Tuesday, January 19, 2010

One Week and Two Days Later...

It has been more than a week since my steroid regimen ended, and the improvement I have seen is phenomenal! I feel like I have finally climbed out of a giant, slippery hole, and I have Steroids to thank for helping me.

A few details (both for the benefit of anyone following the progress, and for my own reference in the event that I find myself in a similar situation down the road) about my experience follow.

Monday, the first day of the "crash," was not too bad. I think I did feel a little bit of the jittery, anxious side effect by the time I went to bed the night before, which made for a rather poor night of sleep. So a bit of tiredness, coupled with the drug's hasty withdrawal from my system, made me feel a bit "hung over" on Monday. I had a headache, I was achy and relatively uncomfortable, but all in all not too bad.

I woke up Tuesday morning weighing 7 pounds more than I had only a few days before. And I could feel it. My face was puffy, my eyes felt swollen, and my belly and rib cage almost felt bruised. It also felt like there were sandbags on my eyelids, and like I was walking around in a fog. This was perfect, since my boss had flown in from out of state, and we were meeting to plan for 2010 that day.

Through these two days, I began to get nervous that the steroids weren't working. My expectation was that the high dose of the drug would knock the symptoms out before the drugs left my system. In hindsight, it was not quite as fast as I expected.

Wednesday morning I still felt foggy, but was a few pounds lighter, and by mid-day the fog was lifting.

By Thursday the remaining five pounds were gone, and I was feeling better than I had in a very long time.

Since finishing the dose of steroids, my symptoms have progressively subsided. In my day-to-day activities, the dizziness is now virtually gone (aside from an occasional moment here and there).

One thing I am discovering (or I suppose "remembering," since it was a notable part of my initial Optic Neuritis prior to my initial diagnosis back in April) is that heat exacerbates my symptoms (Uhthoff's Symptom). Because of this, the symptoms are lingering a bit more when I play soccer. I will say, however, that the symptoms have improved with each and every game that I have played in the last week or so. That's saying something, since I have played quite a few games.

Tonight was no exception. I hope this improvement continues until I'm back to where I was a month or two ago.

But either way, this has been a valuable experience, to say the least. I feel a little more knowledgeable about what I can expect in the future, and I know how my body reacts to the steroids (at least how it reacted this time). I am also coming to realize that this situation is a potential part of my reality going forward. I think that knowledge will help me identify techniques to cope with relapses, and how to integrate them into my life.

It has actually made me think a lot about my tattoo. The meaning of the Dwennimmen is not only strength, but also humility (the ram--although strong--submits humbly to slaughter). I think the best thing I can take from this experience is that it is okay to stop trying to be "normal" when things clearly are not. That it is okay to accept my situation with a little grace and vulnerability, and take the time I need to work through it.

And that's about all I have to say about that.

3 comments:

Fuzzy Logic said...

Today is my first day without the IV Steroids. My biggest concern is the crash. I've been working through this and its one of those things that I worry I might over-react at work :)
Thank you again for the detail of the week. I was wondering when the face swell happened!

Dwennimmen09 said...

My pleasure--Please keep me posted on how you're doing with the steroids, too! I hope they work as well for you as they have for me, and that the side effects/crashing are minimal for you. I know it's different for everyone, but it's also good to have someone to exchange "war stories" with :)

Fuzzy Logic said...

Re-reading. I think hungover is the best way to describe the feeling. I even felt out of it like a hangover.
I think the hardest part about MS is that I think for some foolish reason it happens to people who are too proud to sit down and take a day off :) I finally told myself, if I feel like dying I should probably take a break. I say that tongue in cheek but you are right- its okay to be vulnerable sometimes.