Adaptions

One thing (of many) that can be really frustrating when you first rely on a wheelchair full time (I can walk a couple of steps on crutches) – your home not being accessible.

I was pretty lucky, when we moved due to kiddos need for a garden, they have us a ground floor flat with a wet room. So, when I became a wheelchair user, this was handy. Except the toilet was separate and just in a small cupboard type room by itself. The door went into the ‘room’ just clearing the toilet, that was how tight it was. The door frame itself was not wide enough, there was absolutely no way my bulky NHS style wheelchair was getting in there. Even when I got my first active user chair, it was still too small. Back then I had to sort of throw myself at the toilet in the evenings as going in on crutches was hard work and I couldn’t do it all day.

I was referred to OT and and they came out and they knocked the wall out between the bathroom and the toilet making it one large room. They closed off the old toilet door and made my bathroom door wider. I ended up losing one of my 2 and a half storage cupboards – which isn’t good because I’ve turned into a hoarder of sentimental things plus things that are ‘handy’. So it is a challenge for space. Which was also frustrating.

Taking the wall down
Getting the cupboard out for the space and to put the door in
New floor in
Finished article over a year later (I had a bit of a mishap with the drop down rail a couple of weeks after it went in, they put it back on the wall but never ‘made good’ the repair, should be done soon as it was put in to do with my next works)

So, the bathroom was done and it made things easier, I could wheel into the toilet and the wet room easier.

what now?

Well, the kitchen is a bit of a nightmare for me.

I struggle to wash the dishes in my sink, we don’t have a dishwasher, and I probably never will as my kitchen is tiny. The main problem is that it hurts my hips. I have to sit on the very front of my wheelchair and turn to the side. It isn’t ideal. Especially long term

I also struggle with the oven. The hob is too high for me to see what I’m cooking properly and the oven itself is too low for me to get food out. My core isn’t great, and I don’t always have the strength to pull myself upright with a hot dish in my hands. I would normally use my hands or elbows to help me up.

I’ve been getting on ok using a microwave, slow cooker and now an air-fryer, but I need a proper oven.

I want to learn how to cook properly. I had some dishes I could cook pre autistic burnout but I struggle with them now, my PA is there to help me with this stuff, but I need an oven I can use

I was due to have the kitchen installed in March, it was December when I had Magnet kitchens and the OT out to look at how to make it accessible. I wasn’t here when the original plans were made and apparently the council said no to the most accessible plan, which left me with a plan which reduces my storage, which I already struggle with in my small kitchen. I wasn’t happy about this, but was told it was my only option.

So I paid the £900 for the induction hob and the oven and was waiting for the go ahead- cue Covid – 19… there goes the kitchen being fitted!

Several months later, and it is being looked at again – I posted about the conflict autism vs physical need with the kitchen in my last post.

2 days ago I had the surveyor for the contractor come out and look at the kitchen and the plans – he isn’t happy with the plan at the moment. He believes the plan that was dismissed is the best kitchen for me and he isn’t happy with the fact I am not happy. He was confused as to where I was supposed to store everything. Which was my argument before!

With both of us not happy, he refuses to sign it off, and he needs me to talk to my OT to get them to agree that the current plan doesn’t met my needs and that the other plan would.

Typically she is on holiday. Not back until next Monday, but I’ve waited so long, doesn’t matter if it takes a little longer to get what I need. As this will be a bit of a fight, but I’m ready for it!

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

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

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


The Journey Begins

I am not new to blogging, but I am new to blogging about my disabilities.

I have always been autistic, but over the past year, I have become physically disabled too.

I have a feeding tube, and am now a wheelchair user. I can walk a little with crutches, but for the most part if I want to actually get out and about I need to use the wheelchair.

I want to use the blog to raise awareness of the challenges faced by people like me, and I also want to start trying to encourage places to be more accessible and welcoming to disabled people.

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton