Viewing 3 posts - 1 through 3 (of 3 total)
  • #184380
    Struggling

    Hi everyone,I’m really struggling at the moment.i have an undiagnosed muscle wasting disease which has left me with breathing difficulties so I have to use a bipap machine at night.i also am in heart failure and have a pacemaker.my boyfriend was diagnosed with esophageal cancer a month after I came home from hospital in 2018 and spent the beginning of 2019 in hospital himself after a major operation..I know aren’t we having a good time..my problem is I’m so frustrated all the time with what I can and can’t do and what I should and shouldn’t do.im always worn out and heavy breathing,I’m terrified of dying everytime I get a pain and I feel like my boyfriend and I are just carer and client even though he assures me it isn’t like that.i feel so guilty I have to rely on him so much when he has his own recuperating to do..please advise xx

    Net net
    Participant
    Posts: 0
    Joined: 17/12/2019
    #184417
    Reply To: Struggling

    I would simply say that you are exceedingly lucky to have the love of a supportive partner. I separated form my wife at the end of 2008, and struggle with the knowledge I am destined to be alone for the rest of my life. (Unless disabled dating becomes á la mode)

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #184465
    Reply To: Struggling

    Hi there,
    Don’t feel guilty for relying on your boyfriend, you are struggling right now and need the care and support.
    If you want to talk to our Care and Support team about care options for the future if you need them, or anything else that might make your current situation easier, do call them on 0800 652 6352 or email info@musculardystrophyuk.org.
    I hope you get a full diagnosis soon.
    Emma

    Online Manager, MDUK
    Looking to get more involved with the MD community

    Emma Smith-Bodie Emma Smith-Bodie
    Participant
    Posts: 0
    Joined: 30/07/2018
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