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MdDS

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paeonygirl
paeonygirl Community member Posts: 4 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Anyone here with M.E. and or MdDS ? Just lost my job doing outwork from home and don’t know what to do. I used to be a qualified nurse but can’t work away from home because of the above, I also have an overactive bladder . I don’t know if I qualify for any benefits, I did used to get DLA but didn’t get PIP as I can do the physical stuff like getting dressed and washing etc in my own time but it’s my brain that feels’broken ‘ and that doesn’t seem to count! 
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  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
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    Hi paeonygirl, sorry to hear about your situation. 
    I have ME, Fibromyalgia and spinal problems. So I understand about "brain fog" and severe fatigue.
    It may be worth you applying for PIP again but seek advice from Action for ME or the ME Association first. I'm sure that they both have helplines. 
    Otherwise, keep looking out for work you could do from home, at your own pace. And make sure you get enough rest. Sorry I can't be of any more help. Take care. 
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
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    Welcome to the community @paeonygirl, so great to have you here. How are you doing today?

    We do have quite a few members with ME so you are certainly in good company. :)
    Scope

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  • paeonygirl
    paeonygirl Community member Posts: 4 Listener
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    Hi Oxonlady , thanks for your post and hope you are having a good day today. Not sure about PIP , the process was very traumatic don’t know if I can do that again ?. I was 2 points short so disabled but not quite enough!! Made to feel like a fraud , couldn’t get to tribunal as too ill so turned down . 
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community @paeonygirl I am sorry to hear you have lost your job did they give you a reason why ?

    It may be worth doing a benefits calculator to see if you would be entitled to any benefits, there is one on this site or on the gov website. It is hard for us to say if you would be entitled as it is down to your own circumstances.

    Have alook and get back to us if you need any help explaining any of the benefits or how to apply
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  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
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    Hi, can I ask what MdDS is please?

    The PIP assessment is so worrying and being turned down once doesn't fill you with confidence to try again.

    I know a little about ME.....do you have differing abilities on different days?

    I have Spinal PPMS and feel fatigued a lot of the time even though I sleep well.

    Take care, Pollyxx

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  • paeonygirl
    paeonygirl Community member Posts: 4 Listener
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    Hi Polly , MdDS is short for Mal de Debarquement Syndrome. It’s a neurological condition that usually starts after a period of motion such as a cruise or flight but can sometimes start spontaneously. It’s quite rare although it took 7 years for me to be diagnosed after several wrong things. It makes you feel like you are in constant motion when you aren’t, even lying down in bed . It’s like being on a boat in rough seas , I have cognitive issues, head pressure , am unsteady on my feet and lots of other things. The only time I get relief is when I am in passive motion such as in a car because that’s what my brain thinks is ‘normal’ . It’s exhausting especially with the M.E. too . It’s been constant for over 12 years now . 
      Hope that answers your questions, feel free to ask more , no one ever knows what it is , even Drs etc . 
    Thanks Polly for understanding about the PIP process ?
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  • paeonygirl
    paeonygirl Community member Posts: 4 Listener
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    Janer1967 , the outwork I do is going to be done by machines as from August and they have taken some agency workers on to do the stuff the machines can’t do that we have been doing at home . I’ve done it for 6 years, I could do it between the not so good times during the day , about 20 hours a week. 
    Thanks for your advice, I’ll look into the benefits calculator?
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