I Feel Like I Have MS Today

By Dianne Scott

2 min read

Roses are red, violets are blue; every day is not a bad day, but some days I have the MS blues.

Generally I can tell how I am feeling or the type of day I might have as early as when I first wake up in the morning. There are two types of days, and there’s definitely a difference.

One type would be the days that I know I have multiple sclerosis (MS) because, well, I do unfortunately. I was diagnosed just about 17 years ago. The other type are those days when I feel like I have MS: emotionally, physically, or both. Although I am not fond of MS at all, it’s the days I feel the diagnosis as opposed to just living with it that makes me dislike this chronic disease, this MonSter, all the more.

What a "good" day looks like for me

I’m pretty much reliant on my aides for my activities of daily living. That’s what my life is. I wake up in the morning to my routine.

On a ‘good’ day, I awaken about 8:30 or 9 a.m. I say my prayers, giving thanks for the gift of life and seeing a brand new day. I then begin the move to quiet the loud cries of my bladder. These are always the first orders of business for the day, and I move on from there.

Now, every day, I am sedentary. Everyday I require help to toilet, bathe, groom, dress, get meals, and so on. Everyday, I accept my new normal of serious decline in function. With that comes a kind of ‘contentment’ in going about my day doing what I can.

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And what a bad day looks like

But… this particular day I woke up noticing immediately that my body felt like a tight ball and, as I said my prayer, it hurt to stretch. My hands, already curled, were fisted so tightly they ached. I needed help prying them open to grasp the chair to begin my transfer. Said transfer, which is to the commode, was laborious because the tightness makes me feel 800 pounds. Uh ohh.

My experience living with MS lets me know from these first several minutes that the MonSter is up to no good. I felt ‘off kilter’ in my head. I was so very tired and fatigued, I had no gumption to try to do anything: write, read, watch television, handle business, engage in conversation, nothing.

This particular day, I feel like I have MS. My focus, as I sit glumly, is not on trying to be gentle with myself, but rather on all that I cannot do. A bummer of a day for no reason, because that’s what MS can do.

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Getting through hard days

Contrary to how it may sound, I’m not complaining per se. I’m just expressing my experience, venting a bit, and giving my explanation of the difference between living with MS and feeling like I have MS.

At any rate, I got past that day and moved on to the next, which happened to be better. It makes me cognizant that thus far, my track record for getting through hard days is 100%.

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Kim Dolce Moderator & Contributor
Dianne! Thank you so much for detailing what your day is like, couched in feeling like you have MS vs. knowing you have MS. I feel you about the difference between the two, and you are brilliant to put it that way! As always, your wheelhouse is rich with coping strategies. Sharing these with us evokes our better angels, and gives us the tools to better manage our own disease journey. Your faith, along with your optimism that tomorrow can be a better day, is a big part of that strategy that we can tap into, right along with you. In the spirit of the approaching holiday, I feel thankful and grateful that you are here! Warmly, Kim, moderator
Silver Oma Member
Thank you for putting into words what I have been feeling recently. Did not receive the wonderful gift of rule out diagnosis of MS but a few years ago. No, that doesn't mean I didn't have symptoms, but we all know how frustrating it can be explaining that something is "off" and getting told it'll go away or it's part of aging, etc. Sorry, went off the rails there. I am still learning how to ride this new coaster. Some mornings, I get up forgetting that I need to give it time and find out really quickly that wasn't a good idea as the room starts moving. Even getting thru the day is a "crap" shoot. Some days I can't wait to go back to bed (even though it's only 10am} and other days I'm okay until evening. It is comforting to know that I am not totally nuts and these twists and turns are real. Thank you! Wishing you all the best--may tomorrow be a "non-MS" type of day. 
1. Silver Oma Member
 <inline-mention username="Silver Oma" user-id="8860740"/> knows auto correct had fun.... 18 months). Not Smiley Face w Sunglasses emoji. Hahaha
2. Moyna John Moderator & Contributor
 <inline-mention username="Silver Oma" user-id="8860740"/> Thank you so much for sharing your experience so openly—what you've described resonates deeply with so many of us in this community, myself included. The rollercoaster of MS can feel relentless, especially when it challenges our sense of stability day by day. Navigating the journey without that "rule out" diagnosis at first must have been incredibly frustrating. You’re totally right; it’s exhausting to explain that something feels "off" when others can’t see or understand it. But, it sounds like you're learning how to adapt at your own pace, even on days when MS doesn’t make it easy. And remember, taking it slow and honoring those moments when you need rest isn't a setback—it’s just part of the ride. Know that you're not alone in this. We’re here to support you, and we’re cheering you on as you continue finding your way. Best regards - Moyna (Community Moderator)