Would I Have Believed

Probably not. I’ve been diagnosed with Multiple Sclerosis for ten years, recently I’ve been struggling with it. After having a discussion with a fellow battle buddy in this fight I decided to write a letter my newly diagnosed self could have read. We both decided they would have said, “Not me,” for different reasons. Her – she fought through it and didn’t do too bad. I, on the other hand, had some major issues because the medicine I was on was not keeping it in check. So at first I thought I’m on the downhill fast. Once I was put on the right medicine for me, I leveled out and progression slowed for awhile.

A letter to my newly diagnosed self

Dear newly diagnosed,

This is not a death sentence, although sometimes you will think that. You are not Annette Funocello, she had this disease before the recent drugs used to slow progression. You are not Montel Williams, or anyone else with this disease. You are who you were yesterday when there was no label or, more importantly, no MS. Keep your humor it will help. Remember weebles wobble but they don’t fall down, just bump into a lot of walls.

What now?

Now, that you have this diagnosis, WHAT NOW. I would stay off the internet before your first appointment with your neurologist (scary stuff out there). I would bring a support person to your appointment – always good for another set of ears or a shoulder to cry on. As far as medical do not forget your other body parts, sometimes we have other issues not related to MS. I wish it was one and done.

OK, over the first shock, now what? SCREAM, CRY, YELL, LAUGH, (repeat as often as needed) and CONTINUE to LIVE. Sometimes you will find out you need to slow down, this is OK. Use that time to notice things you were too busy to notice before. I have learned to enjoy hummingbirds (just wish I had 1/4 of their energy). I’m not sure if this will sound right; you might have to experience it. Push yourself in moderation. You are not super human, but you still have determination. Enjoy your abilities (balance, walking, thinking) because there might come a time that these things start to weaken.

My advice

Speaking of balance, this is something you need to figure out. I know when I started down this path I depended too much on aids and stuff because I was a little off, balance-wise. I did not know at the time I was giving in. My advice is continue to push yourself, remain active, and use the aids when you need them. I have a wonderful husband who nudges me sometimes but will also tell me to ease up when he sees me trying to be super human. Having a person in your life who can be an extra check on you is a plus. I have learned from him that I can do more than I thought. I am still learning though that the time has come when the disease has taken some of that ability. If you are attempting something in a group that could cause you either to have a flare or not be 100%, let the people know. It saves headaches all around.

Adapt to your changing abilities. Find someone who also has MS, not to compare symptoms, but to work through what is going on. Only someone who has MS can help understand some of the doubts, fears, and bruises. Do not get discouraged if his/her MS is better or worse than yours.

Most important continue to LIVE LIFE just remember sometimes you have to approach it from another angle.

With love and support,

Your Future Self

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • Lucylucylucy
    2 weeks ago

    I think you have a great outlook on things and wish you well in all that you do!
    Thanks for posting your thoughts.

  • katrina
    2 weeks ago

    What a great idea.

  • Erin Rush moderator
    2 weeks ago

    I absolutely LOVE this letter, buki6! Your advice is honest, pragmatic, hopeful, and witty. It’s the perfect blend of hard truths and loving support. I wish I could give this letter out for doctors to give to newly diagnosed individuals.

    I am so glad you took the time to write out your thoughts and share them with this community. This was spot on and fabulous!

    Thank you again for sharing! I am glad you are a part of the MultipleSclerosis.net community.

    Best, Erin, MultipleSclerosis.net Team Member.

  • buki6 author
    2 weeks ago

    Erin
    Thank you
    Feel free to use this letter just let me know if you do. I think it would have more impact if it was left as anonymous. I would be honored if I could make this journey a tad easier for someone.
    Darcy aka buki6

  • Jayme
    4 weeks ago

    Great letter! I find myself in denial on good days & struggling a lot on the not so good ones.
    My sis said not to put myself down or make jokes about feeling clumsy and older that I am. I mentioned that it’s my diagnosis & I prefer to laugh than cry. Stay strong!

  • buki6 author
    4 weeks ago

    Jayme
    Thanks for reading. I agree that putting yourself down is not healthy but making jokes it helps us deal with this diagnosis. I also prefer to laugh but it’s ok to cry every once in awhile. For example I now get extremely seasick so boats are out of the question and I will never get to see an orca in the wild again, I cry over this. You also stay strong

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