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9 Years with MS - A Guest Blog

Posted June 11, 2015 and tagged with blog, guest.

by Caroline Kyriakou


It’s been quite a while since my last blog post. As someone with MS, you have good days and bad days. Lately I have been struggling with insomnia and fatigue. I am sure most of you can relate with that. At this time I am still working full time (I am a receptionist in a periodontal office) and it can be such a challenge with these specific symptoms. Most people think fatigue is just being tired, but with MS it is so much more. Luckily soon I will be starting a new medication for fatigue that I am hoping will help. I have tried other medications in the past, but am hopeful that this one will work! It has been hard to keep up with blogging when I don’t have any energy. And now my neurologist has told me no caffeine after 2pm. That has been a real challenge!!

I have also been struggling with the idea that I “look so good” that I feel like people around me forget I have this invisible disease. Next month, July, will mark 9 years since my diagnosis. It feels so strange to type that I have had MS for 9 years! It seems unreal still after all this time. It is so difficult when others cannot see the symptoms we experience as MSers. People think you have to be in a wheelchair or using a walker. I think about MS all the time, as it has completely turned my world upside down. But, I know others don’t really think about me having MS at all. At 35 most of my outings are monthly infusions, neurology checkups and MRIs. Not how I imagined my mid-thirties!

As I continue to deal with all that comes with a MS diagnosis, I try to stay positive, but it is not possible all of the time. As MSers, we all go through ups and downs. I find talking to others with MS, whether at a local support group or on Facebook, really helps. As much as family and friends want to understand, they just can’t. Talking to someone who knows what a numb limb, tingling or vision problems is like, well, nothing can compare to that kind of camaraderie.

So as I approach my 9 year anniversary with MS, I would like to thank all the friends I have made along the way. Without you, I don’t know where I would be! So, here’s a toast to friends!

Caroline Kyriakou was diagnosed with MS in 2006. She enjoys reading, blogging, and is working on her first book. Caroline volunteers as a mentor through MS ActiveSource. She also is an administrator of a Facebook MS Support group, Friends Against the MonSter and writes other Blogs on MS Relief.

Comments

  • Way to go Caroline! Not a fun anniversary but you so glad you use this occasion to continue to inspire people all around you. FYI- the MS community totally gets how you can be facing insomnia and fatigue at the same time!

    Yvonne said (5 years, 4 months ago)
  • Many thanks Carolline ! I enjoyed reading your blog... I can totally relate to you.

    Cheers,
    Carlos

    Carlos A. said (5 years, 4 months ago)
  • THANKS FOR SHARING YOUR STORY WITH ME, IT'S GOOD TO SEE THAT PEOPLE WITH ALL TYPES OF DISEASE ARE STILL MOVING FORWARD KEEP DOING WHAT YOUR DOING, I WAS DX WITH MS IN 2006, I WORKED 8YRS WITH MY DISEASE AND THIS PAST NOVEMBER I WAS LET GO, I BEEN SAYING THAT I WANT TO WRITE A STORY ON MY LIFE, SO I THINK I HAVE A CHANCE I HAVE NOTHING BUT TIME, KEEP DOING WHAT YOUR DOING STAY POSITIVE.

    Sabrina Coleman said (5 years, 4 months ago)
  • I just want to thank you for sharing your story about MS with the world. Someone always has to judge you for your invisible disease. Don't let that upset you. You know what pain your in. Keep your chin up, you've have meds that helps the pain. I just want to say and glad to meet you. Remember to keep up with the writing. Bye for now.

    Steve Phillips said (5 years, 4 months ago)
  • Thank you for writing this Caroline!! This piece was an inspiration to me. I tried writing about my diagnosis with MS but honestly I don't remember much about it. Just bits and pieces. Plus I don't think I'm much of an inspiration because MS has not been too bad to me lately as I'm still stable except for the debilitating fatigue!! If the fatigue would just go away then I would be a happy camper!! Take care of yourself Hun!! Love you!! ❤️❤️

    Jennifer Falbo said (5 years, 4 months ago)

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