Leave. Me. Alone., MS!

If you're anything like me, you have a strong dislike for intrusive and bothersome things. For example, you're at a cookout having a good time chatting and chewing on the delicious serving of barbecued meat(s) of choice, corn on the cob, baked beans and potato salad before you, but there's a fly or two that's competing for your plate. Here's another.. You're minding your business napping, reading, writing, or something of the like, and your phone rings interrupting your reverie – and it's one of those annoying, never-ending telemarketing calls.

Does the sound 'ughh!' or the words 'leave mealone' come to mind? It certainly does for me. I simply want all things that get on my nerves – literally and figuratively – to leave me alone, get out of my way, and out of my life. And that includes all things multiple sclerosis (MS).

MS symptoms can come out of nowhere

It's a Saturday evening and I have a movie lineup. There's an action movie, a thriller/suspense, and a romance awaiting my attention. I may not get to all three because I might get tired, but I feel confident that I am definitely good for two. I have my bowl of popcorn and homemade iced tea for a snack. I'm excited; I love a good movie night! All day things were fine, but late afternoon, somehow, a match struck in my lower right leg and several ice cubes found their way to the inside of my feet. Hello MS.

My hands have turned numb and cold and curled tighter. I can't enjoy my movie or snack now. My legs are burning. I'm uncomfortable. I'm not in the mood to do anything. 'Ugh,' I think. I just wanted to relax and watch a couple of good movies, but the number-one mood killer has intruded once again and just won't leave me alone. Why and where'd it even come from??

The unpredictability is hard

Among other things, MS has left me sedentary and dependent on others. The unpredictability of this chronic disease I not only detest, but it is so bothersome to me. I would love to still have the ability to walk – even pivot – and use my hands and have my independence. Since I consistently do not (and accept that I will not), I can plan to use my wheelchair, go places where wheelchairs can go, plan for help to do activities my hands no longer allow me to do for myself, etc.

But the unpredictability is like that intrusive fly or that bothersome telemarketer and just annoying. You 'plan' to do something and BOOM! A flare appears out of nowhere. Sudden fatigue, pain, the 'MS Hug,' sensory disturbance, and/or a plethora of symptoms 'attack' suddenly.

A plea

If only my words could matter. My message would be clear. I'd say rather fervently, fervidly and with great passion "Leave. Me. Alone., MS!" And even though its antics haven't been and are not polite, kind or courteous to me, if I thought it'd help, I might even add a heartfelt "PLEASE!"

Editor’s Note: We are extremely saddened to say that on December 2nd, 2024, Dianne Scott passed away. Dianne’s advocacy efforts and writing continue to reach many. She will be deeply missed.