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 reality of being Autistic and a new wheelchair user going shopping

Becoming a wheelchair user is a massive change, a lot of people do not seem to realise that there is a lot more to it than just sitting down in a wheelchair and getting on with your day to day life.

As much as any person who becomes a wheelchair user states that they will be independent and rely on no one, that just isnt possible all the time. As someone who is not only ridiculously stubborn, but also autistic and so finds communication difficult especially with strangers, this is a massive problem for me.

Since a massive autistic burnout a couple of years ago I struggle a lot with the things I struggled with as a child- word finding difficulties and just not being able to connect thoughts to verbal words.

why is this relevent… well, one thing I still have to do weekly or even a couple of times a week is the food shopping.
(I have tried having home deliveries but none of the supermarkets seem to be able to manage getting an order right. Apparently Tesco cant seven substitute water for another ‘brand’ of water! Which, as someone who is tube fed, is pretty much the only thing that comes in the shopping for me. Also, I need to get out of the house, and shopping does that.)

Shopping has lots of parts to it.
I drive, although I really thought my GP was going to contact the DVLA after an incident with my legs shaking while driving, but kept my licence as I got my car adapted so it has hand controls. Actually using the hand controls takes the strain off my leg (I drive an automatic because of my sequencing issues I was having problems with the right order for gear changes at roundabouts for manual. Although, as I didnt have my diagnosis when I was doing my lessons, I told people another truth, that due to a knee condition I have had since childhood, I found the clutch to be too much… both were true reasons to switch to automatic but the idea that I was incapable of doing gear changes properly at roundabouts, would have led to my brother and others laughing at me, although I got to be the one laughing as I passed my auto test first time! Not even my mother passed her auto test first time!). The hand controls are also very simple and easy to use. So I push myself to my car, and, because I live on a public footpath, tend to have an audience as I sit on the boot of my Mini Clubman, fold my wheelchair and put it in the boot and struggle to co-ordinate my legs to walk to the drivers door and get in. I tend to not take my feed bag with me as I need to be able to hang shopping on the back of my wheelchair, so that makes the process a little easier. I drive to the supermarket and here is the first hurdle.

parking!

Generally, there are very few spaces available for blue badge holders to begin with.
Occasionally I will find there are no bays left. So I either have to go home, wait, or park in the parent and baby/toddler bays. I can NOT park in a normal bay at all because

a) I can’t get out of the car, I need to have my door fully open to get both legs out and to get myself up out of my chair. Which is why I need wider bay.
b) There is no hatching at the back and I need to be able to open my boot and unfold the wheelchair and put the cushion on.
c) I need the path to go down as cars reversing can not see a wheelchair behind them and I think I have enough problems without adding extra!

That being said, usually I manage to get about half way to 3/4 of the way up the one strip of bays. Here is where it gets interesting. As I pull up, I tend to get people staring at me. I dont normally pay much attention to what is going on outside the car but it is hard not to notice that someone is pretty much stood at the front of the car and isnt moving on. My Blue Badge is always on display as I had a habit of forgetting to put it up. So it is on a non slip mat on my dash- therefore, the person can clearly see I have a blue badge. Here one of two things happen.

  1. They stare at me, making me severely uncomfortable while I struggle to the boot and then as soon as they see the wheelchair come out they hurry off.
  2. Before I even have a chance to try and get one foot out of the car door I get abuse. I get told I am too young to park there – which is ridiculous as disability is not an age thing. The elderly are not the only ones with mobility issues! Or I get told that it is a disabled bay- which is obvious as the massive white wheelchair sign is painted on the floor and a blue sign with a white wheelchair logo is directly in front of me, plus I do actually have a blue badge. Generally, I dont have the words to argue, I get angry and flustered and ignore them, which only makes them worse, until I get my wheelchair out and get in it and then they seem to shut up and walk off.

I go down the path to the crossing and of course there are cars with No blue badge being parked in the bays between the shop and where I parked. Which given the abuse or the passive aggressive staring, is very frustrating, as people tend to ignore the fact I have a badge and still have a go!

The supermarkets have wheelchair trolleys.. these are horrible. I had a white wheelchair as my first chair and the wheelchair trolleys scratched the paintwork as the bits that hold the trolley on are plastic. Currently I am using a loan chair, which is a brand new chair which is used as a demo for people thinking of buying that particular chair. So I cant scratch it. I have 3 choices.

  1. Use a basket and only get essentials
  2. Try and use a regular trolley – except the trolleys are very hard to control while pushing yourself in a wheelchair.
  3. Ask if they can have someone push the trolley for me

I usually go for 1. I often get asked why I dont just use the wheelchairs in store. Firstly, I dont want to leave the loan chair. It isnt mine. Secondly, the wheelchairs they have mean you cant turn with the wheelchair trolley on properly because the caster wheels are huge compared to an active chair. The electric scooter things… if there is ever one available, I would feel embarrassed, which is totally a me issue, but they are also loud, and shopping is overloading enough without driving one of those things around.

So, back to shopping, I grab a basket and put it on my lap. I manage most things without help, but certain things I cant use the grabber for are out of my reach and too difficult to try and get up to get them… So I have to try and ask for help. Which not only sucks because I want to be independent, but it also means either trying to find a member of staff or asking another shopper for help. Which means despite being overloaded from the shop, I also now have to try and ask for what I need. So I rehearse in my head what I am going to say, and when it comes to it, it never really comes out right. Supermarket staff, I’ve never had anyone be anything other than super helpful, sometimes bordering on a little patronising. General public, always happy to help. I’ve never had anyone refuse to help.

People do not look where they are going, or worse stop right in front of me. So I either end up getting hit with a trolley, people almost falling over me and then giving me a tut! Or I have to stop suddenly while trying to keep the basket on my lap! People do not seem to understand how mush more difficult it is to have to stop dead and change direction in a wheelchair!

Get to the till. Self service is good, but I stopped using it because the queues are actually longer and the constant noise is just too much, plus I tend to take up more room and so people are always knocking into the chair or worse, move me without warning, nope… so I go to the normal tills. The till makes me feel like a child. I can just about reach to put my stuff on the conveyor belt, around 50% of the time I am asked if I want help by another shopper which is nice. I get to the packing bit and I sometimes struggle due to the height of the packing area. 90% of the time the cashier will ask if I need help packing.
Paying- I tend to use both Sainsburys and Tesco, because my kiddo likes food that you can only get in one or the other. Tesco have their card machines too far away, and they tend to disconnect if they are taken off their holder and that delays the whole thing. Sainsburys have theirs closer so there isnt that issue.

I then put my shopping on my chair and generally on my lap too, and make my way to the car. People do not tend to pay attention or see me as they move away from the till and again, get bashed by trolleys or have people almost sit on me as they fall over. Trying to get out with everyone trying to get in is another stopping and then struggling with change of direction to get through. I then have to balance the shopping on my lap while getting to my car. I put the shopping in the passenger side and put my wheelchair away. I get in my car and leave. Then I have to get the shopping into my house… luckily when we moved over 3 years ago it was on medical grounds due to the kiddo’s autism and ADHD and the flat we were in, wasnt suitable. The only thing they had available was a ground floor flat, which had a ramp, and a wet room. Now those things are absolutely vital and I am glad they were here before I needed them, as fighting to get them would be a nightmare.

The rest of the house isnt adapted. The doorways I can just about get through, and the cupboards are high up and there isnt much room for me to manoeuvre. So despite the pain and the effort of coordinating my legs, I put the shopping away using the crutches.

So shopping has taken on new challenges, that can be hard for some, but have an added layer as an autistic person.

My personal story – Going from fit(ish) and healthy, to tube fed wheelchair user

It has been a full on 2 years that has seen my health deteriorate massively and progressively.

It is mad to think that 2 years ago I was walking miles (walking from London Bridge train station, along the Thames via Southbank, to Parliament/Big Ben, up through St James’ Park, to Hyde Park, through Hyde Park, to Kensington’s Holland Park-  plus walking around Holland park and Hyde park for hours) catching Pokemon on Pokemon go…… now I can barely walk 10 metres to my car.

It started with just feeling fatigued a lot, not garden variety tiredness, but need to sleep 14 hours a day,  fatigued, where I am used to 6-8 hours sleep. I went to the GP but because of my communication difficulties, I couldn’t explain how I felt or if there were any other ‘symptoms’ that the doctor needed to know about. So I was given a blood test form and went for my blood test. It came back normal levels for everything.

I repeated this a couple of times over several months. No one ‘likes’ going to the doctor, but I have spent years being fobbed off by doctors and treated like a child. I don’t go unless I really really have to, and that is usually when I don’t feel well enough to look after the kiddo.

My advocate, who is amazing, but really went ‘above and beyond’ as did my LIMA (low intensity management for autism) support worker/autism specialist- came with me to the GP when I explained that I was struggling to eat and drink enough.
My GP kept sending me for blood tests and said that I wasn’t ill enough for any help … yet. She didn’t think to make referrals or anything, just left it to the point where the LIMA support worker phoned an ambulance as I barely had enough energy to walk to the loo in my ground flat.

The next few months were spent in hospital, not being listened to, with consultants with huge egos and no empathy.

I couldn’t keep food or fluid down. I lost weight, and was constantly dehydrated. After several tests, and then a few more, I was referred to the hospital psychiatrist, because Autism and PTSD must mean that because it wasn’t an obvious thing, it must be in my head! (EYE ROLL).

In the end they couldnt keep me in hospital indefinitely using nasal gastric tubes (their policy is that adults are not allowed NG tubes at home), I was cleared by the eating disorders team as not suffering from an eating disorder, so they had to come up with another option. In the end, I had a PEG tube fitted, and as soon as I was allowed, I came home.

I have since been referred to St George’s Hospital in Central London to see top specialists.

With being home, fed enough and being hydrated I felt a lot better in myself, but that is when I started with the severe fatigue again and then my muscles in my legs gradually over a couple of months, stopped working like they should. According to the physio I have global muscle weakness which is impacting on a pre existing knee condition- but, they dont know why.

I was given a walking stick, and the physio agreed with the GP that a wheelchair would give me the chance to get out a bit more for longer days as I just cant walk far enough. So I have a very very basic folding active user wheelchair. It does the job, but I will need a slightly better chair down the line as it is still too heavy as it is not an ultra light chair and there are a few add ons I cant use, which would make my life easier, because of the way the chair folds. There are also a few other things which make the chair not exactly suitable for me longer term. However, I do love the chair as it has given me my freedom back a little. Even if I do need extra help to go to places.

The GP referred me to neurology in the end, I don’t even think she knows what is going on. So far the only explanation is that is could be nerve signals from the brain not working properly.

So when I get asked why I use a wheelchair, and have a feeding tube… my answer is not simple. It is frustrating as there is nothing I can do to make my situation better.

Physio wasn’t going well at all. It was confusing and made no sense. The strengthening exercises were about moving to a range of low discomfort and then holding for 5 seconds, which then caused ‘severe discomfort’ and he said to not do anything which causes severe discomfort.

I also hated the fact that the physio department in the hospital was a long walk which meant I was barely able to do the basic movements by the time I had got to the waiting room and then got to the therapy room. It probably isnt actually that long, but just the thought of having to walk to and from the car even with the stick, just filled me with dread.

I had one of my ‘screw everything’ moments when I was stressed and cancelled all future physio sessions – not that it matters because their website says they don’t deal with neurological conditions – and seeing as I am being referred to neuro, it could be neuro – so I don’t think it actually matters.

So that is how I got to where I am with my failing physical health.

32 years old and my body just doesn’t want to do what it was designed to do.

My mental health is also sketchy with the PTSD – maybe if I were a horse they would put me down… But I’m human – so I get the opportunity to struggle on and try and figure this crap out and try to make the best of the situation.

Although there are days where I think that whoever first said

When life gives you lemons – throw them at what/whoever is giving them to you

Is a bloody genius!

I guess a post on ‘why I hate the fact that now I am physically disabled and autistic – I have double the pressure to succeed and “overcome” my disabilties to make some NT able bodied people get the warm fuzzies’ will be my next post

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