Sometimes MS makes me feel older than my age

by Caroline Kyriakou

Since being diagnosed with MS in 2006, there are changes I have had to make to my life. For me, they have been fairly easy to make, but it did take some time to figure out what needed to happen.

Mostly the changes have had to do with my social life. These days if I am not in bed by 10pm, I pay for it the next day. I work full time as a receptionist in a periodontal office so something as simple as meeting friends for dinner after work can throw me off.

On the weekends, I try to do my errands early and if I meet friends, I try to meet them for lunch or an early dinner.  Of course there are times when I make exceptions, and just plan to have the next day to recuperate, even if it means taking a day off from work. That doesn’t happen too often but there are events I don’t want to miss out on, like if there is a concert I want to go to or some other special occasion.

Knowing that my body needs time to get back to “normal” has made things much easier for me.

It can be difficult explaining to friends why I can’t stay out as late as they would like, or why I can’t do anything after seeing a movie in a theater (though I have just about given that up) or go out on a day that is nearly 100 degrees! I found that this has gotten easier over the years as I have been able to discover what works best for me. I explained to friends that it wasn’t that I didn’t WANT to do these things, but I physically couldn’t handle it. Some friends were more understanding than others. Fatigue is one of the most common symptoms of MS and being one that you can’t see makes it even more difficult for people to understand. Everyone gets tired, but MS fatigue is an entirely different feeling.

MS also makes me feel older than I am when there is a lot of walking involved.

About 8 months ago, I bought my first car! Before getting my car I would depend on other people for rides, mostly from my Mom (thanks Mom!) and take public transportation. Even with transportation at my finger tips, sometimes there is still a lot of walking to do to get around the city of Boston. My last relapse, over 4 years ago happened after walking too much. My legs go numb and get tingly after walking even short distances and standing tires me out. Even moving my arms in a repetitive motion makes them get numb and tingly. After resting, the symptoms go away, but it’s never fun to experience.  Of course when it is warm outside everything is worse and right now Boston is having some very hot weather — which is why I am home typing this right now by my AC!

So… I am thrilled to now have a car of my own! I still use the “T”, Boston’s subway service, to get into the city and have the added luxury of going wherever I need to on my own time with my car. With my 6 year diagnosis anniversary upon me, I am glad I have figured out what helps me feel as well as possible and with my new car I feel that I have gained a new found independence.

I guess MS doesn’t ALWAYS make me feel older than my 32 years!

About the author: Caroline was diagnosed with MS in 2006. She is currently inspiring those with MS through blogging, her volunteer efforts as a mentor at MS Active Source, her Facebook group; Friends Against the MonSter and also you can ‘like’ Caroline’s page on Facebook right here

Linda

About our Co-Founder: With a bachelors in Social Work, Linda is 53 years old, happily married with eight children and 17 grandchildren. Diagnosed with MS in 1995 and now having accepted and truly embraced her new reality, Linda has created MSrelief.com. She is dedicated to proving that joy can be chosen while living with Multiple Sclerosis. Linda specializes in helping others, especially those with MS attain the lifestyle, independence and happiness amid living with MS.

12 Comments:

  1. So freakin’ true!

  2. I have to go to bed so early too often at 9 on work nights. I love my sleep and need a lot of it. Great post!

  3. Man Caroline, you could have been reading my mind as you wrote some of this. I was dx’d in ’93 so it’s been almost 20yrs for me so I totally get the learning curve around combining any kind of social life with MS. In my experience, I’ve learned that those people in our lives who don’t have the emotional room to understand our unreliability because of our health, don’t last long. Not because they care about us any less than those who stick around, rather because some people just don’t have the emotion/physical/spiritual “makeup” to be a support for someone who’s life is as unpredictable as our’s can be.

    BTW… I totally get the numb & tingly thing like you describe Caroline. It radiates up the back of my legs and up to the top of my head when I walk any distance; and in my arms when I use them too much. I take Nortriptyline for it. My neuro says it’s called “neuropathic pain”. I’ve been blessed though because since I started walking again a few weeks ago, down 40+ lbs, the tingly in my legs isn’t an issue any more!

    Now I’m not saying that my MS has improved because of the weight loss, but obviously carrying that much extra weight around would have been compromising my body’s ability to cope with the MS.

    Thanks for covering the impact MS has on our social lives Caroline! Seldom talked about.

    • Trish,
      Congrats on your weight loss! That truly is an amazing accomplishment!!
      Now I am learning from you… I haven’t heard of Nortriotyline so I will have to do a little research. 🙂
      Glad you enjoyed my post!!

      • Good luck with the Nortriptyline Caroline, it works wonders for me. I’ve been on it so long that I forget how painful the condition can be. Tried going off of it a couple of yrs ago and…let’s just say that I went back to taking the meds and thanking God for medications that work.

  4. Hey Caroline! Greta to read your post and experiences, I have a sister who has MS and she recommended me to your blog. It has been so inspiring to read the posts here.. Everything will be fine with all of you, you all are in my prayers!

    • Hey Vic! I know that Caroline will be replying to your comment but I just need to sneak a reply in too! I need you to know that I appreciate your prayers and confidence that all will be well with all of us! I believe that too! I’m sorry that your sister also has MS, I wouldn’t wish it on anyone but I know we are all in God’s hands and even though this is a situation that we would never have chosen, we will be fine~
      ~Linda

    • Thanks Vic! Glad you and your sister have enjoyed the posts! Also, thank you for your prayers! All the best ….

  5. nice going Caroline Sabrina and I are proud of you and your willingness to get on with life and do the things that make you happy
    you go girl
    have fun with the new car
    Do I see a road trip to the west coast in your future?? lol
    we love you
    Dean.

    • Thanks Dean!
      I appreciate your and Sabrina’s support!
      I don’t think I would drive there, but I definitely would love to come visit you!
      I know you have offered in the past and I plan to take you up on your offer someday!
      Love you both too!
      🙂

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