Just ‘One of Those Days’ With MS

The weekend was fine. No strenuous activity. I wasn’t under any pressure or strife. I simply went to bed; went to bed Sunday night and slept well. Then I woke up Monday morning… and didn't feel my hands.

This was the first red flag. The second was it was even more difficult for the transfer process to the commode. It became pretty clear what was happening.

No rhyme or reason

I want to talk about something that I have never gotten used to. After nearly 16 years of living with multiple sclerosis, having "one of those days" for no rhyme or reason continues to be so troublesome to me. It only lasts a day or maybe two, so it’s not an exacerbation – yet some of my symptoms are more pronounced and I feel "off."

It’s strange and not particularly explainable, so I refer to it as feeling ‘MS’y’ or just having a ‘MS’n’ day. Simply wake up one morning and ‘it’ can just be there. Or the day can just be ‘day-ing’... and ‘it’ comes. It’s one of those effects of multiple sclerosis that I cannot stand, no pun intended.

When I am MS’y or having a MS’n day, I find it more of a challenge to function physically and even mentally. As years have passed, I may even have a seizure during this time. Because I don’t know when it’s going to happen, I have learned a few things over time.

Taking a step back from some activities

As much as I loved working and loved my job, I don’t miss feeling guilty about another call-out or worried that I was ‘biting off my nose to spite my face’ if I did (try to) push through to get there. That’s one struggle I did not miss when I finally took my doctor’s advice and retired on disability.

And as much as I enjoyed physically going to church, and would still love to go at least sometimes, admittedly I find that the virtual campus is a very comfortable alternative. That's especially when it’s always possible that I could be waking up to a MS’n day on a Sunday.

Then, as much as I find a good meal or snack enjoyable, it’s difficult to eat especially when feeling MS’y. Holding my utensil and lifting my arm can already be strenuous enough. The heightened sensitivity just makes it worse.

And lastly, as much as I love reading, writing, watching a good movie, or visiting, I don’t have the desire or wherewithal to even feel like doing any of those things when having an MS'y day. My head isn’t ‘in the game’ as far as the first three. And as far as having a visitor, I feel so blah, I don’t consider myself good company to entertain or engage with a guest.

The unpredictable nature of MS

Not that ‘it’ happens daily, but these days and that feeling are just a part of one of MS’ most bothersome effects: unpredictability. I remember, in the movie Forrest Gump, the said character’s mother told him that life is like a box of chocolates.. You never know what you’re gonna get. That resonates with me because living with MS is so like that.

I can handle the occasional bad mood or need for alone time. It’s just those random MS’y times and MS’n days, and what they entail, that I definitely do not fare well with.

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.