I’ve decided to further add to the ADD nature of this blog and post about yet another topic that’s near and dear to my heart — Multiple Sclerosis (MS). I mean, I’m not in love with the disease, or anything, but yeah… I have it. Most people who know me, know I have it, but some may not. I wanted to spend this post telling you a little bit about my experience with the disease, because I feel like it’s a very misunderstood ailment, especially to those looking from the outside in. I’m not sure I can totally do it justice, but I’ll give it a shot.
First, the boring stuff. What is MS? MS is an autoimmune disease affecting the myelin that covers nerves. To use an imperfect analogy, if your nerves are the copper wire, myelin is the rubber insulation coating that wire. In MS, the coating is worn away, and nerves are exposed. Just like in an electrical wire, exposed nerves lead to short circuits. Depending where in the brain or spinal cord the myelin is damaged, people with MS experience a wide range of symptoms. Even the same person may experience vast differences from day to day. MS is also characterized by “attacks” which basically means an episode where new damage to the myelin is occurring, and new symptoms have arisen. Once the damage is done, however, even if the attack has subsided, often people with MS will experience lingering “symptoms” based upon the where the attack was centered for the rest of their lives.
The main thing to understand with MS is that each person will have a completely different experience with the disease. There are common themes and similarities, but no two MS diagnoses result in the exact same challenges. This is one reason why MS is notoriously hard to diagnose. It’s also why people with MS experience vastly different responses from those people they let in on their secret. My experience is not, and will not be the same as anyone else with the disease.
From a clinical perspective – from my neurologist’s perspective – I’m a “rockstar.” My type of MS is very mild, which from my doctor’s point of view means that he expects very little long term disability, or loss of function. That’s a good thing, because some of the “loss of function” people with MS can experience range from difficulty walking, talking, swallowing, bladder/bowel control, and blindness… to name a few. So, I do consider myself very lucky in that regard. Of course, nothing with MS is guaranteed. I could be going along fine, living in my superstar world, and then the rug could be pulled from under me, and I could be back to playing dive bar gigs, or worse. One never knows exactly how MS will progress, which adds to some of the anxiety.
I don’t sit around worrying about MS and how my life will be impacted very often. When I was first diagnosed, and I knew virtually nothing about the disease, I can remember having the thought that I may never play the guitar again. The attack that led to my diagnosis hit me very hard in my left hand, to the point where opening a soda bottle was a challenge for about a month or so until the inflammation subsided thanks to some good corticosteroids. I no longer have that level of disability, but I will never again not have a tingling sensation in my left hand. Often its also in my entire left arm. I am able to play guitar again, but it’s those kinds of experiences that shape a person with MS. I had always been an avid softball player, but for a few years prior to my diagnosis I hadn’t played very much (nothing to do with the disease, just busy-ness of life), but it was largely because of the diagnosis that I finally started playing again. You just never know when you won’t have that option, so it’s important to seize the day. In many ways, I’m thankful to this disease for teaching me that. Kinda.
Although, it’s important to understand how lucky I feel in the grand scheme of the MS spectrum (it could be so, so much worse), the fact that I’m a rockstar isn’t without its own set of annoyances. Generally speaking, people with MS are often times invisible, especially those with less than obvious symptoms like myself. The person with an obvious disability may be seen as drunk, but they’ll probably not be called a liar, or have people whisper things like “hypochondriac” behind their back. I try to complain sparsely, but the truth is there are stretches of time where I feel like complaining frequently. My “mild” form of MS is characterized by “fun” sensory issues (in MS geek speak they’re known as Paresthesias, Dysesthesia, and Hypesthesia) in addition to some of my regular symptoms that were a direct result of my previous attacks. And my most recent attack added in some fun “subclinical optic neuritis” in my left eye*. At my worst, my entire face and head feel like they’re coming down from being stabbed in the face in multiple spots with novacaine, my left eyeball feels like it’s being squeezed from the inside by sadistic burning fingers, my head is pounding, my left arm and part of my torso are tingling, and I feel generally tipsy and tired. Often, but not always, the worse I feel physically, the worse I feel emotionally, usually with an inability to cope with stress. Frayed might be the best word.
To help me simplify and compare (I’m an analyst after all) I created a scale to express how I’m feeling. There’s a dual physical (P) and emotional (E) scale from 1 to 10**. With 0 being how I felt prior to my diagnosis (awesome), and 1 being how I feel I my best days now (pretty good, with barely noticeable, mild tingling on the left side), and with 10 being the worst I’ve ever felt, which at this point in time occurred in December 1999/January 2000 when I was diagnosed (the could not open a bottle event). You could ask me every hour, every day for a month to tell you where I’m at on the scale, and I’d give you a different answer. You probably would not see any discernible pattern. There are times, sometimes long streaks, where I barely think about MS. If you asked me, and I stopped to think about it, it would always be perceptible to me, but for the most part, I just go on with my life. But those days when I’m in the 7-9 range… wow. I take certain pride in knowing that you probably can rarely tell when I’m at that level, but the truth is, sometimes I just want to wrap myself up in a blanket and complain for a while. I’m not dying, but everyone needs to vent from time to time about the things that bother them. For me, MS makes relatively frequent appearances on that list.
One reason I don’t like to complain often is that I don’t want to make others uncomfortable. Its strange for me, because I actually find it very therapeutic to talk about MS. Not necessarily when I’m feeling badly. I like explaining to people what it is, what I experience, about my scale, my cute little nicknames for how I’m feeling (“hotwired”, “short circuity”, “wonky”), but I find that when I bring it up, people get shifty. To some extent I understand. When I’ve been in similar circumstances, I’ve been uncomfortable too. I think people worry about saying the wrong thing and upsetting the person afflicted. I’m sure there are people out there who are very difficult to talk to about their illness, whether they seem whiny, or sad, or angry.
Everyone copes differently, and everyone with MS is afflicted differently, making it that much harder. So, I get it. I really do.
But I personally love when people ask me questions. I don’t want, nor do I need, pity, but genuine interest in how I’m doing, or about the disease in general thrills me. I try to respond with an even, matter-of-fact tone, but I hope you’ll forgive me if occasionally I sound a tiny bit whiny. Even rockstars aren’t perfect… maybe especially rockstars. One of my all time favorite ways of explaining how I want people to talk to me comes from a dear friend of mine (edited to add, I will refer to this friend as “Phoebe” per her request and if you knew her you’d understand why) who I worked with at the time I was diagnosed. I had just recently returned to work, and had made some mistake not remotely due to the MS which I’ve long forgotten. I muttered “what’s wrong with me?!” and Phoebe responded “You’re diseased!” While some may have been shocked at her bluntness, it was actually perfect. She and I both knew that particular issue had nothing to do with MS, but she felt comfortable enough to tease me about it. It was exactly what I needed and wanted. I won’t break.
I think I’ll leave this initial foray into the MS world at that. Perhaps in a future blog, I’ll discuss some of the challenges with disclosing or hiding one’s MS at work, or the fun medicine challenges (injections!)***. If I never get around to that, I want to leave you with one thought I hope you’ll remember. Everyone with MS is impacted in a completely unique way. Instead of assuming what they may or may not need… just ask. I for one, promise not to bite you.
Cheers,
PersephoneK
* Shortly after this writing, I had another “attack” that resulted in some tongue numbness. I’m fine, but food tastes differently. Sad face. 3/31/2017
** I’ve simplified my scale! It now only goes from 1 – 5. Check out the picture below. (Side note, you have discovered my true identity is “Mary”. Achievement Unlocked!). Current fun level below is only an example. I’m probably really at a 1 at the time of this update. 3/31/2017
My MS Wonkiness Chart. Copyright persephonespath.com
*** I’m happy to say I’ve gone off the once per week injections. Though my therapy has changed twice since writing this post. 3/31/2017
To learn more about MS, visit the National MS Society’s webpage.
Bonus Shot:
Me and my bike Javier after completing the 2014 Minnesota MS-150. We are dreaming of the pint of Ben and Jerry’s in our future.
