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


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.

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.


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