What's the biggest hurdle you have with your disability (ies)

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  1. Sparky25
    Sparky25
    Hi there
    I suffer from server chronic pain which for past year I have been very ill.... My main hurdle which I have had to come to real terms with is the day to day looking after my to amazing children I have really struggled And I feel like I am really failing
  2. FindingHome
    FindingHome
    I have degenerative arthritis of my lumbar spine. Most of my lower spine is affected. Some days are a little better than others, but no one understands that sometimes I literally CAN'T bend. Sometimes my right leg will fall out beneath me as the nerve is squished and will just...be agonizingly painful. The hardest part of my disability is realizing I'm only 27. I might not be able to have anymore children; I risk paralyzing myself during the pregnancy or at least suffering more nerve pinching...which will lead to possible nerve damage and finally spinal surgery. Playing with my seven year old can be touch and go depending on the day. And if it's raining? I'm not getting up without at least four Aleve. And it's only going to get worse as I get older.
  3. weepingwillow
    weepingwillow
    Can relate FindingHome. I have a slew of physical issues and any of them I was born with, so have had trouble pretty much since I was 10 or 12. I'm about to be 36 and I still get crap about it because I'm so young and people just don't believe me a lot of the time. I have joints that aren't straight-like one hip is twisted forward at the pelvis and the other one isn't. Because of that one leg is longer than the other slightly more than is average, and it effects my sciatic nerves. I have issues top to bottom really. Bunions, plantar fasciitis, and flat arches in my feet. Ankles, knees, and hips are bad partially because they've been weakened by the problems with my feet. Degenerative disc disease in the lumbar region (possibly stenosis as well as a few other issues, can't get doctor to really look into it...getting new doctor ) While I don't have scoliosis the bone structure issues have my bottom half twisted slightly one way and the top half the other way. Meets right at my mid back, so have trouble there. My upper back and neck are a mess of degenerative DD, stenosis, bone spurs, and spondylosis. My shoulder sockets are loose so my shoulders slide partially out of socket and between my neck, shoulders, and the tmj I've developed from grinding my teeth I deal with frequent migraines.

    Something hurts every day. May not be the same thing two days in a row, or some days it's everything. Because of that inconsistency (just like someone mentioned before), and my age, some people think I'm faking. Like many people with chronic pain issues I just do what I have to do if I can push through it because if I didn't do anything when I was hurting I'd never get out of bed. Some things are much harder for me than for others, which I'm sure you know all about.

    So between the people not believing me, and trying to do everything on my own, it's frustrating. On top of that I know that some of these issues don't usually start until someone is in their 50s, so I feel cheated. I never got to be young and healthy exactly, have had to account for bad pain days and limbs randomly not functioning since at least high school. Missed out on some stuff entirely, and really struggled through gym class.

    I have done some things regardless - took dance classes for example, which horrified my doctor. Played volleyball (poorly, not my thing I learned), marched color guard in a high school marching band and then in a drum corps this past year. Unfortunately I won't be able to do that again most likely, I did some permanent damage to my knee, ankle, and neck. It's horrible to learn that you just physically cannot do something you love. Which is actually another thing, activities are more dangerous for me sometimes than for others. There is also the lost time with my daughter. Times when I couldn't play, or pick her up.

    That doesn't even include the mh stuff, some of which is also very debilitating. I guess I can't pick just one thing. Maybe the biggest hurdle is that there is always a hurdle. There are no easy days with chronic illnesses. Easier days, less painful days, yes, but there is still pain and there is still a bit of struggle to get things done.

    Wow, babbled. for everyone, sorry that you are all dealing with these things as well.
  4. FindingHome
    FindingHome
    Surprisingly, that helped to read. I also feel really cheated. Most of these issues started in high school (the odd and sudden falls), but were laughed off as 'teenage drama'. It wasn't until I was leaving the military and getting all the necessary xrays and such that they found out all my problems weren't fake; I actually had DA. At that point, with all the heavy lifting (I was aviation ordnance; it was literally my job to lift heavy missiles and such onto plane wings), my lumbar was toast. I used to be incredibly angry at my childhood doctor, but you are right....these issues are supposed to start in the 50's. A doctor isn't going to look for a zebra in a herd of horses.

    I also suffer from knee issues. My left knee is weak from an injury from the military. It pops like mad, and gets really stiff sometimes. Gentle heat and ice can sometimes do the trick, but the best is a brace. This also comes and goes, which of course looks like it's not actually an issue.

    TMJ is the absolute worst! I think I'd take my DA over it if given a choice. My upper jaw is smaller than my lower jaw. We were poor growing up, so getting the spacer wasn't an option and now isn't an option unless I want to pay out of pocket. Not even my private insurance company, which is actually pretty good, will do anything to fix this problem. And all I need is a spacer (I think it actually has another name, but I can't remember it at the moment) to widen my upper jaw! I just don't have five grand to drop on the visits and the equipment. But my jaw will refuse to open at times. Just refuse. I won't be able to yawn without incredible pain, and of course that always makes me want to yawn more. And then there will be days when I can't get my jaw to fully close. Eating becomes problematic, as trying to get my teeth to touch to chew makes me cry out in pain. When it pops, I usually drop to the ground....it's horrible. The migraines the TMJ produces are intense as well, and usually I end up in the ER.

    I agree that, even though the feeling cheated part is bad, the way people treat you is worse. I look younger than my age too, which is both a blessing and a curse. I got carded recently while trying to adopt a rat at the Humane Society; they just didn't believe I was over the age of eighteen. When I talk about my physical issues to anyone, even doctors, they practically laugh in my face and tell me to take Aleve. I do, as I'm not really a fan of anything stronger because of their other effects, but really? Laughing at me? My new doctor, she's amazing; when she saw my xrays, she immediately understood and has been trying to help me in any way she can. There isn't anything you can do really, but at least she didn't laugh at me.

    Thankfully, my daughter is starting to understand that I really do want to play with her, but just can't on some days. She'll put her hand on my back when I tell her it hurts and rubs it. She puts me in a good mood. When I can't get on the floor with her, she'll drag over the coffee table and we'll play board games or draw...she's really quite the sweetheart. She used to get so upset and so angry, which would upset me of course, but now that she's seven, I think she understands it better. She'll forget, of course, and try jumping on me....that's not pleasant at all, but for the most part, she remembers lol.

    Thank you all for sharing your stories as well. I didn't realize just how much my pain was affecting me emotionally until I started writing out what I suffer from. I've always been the one to just get up and do, no matter what, and don't think about it until later. I'm glad I joined the group. I now have something else to talk about in T.
  5. weepingwillow
    weepingwillow
    My foot issues were correctable when I was a child, but the doctors would not take my mom seriously. She still feels bad, says that she should have pushed harder, but how many times are you going to push when the doctor says it's not a problem? Try to tell her that it's not her, but the doctor she should be angry at. She did her part, he failed on his end.

    When I started having severe back pain in middle school they actually diagnosed me with growing pains. I always thought that was just a phrase, but apparently it's really a dx. Sometimes kids will grow uneven, skeletal structure on one side will grow faster than the other and this can cause a lot of pain. Thing is, with my family history, they should have actually checked instead of just brushing it off.

    I understand about your daughter, too. When they're really small they just have no way to comprehend what's going on. As my daughter got older she used to do things like pat my back and stuff too. When she was staying with my mom while I was at work she used to get her all sorts of stuff. (My mom has many of the same issues, and being older of course has deteriorated further.) She'd bring her stuff from the fridge and occasionally favorite toys of hers so "Nana will not get so boreded".
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