This is how we do

I've been think about things I've done recently that have been more successful than the last time I did the same thing. For example, last Monday I went to the zoo and walked for FOUR hours. It was many times easier than the last time I went to the zoo a couple of months ago. I didn't feel like I was slowing people down. I was able to keep up with the group. It felt good.

On July 10, we took a plane ride to Seattle for a wedding. The last time (January) I was at the airport I collapsed after getting off the airplane because my muscles were just done. There was just no strength left. So, I was a little nervous gearing up for this trip since my last airport experience was so terrible. This time was infinitely better. For one, I didn't collapse. I was also able to ride the escalators this time instead of having to hunt for a elevator each time I needed to change levels. That was nice! I was super impressed when I rode on the escalator with two rolling bags behind me! I did it though. 

I am able to bend over and pick up stuff off the floor without holding onto something now! I feel like I am in better control over my mood. Stairs are getting easier, but not quite to where I would like my skill level to be while doing them yet. I'm making progress, but still have room to grow.

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.