I just finished reading a post on a blog called Fuck MS (you should check it out, by the way). When I saw the title I smiled and laughed, because that has been my attitude from day one. And when your are dealing with an illness or disability, attitude is everything.
When my body began to go haywire ten years ago, I knew something was wrong, but everybody I went to couldn’t give it a name, which was frustrating. As the process to figure out what this was continued, my imagination ran wild, and not in a good way. When my MRI came back and I learned it was MS, the verdict actually came as a relief. That sounds silly now, but when you think it might be something like ALS, Multiple Sclerosis isn’t bad by comparison.
Then shit started happening, and the slow erosion of my mobility commenced. Through it all, my reaction to each hurdle that presented itself was annoyance and defiance, not sadness or despair. I certainly wasn’t happy that my leg started feeling like an overcooked strand of spaghetti, but pissing and moaning about it wasn’t going to change anything.
I’ve always been good at compartmentalizing things going on in my life, and I’ve placed my disability in the attic, tucked away with all the other junk that I don’t have any use for. I hate the word disability or handicap, even though it applies, because I don’t want that to define who I am. I also don’t want people thinking of me that way. I’m still the same guy I was twenty years ago, it’s just that I walk funny now, have no balance whatsoever, and can’t do a lot of things I used to. Many of the things I can’t do, like yard work, I don’t miss at all.
I didn’t always have this attitude. I use to bitch and moan about a lot of petty things, and it took becoming afflicted with MS to realize how good I had it. Family, friends, and having love in my life was something I no longer took for granted. So now, I try not to sweat the small stuff, other than the Red Sox.
Granted, I still have full use of my arms, hands and the other leg hasn’t been touched. I still work full time, still drive a car, and still maintain the standard of living we had prior to the diagnosis. None of that has changed. I can still go for walks, although I’m slower than molasses and need a cane, a brace that lifts my foot, and a knee brace.
I know statistically that there is an excellent chance I will wind up in a wheelchair some day, and I also know I won’t be happy should that day come. In some ways I am trying to prepare for it, particularly in terms of housing and career, which is the primary reason I have started to write.
Is that denial? Perhaps. Maybe my tune would change if I was in constant pain, or if more of my body was affected. But still, every day above the dirt is a good day. Having your glass half full rather than half empty is really important to not letting something like MS swallow you whole and take over your life.
As they say, ignorance is bliss, so I’ll continue living in this self-constructed cocoon as long as I can until something punctures it. Until that day comes, and I hope it never does, I’ll remember that blog title, and wear it like a shield of armor and honor: Fuck MS!
MSich Chronicles 
So well said.
LikeLike
Many thanks as always
LikeLike
This post was so well written and beautiful! I just started my blog about 2 months ago and it has been such a great experience! I have been battling MS for 16 years now and it comes with a lot of pain! But I have been able to connect with so many amazing people that really understand. I look forward to more of your posts! Take Care!!
LikeLike
Thank’s Alyssa. I have been meaning to to this for a while. I have PPMS and have had to deal with a lot of things but fortunately, pain is not one of them. I am looking forward to connecting with more people in the MS community like yourself, and I look forward to reading more from you. I am following your blog now, and I am not lying that when I saw the title of your blog and the eloquence of your words, it inspired me to do my thing. Thanks again and good luck to you. If you are on Facebook, please send a friend request
LikeLike
There really are a lot of amazing people out there that I have connected with. I am glad you don’t have pain. We all have the things we deal with living with MS. I hope my posts will be helpful to you. I wish you wellness and comfort!!
LikeLike
I hate to have this in common but it’s nice to know there’s a fellow warrior out there. Obviously your posts really resonate with me, although I have RRMS, the thoughts and worries are all the same. Thank you so much for reading my FUCK MS blog and I’m thankful for the shout out as well. Sending you happy and healthy vibes 😘
LikeLike
The feeling is mutual. I have PPMS. I don’t have relapses per se because my symptoms never leave. But sometimes things do get worse, and that is my relapse. The only problem is once it happens, it stays that way. When I first started all I was dealing with was a droopy foot. Now it is all the way up my leg into my knee, so my leg feels like a broken kickstand. No pain though, and I am grateful for that.
LikeLike
Ah right so whereas my relapses might disappear you’re kinda stuck with the symptom. What a weird and bizarre disease. So you’ve had the one symptom that has progressed? Like you my ms came out of nowhere. One day my eye was blurry and the next thing you know I’m going for an MRI and jackpot MS. My main symptom was and has continued to be optic neuritis. I’ve had it repeatedly and when it goes it takes away a little piece of vision. The bastard! 😂
LikeLike
In the novel I wrote, the opening scene is a representation something that really happened which was my introduction to MS. My leg essentially stopped working while I was on a treadmill. The feeling came back after I practically fell off the damn thing, but it happened again a week later, and after that one I noticed I kept stubbing my toe on things, which was the beginning of foot drop, and over ten years it has eaten its way from my toes to me knee. I was okay until it got into the knee, but that was a little bit of a game changer. My main issue is I have no strength or control of my right from the knee down. and my balance is terrible. If I lose my center of gravity I will fall down. I don’t fall very often, but it has happened on occasion. It’s embarrassing as hell when it happens in public, which has occurred twice. Walking is my main issue. My eyes are fine, I don’t have any pain (yet) and have never experienced a MS hug. I hope I never do. But when something does changes for the worse, it usually stays that way. It’s the nature of the beast.
LikeLike
It really is the snowflake disease. Two people with the same disease and very different symptoms. I’ve been fortunate in not having any symptoms that have affected my mobility and haven’t experienced the dreaded MS hug. My symptoms have revolved around my eyes, fatigue and pain. Since my last bout of optic neuritis was so severe the neuro recommended the Lemtrada treatment so here’s hoping that prevents any future ON relapses.
LikeLike
I hate hearing everyone is different, but it is a fact. I know a person who was in a home depot with her husband and all of a sudden she went totally blind for about 20 minutes. It was like someone turned the lights off. Needless to day it scared her shitless
LikeLike
That unknowing is what keeps me up at night
LikeLike
I try not to dwell on it. Denial is a wonderful thing
LikeLike
Ain’t that the truth?
LikeLike