I have MS.
I have a chronic disease.
It sucks. But it does not define me.
I have MS. It DOES NOT have me.
Here’s my story.
In my late-20s (somewhere around the year 2000), I was at a friend’s house and all of a sudden, I had a problem with my right eye. Why couldn’t I get that damn eyelash out? No matter how hard I tried, nothing was making it better. In fact, it got a lot worse. This was no eyelash.
Following a trip to the emergency room, and multiple visits to an eye specialist, it was determined that I had optic-neuritis (basically, a jacked up optic nerve).
About two weeks later, my full vision was restored and I figured it was “just one of those things.”
“Just one of those things” turned out to be my first MS flare-up — but I wouldn’t realize it until more than a decade later.
Fast-forward to January 2012 and I started the new year with weakness on my right side —weakness so bad that I wore my right arm in a sling because I couldn’t lift it. It lasted about two weeks and then all was fine. I chalked it up to “just another one of those things” but went to my primary care doctor … just to see if there was something else going on.
My doctor sent me for an MRI.
A few days later, I received a call at about 9 pm from my doctor. A doctor calling at 9 pm? This couldn’t be good.
Our conversation went something like this…
Doctor: “I’m sorry to call you this late, but I figured your children would be in bed. I wanted to let you know about your MRI results.”
Me: “Ummm, alright. Am I ok?”
Doctor: “We noticed some activity on your MRI that indicates you most likely have multiple sclerosis. You will need to see a neurologist.”
While I do not recall the rest of the conversation, I do remember not being too upset. A little relieved, actually. He didn’t say “tumor” or “cancer” so how big of a deal could this really be? I knew very little about multiple sclerosis. And I certainly couldn’t pronounce “sclerosis.” I still stumble on that word. Thank goodness for abbreviations. I can handle saying “MS.”
Three neurologists and five medications later, I eventually found a doctor I was comfortable with and a therapy (treatment) that has seemed to slow down the affects of the disability at least a little bit.
Today, I am living with MS and dealing with its affects on a daily basis. Thankfully, I do not have pain but I have progressively lived a compromised lifestyle — a lifestyle which involves difficulty walking and decreased function of my left side (initial symptoms were on the right side of my body, but now my left side is the section experiencing the most significant problems — at this point).
A quick glance at my issues…
- I can not walk more than a block without needing assistance (I often use a cane).
- I have extreme fatigue (three hour naps are a normal daily activity for me).
- I am extremely forgetful and often can’t find the right word I am looking to say the simplest sentence (what was I just going to type? #KiddingNotKidding)
- I have “tripped” or my leg has given out more often than I care to admit (and looked around to hope nobody noticed).
- I can not wear contacts anymore — or heels (that’s just a vanity problem — no big deal!).
On the plus side, I have a good attitude about my condition. I know it could be worse. I try not to let my MS limit me — though I do know when I shouldn’t push myself. I do not like to label myself as “disabled,” but I know that I am.
Eventually, my MS will slow me down to the point where I can not do all the things I want to. But until that day, I will do my best to be an active mother, wife and friend even when my children, husband and friends tell me to stop trying to do too much.
Recently (just last month), I joined a swimming program for people living with MS. I attend twice a week — most of the time pushing myself to get there for the 10 am class. When I go, I’m happy. I’m with people who “get it” — people who are seemingly healthy when in the water, but cautiously walk when they are out of the pool — some with canes, some with walkers, some just concentrating on putting one foot in front of the other. I feel like we are a pool full of “Dory’s” — telling ourselves to “Just Keep Swimming” every day.
OK, now that I have made it “all about me” up until this point, it’s time to bring some awareness to MS Awareness Month … here are the basics.
What is MS? It is a chronic neurological disorder that affects the central nervous system (CNS). Basically the CNS (comprised of the brain and spinal cord) is protected by a fatty layer called “myelin” which allows nerve signals to travel like they are supposed to. In MS, inflammation damages the myelin, causing “sclerosis” which messes up the transmission of nerve signals that communicate a desired action from the brain to various parts of the body.
What causes MS? That’t the million dollar question. No one can say for sure.
Who gets MS? Everyone is eligible — any age, gender or ethnic background (though statistics prove that 2/3 are women; more common in caucasians; and more likely in people further from the equator). Yes, I hit the trifecta MS lottery.
How many people have MS? About 2.3 million people worldwide (in the US, between 300,000 – 400,000 people)
How is MS diagnosed? Something usually happens that triggers a doctor visit — a sudden change in vision, numbness or tingling on one side of the body, changes in balance or coordination, etc. An actual diagnosis usually involves an evaluation from a doctor and an MRI with results indicative of MS brain/spinal cord activity.
I don’t pretend to fully understand this disease — I am learning every day. And please, don’t take my words as bible. If you or someone you know thinks they may have systems of MS, go to your doctor. And for more information, visit the website of the National Multiple Sclerosis Society at https://www.nationalmssociety.org.
So, in the meantime while my MS does its thing, I’m going to “Keep S’myelin” (so cute — I wish I could take credit for making that up) and Just Keep Swimming!
By the way, after I wrote this I looked back at last year’s post. It says just about the same thing…told you we MS people have memory loss!! Here is that link … http://happilyeverlaughterblog.com/2016/03/01/march-celebrating-birthdays-leprechauns-warmer-weather-and-msawareness/