I'm wide awake.

I keep thinking I should do this, start a journal so I can track the ups and down of my disease. I think it would be cool if I could look back and see when I lost the ability to do something and then when I gained it back. For example, I was really excited when I could get up out of a squat  a few weeks ago and I remembered back to Thanksgiving when I realized I couldn't do that anymore. I was really disappointed when I tried to take a bath, but couldn't get out easily back in February, but I tried again in April, May and June and it keeps getting easier.

So, basically, this is for me... not for anyone else, but if others read it, that's ok. For those, let's back up and explain this..

What is Polymyositis??

What I have is a muscle disease which affects the muscles closest to the core first and then keeps going from there. It's under the umbrella of an autoimmune disease, which means my immune system thinks my muscles are an illness and attacks them. Muscle weakness might take days, weeks, or months.

 

What does it mean for me??

When my disease is active, I have weakness in the muscles closest to the center of the body, like the abs, thighs, shoulders and upper arms. I have difficulty walking and am always afraid I'm going to fall, or randomly collapse like I did in January in the airport or in April at King Soopers. Then, if I do fall, it's quite hard to get back up, if not impossible without help. I cannot climb most stairs without using the railing. I still have a bit of a challenge getting up from when I'm sitting on the floor or in a low chair. I also get tired very easily.

 

Was it ever worse?

Yep! I couldn't get out of my bed by myself. Couldn't get off the toilet by myself. I'm pretty sure a snail could walk faster than me. Wheelchairs were my friend. I couldn't wash my own hair because my arms muscles were too weak to reach my hair. Thankfully, all of that was in 2008.

 

What medicines do I take?

Right now I take Prednisone and Azathioprine.

Pros (of the drugs)

• It seems to work. I get stronger and stronger all the time.

Cons

• Prednisone makes you gain weight like crazy
• Prednisone gives you insomnia.

 Does it hurt?

Oddly enough, most of the time, no. Unless I overdo it or forget to take my medicine.