This disease is confusing and so utterly frustrating at times. I’ve been feeling good. Actually, I’ve been feeling great. These past 30 days have been awesome. The injections have been getting easier. I have had more energy. My mood has been up. My sleep has been mostly good, and my anxiety levels have been the lowest they’ve probably ever been. Life is good. You can imagine my surprise when my doctor assessed me for a follow-up visit a few days ago and the words “mild relapse” come out of her mouth. It took a few minutes to sink in and I’m not sure that I even heard anything else she said after that as my brain tried to make sense of what that meant. A relapse? How is that even possible? How can you have a relapse and not even know it? I take great pride is knowing and listening to my body but I had absolutely no idea that what I’ve been feeling could possibly be a relapse. I guess I still have a lot to learn and if I’ve learned anything so far it’s that everything can (and probably will) change pretty quickly.
My left foot has been giving me some trouble these past few weeks. Mostly, it just feels wet, which is probably the most bizarre neurological symptom that I’ve ever experienced. Imagine that you’re walking around in your socks and you step in a small puddle of melted snow on the floor. It doesn’t wet your entire sock, just a small spot. That sensation of the wet sock touching the bottom of your foot each time you take a step is the best way that I can think to describe it. I feel that sensation with each step. This is not new though. The “wet foot” feeling is something that comes and goes for me. The first time it ever happened, I kept checking my sock to see if it was wet. I thought I was losing my mind and wondered why I seemed to be the only one stepping in the water spots on the floor (the ones I couldn’t see). It wasn’t until it persisted for a few days that I finally realized that it was a neurological symptom.
A few days after the wet foot made its re-appearance, I started experiencing sporadic tingling and then intense itching that happens inside your skin and can’t be soothed no matter how much you scratch. It might be nothing but it might also be a precursor to something bigger, a pre-lapse of sorts (which isn’t actually a thing, but something that I just made up). I think it fits though. Often times, before a relapse hits, people will experience weird symptoms that hang around for a few weeks. With my first it was a weird sensation in my midsection. The skin was hypersensitive and when my clothes brushed up against it, it made me cringe. I thought I was getting the flu. With my second, it was this darn left foot again only it was hot instead of cold or wet. Regardless, I’m supposed to keep an eye on it and if I start to have trouble walking then I will be in a full-blown relapse and will need another round of the dreaded steroid infusions.
Hearing the word RELAPSE is something I wasn’t ready for yet. I guess no one is ever really ready for it though.
A relapse is essentially disease activity or progression. It’s a flare up that causes more damage to my central nervous system. It’s been a little over a year since my last one and I’m just not ready to deal with everything that comes with it. I’m not strong enough yet (physically and emotionally) because a relapse is much more than a round of steroids and a week or two off work. It’s literally life-changing. The immediate physical limitations are nothing compared to the days, weeks, and months that you spend re-learning how to make your body work like it’s supposed to. It’s an adjustment to everything that you do in a day from showering to putting on your socks to starting your car to using a pen to write your name. Whatever body part or function the relapse affects doesn’t just spring back to life after treatment. It takes years for that function to return and most of the time, it never returns to the level that it was prior to the relapse.
My right hand, for instance, will probably never have feeling again. It will never be as strong as my left. It will never be coordinated enough to zip my coat or button my pants without struggling and failing a few times before finally getting lucky and getting it right. My right leg will never be as strong as my left and the foot and ankle will never function as it did without extra effort and focus on my part. My balance will probably never be the same. My ability to multi-task efficiently will probably never return and my vertigo will probably never go away. I’m not angry about those things but they do frustrate me at times and at other times they make me sad. When you’ve spent 31 years of your life holding your toothbrush or fork a certain way and suddenly have to change it and learn to do it a different way, it gets old really fast. Those small changes add up until suddenly it seems like everything you do has to be modified or adapted in some way and I can’t help but wonder what will be next. What will I have to change or miss out on as a result of this crazy disease?
Sometimes I feel like I’m stuck in a box with a window to the outside, the outside where everything else happens around me but not with me. I’m sick of the box. I’m sick of the window. I have big plans for 2017 and need all the fresh air and sunlight that I can get so I will continue to trudge on and hope for better, healthier days.
Inspired by the Daily Prompt: Conundrum