Well, I swore I wouldn't do this again. Yet here I am, up with insomnia after day three of another Solu-Medrol infusion. For those of you going "what the heck is that", the short version is it's a very high dose of steroids, 1000ML a day, administered via IV for three days in a row. For those like myself with Multiple Sclerosis, sometimes it's a necessary evil to tame the monster lurking inside of us. Don't misunderstand me, for me and many others, it does work. In my case, it gives me precious, cherished time feeling 'normal' that I never get except after an infusion. Today I went to the grocery store for the first time in months. I walked at surprisingly brisk pace, I wasn't unbalanced, I wasn't fatigued, heck I enjoyed it. My daughter Morgan (who's 14 years old) says I act like I'm on speed or the energizer bunny after an infusion. LOL. What's sad is? This is how I used to be; this is the real me that now normally spends her days trapped inside a malfunctioning body. It's been so long that Morgan forgets this was how I was when she was little. I was a single mom with her for many years, and we were always on the go. Taking road trips, day outings, shopping. Those days seem like a past life to us both now I fear. Even sadder, that's a 'me' my son Joshua (who's 6 years old) has never and will never know. Except...for these precious rare times after a steroid infusion.
And those are the two reasons I caved in and had another one over the last three days- my children. Yes, I was relapsing again and badly. Yes, I needed it to pull me out. But when my doctor said he wanted to put me on one again, I won't lie. My first thought was "oh, I'll get a couple glorious weeks of being normal with my kids again". And I immediately agreed.
So here I am, well after 3am and wide awake due to the horrible insomnia that comes with the infusions. I can go literally days with little to no sleep for the first week during and after one. That, is the side effect I simply despise. Especially since I know my body needs the sleep badly, and I will eventually crash very hard. There is also the very real risk of becoming diabetic from them, as well as your thyroid shutting down. Not to mention organ damage. For the time you have such an insanely high amount of steroids in your system, your body is no longer in control. The steroids have full control over your functions. My point? The choice to use this therapy to tame a relapse is not one that should be entered into lightly and without a lot self education on the risks. But for me, the benefits far outweigh the risks. So here I am. Again.
I have to say, it's been a really really rough year. After my first infusion, I was totally MS symptom free for a little while. This time is a little disheartening, as I am not. Yes, I am TONS better, but my left arm and hand are still weak and tingly, and I've only regained maybe 70% of the feeling in the left side of my face. I suppose it's to be expected. My cognitive issues remain as well, maybe a slight improvement in processing time and a little better short term memory. As I stated in my last post, I have progressed. It's just difficult to accept the fact I have reached the point some things may never, ever be normal again as long as I live. Even after an infusion- my last and only hope for a rare reminder of what normal even remotely feels like.
But, I choose to be thankful it's worked at all, and has given me this brief window of time to really enjoy getting out and doing things. Soon enough I will slow down again, and find myself unbalanced. I will get fatigued just from the walk from my car to the store, and grocery shopping will be fond memory. After my first relapse, I found after the steroids wore off my baseline had changed for the worse, I expect the same to happen this time as well. A relapse takes it toll on you without doubt, and very few of us with MS come out of them without some lasting effect that we didn't have before we slipped into them. So until I find out what that will be for me...and I go back to being trapped in my failing body... I will enjoy this precious, blissful time I have free from major disability. An all too brief breaking free of the monster that lurks inside of me. For that, insomnia is a small price to pay :)
Be well all, and may God bless you.