Many disabled users?

Discussion in 'Community Discussion' started by elf69, Feb 16, 2017.

  1. elf69 macrumors 68000

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #1
    I am disabled and suffer from a progressive condition.

    I suffer from CMT (Charcot-Marie-Tooth disease)

    CMT is a genetic condition that damages peripheral nerves. These nerves are responsible for passing on commands from the brain to the muscles (motor nerves) and for passing information to the brain about sensations, such as pain, heat, cold, touch, importantly for balance – where your joints are in space (sensory nerves). When these are damaged, people are said to have a neuropathy.

    Because of this nerve damage, people with CMT may find that some of their muscles become slowly weaker over the years, particularly in their feet and hands. Some find that feeling becomes duller, or numb, in the same areas.

    In the UK, around 25,000 people are thought to have CMT, making it the most common inherited neurological condition.

    I have lost the use of everything below the knees and wear leg supports to walk.
    I have lost use of my thumbs and my hands are getting worse.
    I also have a small heart too.

    But I'm doing ok, at 15 was told by 20 be in wheel chair.
    Im 33 next week and still walking.

    My balance is getting worse though.

    I am also hyper sensitive to cold and cannot sense heat properly.

    I did write an article about my condition for a support group but quite long so will not post here.
    Do not want bore you all.

    Do other members have problems they have to deal with?
     
  2. Plutonius macrumors 603

    Plutonius

    Joined:
    Feb 22, 2003
    Location:
    New Hampshire
    #2
    I'm sorry to hear about your condition and it sounds like you are doing the best you could with it. You have a real disability unlike many people claiming to be disabled nowadays (many on SSI disability).

    Everyone has both physical and mental problems that they occasionally have to deal with. They all affect quality of life but most aren't disabilities.
     
  3. elf69 thread starter macrumors 68000

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #3
    I do not claim much disability.
    They give me £80 a month only due to my hot and cold sensation issues.
    As you can imagine it makes cooking hazardous.

    I learn to adapt to keep going.
    My own Dr told me to stop adapting and I can claim all sorts.

    Thing is A) I dont want give up. and B) there are plenty worse than me.
    If I claim it and not need it I am only taking from someone who does need it.

    I still work a 9 to 5!
     
  4. Septembersrain, Feb 16, 2017
    Last edited: Feb 16, 2017

    Septembersrain Contributor

    Septembersrain

    Joined:
    Dec 14, 2013
    Location:
    Texas
    #4
    I have POTs. Postural Orthostatic Tachycardia syndrome. It causes me to have a high heart rate, pass out, experience angina, and a couple other unpleasant side effects like exercise intolerance.

    I've also got fibromyalgia as well. My body temperature doesn't regulate properly at all. I'm either hot or cold, I don't think I've been "comfortable" in years honestly. I'm always in pain, no matter what. Very few things relieve it. Thankfully one thing does, it's my medication for...

    Anxiety. Alprazolam helps with the pain and anxiety. However I try not to take it often as I build tolerance easily to it.

    I'm insulin resistant, though thankfully the beta blocker Bystolic for my POTs helps keep my blood pressure in check.

    Bursitis in my shoulders and easily dislocated knees are a pain, literally. However I just try to deal the best I can with it.

    I'm glad to hear you're still walking! You've really defied the doctors predictions. I'd be really proud of myself. You're awesome. Just saying. =)

    Edit: I'm out of work temporarily but I intend to go back. I'm not on disability. They've put aside putting in a pacemaker so I think I'm getting closer to at least working part time to start!
     
  5. elf69 thread starter macrumors 68000

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #5
    Wow you got alot to deal with there too.

    I had a friend with M.E. and fibromyalgia.
    sadly few years ago she passed from septicemia at only 24 years old.

    I need get back on pushbike to keep my remaining leg muscles going but few years back was hit by a van while on my bike and not ridden since.
    It caused further damages to my hands which makes using the brakes uncomfortable.
     
  6. D.T. macrumors 604

    D.T.

    Joined:
    Sep 15, 2011
    Location:
    Vilano Beach, FL
    #6
    Just quoting this to say you are awesome. Keep the positive outlook!
     
  7. elf69 thread starter macrumors 68000

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #7
    Thanks D.T.

    to me though it is normal.

    outsiders says they don't think they cope how I have.

    I just learnt to cope, I don't have mindset to roll over and give up.
     
  8. Septembersrain Contributor

    Septembersrain

    Joined:
    Dec 14, 2013
    Location:
    Texas
    #8
    Septicemia is a nightmare. I had preeclampsia/Toxemia during my pregnancy. My son passed three months later. I'm sorry your friend passed so very young.

    Goodness. You've had a rough time of it huh? I've been in a few car accidents where I was the passenger, they think the concussion and 2 inch piece of glass that was in my head might of been the cause of fibro. Injuries really make any previous conditions worse.

    I have an elliptical I use when I'm feeling well enough. I still do household chores to keep myself standing and the passing out is not as frequent. I bet like me you think about the future a lot right?
     
  9. AlliFlowers Contributor

    AlliFlowers

    Joined:
    Jan 1, 2011
    Location:
    L.A. (Lower Alabama)
    #9
    @elf69 We have similar conditions and outlook. I have chemo-induced peripheral neuropathy. My oncologist recommended disability for me, but I just gave him a funny look. Although I cannot walk without a crutch, I do work full time. I wear open toed shoes all the time because any compression makes me swell, and increases the burning sensation. Meanwhile, it doesn't matter what the temperature is, because my toes can't sense the heat or cold. (Or ant bites!) It's not as severe in my hands (thank goodness!), but there are times that my fingers will go completely numb with no warning.

    It's all made me far less patient with people with minor problems who treat them like the world is coming to an end. Put on a smile and pull up your big girl panties - you're alive.
     
  10. elf69 thread starter macrumors 68000

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #10
    I agree very much about those who have minor issues and claim its end of world.

    I know someone who is faking back problems and claiming all sorts.

    blood boils over it!
     
  11. elf69 thread starter macrumors 68000

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #11

    Yes I do @Septembersrain
    Me and my fiancee wish to marry one day.

    My condition generally does not effect lifespan.
    But makes thing harder over time as it is progressive :(

    My strain is X related.
    If we have children my sons will escape it but all my daughters will be carriers.
    My mum is a carrier.
     
  12. AlliFlowers Contributor

    AlliFlowers

    Joined:
    Jan 1, 2011
    Location:
    L.A. (Lower Alabama)
    #12
    What kills me is people who take handicapped parking spots! I understand that you don't always see a handicap, but too many people take advantage.
     
  13. Septembersrain Contributor

    Septembersrain

    Joined:
    Dec 14, 2013
    Location:
    Texas
    #13
    I had a son. He passed at 3 months. I had toxemia during pregnancy. We both had to stay in the hospital a while. They wanted to do a C-section but he was too far down. Episiotomy, failed epidural, and far too long in labor. It really stays with me.

    I feel if I ever want children again, I'll adopt! I definitely will never give birth again. Besides, I'm sure there are many children out there who need homes. Plus I can skip diaper duty. Massive plus! Haha.

    I can't imagine how it would feel to try for children but fear that your child will potentially suffer a painful life like you have. I just wish you the best on whatever it is you decide.
     
  14. elf69 thread starter macrumors 68000

    elf69

    Joined:
    Jun 2, 2016
    Location:
    Cornwall UK
    #14
    me and my fiancee would like kids but after 5 years not happened so probably will not.

    We both actually like to care for other peoples children and actually like disabled kids, down syndrome etc.

    We have talked long about it.
     

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