Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Meow...Hello Everyone,
I was reading some stuff about Polymyositis, and some of the patients who have it are still able to run and do yoga on the floor.
If I got on the floor, it would take 2 people to help me back up on my feet. When I hit the floor during a fall, it seems like a Gong goes off inside me (my nerves) and I suddenly feel like I weigh a Million Pounds. I avoid going down. I feel like I'm paralyzed when on the floor.
I can't climb a curb w/o having a sturdy banister. Always must use a ramp simply when walking. Going to gas stations is really hard...must find the ramp which is usually very far from the door. Since I have so much trouble with one curb, you can imagine me trying to climb into someone's home. If they have a small stair of 2-3 steps, I have to have a friend pull me up from the front, and a friend to push my butt upward from the back...and steady me so I don't lose my balance and fall backward. EMBARRASSING. Can't lift up either of my legs to climb up a simple sidewalk curb. They just won't work and feel like they weight a ton. Even if I could get up the curb, I'd probably fall like a toddler when on the sidewalk.
Must use my walker to maneuver around crowds. If anyone would bump into me, I'd go down like a ragdoll. Lord, I'm soooo weak, no matter the latest treatment.
Can't sit in most chairs w/o a big fluffy pillow that doesn't deflate when I sit on it. Need arms...no more folding chairs for me. And no more plastic outdoor chairs. Lots of outdoor chairs are dangerous now. I can get in, but forget trying to get out alone. Gotta have help to get back to a standing position. Thus, usually use my walker seat and that feels like sitting on solid wood after awhile. Feels like someone sits on top of me when I sit in chairs. Probably my back muscles on this one.
Makes me want to give up and stay home.
Socializing is sometimes a potential embarrassment. Most of my friends now understand a bit and want to help me be more social...they tell me I am missed at my former Bible study meetings and going to Luncheons. But most days, IT'S TOO DAMN HARD to deal with my limits. And I so don't want to be a burden to my friends. So again, I decline invitations and hear about the fun on a later telephone conversation. Gotta always watch my feet, even with the walker.
I just don't understand it. I am very weak, and my CPK is only around 400. I read about some patients having 12,000, and they can still walk w/o a walker. At 12,000 CPK, I'd need a wheelchair.
Now I'm ranting...sorry.
Does anyone else feel like sharing their experiences?
Gentle handshakes to all.
Purr.
I was reading some stuff about Polymyositis, and some of the patients who have it are still able to run and do yoga on the floor.
If I got on the floor, it would take 2 people to help me back up on my feet. When I hit the floor during a fall, it seems like a Gong goes off inside me (my nerves) and I suddenly feel like I weigh a Million Pounds. I avoid going down. I feel like I'm paralyzed when on the floor.
I can't climb a curb w/o having a sturdy banister. Always must use a ramp simply when walking. Going to gas stations is really hard...must find the ramp which is usually very far from the door. Since I have so much trouble with one curb, you can imagine me trying to climb into someone's home. If they have a small stair of 2-3 steps, I have to have a friend pull me up from the front, and a friend to push my butt upward from the back...and steady me so I don't lose my balance and fall backward. EMBARRASSING. Can't lift up either of my legs to climb up a simple sidewalk curb. They just won't work and feel like they weight a ton. Even if I could get up the curb, I'd probably fall like a toddler when on the sidewalk.
Must use my walker to maneuver around crowds. If anyone would bump into me, I'd go down like a ragdoll. Lord, I'm soooo weak, no matter the latest treatment.
Can't sit in most chairs w/o a big fluffy pillow that doesn't deflate when I sit on it. Need arms...no more folding chairs for me. And no more plastic outdoor chairs. Lots of outdoor chairs are dangerous now. I can get in, but forget trying to get out alone. Gotta have help to get back to a standing position. Thus, usually use my walker seat and that feels like sitting on solid wood after awhile. Feels like someone sits on top of me when I sit in chairs. Probably my back muscles on this one.
Makes me want to give up and stay home.
Socializing is sometimes a potential embarrassment. Most of my friends now understand a bit and want to help me be more social...they tell me I am missed at my former Bible study meetings and going to Luncheons. But most days, IT'S TOO DAMN HARD to deal with my limits. And I so don't want to be a burden to my friends. So again, I decline invitations and hear about the fun on a later telephone conversation. Gotta always watch my feet, even with the walker.
I just don't understand it. I am very weak, and my CPK is only around 400. I read about some patients having 12,000, and they can still walk w/o a walker. At 12,000 CPK, I'd need a wheelchair.
Now I'm ranting...sorry.
Does anyone else feel like sharing their experiences?
Gentle handshakes to all.
Purr.
Chairs. Yes a problem. I can always get down but I can't get up if they are too low. Chairs with wheels scare me to death. Seems new styles of furniture are too low for me to sit. So I don't or I find another seat. At friends houses, I often ask for a kitchen chair to sit on. At restaurants, I can't sit in a booth because it is too hard to get out.
Visiting friends is an issue. I am a member of a book club that meets at people's houses each month. There are several homes that are just not accessible for me so I don't go. Others, I ask if I can go through the garage because their front steps have no hand rail. I am learning to ask for help. But the planning can be exhausting.
People are really okay to help. They want to help and it is not a burden. I've asked total strangers to help me with a curb. I ask people to carry things for me because I can't. Last month, I bought a comforter and pillow for a twin bed and I just couldn't carry it out. Someone offered to help me carry it out and I took the help from that stranger.
It was really important to me to have "fall recovery". There was a period of time I could not get up without help but now I can but it is hard. I avoid the floor. If I have to get on the floor, I will scoot over to a couch or bed (or similar) and use that to help me up. Otherwise, I get on all 4s and use my arms and get up with my butt up in the air like a teepee.
I can't express how important it is to try to remain social. Having a disability can create lots of limits and make our world get very small. People really are happy to help. Set limits for yourself but also figure out some things you can do and invite people to do it with you. Movies are good. If you can, Invite people over for a pot luck so you don't have to cook it all (you are probably most comfortable in your own home). I have a list of restaurants that are easy for me. I invite people to meet me there. I've also found some craft places I can go. Like Color me Mine to paint pottery or there is a painting place, Paint Nite, that I can do too. I even took a Sushi Making class with friends that we sat the whole time so it was perfect.
A huge help for me was going to a Neuro Physical Therapist. She is the one that helped me with fall recovery and wiping my own butt. She helped me figure out how to keep my hands strong and strengthen my ankles. My goal was to be able to join a gym and do exercises there and she helped me accomplish that and worked out an easy program I can do there. It really made a huge difference for me and my muscles. At the TMA conference, several people used Aqua Therapy to help them get strength. That is another one to consider if possible. And if you want yoga, I've been told a good teacher will help you modify it so you can do it. Or there is even chair yoga. I just bought a DVD on seated yoga. I think the movement would be very good for me.
It is very easy to let Myositis ruin our lives. It is easy to be defined by our disease. But I am fighting tooth and nail to not let it do that to me yet.
1. I can get down on floor but don't as it is so difficult to get back up and for some reason I have back pain for 3 days after I do that.
2. Sitting in a car for more than half an hour causes pain in hips and back.
3. Some days chewing and talking is difficult
4. Have 1 favourite chair with high back support
5. I can walk without a walker but watch every step and avoid curbs where possible.
6. Pain is usually in ankles, wrists and back, shoulders and neck.
7. I don't go out much and prefer my own company as it is so easy to be in a situation that I cannot cope with.
Best wishes
Thanks, Everyone, for all your encouragement. I just needed to rant, as it all came crashing against me that day.
I learn a lot from all y'all. Please keep sharing, and I'll share whenever I can.
Purr.
BK :)