DWP and fitness

I don’t think people understand the effects of long term illness! It’s easy to dismiss them - most healthy people tend to have a basic 2-line comprehension of a particular illness according to a description they’ve heard or maybe personal experience- as in ‘the woman 2 doors down from my mum’s old neighbor has that and she manages to work!’

Real illness over time isn’t like that! The damage to the body and mind is is far less visible.

Sunday afternoon springs to mind. Bare in mind I haven’t been out socially for months now. Any way - I was prepared, I was feeling good, even had a little bit of make up to cover the cellulitis damage to my face earlier this year. All I had to do was walk get out of the car, straight into the Tennis club. Pride and practicality meant my stick was a better idea than a wheelchair - or so I thought! An old carer of mine was so shocked and upset to see me, she couldn’t started crying as she hugged me and I was so overwhelmed I went into my little rockabilly mode - shaking so violently I couldn’t even stand up on my own and, quite honestly, Mark Field should take note of how I was manoeuvred into the next room - my feet didn’t touch the ground but no hand touched my throat, chest or anywhere else that could be considered inappropriate- it was the elbows!Someone under each one!

If you look at the stage of kidney disease I’m in, it looks quite innocuous but if you include the effects this illness and the drugs have had on my body and brain for 50 years it’s a different story.

I tried to explain to explain to the Assessor how frightening Proso is and how mine now extends to objects and words but all she kept asking was when and where I was diagnosed with it. You don’t need a diagnosis- it’s not a medical condition- it just a neurological processing ‘disorder’ Or the way I explain it to people is that if we were all mobile phones, I would be a really rare make! I don’t run on the same apps as most people!

I don’t have facial recognition but my ‘phone’ still works.

My camera works but I can’t access those images again - I just remember that I’ve taken lots of pictures but can not view them - Aphantsia.

I have no google maps - topical and geographical aphasia.

My clock and calendar on my ‘phone’ aren’t accessible to view so I have no idea of day, date and the passage of time - not sure where this fits in!

My storage is full and I can’t download new apps from any old App Store- my whole life I’ve had to create my own little applets or getarounds - without memory you can no longer do this - SAMD

Then the age old problem - my battery won’t take a full charge anymore and runs out very quickly hence why I have to keep my ‘phone’ plugged in on charge and can’t venture from there for too far or too long! Fibromyalgia and Chronic fatigue Syndrome overlap!

Meanwhile I’m being assessed by a Nurse who apparently could diagnose wether I was malnourished just by sight! How wrong she was! This goes back to the SItz Baths and all the problems I’ve had with years of codeine and iron tablets and not eating a huge amount. Classic example would be Between Friday and yesterday I only ate a sandwich at the cream tea on Sunday and a nectarine - I have no food in the house and no means to get any. I don’t know who to ring to ask for help - hence why I am distracting myself now!

How can someone be in such a mess? Easy! You force them into unsuitable work then you take away their PIP because they are working- even if they aren’t coping. Then with less means that person is even less able to manage their condition. Eventually it all gets too much - and people like me have breakdowns in the work place! We make mistakes and cover them up - it inconveniences other people and costs time and money. Work becomes a hostile environment you can’t escape - apart from the obvious way. I was consumed with thoughts of diving off the second floor mezzanine onto the very expensive mosaic below or stepping out into traffic - a big lorry on a nice long stretch of road going so fast he wouldn’t even know he’d obliterated me! And it will all be over!

When you’ve had a painful disease all your life there’s no such thing as good days/ bad days - so what if on a good day I can walk the round my block - CBT and Physio both recommend and approve my target of including 3 x 20 mins of extra low impact activity every week as part of my Pacing. The assessor read that completely differently to the actual facts - I’ve been having CBT for 18 months just to sort out my daily living - washing, dressing and undressing, eating twice a day, taking all my pills and supplements, opening my mail/ emails and dealingwith it. Keeping track of the days/weeks and month for anchoring, using a list of coping techniques to stop me spiralling into depressive and obtrusive thoughts, remembering to keep my memory diary so when I see the Pysch I can give a comprehensive account of my problems - I’m an anxious crier for some reason - it always gets mistaken for depression or being pathetic - but then, I have other regressive behaviours probably related to the resurgence of my autism- I always was a Tinkerbelle - it didn’t matter until I was forced out into the big wide world and lost all my get arounds.

I’d be interested on here who would like to employ or if it’s even legal to employ me! How I can change my attitude from being so negative! How to behave in an interview? Do I tell people I was always a bit weird but now I’m b@tsh1t crazy!

To add further before I completely loose the use of coherent English - I was hyperlexic as a child, I had a Distinction in Oxbridge English, I had a a First class honours degree in Modern languages despite having had no formal schooling , I used to speak latin with my father for fun, I was fluent in 3 languages but could pick up a good smattering of any language where ever we lived and worked - I'm a Wordy Aspie ! Yet I'm not even fluent in my first language. I've had lots of trouble on here understanding the meaning and tone of posts. For someone who has always been a reserach assisstant,prrof reader and archivist I can't even recognise the Dewey decimal system any more! I have to painstakinly recognise each character then try and string it together into something comprhendable then I have to try and convert that into which section of the Library we;re taking about! Imagine having to go through the entire alphabet to recognise the letters in a word - it painstakingly hard and tiring - and confusing!

Someone please tell me how I can ever be employable - and prehaps shed a little light onto why it's so important to force me back to work! How long do you think I'd last - an hour, a week, a month before another meltdown? I'm of no benefit to anyone - it just feels mealy mouthed and nasty to assume that work is good for me or I'm good for work. Anyone want my illness and mental health problems - cos I don't! Does anyone really think this type of benefit claimant is making a life choice? Or that we deserve to be put under such srutiny all the time? Or that we should have to defend the small amount of money we get?

Mine was picked up aged 3.5 - I was a selectively Mute until I was nearly 2!