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MS Killed It for Me

MS Killed It for Me

What are your hobbies?

Before I was diagnosed with Multiple Sclerosis (MS), people used to ask me what I liked to do for fun, and I always struggled to come up with an answer. What were my hobbies? What did I enjoy doing? I couldn’t ever really think of anything. Fast-forward about 8 years or so, and I can now see what I should have obviously said because there were so many things that I used to do for fun! But I think I just took them for granted to the point that they never even came to mind when I was asked that question. Over time, MS unsurprisingly made those things more difficult for me to do, until I eventually couldn’t even consider them as an option anymore no matter how hard I tried. One by one, MS seemed to pick off activities that I was capable of participating in and so I quickly learned to spot when I was losing a function that was necessary for something I enjoyed doing.

I didn’t want to wait for MS to take something

Now, I didn’t want to wait for MS to take a hobby from me. Now, I wanted to stop doing whatever it was that was starting to become difficult on my own, so that when I thought back on that activity, I would only have memories of me enjoying it and being good at it instead of having memories of me struggling to maintain it and eventually losing the ability to actually do it. So yeah, looking back, I can say there were many things I enjoyed doing but… eventually, as soon as I noticed that one of those things was becoming difficult and getting to the point that I could see how I might soon not be able to do it anymore, I would give it up on my own, so I wouldn’t have to live with the pain and frustration of knowing that MS had taken something from me that I once loved. For many things, I would rather just say that “MS killed it for me” than fight to hold on to it for as long as I could.

Bowling and MS

First, I want to give you an example of something I enjoyed doing but was taken from me by MS before I could give it up on my own. Something that was probably the first thing I lost to this disease that I would say really led to me thinking the way I do about whether I should give something up on my own or let MS snatch it away from me when I can no longer hold on to it. Bowling. Say what you want, but I loved bowling. When I was about 18, I worked at a drugstore and every Monday after work a group of the employees would all meet up at the bowling alley and rent 2-3 lanes, depending on how many people showed up. Most of us were just trying to have fun; it was just an excuse to go out, spend time with friends, and goof around, but a few of us got really competitive, including me. I didn’t have my own bowling shoes (Me? Slip and fall? Never!) like them, and I didn’t feel like I needed any of those wrist braces, but I did have a custom fit bowling ball (measured and drilled to fit my hand) with a weight in it to help it curve because, of course, I didn’t bowl straight, I had to take it up a notch and try to bowl like the pros.

I remember it so well

I remember the motion in my head so well: how many steps I took while staring down the lane, how it felt to balance the shifting weight of the ball while swinging it from in front of me, to behind me, to back in front of me before letting it go, and even the tiny movements I had to make with my wrist just before letting the ball fly down the lane to make it spin just enough to make it ride the very edge of the lane and gutter before curving back and hitting the center pin from just the right angle to get a strike. I never bowled a perfect game, but I was usually in the low to mid 200’s (a perfect game is all strikes equaling 300), and a few times I walked away with all strikes and spares! I still have the score print-outs to prove it because yeah, that was us, collecting score printouts.

After a major relapse

Anyway, I digress, what’s important to note here is how for me, bowling required so many intricate movements and a lot of balance. To be able to manage the shifting weight of the ball while swinging it from front to back to front and then let it go while momentarily balancing on one leg? I never thought anything of it at the time, but then a few years after MS came crashing into my life, a friend asked me if I wanted to go bowling. I had just recently suffered a major relapse that had put me in the hospital for 6 weeks, and I think she was trying to cheer me up but unfortunately, it kind of backfired. We went to a new alley that had just opened up and… I sucked. I could not even take the 3 large steps I always took before letting the ball go; I didn’t have the balance or coordination to make that ball do what I wanted and go where I wanted, especially when managing a swinging weight on one side of my body.

I didn’t want to ruin all my memories

I think I walked away with a score in the low 60s, and I was so depressed because that was the first major time I had tried doing something I was previously good at but could now not even come close to doing because of MS. So now when I think back on bowling? All my memories of me being good at it are stained by the memory of that day that I realized I couldn’t bowl anymore. The last day I bowled. I never wanted to feel that way again. I never wanted to feel like MS had actually robbed me of something I really enjoyed. I didn’t want to ruin all my memories of me being good at stuff with memories of me sucking at it and struggling to come to terms with the reality that my ability to do those things was now in the past.

MS didn’t take it from me, I gave it up!

After that is when I really started to try to recognize when something was becoming difficult enough that me eventually losing the ability to do it was probably inevitable. I wanted to cut ties with those hobbies before MS had the opportunity to override my memories of being good at them with memories of me struggling. At first, this seemed to work but eventually, I gave up so much that I started feeling like I didn’t have anything left to surrender, not on my own or to MS. I have since realized that this little tactic of mine was probably not healthy, physically or mentally. When dealing with a neurodegenerative disease like MS that tries to take away our ability to do things, the only way to possibly not lose them is to practice them.

You will never know unless you try

It doesn’t matter if you are trying to maintain your ability to do something fun like bowling or something purely functional like eating food with a fork without your hand shaking your meal all over the table, the only way to try to prevent the neural pathways in your brain that allow you to do those things from disappearing is to continue to exercise them. Yeah, in time, you may lose the ability to do some things, regardless of how much practice you put into it, but maybe you won’t? Maybe there is a chance that you won’t lose the ability to do something? One thing is certain though, if you try to preemptively give something up before MS takes it from you? You might be giving up the chance that you will ever be able to do it again. Who knows? Well, you for sure won’t know if you just stop trying as I have done with so many things. I regret letting myself think the way that I did for so long, because I might be somewhere different today had I fought to maintain those skills and hobbies but now? Now I will never know for sure.

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

  • LeeAnn
    6 months ago

    There is a lesson to be learned here for everyone : “Don’t take for granted what you can do today because tomorrow could be totally different.”

  • Matt Allen G author
    5 months ago

    Can’t say it any better than that!

  • BaltoRic
    6 months ago

    I was on a duck pin league for many years. At one time, here in Baltimore, duck pin was pretty much the only bowling people did. So much fun!

  • Matt Allen G author
    5 months ago

    I actually don’t know a lot about that but either way, it sounds like something I wouldn’t try to do, I just miss bowling too much anyway

  • Carol
    6 months ago

    Bowling was a favorite for me too. I started as a little kid bowling duck pin. Then, when I got older, I switched to 10 pin, which was a lot different. I got good at it and was in a league. Then there was a special group that I was part of – bowling for stamps (Top Value stamps). The balls were painted different colors which would indicate how many stamps we would win if we got those particular pins down. It was easy to fill up our books with TV stamps. It was so much fun. I would do that once a week, as well as with my bowling league. I know my balance and coordination suck, but I can’t resist asking my husband many times if we can go bowling. I guess he already knows I would be embarrassed,

  • Matt Allen G author
    5 months ago

    I have never heard of that, sounds fun! I was just focussed on trying to bowl a perfect game and master the whole curve bowling thing.

  • Machille
    6 months ago

    MS has taken everything from me. Luckily I can still make jewelry which is a hobby I have had for many years. I find it therapeutic as well. It keeps my fingers and hands from curling up. The fatigue and mental fog are the worst for me. Simple tasks become very difficult and complicated. My cognitive skills are changing all the time. My memory is pathetic. 5 minutes after someone tells me something it’s forgotten. I will ask the same question several times. My husband and friends get annoyed but never say anything except that they already told me and ask if I really don’t remember. They tell me again. Luckily for me, they are understanding. MS sucks. I am not on any treatment because I have had bad reactions to every one I tried. I walk with a 4 point cane because my balance is so bad. I have almost fell in the shower washing my hair because I will close my eyes not to get suds in my eyes. Then my balance will knock me into the wall or I start falling backwards. MS runs my life no matter how hard I try not to let it. That’s why I say it sucks. At least for me.

  • Matt Allen G author
    5 months ago

    Oh it definitely sucks for a lot (most) of us. I can’t close my eyes in the shower either or else I feel everything rushing to the side (I am falling). I will pull out my phone to look at the time and by time it leaves my pocket and I am holding it I find myself staring at my phone wondering why I pulled it out of my pocket. MS SUCKS FOR SURE.

  • chong61
    4 months ago

    If I close my eyes in the shower I fall backwards. I probably have the only shower with grab bars on every side and a towel hanging over the side to wipe water and shampoo out of my eyes. You learn to cope with showering with one hand and dropping the soap constantly. But….I am happy I can still bathe myself.

  • Shelby Comito moderator
    6 months ago

    Hi @machille, thank you for commenting. I’m so sorry to hear what you’re going through. I know many here can relate to these frustrating symptoms, which means you are not alone. Thank you so much for taking the time to share. We are grateful to have you in our community! Best, Shelby, MultipleSclerosis.net Team Member

  • rldoll67
    6 months ago

    Yes, MS takes it from you…first it took golf, then hiking/camping…I’m a big outdoors person…it took hunting and all forms of climbing…it took my independence and my most beloved activity, fishing. It took my career and professional identity. MS can strip you of your wealth, your freedom, your peace of mind…for some, it can wreck your life if you let it…so fight back and know that life is 5% what happens to you and 95% what you do about it.

    I still go fishing, though I have to have someone with me and someone who understands my condition and my somewhat unique requirements. All outdoor activities in summer, aside from an occasional dip in the pool are now off limits due to heat and Uthoff’s phenomenon.
    I tinker in my shop still and do what I can…takes a long time to do what to others would be minor things but I believe staying physically and mentally active is crucial in not only quality of life, but your whole outlook and ability to cope.

    Fortunately for me, when I was diagnosed I realized that I likely wouldn’t work until 65 years old and my wife and I began “positioning” our lives getting ready for the day my career ended…It ended almost a year ago and oddly to me, I have been fine with it. I didn’t think it would be so as work was such a part of me but it was fairly easy to let go…the only real frustration comes from having so much time but not the independence to enjoy it…and everyone seems to have to go to work!

    Many unknowns in front of people with MS for sure…hoping for remylination therapy in my lifetime and until then, we do what we do! A terrible injustice though I’ve come to understand…that is social security and availability of medicare…the waiting periods for coverage will extend beyond standard COBRA…if you can afford it and I learned that you can extend benefits at 150% cost for another year IF you apply for that extension within 60 days of your disability ruling. I didn’t know this until after the time period elapsed and my appeal was rejected…I have till June to figure this out and gain affordable coverage for my family and me….this is something I don’t hear much about and I will learn a bunch about the affordable care act in my immediate future!

  • Shelby Comito moderator
    6 months ago

    Thank you so much for sharing a bit of your story @rldoll67. The loss of independence is one of the hardest things MS can take, and I know many people here can relate. I deeply admire your perspective and how you find ways to continue to enjoy the things you love in life. I also wanted to share these articles as you’re searching for coverage in the hopes they might help: https://multiplesclerosis.net/what-is-ms/affordable-care-act/ and https://multiplesclerosis.net/living-with-ms/health-insurance-guide/ Thank you again for reaching out and being a part of our community! Best, Shelby, MultipleSclerosis.net Team Member

  • collena
    6 months ago

    I am still me. A drastically different me but still…me. I try so hard to not take it personally that it seemed to come for the things I loved most, like walking-first. My daughter and I would walk a mile to the park, soak up some sun then walk the mile back home. Not anymore.

  • Matt Allen G author
    5 months ago

    Yeah it seems like it went right for what I used the most, like, my eyes and ability to drive and then my fine motor skills and my ability to draw

  • chong61
    6 months ago

    MS takes away you.

    That sums it up in 4 words.

    To start with you think oh if I can’t use my right hand I will just use my left. Then later you can’t even open a jar with both hands. Always a great cook, stopped cooking because it was dangerous of burning myself. “MS took away me.’

    You lay in bed at night and your leg muscles are going spastic and you think I must have overworked today. Then after a couple of weeks, those muscles now have a
    a life of their own. I was always very active. ” MS took away me.”

    Math was always my strongest suit, now I can’t do the simplest equation. ” MS took away me.”

    “MS took away me,” but I am still here and I will continue the fight.

  • Matt Allen G author
    6 months ago

    Oh, definitely. One of the first things I remember hearing when I was diagnosed with MS was that MS tries to take things away from you and that you have to fight to not let it. MS has taken a lot of things away from me and made even more things more difficult and I will continue to do what I can to overcome it and not let it stop me from doing certain things but at the same time, there are certain things, like music, that will never be the same and I would just rather leave my memory of me being good at it alone than spoil it with a memory of me struggling to do it poorly.

  • Flowers For Algernon
    6 months ago

    I can relate. I told my girls the other did I was considering going for a jog (which is atypical to put it mildly). They asked me why, and I told them “Because I can.”. Even if you don’t have a health issue that may inhibit you, that realization should be taken in, and acted upon more frequently. #yolo

  • Matt Allen G author
    6 months ago

    I totally agree, people in general take so much for granted. I used to be so good at running, I was going to sign up for track in school but ironically I hated running and I didn’t want to do it if I didn’t have to. If only I knew that one day that choice would be taken away from me because now all I do when I am on a walk is wish I could still run.

  • Flowers For Algernon
    6 months ago

    did != day I told my girls the other day…

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