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are my awful family members and the social worker who has taken 6 months to do a copy and pasted assessment with out of date and incorrect information on, and had to be constantly chased to send off all the right paperwork off, yet still managed to not send off the request for my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.




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