Saturday, June 11, 2011

Reflections on a year

It's amazing to me - a year without MS attacks. When I have an MS attack, my legs collapse - I hit the floor - I'm totally exhausted. When I go on steroids I get a rush - then I get angry - it's a roller coaster ride. But now it's been a year without this. And a year without the roller coaster ride of steroids - I am grateful. It's because I'm on Ampyra - nothing else makes sense. I used to have attacks every 5 to 6 months. Given the stress I've had at different points during the last year, I should have had several attacks. I've had "off" days.

And what else? I haven't been really sick for a year. My husband got a horrendous cold. I got a very small version of it where I felt like sneezing and perhaps sneezed a few more times than I usually would. I did recently get laryngitis and a small "bug" with it, but it didn't last as long as it did for others.

I haven't had attacks, and I have improved. What is still hard for me to see things that are easy for others, but are still difficult or impossible for me, even though I have come so far. It's "functional" stuff - opening doors with ease, without a walker getting in the way. I can sit straight, I can write with a regular pen, I can walk further and faster. Many things are not apparent to others - takes me about half the time to get ready in the morning. Heat still kills me; humidity is even worse - learned this when I visited Ohio recently.

So many people have helped me along this journey. People will say "you are walking faster" and I don't know whether they are saying it to make me feel good, or they really mean it. So I go time myself, and I am walking faster. Just this morning I was sure I had slowed, so I timed myself and I was a bit faster again.

My friends at work who have helped me kick up my legs while sitting (one of my exercises) and have added some leg massage with it have helped. They sometimes need to show me how far I have come. The same people raise the handles of my walker as I improve. It's a small few group of people, but they have helped the journey. I don't tend to name people in this blog, but they may read this and know who they are. Thank you!

I added physical therapy (PT) and was lucky to get an awesome PT. She knows I push myself and she will push me. Some days I show up for PT and I'm mentally exhausted. I just want to give in - throw in the towel. But she, the PT, doesn't let me. She doesn't let me off easy either - she pushes me. She shows me I am still doing well, that I am still getting better. She gives me motivation to keep working over the next week and often it's likely I'll get through the week, but return in the same mentally exhausted state, ready to throw in the towel on everything. She continues to push - she doesn't let me get away with throwing in the towel. When the gait machine is broken, I think I am off the hook, but she finds something else to challenge me, and it's never easy.

So, this past year - one of amazement. 21 years of MS is a lot to reverse. Significant progress made. Those who knew me as a runner would not think I look so good, but I look better. When I doubt, I go prove myself. I'll decide my legs aren't working, but then I almost talk to them - think of them working - and they work. Funny how this works - how many people wonder if their legs will work when they stand? If they did wonder, then they wouldn't have to concentrate on their legs when standing to force their mind to make the connection. My mom even comes with me to the track and has an apple for me, at the ready, as a midway snack through a lap. Yes, one stop now when I walk around the track - down from 6 stops in October. 60 minutes for that lap in October; 32 minutes in May.

I'm so lucky - I have supportive friends and family. Part of this is the church community - there are people there who have pulled me through some of the stress. Ampyra pulls me through, too. I'm ready to stop, but then I take a pill, I feel it kick in, and I am off.

And I'm still slow. People still have to wait for me. But I'm moving more. And I'm thankful to the people who wait, who don't tell me I should stop or that using my wheelchair might still be easier, and using my wheelchair would be faster. I'm thankful to the people who realize it's not about me taking things easier - it's about me pushing, and seeing how hard I can push.

Thanks be to God, for all the good of the past year, for being there through the incredible stress and frustration I have had to keep to myself (mostly, and I haven't wanted to let God into it either), and for being there while I push, push, push - others push - others complement. Thanks be to God. I am loved.



geezerman said...

You are loved by those you don't know, and who only know you thru your blog.

Clare said...

Thanks be to God indeed :)

You sound so positive :)

ms'er faith said...

And I am so happy to know I am loved, even by those who I don't know. Thank you.