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. 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)
2. mspencer Member
 <inline-mention username="Silver Oma" user-id="8860740"/> please don’t forget to get an MRI to confirm. I’ve had it for 5 years and it took me a while but I finally accepted it an am on a rigorous sleep schedule. I wake up at 5 AM take my meds and then start to move. Heck I even went skydiving last month. I want to do as much as I can while I still can! I try not to tell people because they don’t understand so I don’t talk about it anymore!
David W. Member
I feel so damned useless. I retired at age 42. I have degrees in Biology and Biochemistry. I once had scientific staffs of 125 great professional people. I can no longer drive or partake in any of my previous hobbies. I am still married (!) to my bride for 55 yrs. We have 2 daughters, 4 g’kids, a great son-in-law, and a great home. Despite my M.S.-curse, I try to maintain a positive attitude, but it’s sometimes really difficult. Sometimes I even wonder why am even alive.
1. Latoya.Juniel Community Admin
 <inline-mention username="David W." user-id="3974542"/> It sounds like you’ve achieved so much and made a tremendous impact on the world and people around you, both professionally and personally. Managing feelings of usefulness and purpose, especially when dealing with the limitations imposed by MS, must be incredibly hard and I truly hate to hear just how much this is all affecting you. What’s remarkable is that, despite these challenges, you’ve cultivated a lasting, loving marriage, raised a strong family, and have built an incredible legacy. Please remember that feeling this way is natural. Your presence and wisdom continue to matter deeply to your loved ones—they get to see the strength and resilience you show every day, even if it’s hard for you to feel it. You’re not alone, and the strength you’ve shown all these years is a legacy that still matters deeply. Stay encouraged, Latoya (Team Member)
f5hwo4 Member
I am having a bad day too, It took me all morning to make out a shopping list and then didn't go. I went out to buy lunch for some workers at our house and forgot to pick up the food. They were real nice and made fresh food. I was in a hurry and my brain doesn't seem to be working today. This afternoon I was making some rice and noticed that my container was getting low. I grabbed a package of the wrong rice and dumped it in. I also had to change my clothes a little bladder accident. As soon as I check on a sculpture I have been working on I am going to take a ice pack to my neck and try to cool down my brain. I think it is going to be cereal for dinner. Potter
1. Latoya.Juniel Community Admin
 <inline-mention username="f5hwo4" user-id="3977349"/> I’m so sorry you had such a rough day—it sounds like everything just piled up at once. Forgetting things, mixing up ingredients, and having those physical frustrations can be so draining, especially when you’re already feeling off. It’s like your brain and body are both calling for a reset, which is completely understandable. Be gentle with yourself, and remember that each day can be a fresh start. Days like this can be so frustrating, but sometimes a little rest is all we need to bounce back. Sending you positive vibes for a better day tomorrow! Kindly, Latoya (Team Member)
Erin Rush Community Admin
Hey, <inline-mention username="David W." user-id="3974542"/> and <inline-mention username="f5hwo4" user-id="3977349"/> (Potter). Some days just . . . suck. I am glad you felt like you could share those feelings here. I, too, had a pretty craptacular day and I am ready for the weekend to start. Not because I have anything great planned, but just because today has been the pits. I don't blame you for how you feel somedays, David. This society puts such a high value on productivity and earning money, that it's easy to feel useless and shoved to the side when you can no longer use those rubrics to measure your value. But, we are so much more than our work and our income. And I hope we can all remember that tonight. Here's hoping tomorrow is a better day for all of us! Best, Erin, Team Member.
f5hwo4 Member
Next day! Had a better day yesterday, Didn't make any dumb mistakes that I know of. I spent 6 hours in my studio working on the sculpture of my dog, The longest amount of time I have spent in my studio for months. I was too tired to make dinner so we had leftovers. We are getting ready to have our bathroom remodeled and made into a handicapped bathroom. It is a fairly big bathroom so we are trying to find colors that will work with it. Not replacing everything. We have looked all over town at shower systems, not finding anything we decide to drive to Oklahoma city. We bought some huge tiles, when we got home my husband realized that he had miss measured. Driving back to OKC Monday to get another box. It's 3 hour drive from my house so I hope to find another interesting store there. Potter
Erin Rush Community Admin
I am glad yesterday was a better day overall, Potter (<inline-mention username="f5hwo4" user-id="3977349"/>)! Yay for all that time in your studio! And, that's a bummer about the tile and I hope you find an interesting store or two to visit on that return trip to OKC. Best, Erin, Team Member.