Hi, my name is debzbox7! — Scope | Disability forum
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Hi, my name is debzbox7!

debzbox7 Member Posts: 4 Listener
Hi all.  Stay strong ?


  • debzbox7
    debzbox7 Member Posts: 4 Listener
    I've a couple of disabilities that people can't see and often don't believe but they're VERY real and EXTREMELY disabling.  My 1st is extra bendy bones known more commonly as being double-jointed, medically known as Hypermobility.  You'd think it'd make life easier, wouldn't you?  I can most definitely say, nope!!!  It's very painful, actually restricts movement and I often have days I daren't move at all through fear of the sheer agony it can create.  I struggle to understand how it affects me so badly.  With my manic depression it's a constant battle to excepting it/coping.  To make matters worse, I stopped growing at aged 10yrs which the docs say may have also contributed to my suffering Severe I.B.S. (Irritable Bowel Syndrome).  This is painful and life-haulting, let alone embarrashing; it causes bowel incontinence! ? I HATE IT!! I used to be able to work until after having my first child ? 13yrs ago when the incontinence became a major problem and I had to remain housebound for about 4yrs.  I had to fight to get out n about, before I chose to give up and end it all.  That was one heck of a fight to win back my leg muscles but once the GP told me I'd be in a wheelchair within a year, I had to do something.  I bought a bike ? 5 yrs on from gaining strength, I'm in constant pain but am up and about.  Always have to plan ahead and locate the nearest loo wherever I go.  I cycle everywhere cos I can't walk far; I cease up with crippling pains in my legs and spine.  I give people the impression there's nothing wrong cos I just keep hidden in suffering.  It's so hard dealing with the hurt society can throw my way.  Finding this forum, I'm hoping maybe I'll find others faced with the same torment of having to usually suffer in silence or be ridiculed as a lazy ***** out to play the system.  I miss my workdays but revel n being a Mum.  My problems do stand in my way of the Mum I want to be too.  It's all just SO hard...

    Nay, well. Always look on the bright side of life, eh.  I'm here to enjoy the ruff with the seldom smooth ?  The harder life innocently down, the more determined I am to face it full throttle! ?  I'm always gr8ful for life, especially my 2 wonderful boys ?
  • debzbox7
    debzbox7 Member Posts: 4 Listener
    Might as well have wrote a book, looking back at that lot! My apologies
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Hi @debzbox7 - & welcome to the community.
    Well I can relate to one of your problems as I have the hypermobile type of Ehlers-Danlos Syndrome + some neurological problems. It's great to read that you have overcome so much by regaining your mobility. It matters a lot doesn't it? I keep as active as I can, but it can be a daily struggle. My exercise is limited to my house & garden unfortunately, as I feel my neuropathic pain is  worse than that of my joints, which keep on going off in a different direction to the rest of me!
    Hope you will have a look around & join in any discussions. If you haven't seen it, go to the top of this page opposite your first post, & to the right you will see a link to 'All Groups' which shows you all the different sections on here.
  • Adrian_Scope
    Adrian_Scope Posts: 8,576 Scope online community team
    No need to apologise @debzbox7. Glad you were able to share. Please don't hesitate to jump in and get involved. You're very welcome here. :smile:
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