A question for the Multiple Sclerosis Community

Imagine if you could travel back in time and meet the person you were when you or your loved one were first diagnosed. What advice would you give them? How would you describe to that person how you feel now?

Answers from the Community

I would tell the person that I was before my diagnosis to enjoy the journey and focus on the little things because the little things are important and the little things are what make you happy. At this point in my journey, I have lost feeling in my feet and in both hands and even something as simple as sticking my hand in a bag of chips is difficult because I can’t feel the items within. My advice would be enjoy those little things. Those little things are what counts in this life. Don’t focus on money. Before I was diagnosed, I was very career-driven and realized that money will find its way to you. But those little tiny things in life, even just feeling the way my dog’s fur is soft and fluffy, I can’t feel that anymore. Those things are what I miss, and I wish I could tell my former self to really appreciate those and never, ever, ever take those for granted.

I guess really the only advice I would give would be to eat healthy and try to maintain weight rather than being heavy and trying to, how can I put this, move a body or catch a body if it feels like falling if it’s overweight. That’s really about it. And heed the doctor’s advice as to what to do and what not to do and how to deal with overheating and things like that.

I tell them, “Do what you can when you can, as much as you can, because you’re going to lose it when you get older. Enjoy what you have now.” How would I describe it for when I’m older? I feel like I really can’t do as much now. I feel like I’m trapped in this body that hates me. But I feel like I’m losing in a losing battle. I wish I had done more than when I was young-

I would tell my younger self or tell myself to lose weight. Don’t wait until you’re older to lose weight because added weight creates so many other problems, and being that I am not as mobile as the normal person, it makes it 10 times more difficult for me. I would describe it as just take care of yourself more and become weight conscious.

I would tell myself just to expect that everything will be okay instead of worrying so much. To do your own research and take advantage of treatments and personal ways of dealing with these things, take care of your health, and then be relaxed about it. Even if things don’t turn out the way you want, they could still be okay. And I would describe how I feel now is much more calm and accepting and the realization that it wasn’t the way… My life didn’t turn out the way I wanted it to, but it’s still okay.

I could go back in time and meet my wife earlier to tell her about her stuff. I would tell her in her early life, she didn’t do much for it because it didn’t affect her like it does now. So I would tell her to be prepared and to find doctors that are concerned and maybe treat herself earlier with different medications. If I could find myself earlier and tell me about it, I would explain to myself what I’d be looking in for, with her issues, I guess. I’m not sure.

Oh so when I was first diagnosed, I would say, knowing what I know now, don’t overdo it as much as I did back then, because I went too far in what I did and wore myself down too much. How I feel now because of it, I still sometimes overdo it and I know that I’m overdoing it, and I pay for it big time. Should not do that.

Well, when I was first diagnosed, it was very difficult for me to believe that because my step-brother, who also has multiple sclerosis, got it from his mother who is not my mother and she passed away from it so I knew what it can do to a person. Advice to anyone with MS is just keep going, do your best. That’s all you can do. And I feel like I’m still Kelly, just a little bit slower and life is what it is so you got to keep going. It’s all you can do.

I would have told myself to run as much as possible because now I can barely even walk far distances. That has really changed things. I’d complain about PE class and having to run laps and stuff, but now I would do anything to go back and have to do that because I was able to. I would also tell myself that things are going to get really tough, but you’re strong and you can get through it all. I would also tell them now I do feel a little depressed and anxious a lot. I wouldn’t sweat the small stuff. It’s really hard to deal with this disease, but you have to deal with everything and you have to live through it all, and you’ll be strong enough to handle it.

Live every moment, do everything you want to do now. Don’t put it off for later because you won’t be able to do it later. The best advice I would give her at 20 years old, I didn’t know, at 40, that I’d feel like I was 80.

Well, before my diagnosis, I was almost 400 pounds. After my diagnosis, I chose to have weight loss surgery. Therefore, I don’t think I would’ve changed anything because my diagnosis with MS basically forced me to take my health in my own hands and get healthier, lose the weight, and to be more active. I say for that, I’m pretty much thankful, I guess, that MS came into my life because it helped me to take a look at myself and to get my health in check. Yeah, I wouldn’t change anything.

That is a hard question. I would probably tell myself that I’m a lot stronger than I think I am. And that when the diagnosis happens that life is not over, that’s just how you adjust. Because you can feel worn out, and tired, and aggravated and frustrated all at the same time, but you still need to be there for your loved one and for yourself. Eventually, you have to understand that you have to take time out for yourself as well.

I would tell myself not to be scared and to just stay dedicated to my health and never stop fighting and being my own advocate because only you truly know how you feel and what is best for you.

If I can go back in time, I don’t think I could change anything. And the advice I would give myself would be just to live my life. It would be no advice I would give myself but just to live my life like I did. And how I feel. I mean, things have changed in my life, but I just look at it as everything happened for a reason, and God give you the things in your life for a reason. And the reason I was given this is to show me the things I needed to change or things I needed to do. But at the same time, it was a good thing.

Yes, I was diagnosed when I was 41 years old, raising a family, I had small children and it was an emotional roller coaster for me. Even though I was on therapy and I was doing everything that I could to manage my MS, now when I look back, I see that it did affect me emotionally more than I knew it did. I’d been suffering with a lot of depression and I’ve been having a lot of therapy and reading about depression and I realize now that I was in the depression long, long time ago and I didn’t realize it. I was scared to go anywhere because I was afraid I would end up having an attack. And when I say anywhere, I mean going on vacation and things like that. It affected me emotionally and I think if I would have looked back then, I should have probably got a little assistance with that back earlier when I was in my 40s but I’ve settled into knowing that I have this illness and I am doing better emotionally because of my therapy.