A seemingly eternal “twilight” painsomniac, stinking in my pit, unbelievably sore, unable to move without sounding like a moaning old bitch, and sleep playing “Hide and Seek” with me like an Olympic champion; my mind started contemplating my up coming fight for benefits: The dreaded change over from Disability Living Allowance (DLA) to Personal Independent Payment PIP)… There is Math involved I have always hated doing sums…And the birds are tweeting already…FFS!
I was given an indefinite award for DLA – Wow!
That was such a relief for someone with a chronic illness… until the rug was pulled out from beneath me!
Now due to a changing of the goal posts, new hoops, trick questions and the Government redefining every sick and disabled person in the UK as no longer disabled enough to meet the newly formated criteria that once entitled them…
I now live in real FEAR of losing my Welfare benefits
– the poor pittance that I have scrapped by on for the last several years
The SICK JOKE is…
(See what I did there – the clever play on words!?)
My condition has deteriorated, my health is the worst it has ever been. I am more disabled and dependent on others for my care than at any time during my last 10 years with M.E. -and I face the distinct possibility of not being deemed
“ill” enough to qualify
Thank you to the Conservative voters, Daily Mail readers and Chanel 5 benefit-bashing aficionados: I really owe you one!
As if LIFE for people with chronic illness isn’t hard enough – We; the
97% genuine majority of claimants
are at the mercy of the “Tar with the same brush- I’m alright Jack – There but for the grace of God, brigade of bigoted, ill-informed “Have’s” who decide the level of suffering and degradation for the “Dirty unwashed-NOT worth the shit on their shoe, desperately needy “Have Not’s”
If my M.E. didn’t already make me a chronic insomniac – I would lose sleep over it!!!
In this information age, IGNORANCE is a lazy choice for those who are happy to still be spoon fed or programmed by the establishment!
I sound bitter and twisted, don’t I ?
I suppose I am, a little…
People don’t choose to be ill and survive off of benefits for the basics and necessities. They don’t choose not to work. They don’t choose what life has thrown at them. They just get on with it and deal with it as best they can.
It is not a CHOICE for millions of people – It’s the luck of the draw!
Anyway, I digress – Back to the Math that I didn’t want to do…
Part of the application for PIP involves quantifying the level of your illness/disability. You have to work out and approximate to the best of your knowledge how it affects your daily life-now and in the foreseeable future; especially so if you have a fluctuating/ unpredictable/ invisible illness such as
Your GP’s word is not relied upon – neither are your Consultants findings regarded as solid proof in this calculation.
A chronically ill/disabled person has to provide a mountain of evidence to even be considered for PIP – without it they can expect to score ZERO points.
For a claimant to be in with a hope of a chance of being awarded the level of benefits they are currently on with DLA when they are forced to change over to PIP (even with a present indefinite award) they need to provide reams and reams of extra evidence: Care Plans, Medication and Therapy regimes, Daily Health Diaries, Professional Assessments. Supporting witness statements from care-worker’s, family and friends.
They even have to watch their activity levels on Social Media as that will count against them…
Apparently chronically sick people are not deemed ill if they use the internet.
The DWP have access to that and your bank accounts – and can request access to your utility bills and passport without your say so – And track your movements, holidays and spending via GPS applications in your Smart phones etc… Tribunals have already been lost because
I have gone off on one again – SORRY folks!
…In order to quantify for DWP calculations, one has to do percentages If something affects you for less than 50% of the time then you shit-out big time! No matter its overall impact on your health, ability to work or your quality of life!
I have to sum up my independent ability to do set DWP activities on a daily basis, over the space of a typical week, day and night. 24/7, 365…
Thank god they don’t want a pie chart…I cant do Excel!???
I did the Math homework…
I have 3.5 ( you do the fudging percentages) days, on average per week that I would class my illness/condition/ability as
BAD or “worse” days
– were I am (pretty much) stuck in bed
I have 3 days that I class as BETTER days
on average per wk when I am housebound, unless my hubby takes me out in my wheelchair, which he has to push as I no longer well enough to self-propel
And I have 0.5 days a week (2 and a diddy bit a month) that I would class as
where I am able to go out and socialise for limited periods always accompanied for when I fall flat on my face for pushing my luck and my broken body beyond its capable limits!
“Dream on Love…
A leisurely life of “Duvet Days” and a permanent holiday from work must sound like heaven to those of you healthy sods with busy lives…
Oh, believe me…IT’S NOT!
It’s a mind numbingly boring, completely soul-destroying, bed sore inducing, daylight depriving, one-roomed-world existence – I wouldn’t call it LIVING exactly…
A “GOOD” day for me
would be the equivalent energy-wise of a lazy, low productivity, take it easy day for the normal healthy person…And frustratingly so– not a deliberate chillaxing day…And I would be completely drained, bone crushingly exhausted, experiencing severe pain and hobbling about – to the point of collapse by the end of it! But M.E. has taught me to…
In order to manage to have those good days, I have to rest up and reserve what little energy I have about a week before.
If I am lucky and my health permits…
I enjoy a day fuelled by desperate need, child-like enthusiasm and charged with a finite supply of adrenaline – bolstered by prescription pain killers, frequent rest periods, pacing techniques, emergency incontinence provisions, disability aids and the loving support of friends and family…
For a far too brief, almost stolen moment
I feel ALIVE
Like the old me… I have FUN! …and I am happy, feel blessed and truly grateful…
I turn into the puffed up, inflamed, pain riddled, unable to move or function M.E. Zombie monster who must take to her bed or DIE! This is what is known as in the chronically ill profession, as
Post Exertional Malaise
It is payback… and payback from a bitch on steroids who has a steam-roller, a baseball bat, a taser, poison darts, a flame thrower, thumb screws, and a sadistic sense of humour in their arsenal.
It’s like Kathy Bates from “Misery” has set upon me with her sledgehammer!
It takes me about a week to recover enough to TRY and manage another good day. Often the PEM bitch can have a hold on me for weeks on end while my immune system is busy attacking itself and my mitochondria struggle to work at level where I can function…
Sometimes it can feel like I am never going to have a good day ever again!
Back to the dreaded DWP Maths homework:
So, the last line of my Life Determining math equation is as follows…
If I get to live another 15 years until I am 65 (calculating in approximately 25 days per year classed as good and the remaining 340 a year as resting/recovering) then that =
Just over a year of GOOD days out of the next 15 years (375 days in total) for the rest of my life (if my illness doesn’t further deteriorate) to look forward to…
It leaves me COLD just thinking about it!
You have to sing this bit:
“IT’S THE FINAL COUNTDOWN! Da da, dadadada, da da dah!”
Are you depressed to F#%K yet- cause I know I am !???
Cheers you heartless – calculating bastards at the DWP for forcing me to quantify the facts of my mortal limitations and the future that awaits me… I was quite content deluding myself before the government saw fit to interfere…
I don’t feel sorry for myself – nor am I fishing for sympathy…AND I REALLY DON’T WANT your PITY- Thanx!
I am just having a little chat with the Universe, venting a bit of “Pissed-Off”steam and putting to bed a few anxieties, blogging away in the stupid hours when the real world is fast asleep.
If anything – I ask this…
(for everyone – not just blogging, Sick-Note, old me)
Sprinkle that stuff liberally like confetti
SO IF YOU SPOT ME OUT… daring to enjoy myself – possibly even laughing… looking far healthier than my illness normally allows and society thinks I should – Remember what it took to get me there!
And if you are find yourself lucky enough for me to choose to spend one of my remaining
375 GOOD DAYS
with YOU, know that …
I must love you very much indeed and you are extremely special and precious to me- More than you will ever know!
And for the rest of you Sleepdust Fairy blog following lovely people…
My sums add up to a Universal Truth
Time is precious
Make every second count!