My Life with Multiple Sclerosis… I Got This

Life with Multiple Sclerosis...I Got This

By Penelope Conway

No one likes to think about where multiple sclerosis may lead…not even me. But I can tell you from my own experience, ignoring the possibilities of progression is to live in denial and will only set you up for defeat. Trust me, I lived there my first year after diagnosis.

I chose to deny what was happening in my life because I was afraid of the unknown. I’d heard horror stories of people who had MS and figured I would be giving in to the disease if I gave it room in my thoughts. I couldn’t have been more wrong.

Once I shifted my thinking from denial to acceptance, life actually got better.

Did it make MS go away? Absolutely not. Did I still have bad days, struggles and pain? Yes!

But in the process I discovered that MS was no longer the one in control. I took the reins to my life back and actually began enjoying each new day I had even when those days were filled of pain, struggles and challenges.

I also found myself planning ahead in preparation for the changes that may happen. Somehow, somewhere along the way we have been led to believe that planning ahead like that is a bad thing. But in actuality, it helps.

It’s important to think about things like what you would do if you needed an assistive device to help you walk or a wheelchair to get around in. How you would make it to appointments or run errands if you were unable to drive yourself around town. Ways your home could be modified to give you a more comfortable life free of obstacles and potential tripping hazards.

Planning like that will prepare you for the shifts that could happen…not in a woe-is-me, I’m-living-in-fear kind of way but in an I-got-this, I’ll-make-it-through way.

Thinking about the possibilities of what you may need to make life better for you in the future is necessary, but it’s even more important to live in the moment. Smile, laugh, dance, run, sing, live today. Don’t waste your time worrying about a tomorrow that isn’t here yet. Plan for it, be prepared for the shifts when they come, but don’t live there.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. 

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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Comments

  • Amanda says:

    Hi Penelope
    One thing I think we all some times forget is many (not all) of the challenges we face with MS are not that different than many people live with as they age. Our ability to walk with assistance or a wheelchair may be more likely with MS but look at the number of older people in your community using these devices? The ability to safely drive – again it could be MS or something else. My husband and I recently worked with an architect to design and build a house – we said it was our retirement house and even before the architect knew I had MS he recommend we make sure all needed living areas such as laundry, sleeping, bathroom, kitchen and living area be on one floor. A second story with extra bedrooms and baths was included but it is not necessary to go upstairs for anything we need on a daily basis. He widened the halls and doors to ensure a walker or wheel chair could go through as well as made sure the wall studs would support adding Handrails (not that any of these are added today). He said that what he sees is many people do not think about these things in advanced and when something happens they are caught unprepared. Our house was designed to support aging and MS and provide my husband and I the best chances of living our lives in our own home even if MS or age causes us issues. This is not to say that there are things that might make us need to move but we tried to address as many as possible (right now there are 3 stairs to get unto the deck but is it set to be ramped if needed) Denial will not change our future and planning as you said helps us prepare for it

  • Pam says:

    I am a 60 yr old female, I found out about ten years ago that I have fibromyalgia. Some days my joints hurt more than others, back hurts at the bottom, and since this Sept of 2018, my whole right leg vibrates all the way down to the bottom my foot. Or when I go to walk sometimes I trip over my feet. Are these signs of MS. I don t have any insurance coverage for an MRI the docs want me to get….what is the gummy vitamin called CBD, what does this do for your body. Any help would be appreciated thank ypu.

    • Angel Blair says:

      Hi Pam, thank you for reaching out with your questions, I’m sorry to hear of the symptom challenges you are experiencing. MS symptoms can range and vary from person to person,they can also look similar to and mimic symptoms of other health conditions, https://mymsaa.org/ms-information/symptoms/. Per your mention of MRI testing, MSAA offers an MRI assistance program that helps individuals who are eligible with the cost of MRI testing, if this can be of help for the MRI your doctor is ordering, you can find the program information and application on our website here, https://mymsaa.org/msaa-help/mri/. Per your question about Cannabidiol (CBD) gummy vitamins, this is a form of cannabis that is sometimes used as an alternative treatment for symptom management issues with different health conditions. This would be something to discuss further with your doctor. I hope this information is helpful to you Pam and if you have additional questions please feel free to email MSQuestions@mymsaa.org. Thank you and take care. Angel, MSAA Client Services Specialist

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