Finding it impossible to get taken seriously (⚠️LONG AND RAMBLING⚠️)

I’ve been having symptoms for at least a decade and I became so ill that I ended up bedridden at my parents for practically the entire 2010s. When I felt I was strong enough to attempt to get a diagnosis I ended up getting sectioned.

I am still under the MCA and DoLS. I am becoming progressively more and more ill.

I spent 18 months in an ATU. From there I was sent to a care home for people with severe learning disabilities in Leicester. I do not have a mental illness; I do not have a learning disability. I am Autistic. I am not ashamed of me, but the world seems to be; society seems to want to lock me up and pretend I don’t exist.

Well, I do.

After 18 months there, I was sent to a supposed flat in Wing, near Leighton Buzzard. The flat was at the top of four flights of very steep vinyl-covered stairs. By this point I was struggling severely with mobility, and I basically crawled up on my hands and knees.

There were two managers whilst I was there, both with the same name, SK1 and SK2. SK2 was there the longest. SK1 refused to allow staff to assist me up the stairs because “our insurance doesn’t cover it”.

She left after I’d been there around 2 months. Her successor, SK2 (who I’ll refer to as SK from here on as SK1 never came back) was one of those people who go into care not because they find it a rewarding career, but because they love the feeling of power (there were a few of those at the care home too).

I used to get food delivered from Ocado. SK told staff not to help me take it up to the flat. Not only do I have severe mobility issues, I often struggle to breathe (I don’t know how to describe it; it’s like there’s a lead weight pressing down on my chest, whilst it’s simultaneously being squeezed). I’m struggling now, it’s not as bad as it sometimes is, but I wouldn’t be able to speak.

I started to become more and more dizzy and would frequently fall down the stairs. Staff just stood and watched me fall, did nothing to help me, because “We can’t help you; the manager says you are capable of doing it yourself”.

So I just had to leave it. I had so much food go bad because I wasn’t able to get it upstairs. After a few weeks of this the manager ‘relented’ and staff were told to bring the food up to the flat and I’d put it away.

Then she suddenly took it upon herself to monitor my fridge, and she started binning food the day after - or two days after- it was delivered, because it was “out of date and mouldy” (I once treated myself to some Cropwell Bishop Stilton - I never got to eat it. I asked SK where it’d gone “I had to bin it. It had all green and blue mould growing in it, it would have made you VERY sick had you eaten it”. I’m sorry, but who the f**k makes it past 40 without knowing that blue cheese is a thing that exists…?!).

Everywhere I’ve ever been, I’ve been treated as though I don’t have 2 braincells to rub together; I’m spoken to in that very slow, very deliberate way people often use to speak to someone with dementia. I will switch off and refuse to speak to anyone who refuses to treat me as who I am: an intelligent adult.

She then started telling anyone who could have any influence over my life, that “S loves to eat rancid, raw meat” and “S loves to get mouldy food out of the bin and eat it” (I hope I don’t have to reassure you that both statements are patently untrue).

I ended up in Stoke Mandeville’ whilst I was in there, she had the flat cleared - not cleaned, CLEARED. She chucked EVERYTHING I didn’t have on me. She then blamed my social worker, because “he arranged it”. That’s irrelevant; she was the manager and, even if it was arranged by SS, it was her job to supervise these complete strangers she’d just allowed to enter what was supposed to be someone’s home. She didn’t seem to get that when I pointed it out to her. She was the only one onsite who had a key to the front door, therefore she’d have had to have been there to let them in. I tried making a formal complaint to head office, they simply referred it back to my SW, who referred it back to the flat manager. I was becoming very ill by that point, so I just had to give up - at least £5,000 of stuff written off.

Whenever I left the flat (which I did rarely due to being so ill) the manager used to follow less than 10 paces behind. Would that make you feel safe…? Because I was TERRIFIED. I felt like I was being stalked. I stopped going out because I just didn’t have the energy to run to escape her.

I eventually managed to escape from there, and ended up where I am now: Bristol Royal Infirmary (ward A528).

Here’s a list of my current symptoms:

Peripheral neuropathy :cold_sweat:
Muscle spasms :muscle:t2: (Including oesophageal and laryngeal meaning I sometimes struggle with swallowing and sometimes start coughing and won’t stop until I throw up)
Mouth ulcers
‘Wandering’ right eye :eye: (I believe the medical name is internuclear opthalmoplegia. If you look that up in Wikipedia, there’s a schematic; it’s exactly like that, but it’s my right eye. Also on that side I have a ‘dent’ in the side of my head, just to the right of that eye).
xtreme brain fog :face_in_clouds: (the frustration of this has caused a complete 180º personality/character change. I don’t know who I am anymore. I don’t like this person, I want the old me back, please)
Blurred/double vision :eyes:
Eye pain (behind my eyes; sort of like between the sclera and the orbit)
Vice-like headaches :face_with_head_bandage:
Which often cause photosensitivity
Extreme fatigue :sleeping::weary:
Struggle to breathe- extreme breathlessness (feel like I’ve run a marathon without actually doing anything):lungs:
Severe tremors in hands :raised_hands:t2:, legs​:leg:t2: and feet​:foot:t2:
Purple feet
Weird sensation in chest, I hesitate to call it arrhythmia, but that’s what it feels like; feels like my heart’s missing beats (when I feel my pulse, sometimes it ’skips’):anatomical_heart:
Chest pain, sometimes feels like my chest is being ‘squeezed’
Struggle to regulate body temperature :face_with_thermometer:; I’m often extremely sweaty​:hot_face: but, sometimes - and especially after I’ve tried to evacuate my bowels for some reason - I become extremely cold and shivery.:cold_face:
‘Hyperthermia’ and tremors (particularly in my hands) often portent a ‘crash’; this means I will literally crash either onto my back or my right side, and I will remain like that for anything up to three hours. I literally can’t move, I become temporarily paralysed). When I attempt to sit up, it feels like there’s a massive weight pushing down on me and I have to lie back down until it passes.
It’s also an indicator that I need to eat; and I am constantly hungry because the ‘meals’ I’m given are barely more than snacks (I’d post photos, but the connection here’s so flaky, they’d not upload).
Joint pain
Incontinence :sweat_drops: (including stress incontinence)
Difficulty in evacuating bowels (but I am passing a lot of very noxious gas). Due to this I have an extremely swollen and distended abdomen.
Extreme pruritus (to the point my skin tears)
Psoriasis on hands
Lightheadedness/dizziness :face_with_spiral_eyes::dizzy_face:
Severe tinnitus
Often struggle to speak (slurred speech, muddled words, feels like I’ve a very ’thick’ tongue which is occupying my entire mouth making speaking difficult - and singing :notes: impossible):speaking_head:
Depression (I have NEVER felt like this before. EVER):dotted_line_face::sob:

There’s supposed to be an ‘autism liaison team’ here - I’m sure you can guess how many on aforementioned team are Autistic. I have sent them email after email after email, BEGGING for support, BEGGING them to do something about the noise so that I might have a chance of discussing my symptoms with a doctor. They have ignored every single email i’ve ever sent, even the one which detailed my symptoms (which included a photo of my eye).

In sheer desperation, I invented an alter ego, Claire; I gave her a ProtonMail address and made her Scottish (no idea why, probably because the rules are different in Scotland). I’m good at writing in the third person and pretending to be someone I’m not, So ‘Claire’ made contact with Charlotte, the ALT lead. She told her that Sarah was suffering due to the level of noise and that something needed to be done about it urgently in order to enable her to talk to a doctor. Tumbleweed.

I’m rapidly approaching middle-age and I’ve NEVER been allowed to live; never had any chance to do what I want to do, never been allowed to work, or live basically. It’s hard to do anything when you’re having to constantly pretend to be someone - something - you’re not. That’s exhausting in itself.

Then the ALT informed me (ie Sarah) that they were intending to dump me in a flat with 24/7 live-in support. I’m sure you can imagine how that made me feel. So Claire sent Charlotte my symptoms (again!) and pleaded with her to get back to my umpteenth social worker and explain to her why that was the least suitable thing possible. According to staff here my autism is ‘mild’ (:roll_eyes:).

Autism IS NOT a learning disability.
It is not a linear spectrum
There are no such things as:

Mild autism
Severe autism
High-functioning autism
Low-functioning autism.

Like I told them, you’re either Autistic -or you’re not.

(You’ll note I’ve not mentioned Asperger’s. That was a euphemism for ‘high-functioning’. The reason it’s not used as a diagnosis any more is because it’s problematic; y’see Hans Asperger, whilst not a member of the Nazi Party, was Nazi-adjacent. He had many friends and contacts within the Party, and he used to provide children to them for medical experimentation. Lorna Wing claimed she knew nothing of HA’s Nazi connections when she coined the term. Many - including me - find that very hard to believe)

More needs to be made, I think, especially when you’re dealing with kids that Einstein was Autistic. I believe that Autistic kids - especially those without any form of co-morbid LD - feel they’re stupid just because they’re different. That was Albert too. He was the original Autistiche Wunderkind.

Think of the Autistic spectrum like a colour wheel (one thing I really appreciate about macOS, the native colour tools). Imagine it divided up into 6 segments:,

:red_circle:Language and communication
:orange_circle:Motor skills
:yellow_circle:Cognition and learning
:large_blue_circle:Executive function

Then imagine each segment going from light to dark. The more forwards the darker ‘end’ you are, the more difficult you find that trait. Some Autistics also have dyspraxia, so their ‘motor skills’ segment will be very dark. Some are also dyslexic, which means they struggle with language. But many are affected by external factors; for example, I have no problems with verbal communication, provided the environment is quiet and I’m not having to deal with lots of people. My yellow and purple segments are always light. My blue segment is another which varies by how tired and ill I am. I have severe tinnitus and I struggle with things like noise and touch, so my green segment is often dark, but if adjustments are made, then I have less problems. The problem is people aren’t willing to make adjustments; eg here, just like there was in the care home, there’s a patient who is constantly slamming their door. I can’t cope with that. I have repeatedly requested that staff ensure she doesn’t slam her door, but I was basically told I would have to “get used to it”. They’re expecting ME to make the adjustments which is not fair - and it’s not up to me. I know my rights, and the Equality Act puts the onus on the hospital to ensure that I’m able to access care just like everyone else.

I’m exhausted from fighting; I need someone to assist me in accessing care before it’s too late; I’m overheating more often and for longer periods and I’m becoming extremely fatigued and sleepy. Not too bad today, hence being able to write this, but yesterday I was in a semi-comatose state all day.

I think the connection’s going to die again, so I’ll have to just post this, Sorry if it doesn’t make much sense. SEVERE brain fog.

I have to get help ASAP.

Thank you