Have you ever had a day free of MS?

[greaterexp]

Since you were diagnosed, have you been able to go for any length of time without thinking about your MS? I don't think of it constantly, as I did when first diagnosed, but it reminds me at least a few times a day that it's there, no matter how well I'm doing.

[RoseySawyer]

I don't think there has been a day that I don't think about my MS, but I don't let it rule me. 😊❤🌷

[lbenmaor in reply to RoseySawyer]

Fantastic way of thinking!

Leslie

[RoyceNewton]

ha ha much better than me ms enjoys every moment of my life, which actually is not a bad thing as I was looking for some sort of constructive purpose in this life

[carolek572 CommunityAmbassador]

Hey greaterexp,

Great question! I have not had a day where ms doesn't remind me that it's there, but as RoseySawyer said, I don't let it rule me! I always adapt, adapt, adapt! Sure, I can no longer run, and my gait and balance are iffy on the best of days, I still go as best that I can. It's no longer how fast I can get there, it is that I get there!

Keep Smiling,

Carole

[Elizt3]

I also try really hard to not let it rule me. But my stupid feet have hurt (and now burn) me for about 10 years. When they hurt, it can be consuming and when they don't hurt, I also notice that (so I'm stilling thinking about MS, sort of). I find that when I'm teaching my classes, it is the best opportunity to NOT think about MS. It's a great distraction for me.

[erash]

It’s kind of like my shadow tagging along beside me 👀

[Kenu]

I always have something daily that reminds me of MS. For one thing I have to put my brace on in the morning. Also no use of right hand 🤚. So no I think of it throughout the day. 👍🙏🐾😉 Ken

[jimeka]

It’s not easy to forget when it’s the reason why I have footdrop and keep tripping up. The pain it causes everyday in my head, my balance, which if you forget to hold on to something you fall. Having to use a walker all the time, and I think getting up after a decent nights sleep and feeling like you haven’t slept at all. Then there’s the sudden hurge to go to the bathroom, making it on time is a challenge, so yes I think about it everyday, not on purpose but it’s part of my life, and you have to go with the flow. Blessings Jimeka 🦋 🍫 👍

[Memc]

Yup for nearly 17yrs I rarely thought about it now I have a scooter, wear an afo, but still try to not let it define me. I say it is like playing in traffic and you don’t even know that is where you are. Until your hit-with an exacerbation. Thing is with MS you’ll never get out of the traffic and there are no crosswalks.

[Allen5280]

I wish I could take a day off! Unfortunately, I must work around its whims of messing with me. That having been said, I'm a better person, a better man with MS than I was without. So in part, I have accepted its role in my life, embraced my MS and even love a part of what it has changed in me. That's really hard to admit to.

[greaterexp in reply to Allen5280]

I understand what you mean. I’d rather not have it, but I’m grateful for it, or at least for what God has done in me because of it. I’ve learned so much that I may never have learned without it.

[Lgraham78108 in reply to Allen5280]

There are times when it has taught me not to give up, and to rely on my other strengths. But, it has not taken a day off.

[erash in reply to Allen5280]

Agree! MS has made me slow down in a good way and appreciate little things and be more accepting of my own and others imperfections.

[Juliew19673 in reply to Allen5280]

Yes! Prior to DX while MS was at its worst, I was telling a friend "I just want a break from all of this!" Then when diagnosed and was told by my my first Neurologist that "MS will never go away or lessen" I was so angry. Now after DMT and new Neurologist I am back and YES it lessened and is manageable.

[Doubled51 in reply to Allen5280]

MS is a very humbling experience. It will humble the strongest person with its surprise symptoms. But no I’ve not had a day that I didn’t think about MS but I wish I could occasionally.

Donnie

[greaterexp in reply to Doubled51]

I'm with you. I have days in which I hardly think about it, but it's still there. But even on tough days I try not to let it consume or define me. I know I have better things to do!

[SueAB]

I was diagnosed with Pityrhiasis ( a skin rash) and was put on 20mg of Prednisone. I felt like I did when I was young. My husband was afraid I would have a heart attack bustling around and kept telling me to sit down!

[anaishunter]

It's only been 5 months but my new life companion (ms) has not missed a day.

[CraigS]

I’m afraid it’s always with me. Everything I try to do becomes exhausting.

I slept for 6 hours this afternoon.

I struggle to do the simplest of tasks.

It’s like your worst friend that won’t leave.

[Lgraham78108 in reply to CraigS]

I sleep like a professional sleeper!

[goatgal]

Greaterexp Nope!

[Diva1976]

Never! For every step, turn, numbness, pain, etc. I am reminded. Even the deformity of my left hand. I do inner voice a lot. Smile, laugh about it. I have too to keep moving.

[ktaylor8899]

Nope

[MrFixIt1959]

No, since I have two spinal cord lesions that occurred in the early 90's I can't expect my symptoms to give me a day off. I think what is most important is keeping a positive attitude and understanding how many people have it far worse than we do, no matter how bad our MS is... MS was the best thing that ever happened to me and my family as it forced my wife and me to focus on what is really important. I now think of MS as a blessing that includes with it some troubling difficulties that we (MS affects the entire extended family) are strong enough to deal with. Even my two children (both in their early/mid 20s) are stronger and more successful due to our journey through life with MS.

[greaterexp in reply to MrFixIt1959]

I couldn't agree more.

[OKgal]

I wish. Unfortunately, the brain fog, spastic muscles, dizziness will not allow me to forget. Oh! There’s also the shot of battery acid (Copaxone) three times a week, which is the starkest reminder. I’m breathing on this side of the ground, so I just continue to plug along and do my best. 😁

[Memc in reply to OKgal]

Try alpha lipoic acid 600mg twice a day

[kdali]

I have things to work around every day, like whatever vision and legs I wake up with, but I don’t think about it being MS this or MS that. I have much less to work around and plan for all the time than I use to though.

[Jesmcd2 CommunityAmbassador]

Hmmm good question, greaterexp I think, I think more about everyone else's MS before my own..😂🤣 When I'm off here I just back file it. And pay it ho mind until it hits me in the head!😒😂🤣

🤗💕🎃

J🌠

[Kenu]

I have had Cancer twice and MS for twenty three years and would much rather have MS than Cancer. I have been able to adjust to MS , but no adjustments to Cancer😖. 🙏🐾 Ken

[greaterexp in reply to Kenu]

Ken, you always have a great way of putting things in perspective. You have so much to deal with, but you're always an encourager. Thank you. It means a lot.

[GeorgiaJunebug in reply to Kenu]

Definitely a glass half full kind of response. I try to remember there’s always someone out there who has it way worse off than I and that helps me push through the day.

I’m sorry to hear about all you’re going through and have gone through but know you’ve got the personality and strength needed to perceiver.

[kymrob91457]

I've had MS for 32 years. The first 20-25 years were a breeze. I played pool, and kept myself busy. But over the past 7-10 years, it's gotten to the point where I have to think of it everyday. No more pool, and now I'm in a wheelchair. I have to think before I pull my pants up so I don't fall. Yes, It's constantly on my mind. I can still drive with hand controls, and I have a Handicapped Van. So I do still have my independence...to a point. In spite of the MS, I'm still pretty positive about my life. Just keep moving...forward!

[Jenn29]

I have days that I can push it to the back burner but I can never go a whole day of not thinking about it. It is a constant.

[anaishunter]

Just wanted to add that this is probably a given for any significant disease, the chronic ones, the ones that generate pains, cancer and many more. Each of them in their own way with their own burden are with us every day.

I've just asked my husband whether he thinks about his diabetes every day. He said: of course, I have to check my blood sugar level everytime I want to eat something.

My mom had rheumatoid arthritis and I'm pretty sure the pain was with her every hour of every day.

This does not make it any easier for us, the ms'ers, but maybe there is an opportunity to learn how each of us deals with their own disease burden and have greater empathy.

[greaterexp in reply to anaishunter]

Great point. Thank you.

[rjoneslaw]

This group has taught me so much I am graceful to hear your perspective on MS and how you deal with it.

This group helps me and other to continue to push on and know that there is a brighter side to MS if we just take the time to look for it.

I am sure this is something those who a struggling with the new diagnosed and those who have had for years can apply to themselves. I know I am.

Thank you so much.

[GeorgiaJunebug]

I try not to let it creep in to my day. Granted, some days, you just can’t get away from the MS be it fatigue or shaky hands or balance issues, etc.

But, I can’t help but smile once I’m in the middle of a project and when I stop I realize I hadn’t been thinking about MS- only what I’ve been doing.

So, I totally hear you and agree-

[Russso]

Not since 1997

[nicoly3467]

I saw this post from last year. I like it. I’ve had several great days in my 6 years w/ much less pain and fatigue and I treasure those.

[Sandydemop]

Hi greaterexp I know this is two years after you asked the question but it gave me something to think about. Since I was diagnosed 10 years ago I have been looking for my tribe. People who understand what is happening to me. I read everything I could find, joined support groups, took meds almost every day so no, i have not had a day off. On the other hand, as people have said, it gives me compassion for my mother and sister who had it worse than I did, plus all the other people suffering worse than i am in general. Strangely, it gives me a purpose. I have to work hard to just maintain my strength, health, mood, etc. Today i attended a cando ms webinar on health and wellness. so sorry this is long winded but thanks for asking.

[greaterexp in reply to Sandydemop]

Thanks for responding. You’ve found a silver lining with MS. You must be big blessing to those around you with the compassion you’ve gained.

[jorrell]

MS is not a word or a challenge to me in my daily life. There are many things I can't do safely anymore, like toss a log into the front loader, my right finger next to my pinky got hit by the log and dislocated. I relocated it and went to the urgent care, their question was how could I tolerate the pain of the injury and relocation. My simple response shocked them a bit, my finger was pointing up at the middle joint and it did not hurt, so I pulled my own finger "if you like, insert fart joke here" and got it back in the right position.

They still couldn't believe that the event had actually happened, I said read my medical records, I have SPMS and peripheral Neuropathy to go with it. So the pain was minimal, I got my hand in the wrong place at the wrong time and it happened.

I got a splint for the finger, it is swollen, but it feels fine.

The only moment I thought about MS was when my lack of dexterity left a finger in the wrong place. That was not a mistake, that was MS.

At work, I am so focused "to overcome the MS induced memory issues" that I don't think about it, the job must be done.

When racing my old Boxster S, my focus is 100% on staying safe and going faster, those are the only things on my mind, I call it a brief escape from MS as after a long run, I need to be helped out of the car and put in a chair before the next run.

We all have our moments that we don't think about MS, but at least in my case, it seems that I am so focused on something else, that MS becomes ms.

[greaterexp in reply to jorrell]

I’m sorry about the dislocation.

You have certainly found some really healthy ways of dealing with the challenges.