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  • #189747
    Possible benefits how will I survive

    Hi i am in the early stages of my MD journey, I have a possible form of MD however just awaiting which subtype I have.

    Physically my quadriceps are heavily wasted, my biceps also.

    My feet and calves hurt a lot so its spreading.

    I’m tired a lot, as muscke weak

    I am still working but physically it’s to hard, I don’t tell anyone as I will be sacked.

    I walk funny but say is a old back problem

    Basically In the not to far future I will loose my job because the effects of this illness.

    Some days I can’t walk more than 10 meters if I have over done it, others I could walk 1 mile slowly but in pain. When I’m to weak I just take the day off work and say I’m sick, car broke ect ect

    I am a full time single parent to 2 young children under 5 also.

    I am 40, I have paid my mortgage off so no housing costs.

    Once I loose my job I doubt I will be able to get another due to this illness

    What will life look like then.

    How will I survive financially

    Any single parents with MD here can say what I might be entitled to?

    Posts: 0
    Joined: 01/01/2020
    Reply To: Possible benefits how will I survive

    Joe the picture you paint is not an attractive one, and it is one that many of us have faced. You do not say who you work for, but , like everyone else, the will have a personnel manual which may tell you what your rights are should you become too ill to work. It may also be wise to talk to a union rep for advice. Some organisations have reasonably good packages for when you cannot work any longer, like the NHS for example. It may also be a good time to start looking for other opportunities, either different employment or even self employment as you may still have some lead in time before you no longer work. People on here will know I am a great supporter of physio for those of us with MD. It helped me keep going for a few years longer , and more recently helped me keep walking. I suspect you will have claimed PIP or DLA, and you should now begin to think about how your condition has changed since you did. If it is deteriorating as quickly as you indicate then this should be a priority for you. looking at the benefits that would become available should you not be able to work will give you an idea of how much money you may have available. I am sure others much more expert that I will be able to help you there. if you plan ahead now, as you appear to be starting, then, should the day come when you cannot work, much will be in place ready for you to carry on being a parent and provider.


    So many love songs, so little love.

    embayweather embayweather
    Posts: 8
    Joined: 02/11/2015
    Reply To: Possible benefits how will I survive

    I’m currently self employed in building sector on a long term contract in which they will drop me instantly if knew. No responsibility or commitment as I’m self employed.

    Posts: 0
    Joined: 01/01/2020
    Reply To: Possible benefits how will I survive

    I used to be scared of losing my job as a bus driver, but the fear was worse that the reality. Both ESA and PIP, along with having my rent paid, meant I was probably better off not working. I’ve been living like this for 11 years in December.

    Of course I understand that many people would take a big hit in the pocket and have to cut their cloth to suit, but thank the gods we still have a safety net in the UK (Despite the wishes of HMG!).

    Posts: 747
    Joined: 05/09/2010
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