It seems strange to have to cope with something like this. But coping is what I’m trying to do.
When I was diagnosed 3 years ago, 4 years ago? I can’t remember. I thought fine, I’m going to have to live with these flare ups. I won’t know when they are going to happen or what they are going to be. I also don’t know how long it will last or if it will ever get better. Or how bad it is.
But you know what? I was ok with that. I would just keep living my life and when a flare up came I would deal with it. I wouldn’t psych myself out and worry about what could happen. I was just going to live in the here and now and be happy that I am flare-up free.
Then my biggest concern, and what I thought was going to be the only thing that changed my day to day life, was the shots. I was certainly not pleased with having to give myself a shot every day for the rest of my life.
Even that though, I said, ok this isn’t too bad. I can still go about the rest of my day like normal. I kept attributing my bouts of fatigue to the new holes. It seemed that that was really the only way that I could even tell that I had them.
Then once I switched to Tysabri I didn’t have to deal with the shots anymore. I was (and possibly still am) JC Virus free. So I didn’t have to deal with possible impending doom. Then I started to attribute the fatigue to my meds running out. Which probably isn’t all wrong.
But now I need to come to grips with my new reality. I need to stop thinking, ah, this is nothing! I’m fine. Because this is actually something. I have a degenerative disease that is eating away at my nerve endings and there is no cure.
I’m not trying to sound like I am down on myself right now. I am not. The Celexa is still keeping me quit happy.
But I am now coming to the reality that yes indeed my life has changed.
My every day life.
All of the support groups and what not say “I have MS, MS does not have me.”
That is not true for me right now.
It is time for me to tell those holes who’s boss. Maybe I’ll take some lessons from my husband. He seems to be able to get everyone to do whatever he wants. I want to be able to do that with my brain!
“Damn it brain! I will give you a nap but then I get the rest if the day!”
It’s clearly a work in progress.