store and make meals for 2 weeks, so I need to set up a kitchen surface somewhere in my 2 bedroom flat.

I probably have enough clothes to go 2 weeks without using a washing machine. However, the kiddo can’t. She only has 4 days maximum uniform. So that means scoping out a launderette.

Washing dishes etc will have to work a way with the bathroom sink filling the washing up bowl. Maybe a second ‘station’ I can put up in the bathroom? 🤷‍♀️

I need to help the kiddo through it too. She hates noise too, and her new PAs can’t have her after school each day like I would have done with her last PA.

We have nowhere to go due to covid 19

So, it isn’t going to be good for either of us during the works.

Neither of us can wait until it is finished.

Have you had to balance the needs of 2 or more disabilities? How did you do?

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

Goodbye 2018

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

Trish


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.