Sunday, June 22, 2008

MS Napping

Apparently I’m not as “back to normal” as I’d hoped. I know I still have symptoms, but am considering them to be residual, and really do expect them to improve. I still have some numbness, but remember experiencing that for several months after the major attack I had when I was first diagnosed with MS. I have to use my cane for balance still, but I know I used that through the summer after that first attack, then didn’t have to use it the majority of the time. I also still have some difficulty controlling my hands, which again I remember continuing through the summer in 2006 as well—I even cut my hair short that time to make it easier to manage (though that backfired on me, because the shorter hair wound up needing more curling iron and brush action than the longer hair!)
Compared to a few weeks ago, I have improved so much it makes me feel back to normal. I was able to drive again and was able to return to work. I am even able to shower without the need for any help, thanks to a handheld shower and bench provided by my supportive family. Unfortunately, that means it’s very easy to overdo it.
Yesterday was an example of overdoing it. I spent the morning watching the matches on the last day of my almost-8-year-old’s soccer camp. It was overcast, and not as warm, for which I was quite thankful, but it still took energy. I got a haircut in the afternoon, and then had a date with HoneyBear in the evening, so I didn’t take much time to rest. The restaurant was a little warm to me, and I overheated toward the end of dinner. I hate the feeling it causes, a swamping sensation of fatigue that is immobilizing and makes it feel difficult to breathe. Getting back out to the car and blasting the air conditioning cooled me down, but by today it was time to get some rest.
For most, an afternoon or weekend nap is a luxury; for those with MS it’s a major part of managing the disease. With the boys spending the night at Grandma’s house, I was able to have the day to myself while hubby worked, and slept all morning. There’s something so special about my “MS nap”! I seem to sleep so much more deeply than during nighttime sleep. I do tend to wake up a bit groggy, but I tend to feel so much better overall, it’s wonderful! Maybe now I can really be back to my “new normal”!

Monday, June 16, 2008

Wing to Wing

I'm showing more improvement today--I am able to walk between wings of the building without needing the wheelchair! I did use the cane, but did not get shaky in the legs as I would have been even on Friday. Yesterday, in fact, I still was a bit shaky in the left leg when walking, so being able to walk further today without the shakes is big progress! Of course, my muscles haven't been required to walk much the last few weeks, and my thighs are reminding me of it! That's probably a good thing, though, because not only can I feel my thighs, but the soreness should help me continue to take it easy.

Saturday, June 14, 2008

Bye Bye Prednisone

Yesterday was the last day of my steroids! As much as I dislike the side effects, I can't deny how important they have been in getting me through the worst of this attack. I returned to relative independence within two weeks of the attack, which happens to be the average when using steroids. I'm still dealing with extreme fatigue, a tight band around my rib cage, and lingering numbness and pain. As far as limiting daily life, though, the biggest challenge I still have is walking any distance and lifting my legs, such as getting into the shower. I do vaguely remember that aspect taking much longer to get past after my big attack in 2006, so I'm staying hopeful that it may not be a permanent impairment.

I'm down to only a week of Capaxone left, so I had to contact the doctor today to decide whether I should order more. The decision has been definitely made to switch to Tysabri infusion based upon the severity of this attack. I will finish the Capaxone I have on hand, then allow 2 weeks for it to work out of my system before taking the plunge. I'll be going in next week to start the paperwork for the Tysabri. I'm hopeful that this will be a good way to manage my disease.

Friday, June 13, 2008

On the Road Again

After almost three weeks, I can now drive again! Though I still have some "random" numbness in my feet (especially the toes) and legs, and still up to my rib cage, I have enough sensation that I am becoming accustomed to working through the slight numbness. It's a big relief to be able to drive and be more independent.

I also am able to navigate for longer on the cane, rather than being forced to use the chair. I am glad to have the wheelchair at my school to make navigating to different sides of the building easier, but had no problem going from car to office, even pulling my laptop bag. Which is very good, because I'm already sore from the manual wheel chair! It's difficult to make a grip with my hands. I'm getting good about opening doors and pulling myself through in the chair, but my arms and shoulders are not in great shape for it and are SORE! I definitely need to work on upper body strength.

I did go overboard a bit today, though. I visited the other school I'll be working at next year to meet with the principal and the another tech specialist, and used only the cane. Touring the middle school wing and seeing my office meant walking further than I've been doing. Between the heat and prednisone (and not being able to keep my feet up), my feet have been swelling dramatically in the evenings this week, and after the walking the further distance my feet didn't want to work very well. I also did not sleep well last night; when hubby got up in the middle of the night it woke me up enough to not be able to go back to sleep. So after my school visit (and a brief bank errand), it was time for a nap in the recliner with my poor swollen feet up. I just hope I can sleep tonight!

Thursday, June 12, 2008

No More Weeble People

"Weebles wobble, but they don't fall down." This tagline for the Weeble People toys has fortunately been applicable to me the last few weeks--I'm wobbly, but haven't had any falls. The good news is that as of Wednesday my wobbles seem to be about gone! I was able to maneuver in the shower without bracing against the walls. I was able to walk down the hallway without grabbing for hand holds. Most importantly, the spinning and vertigo has decreased enough so I don't feel nauseous all the time, allowing me to walk in an almost straight line. I still don't know that I would pass a sobriety test, but I'm on my way!

Tuesday, June 3, 2008

About My MS Life

I am Laura. I am a Microsoft (MS) Certified Technology Specialist in a middle school (ms). I also have multiple sclerosis (MS), a disease affecting my nervous system. Welcome to my MS life.