These are all good points which I adhere to. I didn't want to become a wheelchair case so I acted. I take my meds. I get tested regularly. Physiotherapy is excellent to rebuild your muscles and acquire resistance. At the hospital, they gave me a series of daily exercises to perform. Don't overdo it though; it could worsen your situation. I also tried traditional Chinese medicine (herbs) for 3 months. I also see an osteopath (very helpful). I watch what I eat (but sometimes my eyes are not fast enough) and rarely consume alcohol. Stay positive and try to do some visualization where you see your own organism fighting with and for you.

I really try to pace myself too. I'm the type of person that likes to go all the time. I love hiking, moutain biking, etc. Now I just find ways to not stop what I'm doing, but to tone it down in a way that fits where I am right now.
Yoga really helps me with the muscle aches although sometimes it's hard to get up the energy.
I try to not use laying on the couch in front of the tv as relaxation, but actually focused relaxation like prayer/meditation.
I spend as much time as I can with my friends and family who are always there to make me laugh & take focus off myself for awhile.

I drink a lot and sleep around. Seriously, I just enjoy all the little things I used to take for granted. I never used to notice all the small things that make the world such a great place.

ha ha ha,too funny jmeelias! you seriously shocked me for a second. lol!
i know what you mean. the little things take on a whole new meaning. hope you're doing well!

Nice! If the "drinking lots" involves fruity, bevies around the pool at the spa, I'm all in!!

I found a great massage therapist who's a little out there and also does Raki. Still not really sure what that all involves (something with the power of mind and healing). All I know is that I always feel better after a massage by him. And I don't care if it's "real" or not, it helps MY head which is really the point in the 1st place.

Coincidently, he works at a spa with a heated outdoor pool...and they do serve "fruity" things by the pool......

You probably meant "Reiki" and not "raki" though this Turkish anise-flavored alcohol can also favor relaxation...

OOps, Yeah..sorry..Reiki.
Not really too much into the alternative medicines/therapies but hey, if it works for ya, who can argue??

My two beautiful teenagers that I wake up to each day. There are days when I am at my lowest point, but when I think about how much they need me, I rise up again!

I have also learned to except my limitations, and the weight gain. I used to sit around and cry about it, but not anymore. I am angry with this disease,
and I am going to give it one hell of fight!

JenkG, is weight gain part of myositis?

That's a good question. This has been a tough week, and these are the things that have helped me cope the last couple of days:

1. My faith in God and that He will bring me to the other side of this
2. The fact that I have people in my life who love me, even though they are kind of like stars... I don't always see them but I know they are there.
3. I've switched from Tramadol (Ultram) to Vicodin.
4. Finding support groups like this one, because when you are at home going through it alone for days on end, it's nice for someone to call and talk to you for few minutes... but that still leaves a whole day when you can't get out of the house to do anything and you are alone. Add in sleepless nights, pain and fatigue and the aloneness of it all starts to get to you, especially if you are a people person.
5. When I'm not taking pain pills, of course, I have a drink or two with a friend. I sleep better, it's a natural muscle relaxer, and I have my Dr's permission!

This is a great topic! Things I do to try and cope, as well as stay as functional (physically and mentally) as possible:
- Physical therapy - have not needed it for awhile, but it really helped me when I was at my weakest
- Acupuncture - have just started this for pain, not really sure if it helps yet
- Diet - minimal alcohol, sugar, processed foods, and maximizing fruit, veggies, and natural foods
- Sunscreen! The sun really exacerbates my rash
- Yoga - I love it for the stretching/strengthening, and it makes me feel good about my body again
- I have also just started seeing a therapist to help me cope constructively with the downs and uncertainties of this disease. I'm not really sure if it helps yet, but figured it was worth a shot!
- Enjoying the company of family and friends
- Taking pleasure in the small things that make each day beautiful (ok, that sounds really cheesy, but it's true! :)
- I've also found this website and all of your comments/posts helpful, so thank-you all!

I agree... Finding this website and a group of people who all understand what I am going through, the physical pain I'm talking about, the frustrating limitations, and th emotional ups and downs that come with dealing with a disease I didn't sign up for... It helps tremendously just knowing you all are out there.

I am not sure I am a pillar example but here is what I have done:

1-Figure out the best medication cocktail to keep the disease at bay. You can't fight it until it is managed.

2-Spent 8 months with a physical therapist that understood Polymyositis. She helped me learn exercises to do and how to do them so I don't overexhaust myself.

3 - Now I go to the gym 2-3 times a week and give it a good work out...at my handicap girl pace. :-)

4 - I try to live a normal life although it might need to be a bit modified.

5 - I rest when my body tells me I need it. Never underestimate the power of "spurting". This means stopping for 5-10 minutes when you first feel tired. It does wonders and keeps me from having to spend the day on the couch....although that does still happen from time to time.

6 - Spend time with those who love you.

7 - Stop and smell the roses. Pet the cat. Enjoy a favorite flavor. Really live in the present and don't let the disease take over who you are.

I am so glad I found this site. I need some help with coping still. :-)

The thing that perks me up the most is seeing my grandsons, especially the baby. I also love getting together with a bunch of friends and laugh. Once a month we have game night now thats fun.

Polymyositis was just the beginning of my nightmare. Next, was cancer of the endometrium. Later diag with prsoratic artheritis, Then to top everything off my husband died suddenly. I have faith in God, pace myself, seek help anyplace I can get it. Now, I am in limbo, living alone, not able to work anymore. I just take one day at a time, and hope to find a bit of happiness again.