I pretty much look normal (whatever normal really looks like hehe) to most people on the outside. But many don’t see my cute pink cane in my car (as my backup walking device), nor do they see the pain searing up and down my spastic legs, or the fatigue which forces me to stop every few minutes to rest and recharge before I do that next load of laundry (that reminds me I have one waiting from 2 hours ago, ugh!). They also don’t see the grab bars in my shower. They don’t see the pharmacy of medications I carry in my purse with which I cannot be without in order to function. They don’t see me getting hooked up to an IV once every month (this Wednesday is the next one – wow time goes fast) to get a powerful second-line MS drug because I failed all the first-line drugs. And as I write, I have the problem of insomnia at night because of the painful spasms. Oh woe is me… whatever…
But it could be worse. Hell, it’s actually been worse. I will be coming upon my 2 year mark of being relapse-free. Remission is awesome but I still suffer with the remnants of what this disease has done to my body. I am lucky to “look normal” – just wish I felt that way.
I realized this afternoon, that I was incredibly tired. This is not an uncommon side effect of my infusion, so I thought nothing if it and just kept on keeping on. Then like a light, I was out, sitting up in a chair. I fell asleep – like in a narcoleptic 3 seconds! When I woke up, I knew I was sick. I felt pain in every joint and muscle of my body, even my hair hurt! I felt freezing cold, was shivering, my throat was sore, and my eyes were burning. It was so sudden. Everything at once.
So now I’m wondering if I have the flu! Argh!!!! I’m miserable. Good thing I made chicken soup two days ago. It’s hopefully going to help ease this crud. If I am much worse tomorrow I will need to make a call to my doctor since I got my infusion yesterday and it can have immunosuppressant effects. Ugh!
Had my 23rd infusion today. Next month I will “celebrate” my two year Tysabri anniversary. I never wanted to go on this drug but it has saved my quality of life and to a big extent, my life as a whole. So for that I am extremely thankful. I am so happy that I can be a good mother to my wonderful boys, wife to my amazing husband, and daughter to my truly devoted parents.
Wish I could say more but my fatigue plus the side-effect of Tysabri “sleepiness” is lulling me to bed… Love you all!
