Tag Archives: MECFS

ESA WCA IB Incapacity Benefit Reassessment Diary for someone with MEcfs Starts Day 1 14 April 2012

(Day 1-5 wk 1 of ESA reassessment)

Sat 14 April 2012

-DWP letter about reassessment from Incapacity Benefit to ESA arrives.
(Belfast / Newcastle)

-Demands phone call.

-Quotes number over 12yr out of date.

-Ignores last IB50 that clearly stated calls not made /received due to self harm suicide risk due to distress/pressure of calls.


(Not due to see another human -unless I go to a shop- for 11 days.)

Slumped to floor on opening DWP IB ESA reassessment letter.


Chest pain.

Tears turn to hysterical choking sobbing.

Screaming shouting – desperately trying not to self harm.

Punching walls.

Can’t think clearly.

Realise last IB reassessment took EIGHT MONTHS (with no tribunal)
[19June-14Feb following year]

Today, DAY ONE is APRIL 14th 2012.
Unlikely this IB reassessment will be complete until 14th DEC 2012 .
If it has to go to Tribunal which is very likely as I have M.E. then it will
not end until mid JULY 2013. And by ATOS’ torturous standards, a new one will begin within weeks of that.

Trying to work out why I should put myself through this hell? This is no quality of life. I’m not *allowed* to participate in society on a good day as ATOS regards that as reason enough to deny me the benefits to which I am legally entitled.

If I had the courage /strength, it would be better all round to end it all now & cut short my distress and suffering. I’m erudite, intelligent, perhaps it would advance the political cause.

I do not know how much I can endure.

ACTION – Day 1

-Write ON letter they’ve made me suicidal/self harm risk.

-Point out Equality Act.

-Remind them last IB50 had clear info on not making / taking calls.

-Demand Subject Access Request.

-Unable to photocopy /post/return until Mon (shop closed-no ink to print)

DAY 2 -Effects
All day/night alone.
Sobbing. Hysterically upset. Hyperventilating.
Punching walls /self harming/ suicidal.
No energy.
No appetite.

Eventually had to email Samaritans

DAY 3 -Effects

All day/night alone.
Sobbing. Hysterically upset. Hyperventilating.
Punching walls /self harming/ suicidal.
No energy.
Had shower

Left home for 20min after 50hours housebound/bedbound.
Only ate after forcing myself to get small take away.

DAY 4 -Effects

All day/night alone.
Sobbing. Hysterically upset. Hyperventilating.
Punching walls /self harming/ suicidal.
No energy.

Left home 15min to go to shop in eve.

DAY 5 -Action

ESA preparation- very stressed.
Took 1hr writing just 3x note form paragraphs explaining the minutae of how I need to chop washing up/laundry/housework into tiny 5-10minute mini tasks – over many days.

How I do bare minimum so as to conserve energy & not cross invisible line.

How I need to list things such as *put pens away*…to chop tidying up into manageable bits. Often days/weeks ahead of a completion date.

ie Washing up isn’t simply washing up.

It’s put stuff that needs washing up in the bucket.- Kitchen sink has been blocked for around 2yr now. Need to investigate with camera when I get around to it.-
Put bucket in shower tray.
Fill with instant hot from shower /kettle. (Less wasteful than heating tankful & not using within 24-48hr before it cools)
Leave to soak.
Sometimes this bit is done several times before I actually see bottom of bucket as it’s knackering & I have to keep laying down between bits so I don’t *cross the line*.

I live in poor housing, that hasn’t been inspected since early Blair years. Blind eye by Env H.
I’m surrounded by black mould if I open my door.
I have no outdoor access.
I cannot escape the noise.

I’m surrounded by selfish pigs for neighbours. Despite reporting Flat13 (Liam) on 22Aug 2011,with 114 itemised incidents, Eastbourne Borough Council have not stopped him. I put myself at risk of eviction by daring to contact the Council.

I now live on a campbed in my kitchen and have done so (1st on the floor until Nov when I bought campbed) since July2011. Eastbourne Environmental Health are fully aware of this.

88 hours a week I’m subjected to thudding weights slamming into foundations/party walls from City Gym.

Constant thudding noise impacts mean that I can rarely rest/ sleep as & when I need to. This makes pacing (not over-doing it/holding energy in reserve-not over-drawing energy) impossible.

I rarely get TWO hours of unbroken sleep. I am frequently woken after less than TWENTY MINUTES.

The arrival of my DWP ESA IB resassessment letter today, has now created a perfect storm.

It is my intention to log on here every step. I hope this log does not prove to be the basis of my inquest. I hope I can find the strength to survive this brutal process and not become yet another ATOS ESA Suicide statistic. But I can’t promise.

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Filed under Cameron welfare reform, ESA, MECFS, WCA

ME CFS Stress and Isolation

a friend dismissed my requests that they read a few articles on the ME association website (Guardian Burnley report & Changes to ESA WCA Descriptors among them)[I’ll do links when I next get on net other than by phone]. They meant well but seem totally oblivious to the fact they have repeated the pattern of not being listened to & not being believed.

In reality I feel as if I have NO ONE to talk to, NO ONE to keep up to speed on my behalf. Feel totally isolated & alone.

The pains in my chest & up my neck have returned (had if for the entire EIGHT MONTHS that my last WCA Assessment took.) Upped the aspirin to be safe.

And the anxiety dreams have also returned. At worst they are about ATOS Med Assessment & are upsetting in the extreme.

At best they just involve being made homeless. It’s always about being disbelieveved & being pushed to total breakdown.

I often read of people with MS hailing that they” happen to have MS but don’t let it define them.”

I envy that they are allowed to get on with their lives & process their lost lives. The stark difference is that they have black & white test results they can wave in the faces of the disbelievers.

People with ME PWME MECFS in UK reliant on the benefits system do NOT have the luxury of ‘proof’. The constant vilification of us, the whispering campaigns seem purpose made to further isolate us & punish us for the failure of the medical profession to invest in biological research.

I’ve had enough.

The fact that under the previous assessment criteria someone along the line ‘believed’ us enough to award us IB is NO GUARANTEE whatever that we will qualify again. That’s what we want you to know. That’s why we ask you to read the FACTS about what is happening every day to people who like us, previously qualified under the old system.

We are exhausted from existing in limbo. We just want & need to know that you know. We need know that you are protecting us & that includes being heard.

Trust me, if you are a friend of someone with MECFS ~ each time you fail to listen, each time you forget to do something you said you would, each time you are ‘dismissive’ even accidentally, you are causing deep offence & hurt to someone you may profess to want to love & protect.


Filed under Cameron welfare reform, ESA, MECFS, PWME, WCA