Ok here goes, this is somewhat sick humor, but I just have too. With myosotis we all have pain, burning Intense pain, muscle spasms etc, well yesterday my x (I’m forced to live with him because I can’t afford to live on my own, other than disability I have no income, ugh, Im young enough but who wants someone with a chronic illness you can’t see). Anyway he starts groaning and moaning about a muscle spasm in his right thigh, he went on and on literally for 30 minutes about how bad it hurt, my response to him was, now you know how I feel everyday, he totally ignored me and continued to complain. People who don’t feel like we do have no idea, and it seems they don’t care.
So many times I get those looks, like oh there’s nothing wrong with you why are you on disability, your not sick. So for me, I suffer in silence, always. Seems my younger son who broke his back at age 19 is the only one who gets it. He too is on pain meds, because his t-11 vertebra is inoperable at this point.
Lol… this is very common. I cant walk much and i be in a wheelchair. Ive had chemo and nearly died. But some people have the ordasatity to sit and want sympathy from me about a weight gain or a tooth infection.
The best is when they have a chronic cough and they feel poorly because they smoke a 40 deck each day. Then for some bizzare reason they cant figure out why they have this cough. Tbh ive become so bitter now. I dont have sympathy for no1. Ive been seriously ill bed bound for 3years now… people stop giving a shit. But i dont blame them… i dont even want to be in my own company never mind asking others to be around me.
You just got to ignore them or if they are irrarating you… just say i hope it gets worse. Or do you want to swop places? Lol
no one can see our pain… we have invisiable injuires only we can feel them. But your not alone.
Iffy
You are so right…I really just wanted to look at him that night and say buck up buddy grow some balls and stop whining. You have a great day tho. We’re all here right with you. It’s nice to have someone in this cold cruel world who understands
If I could slap every person who’s said something similar or just insensitive, well…there’d be a lot of slapping going on. I’ll come slap them for you too!
Lol thanks Nichole, those of us with myo certainly know don’t we. Sometimes I get so frustrated with this disease crap. Before my mom passed 10 yrs ago she went out and bought a scooter, top of the line, I asked her why she was doing that as we knew she was terminal and really didn’t have a lot of time, her answer too me was, sweetie I’m not going to be here to take care of you, your going to need this, and I know you’ll not have the money to buy it for yourself. I still have it the batteries are shot, don’t have the 400.00 to buy batteries, but even tho I wasn’t diagnosised then, she knew I was sick too, and even as she was dying all she thought of was me.
Dear Wendy, I don't have a diagnosis and I've been suffering for some time--intense suffering for almost a year. During this time, most doctors I've seen, my friends, and my husband, all think that i have a mental illness because the doctors can't figure out what's wrong with me. The friends see that I am "fine" but have no idea of what I am going through. They congratulate me for "going out"--they think I simply suffer of depression. When I try to explain that I can barely stand on my feet and my legs feel like wood, they begin to tell me how tired they are. Every morning I wonder if I will be able to walk--I am terrified. Wendy, when you say you have "burning intense pain," can you explain where you have it and how long does it last? I am asking because I am trying to see if my symptoms correspond to this illness--since I have no diagnosis. In my case I have burning in many places of the body and they keep changing: sometimes it's the upper legs, other times the arms, most days I feel burning in the lower back. I also feel muscle pain in the upper legs and lower back. And another question, not just for you but for anyone else out there: has any of you tried acupuncture, and did it help?
No acupuncture for me, my insurance doesn’t cover it and when the only thing I have to live on is Ss disability, well I’m terribly limited as to what I can and cannot do. The pain I have most of the time and particularily when I stand more than I should, is from my low back to my toes. It’s horrible. I also have 2 blown shoulders, which doesn’t help either. The pain that I have comes from several sources tho. I’ve had a fusion l3-4,4-5& l5/s1 that has only partially fused, the other part failed, I have facet arthritis from my neck down to my tail bone, hip arthritis, knee arthritis, shoulders,and ankle arthritis. All of this arthritis has gotten drastically worse in the last yr as well. My rheumy feels that some of the pain is from fibromyalgia as well as the PM and the arthritis. It’s really hard most of the time to figure out where the pain starts tho, because my body hurts pretty much everywhere. I know what you mean about Drs family etc looking at you like your nuts tho, because I’ve dealt with chronic pain issues for years. Have you had lab work done, if so have they drawn a cpk on you? And if so was it elevated? Mine is chronically elevated, the pain is usually a lot worse the higher the numbers are. I think my last back surgery failed because of the undiagnosed autoimmune stuff. Since it’s now diagnosised, there’s probably not much else that can be done to help. I hope this helps, if not keep firing away with questions, I’ll do my best to help. Hang in there too, don’t get discouraged.