Our guest blog post today comes from Rennie R., an MS patient advocate, public speaker, and retired high school teacher, who has been living with multiple sclerosis since June 2003. She shares what it’s like to live with the invisible symptoms of MS, when you “look so good” but actually feel so bad.
Visit Rennie’s blog at http://www.makinglemonadebecauseican.com/
Also, please consider supporting her favorite charity, Marty’s Place Senior Dog Sanctuary.
I’m going to share some of the invisible symptoms that I endure every day and maybe by talking about them, even if they are embarrassing, we can get to a place where awareness equals more compassion.
I am blessed with some symptoms considered “rare” for MS patients. If anyone (even a neurologist) tells you that pain is not a symptom, 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 to no avail.
In addition to the pain, I have a “cranky” bladder. When I have to urinate I can’t, and I try and try until tears are streaming down my cheeks. But then again, god forbid I sneeze or laugh, then the opposite is true. There is a solution, but I am NOT open to self-catheterization at this point in my life. 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 have 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 pick your leg up to take a step. Everything feels like it’s wrapped in lead, like you’re 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.
There is a neurological test for balance 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. While I don’t walk around with my eyes closed and my feet together, I am always off-balance. I can’t be in crowded places because I can’t maneuver a crowd with my wide gait, and when there are a lot of people around, I lose my footing.
Another rare symptom I have 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 always get it on my legs, feet, hands, and shoulders.
Other invisible symptoms I get are numbness from the underside of my breasts all the way down my body, left-sided weakness, and loss of coordination and function. My fine motor skills are definitely lacking! I can’t color between the lines, I can’t clasp my necklaces, and I can’t even tie my shoelaces. And the “MS hug” squeezes me from the ribs, all the way around to the upper back, and often causes shortness of breath.
Perhaps the worst of all symptoms 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.
But on more than one occasion I was driving along my very familiar route when all of a sudden, I couldn’t figure out where I was. I started to panic, pulling over at my first opportunity. I cautiously looked around for something familiar. Nothing. Finally, I realized I have the perfect tool for this, my GPS. I turned it on and after several deep breaths, I continued 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, but despite what you see, every second of every minute of every day is a battle.
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.
Thank you, Rennie, for sharing your insightful and inspiring story!
If you have a story to share with our readers about participating in a clinical trial, overcoming adversity, or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Contact us to get started sharing your story now!