I want to be clear here: I am not posting this to gather pity. I am posting this to inform you, my readers, that my life with M.S. is not all sunshine and roses, and I do have difficult days. I ask that as you read this, that you keep in mind those you may know who also suffer from M.S. or any other debilitating illness, whether it be physical or mental or a mixture of both. I tend to post a lot of the positive spins on my disability, the overcoming moments, the victories big and small. Today I have no victories to share. Today I’m just sharing the real. If that’s cool with you, read on.

I’ve been experiencing extreme fatigue on and off (mostly on) for several weeks now. I tend to expect this every month before my infusions, but this time it came on sooner than expected and continues to persist beyond my infusion this past Tuesday. It crept up on me, and I wasn’t really realizing the severity until I noticed my left leg was seriously dragging. When I try to move that leg it hesitates like a 4 year old who was just told it’s time for bed. I pulled my walking cane out of storage for safety. I hate using it, but I need it in large spaces where I don’t have a wall or a handrail to steady me when I lose my balance. Losing my balance happens often throughout the day, and it’s quite unpredictable. I have to move slow. If I turn too quickly, I quickly lose my balance. Picture a human Weeble, if you will (“They wobble, but they don’t fall down!”). That’s me. I haven’t fallen so far, cross your fingers!

The other thing that’s been going on since around Monday is that I have a nearly constant burning sensation on my back, just below the right shoulder. This is extremely similar to the sensation I had on my arm in the months leading up to my M.S. diagnosis in 2009. It feels like a sunburn, and is painful to the touch, which really limits my clothing selection. Soft, silky fabrics only. I’ve had my husband inspect the area, and there’ s nothing wrong with the skin. It seems to be neurological. It quite literally could be all in my head.

With those two things going on, I had been hemming and hawing for the last couple days, wondering if I needed to contact my neurologist. With some encouragement from my Mom and sister, I did just that. My neurologist’s office recommended starting with some laboratory tests, and are hoping to get me in to see them early next week. So I’m waiting for the next step, and doing my best to stay active and not completely lose my mind in the meantime.

The type of M.S. I have is relapsing-remitting, which means it comes and goes. You relapse, experience symptoms, and then those symptoms go away (mostly, sometimes, not always). My hearing and vision loss are permanent and have never gone into remission. The fatigue also never entirely goes into remission, but mostly it’s been manageable. Until it isn’t. Which is where I am at the moment. I am frustrated to be unable to do even a fraction of the things I usually do. Taking care of my home, feeding my family, visiting with friends.

I am grateful I haven’t been in this position for many years, and in that way I can say M.S. has been kind to me, but now that I’m here, I’m angry. I whined the other night while walking a measly 2 miles per hour on my treadmill – “M.S., this isn’t fair! You’re not playing by the rules!” This haughty response came back to me, “There are no rules here. I get to do whatever the hell I want.” It’s a serious mindf#*k, and that fuels my anger. I’m angry that it’s slowing me down. I’m angry that I can’t run. I’m angry that I have to drag the stupid cane around. I’m angry that I had to spend my Friday morning at the medical lab instead of the gym. I’m also a bit scared that I don’t know if this is a true relapse, or if I’m just overreacting (my sister reminds me this is not how I am, in general). I’m scared that it won’t go into remission this time. What if my running days are over??

But, of course, those are panicked, alarmist thoughts, and they are never very useful. I can focus on what I still have today, and hope for what I could have tomorrow. So in an effort not to get sucked into the depths of my personal pity party, that’s what I’ll be focusing on. The gift of today, and hope for tomorrow. I’m really okay. I just wanted to be honest with y’all about the realities of this disease, because I know sometimes I’m a little “rose-colored glasses” around here. And I want you to understand that M.S. really does suck sometimes. Truly. It can be cruel and unpredictable. However, It’s made me a hell-a strong human, so I’ll always be thankful for that.

Rant over. Carry on!