My Turn to Tell My MS Story

By genya

3 min read

Hey, everyone! So... although it has been more than four years that I've been reading your inspiring stories, for some reason, it is only now that I have decided to be an active part of your community. (Yay? I hope!!) Now it is my turn to tell my story, I believe.

Somewhat a perfectionist

I was diagnosed with RRMS four years ago, when I was only 20 years old. Somewhat perfectionist back then, enrolled in a competitive nursing program. Having a beautiful family, a fiancé and lots of plans for a bright future, I was restless and harsh on myself quite often. As I’ve previously mentioned, the program was quite competitive and many requirements had to be met by me in order to not only be admitted, but also to thrive and to achieve good results. Hence, the reason for my bad habits regarding my health in the past. I needed to sleep? What is sleep though? I needed to rest and calm down? How? I was determined to push myself to the edge.

I never considered myself exceptionally smart; however, I knew I was exceptionally patient and stubborn. Could it be related to my horoscopic sign? Taurus is described as someone quite stubborn in its nature. I guess I never heard an expression that in order to take care of others, one has to take care of oneself. I never did think about it, until the first relapse occurred.

Then everything went wrong

There has been many ups and downs these past four years. My first relapse was a double vision, or as we know it, diplopia. It occurred suddenly, in the middle of the day. I literally refused to believe that I am having a serious neurological problem, when this issue have occurred for the first time. I was 20 years old. I wasn’t used to be taken care of by others. You see, in my head it was always others who were the patients, others needed help, not me. I was a caregiver. So much of unnecessary pride, isn’t it? And then boom. MRI done, full of brain lesions. My neuro confirmed: it is MS. Congratulations. Guess what I did? I disregarded it; emotionally that is. I pushed away the state of shock, dismissed the need to address the problem. I told myself that, well, it's not too bad, I am not going to die, I will just have to find the right treatment and I will be all right. I can manage it. Yup, denial, full mode. I can do it.

Fast-forward two months later... BOOM

So fast-forward two months later... BOOM. Depression. All I was holding back for months, all I didn’t want to think about broke through to the point I could not manage anything anymore. And, I had to reduce my workload significantly. All I could think of was “I just need to rest, I just need to rest, I just need a break”. But, I couldn’t have this rest while continuing the same mode de vie. So I did what was the best for me back then, and I finally took care of myself. Later on, other relapses did occur, including numbness, paresthesia, diplopia again. My optic nerve had to suffer quite a bit, cognitive issues (lots of them), at times debilitating fatigue. My depression didn’t last forever. It lasted long enough, however, to make me realize that from now on I will have to adapt my lifestyle and listen to my body.

I am doing the best I can

I changed my eternal slogan of “push through the pain” to “I am doing the best I can.” I am eternally grateful to those who were supportive during difficult moments in my life, even if they were not truly able to understand what exactly I was experiencing. MS is truly a disease with many invisible signs and symptoms. Therefore, it can get quite lonely at times.

So , finishing on a happier note, I guess?

Although MS sucks and screws up so many things in our lives, and it affects all of us differently, can you believe that at some level I am grateful for having it? Sounds so weird and so, so wrong. What I mean by that is, every single day now, every single opportunity I can take now every second even, is so much more treasured. I am grateful for this life that I am living. Grateful, I can still experience so many things. I don’t know for how long and when things may change drastically again, which amplifies my gratefulness for today. This gratefulness was unfortunately not present in the past, when I was so obsessed with over-achievements. So, I Stop for a second and enjoy that very instant of my life. Because it is so precious.

Thanks for taking time reading this.

Take care of yourselves, and have a great day, today, tomorrow, and always!

Jain

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.

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Erin Rush Community Admin
Hi Jain! Thank you for taking the time to post a part of your story here! You share your journey so eloquently! You share a lot of wisdom near the end of your story. I love the change in your mantras and how you have found the good in each day. I think it's fabulous that you are so positive and willing to share what you have learned with our community. I hope you experience a very long break from your MS symptoms! Thank you again for sharing and for being a part of the community. Best, Erin, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.
1. genya Member
 Thank you so much for your support ! It is greatly appreciated and truly means a lot. Jain.
f5hwo4 Member
You are young and can attack this disease aggressively. I was 55 when I was diagnosed but I am still fighting the good fight. I hope that find a cure in your life time. Potter
mtoddh Member
Jain, hang it there and try not to let depression become the king. Personally, I get my recurring depression that all too often makes me feel suicidal. But I thank the Lord that I can ride it out, knowing that the evil mood monster will give up for now!
weezy13 Member
Dear Jain, thank you so much for your honest and deep insight that because of ms we often lose the ability to appreciate those precious moments in our lives. I am usually an upbeat person despite the many trials this disease has put me through, so I suffer from depression like many with ms and your shared thoughts helped me look at my life in a better light today and hopefully tomorrow too. Thanks
dorry Member
Thank You Jain for telling your story in such an articulate way that made interesting reading. As one matures their mental outlook changes and I guess in the beginning you couldn't think any other way. We grow and learn and adapt. You are doing this so well and such an encouraging outlook that will help others. In life our trials can make us or break us. Make us BITTER or BETTER. Your challenges have made you better. You chose to fight to see the good come out of something bad and see the roses in life and the stars in the sky and I guess you are a Winner. It is so easy to focus on the pain when there is nothing else and it is the pain that can take one down. Having good days and bad days gives one a break in between to allow us to find some Healing. Keep up your good spirits and value every day because being alive is a gift. I hope you have better days than bad one's and that life treats you well. Best wishes
CommunityMember287 Member
Hi Jain. Thank you for taking the time to write "your story" with MS. It was like reading my very own story. I was a perfectionist to the point of being OCD. I entered into a competitive nursing program and earned my bachelors; a BSN. While I was not quickly diagnosed with MS, I was diagnosed with severe Mono in my 3rd year of University. I had to make many hard choices because I was also working full-time while I earned my degree. Looking back I probably had MS at that time. Spring forward to age 43 when I was finally diagnosed after suffering through so many odd symptoms and experiences, and then optic neuritis. I enjoyed a wonderful career in nursing from my graduation until 43. I retired disabled then after failing to be able to return to the OR'S Open Heart Program. It took me 5 years to accept the diagnosis and 8 separate neurologists opinions. I wish I had been as wise and accepting of my diagnosis as you were. The end of your letter spome most to me. I also have NEVER regretted my diagnosis and would NEVER change anything surrounding it. I, too, am grateful every single day. I focus on so many blessings that I have received because of, and inspite of, my diagnosis. I think we are both champions. It was a pleasure to have a re-look in the mirror by reading your story. Best wishes and God Bless. You are a fighter; Perhaps because you are a Taurus but I am a Gemeni.
Mike Russell Moderator & Contributor
Hi Jain Oh my I so hear you and totally understand. I know some just can't accept I have MS and how come me. I sure don't like MS however it surely did refocus my vision of what is truly important in life. Those around you, sun rise, sunset, nature, and just enjoying each and everyday. It changed how I view life and what is really important and for the best as hard as it may be for some to understand Thank you for sharing Mike Russell
CommunityMemberbf36ee Member
Thank you for your post. It takes a while however, look at my diagnosis as a unique way of making me slow down and enjoy the beautiful nature around me. Not getting upset like I used to over petty things. Thankful for every day that I wake up and can get out of bed and walk. I have PPMS so not too many surprises just a gradual progression of slowing down in walking and never did get my vision back in one eye due to optic neuritis. As a 55 year old who didn't get diagnosed til 42, I feel that my 20's were still full of energy and whatever you call a normal life. Then for 5 years before diagnosis, had huge bouts of fatigue and just not wanting to go anywhere with my husband or family. Would rather stay in bed. Finally after going blind in other eye when the vision came back in the first eye I got the much awaited and asked for MRI. Within 3 days I had them calling and knew the news wouldn't be good. I think a certain period of denial and anger and depression happens when you hear you have an incurable disease where sometimes the meds make you feel worse than the actual disease. I wish you many days of being grateful and learning to live the new normal. Sorry you are having the flare ups continue. We all have our own path and way of dealing with this. Good luck and enjoy every good day you are given. As I say you can always be hit by a bus and no one knows what is ahead so enjoy today and Happy Thanksgiving to you!
1. Lori Foster Member
 Happy Thanksgiving to you as well, <inline-mention username="CommunityMemberbf36ee" user-id="6678939"/>! - Lori (Team Member)

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