Being that March is MS Awareness Month, I would be remiss if I didn’t blog on the topic at least once this month. The Cambridge Dictionary defines “awareness” as “knowledge that something exists, or understanding of a situation or subject at the present time based on information or experience”. While I feel that most people have the knowledge that MS exists, very few of those people (if any) are truly understanding about how different one’s life can be when MS tags along for the duration.

I am so lucky that this guy has stayed the course with me despite my battle.

The array of symptoms that each patient is afflicted with varies so vastly not only in the exact symptoms experienced, but also in the intensity that those symptoms carry. I do think that MS Awareness is more about understanding than anything else, because without a cure, that’s what we really need.

This graphic says so much.

For example, one person made a comment to me about the following scenario: We had a family event planned which required traveling over an hour just to get to the venue. Prior to that, of course, I had to shower, attend to this thick head of curls that always needs attention, dress in normal clothes (not PJs or workout gear), put on makeup, and then travel the hour. All of this in itself is exhausting without even counting in the event itself. The comment made to me was one of complete and utter disbelief, “So your energy is sapped because you showered and got ready and sat in the car for an hour?” Yup. That’s how it works. When I am dressed to go somewhere, of course I try and look my best, and I usually hear, “How are you feeling? Because you look fantastic.” Looks can be deceiving, and no one can see what’s wreaking havoc inside my body because of lesions (scleroses or scar tissue) on my brain and spinal cord.

#truth

I’m going to be brutally honest here and I’m going to share some of the invisible symptoms that I endure every single day but you don’t see. Maybe if I talk about them, even if they are embarrassing, we can get to a place where awareness equals more compassion.

My MS sisters are my family by choice.

First and foremost, let me just say that I am “blessed” (sarcasm… in case you couldn’t tell) with some symptoms that are considered “rare” for MS patients. I’d like to tell each and every one of you that if anyone (even a neurologist) tells you that pain is not a symptom of MS, run (unless you have MS, then just walk, hobble, or roll yourself away as quickly and safely as possible)! The reason why I mention pain first is simply because it interferes with my sleep. The pain is bone deep, and it’s a constant ache (with an excruciating spasm here and there), primarily in my lower extremities. It’s very difficult for me to find a comfortable position, and when I do, it’s only temporary. Late at night I often wander around the house from bed to couch to chair seeking comfort so I can sleep. I have tried all of the prescription (and over-the-counter) sleep aides, and pain killers of all varieties, but to no avail. In addition to the pain, I deal with what I refer to as a “cranky” bladder. This means that when I have to urinate I can’t, and I try and try until tears are streaming down my cheeks. There is a solution (self-cathetorization) which I am NOT open to at this point in my life. I can’t even believe I’m writing this, but people should know. This doesn’t just happen at night, but it’s worse at night, and adds to my inability to sleep.  Sleep deprivation on its own is enough to really mess with your thought processes, not even taking into account cognitive deficiencies due to MS. Imagine how you’d function sleeping only 1-2 hours at a time. Every. Single. Night.

In addition to just feeling sleepy because of my nighttime habits, I also get to “enjoy” (again, sarcasm) the body crippling fatigue that is so common with MS. Imagine that one minute you feel fine, and then the next minute, you can’t even  summon the energy to pick your leg up to take a step. Everything feels like it’s wrapped in lead, and you feel as though you’re just sinking in quicksand. There were many days while I was still working when all I could do was put my head on my desk and cry because I didn’t know how I’d make it to my car, or home. When you tell someone with MS how tired you are, understand that you’re tired (because you didn’t get a good night’s sleep) can in no way compare with MS fatigue. It is, for sure, in a category all its own.

Another “fun” (have you caught on to the sarcasm yet?) symptom is my total lack of balance. There is a neurological test known as Romberg’s Test. I am Romberg’s positive, which sounds good but it isn’t. When a patient stands with feet together, arms by sides, and eyes closed, a Romberg’s positive patient will sway, or even stumble or fall. It’s a test that is used to detect poor balance. While I don’t walk around with my eyes closed and my feet together, I am always off-balance. I have a wide based gait as a coping mechanism, but being off-balance can be extremely debilitating. I can’t be in crowded places because I can’t maneuver a crowd with my wide gait and perpetually numb feet), and when there are a lot of people around, I lose my footing. This happened one time at a funeral repast, and I stumbled very obviously. Another guest at the table (who knows of my condition) said, “Did you have a nice trip? Did you just get those feet?”, and because not enough people were listening to him, he repeated it until he was reasonably satisfied that a sufficient number of other guests heard his little “joke”. I cried all the way home. And people wonder why I like to do things low-key and at home whenever possible…

Yoga and meditation have seriously changed my life and even though this body has its flaws, it’s mine, it serves me every day, and I am grateful for it. And Yes…My shirt says Made Strong, because MS Warriors must believe this to be true in order to live well.

Yet another symptom that is considered rare is the MS itch. It’s insatiable. And because it is neurological, topical creams and antihistamines are useless.  I have scratched and scarred my skin in so many places, it’s ridiculous. Once the itch starts, it doesn’t stop, and the next thing I know, I’m raw and swollen. The worst part is how badly it burns when I get in the shower afterwards. I have one friend who also gets this itch (shoutout to Cathy!), and it seems that it usually affects the same area so that’s good, I guess. She gets it on her torso, and I always get it on my legs, feet, hands, and shoulders. With all these scars, I’ll never be a model, but they are a part of me and I consider them a badge of honor. Proof of my battle. 

Other symptoms include what I call “surface” numbness from the underside of my breasts all the way down my body, left sided weakness and loss of coordination and function, and what is jokingly referred to as “fumble fingers”. My fine motor skills are definitely lacking! I can’t color between the lines, I can’t clasp my necklaces (love my magnetic clasps!), and I can’t even tie my shoelaces (but I use Hickies laces or similar products). The “MS hug” is not the kind of hug you want to have, as it squeezes from the ribs, all the way around to the upper back, and often causes shortness of breath. 

Perhaps the worst of all the nuisance symptoms I deal with are the cognitive ones because they are by far the scariest. Most times, it’s just simple things like trying to remember the word I want to use, or even forgetting my thought in the middle of speaking. Focus and retention are big weaknesses for me, so I’ve learned to watch certain TV shows and movies with the closed-captioning on. This allows me to read and listen, a true teacher strategy. But by far, the most frightening of incidents has happened to me more and more, but it is a fairly recent development. I can be driving along my very familiar route when all of a sudden I can’t figure out where I am. I start to panic, pulling over at my first opportunity. I cautiously look around, hoping for something to look familiar. Nothing. Finally, I realize I have the perfect tool for this, my GPS. I turn it on and after several deep breaths, I continue on my way. Often I use it even when I know where I am going, simply for the reassurance that it offers me. 

The point is, that many MS patients look just like me. We don’t necessarily use assistive devices to help us ambulate, nor do we have neon signs over our heads pointing us out. But we are not like our “healthy” counterparts because despite what you see, every second of every minute of every day is a battle. We do look good, but we are also good actors because we have to be. It’s the life we have been given, and we accept it because we are warriors and we must. It would be a whole lot easier if awareness really did bring about understanding and compassion from those around us. But for now, I’ll just take comfort in the fact that most folks even know what MS is! 

Just sayin.

So the next time you see me (or someone who looks “healthy” like I do) getting out of my car in a handicap parking stall, don’t judge me for not being handicapped enough, and know that even though you can’t see it, my battle is, indeed, very real.