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Once upon a time, long long ago…

I’m 58 years young and was diagnosed with RRMS at the tender age of 25-ish, before MRI was being used. Based on multiple factors my GP/PCP tenderly “diagnosed” me – accurately! – before sending me to a neuro who (in 1980) didn’t have a whole lot to offer!

RRMS however was kind: It relapsed (blind!) remitted (fine!) relapsed (legs!) remitted (okay!) and stayed pretty benign. My parents lived close by and helped ALOT.

Flash forward to the New Millenium when (20 years later) symptoms and exacerbations increased in frequency and intensity– yet I was still able to “hide” and work full-time until 2010. Now on Disability, I am still relatively “healthy” (if you call debilitating fatigue, vertigo and double vision ‘healthy!) and live independently. So far.
MS Awareness Month
I typically skip most articles about ‘symptoms,’etc, since I feel I know as much or more than the ‘experts!” I am in the capable hands of a world-class MS Center in a large city; have been treated like gold with the finest of care. I did Copaxone; quit DMD’s reluctantly since ’06.

It has taken me two years to adjust to being home all the time without work – it’s not all bad to go shoe-less, bra-less, etc., or to sleep as late as I want! But quality of life is an issue for many of us: the isolation; the typical DECREASE in income, and/or dependency for help. Grocery shopping is a killer.

I am so fortunate to have friendly, helpful, compassionate neighbors; a daughter nearby, and a decent credit rating for “when life happens!” I count my blessings daily and there are many. At least as many blessings as there are PILLS!

My hope for the near future is that BG-12 (if that’s correct) becomes FDA-approved as my neuro has offered it as the next line of therapy for me. Fingers crossed for it to happen soon.

I trained as a “peer counselor” with the MS Society before I became disabled so I feel able to talk with others if they need to vent/talk/ask questions.

Between my 30 years’ experience with MS and my own aging, I anxiously watch the National and international societies for news and updates. Happy to find this site!

Thanks for reading; I’m just so BLABBY after my coffee!

Joy
Atlanta

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

  • Lisa Emrich moderator
    6 years ago

    Joy, You have such a positive outlook while adjusting to changing circumstances. Your enthusiasm and experience will be a blessing to others. Thank you for sharing some of that with us. I hope that you will read and comment on others’ stories and help make this website the wonderful community is already is becoming.
    Lisa
    P.S. Coffee has become my favorite eye-opener, no matter the time of day.

  • Joybo author
    6 years ago

    Lisa:
    I have been told by others how “positive” an attitude I portray. Maybe since my name is “Joy” I do like to think on the brighter side. I admit to having a little help in the form of anti-depressants/anti-anxiety meds!

    I did want to comment on the “coffee’ thing:
    Although I take NUVIGIL daily to keep me “alert,” I find I still wimp out by dinner time. I’m “weak” by 5:00, “exhausted” by 7:00 and a VEG after that.
    When I recovered from my last MS “attack,” friends started asking me out socially again, to movies, etc.
    First, I turned down anything that didn’t take place before 3:00 pm!
    Then (full disclosure here)I took a chance on trying
    5-HOUR ENERGY, which I first explored online before buying a bottle or two.
    I didn’t take it right away; but waited for a “need.”
    Sure enough, my girlfriend wanted me to see an opera film which started at 6:30 PM (and usually lasts 3-4 hours.)
    Instead of refusing, I decided to try using 5-HOUR energy. (It has caffeine, vitamins, additives..)
    I chugged a bottle down at 5:30 pm, left for the opera, and enjoyed every moment. My eyes didn’t even close at the boring parts, and I drove home alert and happy.
    It didn’t make me ‘jumpy,’ or irritable, and I slept fine.
    I’m not recommending this OTC product to just anyone; I wouldn’t trust it if for instance I had a heart problem.
    But if PROVIGIL and/or NUVIGIL lose their efficacy, I want people to know that (so far anyway) 5-Hour Energy is a cheap and seemingly safe fix for OCCASIONAL use as needed. It has actually improved my quality of life!
    (And sure beats falling asleep at the wheel!)
    (PS: I do NOT work or have any relationship with that company. Just sharing a helpful tidbit.)
    Cheers.
    Joy J.

  • Lisa Emrich moderator
    6 years ago

    Joy, I also take advantage of anti-depressant, anti-anxiety, and pro-alertness medications. Very important part of my treatments. I’ve never tried any of the energy drinks, but coffee has gotten me through evening rehearsals and lessons on many occasions.
    Lisa

  • David
    6 years ago

    Wow, it’s 9:00 pm and I’m still awake! Usually in bed by 8 sometimes even 7:30. This sucks. I wish you and everyone else out there a wish for better times!

  • Lisa Emrich moderator
    6 years ago

    David, Welcome.
    Sorry to hear that you were up later than normal, hopefully not due to MS being too obnoxious. But I’m very glad that you have chosen to join our community. My hope is that you are able to get back on track tonight, sleeping soundly.
    Lisa

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