Viewing 5 posts - 1 through 5 (of 5 total)
  • #177460
    How does everyone else do it?

    I have a diagnosed muscle disease via gene testing. I don’t think I am going to be entitled to pip as the condition is not bad enough. I work 4 days a week. I live alone. I am exhausted. I only have energy for work. Social life is gone. Chores have to slide until I can muster some energy. I am wondering how I can even keep on at 4 days but I won’t be able to survive.

    Cogniumnose
    Participant
    Posts: 0
    Joined: 26/04/2019
    #177499
    Reply To: How does everyone else do it?

    Hi and welcome to the forum

    Applying for PIP is stressful and it shouldn’t be. When completing the form take time with each question and think on terms of your worse day. MD is progressive and the you today wasnt the you this time last year or indeed this time next year. Have you unconsciously altered style or types of clothing. ie spending more time in PJs or loose gym clothing as its easier to get off or wash.

    with regards work. If you work 17 hours your are able to apply for tax credits which may help and open doors to other things regardless of your pip outcome. Tax credits and Access to Work Dept is worth looking into. Access to Work can help with taxi travel to work which might reduce fatigue.

    Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #187486
    Reply To: How does everyone else do it?

    I wouldn’t worry too much about work.

    Fact is you have muscular dystrophy, mine is discrete but I still get DLA (not yet transferred to pip).

    If you can get a muscular dystrophy nurse to come they would be able to help you. I was told I might not get PIP because my condition isn’t as obvious even though it has a massive effect on me, these pip assessors might not understand MD and might miss a lot of what will affect you. I was told if I don’t get PIP we would appeal it.

    It sounds like you need someone to speak to, your neurologist might be able to put you under the nurse.

    You still need energy to live, not just trying to survive at work.

    Mded89
    Participant
    Posts: 28
    Joined: 10/03/2014
    #187497
    Reply To: How does everyone else do it?

    I cannot support what has already been said strongly enough. It is extremely valuable information and advice. May I also add some to it please? Firstly, I was told when applying for mine, that you need to write your answers in the language these people are used to. Perhaps the CAB or a local disability help group can help there. You may also talk with your employer. They have a duty of care towards you and should consider your evolving condition and try and mitigate it as much as is reasonably possible. Perhaps different duties, or different work times may help.Do talk to them. If you are in a union seek their help and support as they will have specialist advisors than can support you. Also to re emphasise what has been said. Do not be a martyr, and think you can cope and manage. i did that and it gets you nowhere. Consider what the differences are between you as now, and you before you were affected. Be open and honest with yourself about what you can and cannot do without the aid of specialist equipment. It will take some thought, and above all, honesty to prepare the list. As Cat says, take time to complete the form, that time can make so much difference. When it asks about cooking for example. Can you cook a meal? Yup, heat kettle, open Pot noodle and pour. So eating no problem. Then think about preparing a proper meal with a balance of fibre, carbohydrates and protein. Different story.
    Finally, we are here to help as are the marvelous folk at the MDUK. Feel free to ask away.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #187743
    Reply To: How does everyone else do it?

    You should definitely apply for PIP. It will allow you to put support in place without you being out of pocket and means you want be as exhausted doing housework.

    Your health care team I’m sure would be happy to support your application.

    When completing the form base on your worse day ever with the condition!

    I have DLA as not changed over yet and use it to have someone do my ironing and for transport costs mainly.

    Good luck

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
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