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20th Anniversary!

I have lived with MS for 20 years. The first 15 years were a piece of cake and very manageable. Stay out of the heat! Deal with the occasional limp! Feel fatigued, so take a nap! Take your meds! But otherwise, life went on normally. Room mother at school, domestic engineer deluxe, loving wife to a wonderful husband.

Then about 5 years ago, I hit the MS wall very suddenly and violently. Everything became extremely difficult — walking, bathing, dressing, eating, driving, thinking. And the list goes on and on, as you know. My days as a domestic engineer deluxe were over. My symptoms have continued to gradually decline. But life is still fantastic. My husband of 25 years has been a rock throughout this ordeal. Whenever MS presents us with another challenge, he steps up to partner with me on figuring out solutions. Despite these challenges, I am thankful and happy each day for so many incredible things: getting out of bed and standing up, putting one foot in front of the other, having no pain, two beautiful daughters, a husband who is my best friend. And, also for the many positives that enhance my life: a fantastic support circle, scooters at the grocery store, airport wheelchair service that allows me to travel regularly.

To my MS friends out there: I am not perfect. I have the occasional “pity party” day where I cry and yell at the MS gods for cursing me. But I have found that daily life is much better if I smile and focus on all my many blessings. Look for your blessings!

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

  • anitascott
    1 year ago

    My husband’s MS has been cured after 35days treatment with CBD OIL. I am sharing this testimony to help others. if you are a MS or Cancer patient get to this guy in Cali via email..(tplug05 at gmail dot com).He is a life savior.The same thing he did to my Husband, He can as well do it for you.

  • Deborah
    1 year ago

    CBD Oil is now legal in all states so look online and you will find many places to buy it no matter where you live. I get mine from healthyhemp.com. They ship to all states. I love the balm and use it on my feet and legs at night.

  • Leiah
    1 year ago

    Hi wolffl001, thanks for sharing this story. I’m fairly new to this forum but I found your post quite relevant to my situation. Namely, my mom got MS when she gave birth to me 21 years ago. It had been diagnosed fairly quickly so she was given the Betaseron therapy. She was all good and functional just as I am, but for the last 7 or so years the MS got it’s toll. We live in Europe and I study abroad in the USA so I get to see her every winter and summer break. Every time I come home she seems more worn out. She’s got tremors in her arms, legs and head, speech and swallowing difficulties (to a tolerable extent) and so on. She got divorced from my dad years ago and she lives with my grandparent. They are VERY traditional and their stance is that if she’s not able to do something, no one should ‘force’ her (i.e. if she needs some water they’ll get it to her so she remains sitting for most of the day). As she’s not getting enough constant support, she’s not very willing to exercise, gets easily irritated etc. I’m her only child and I believe that I’m the only one who can make a difference at this point… But I would like to know how? Whenever I suggest her to do something (i.e. exercise on our home bike) she either ignores the conversation or gets mad at me because “I don’t understand her, she’s not able to do it”… I would appreciate any feedback and advice. And congrats on having such a positive attitude! Enjoy your life! 🙂

  • ClaireElizabeth
    1 year ago

    Just a thought is there an MS Support group close to your Mom. I am sure if she can talk to others even by phone perhaps this will help. Maybe her parents might meet other MS caregivers.

  • wolff001 author
    1 year ago

    Leiah, I wish I had some great words of wisdom for you. Your mom and grandparent are in a difficult situation. Your mom, no matter how old she is, will always be the “child” in this scenario. It is normal human behavior for her parent to take on a total caretaker role. I know that when I visit my own mother, I get rather lazy and easily fall into the role of the helpless child who relies on mommy for everything. Your mom absolutely needs her parent to help her, and I feel for both of them. But it is so important for your mom to keep doing things that she can SAFELY do. Very important, not only for her physical health, but for her mental/emotional health. There is nothing more depressing than feeling helpless and useless. It’s a terrible cycle to fall into! Is it possible for your mom to get some physical therapy where they can teach her some very light exercises in order to try to keep some strength? Also, an occupational therapist can review your mom’s home and make suggestions for safer “activities of daily living.” Does she have a good neurologist who can encourage your mom and grandparent in this endeavor? Getting advice from a professional (and a neutral 3rd party) can be a good kickstart. And venturing out into the world is always good for the spirit!

  • Gristy56
    1 year ago

    Put steel wire wool in a plastic bag. about 500g inside your pillow case on top of your pillow and sleep normally. Not Brillo pads, unless you like the smell! You will start to feel much better. I did!

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