Don't come here expecting to feel sorry for me - I don't.

I hope that sharing my progress and thoughts can offer some nugget of information or a point of view that can help anyone else struggling to come to terms with having MS, living with any form of MS or who lives with, supports or knows someone with it.

I’ve said before that I want to be really open about the stuff I’m dealing with, without it being the topic of discussion all the time. But, like I said when I posted on The Chronicles of Nani after my diagnosis, it’s not “why me?” it’s “why not me?” If there’s something I can do to make it easier for someone living with MS, or living with someone they love having MS, well, that’s why me!

If you or someone you know is affected by MS in any way or if you just seek to understand it, you are welcome here!

Wednesday, February 1, 2012

It Hurts Means It Takes Longer

Last September, before I started Gilenya, I’d developed a couple of new symptoms. The first one I experienced was the weirdest one. My tongue went numb. Imagine feeling like you have a coffee burn on your whole tongue and it feels that way all the time, in my case for a month. That’s one of the things that I’m happy to report stated gradually going away by the afternoon of my first dose of Gilenya and hasn’t bothered me at all since early December.

The other new symptom in September has calmed down, but it hasn’t gone away. When I sleep on my left side, I will get numbness in my left arm, but not total numbness. I get muscle spasms and awful cramping pain in my left hand. When I say awful pain, it’s wake me up whimpering and I can’t even put weight on the hand to balance myself to try to sit up. I do manage to sit up and the pain instantly starts to subside, but a dull pain and tingling remain for a while. For a few weeks last fall that was an every night occurrence. Thankfully, now it’s only a problem when I sleep on the left side and I’ve retrained myself to sleep on the right, which is not the normal comfortable side.

I’m bringing it up today because I’ve awakened in pain from it the last two mornings at about an hour shy of the minimum sleep I usually need. Obviously, I’m typing, so my left hand is better now, but there’s a twinge in my left shoulder. I think that could definitely be what set off the night pain in my left hand again. Well, that and yesterday morning when the pain woke me I was on my left side. Old habits die hard there.

I’ve been working on a major reorganization on the house. I want to do everything I can to make our 1950s house a kinder, gentler, more accessible home. That means I’ve been moving things around in boxes scooted on the floor, lots of reaching and I’ve even learned how to sweep and mop while sitting in a chair. That's more bending and reaching. It all increases what I’m asking my upper body to do. That includes my left shoulder and arm, ultimately the hand! I think the spasms in my hand coming back are a sign to slow down!

I started what I call the “White Tornado Project” knowing I have limits. The project is to make it easier to live in my own home within those limits, but it also tests my limits so I know what they are. I’ll take it a little easier today. And I deal with small delays in the project. If I accept that I need to slow down a little and realize what I can accomplish, I can still have everything I want.