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.

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3 Comments

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

3 responses to “ME CFS Stress and Isolation

  1. Roy

    Couldnt agree more with your comments here about the stress of coping alone. Like you say, its bad enough just suffering with this wretched illness.. and you need others to “help”.. not create more difficulties/stress. Also, everyone automatically assumes you have a “carer” too, which really gets to me.. I rely on a weekly visit from the charity Mind, and thats it!!

    I do admire you for putting your energy into this blog tho.. Go for it.. I cant believe there isnt a support website out there for those who are alone and havent got carers etc..

    Hang in there.. RG

    • Thanks..I agree about carers etc. If I had a relationship, that person would naturally do more for me enabling me to do more & it would have been possible maybe to get DLA for example. But on our own, we do less & so there’s no one to make the case for us.

      It’s a very scary time right now. Sometimes, I’m really up for the fight, but at other times I have violent nightmares about DWP/ATOS & wake myself up screaming!

      Good luck to you too..all I can advise is keep a ‘diary’ of all relevant things & answer the questions YOU want to tell them rather than the inappropriate ones they ask..and add loads of extra good/bad day average day pages.

  2. Chrissie

    Quote: “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”

    Actually I’d say that applies to everyone! Maybe the friend that has let you down has other problems of their own. We SHOULD all be caring and symathetic to everyone we come across. None of us has more or less right to it than anyone else.

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