My History With Exercise & How It Affects my Disability

Hi, friends. In today’s post, I’ll share some of my history/experience with my disability and exercise, detailing how exercise can and can’t help me bear my condition and emphasizing the importance of consistency!

My History With Exercise

I have been dealing with the progressive symptoms of Friedreich’s Ataxia since age 11; I’m 25 years old. Over time, my balance and coordination have continuously worsened.

Like many teenagers, I couldn’t care less about fitness ten years ago. At some point, though, my parents purchased an exercise bike for our house. Though my memory is fuzzy on the details, I started riding the bike every morning before school for 20 minutes. Riding the stationary bike seemed to bolster my coordination.

A couple years later, I moved into an apartment with a friend as I began my second year of college. The complex had a gym, and since walking was only getting harder with time, I started working out in the gym. I was clueless on the subject of fitness, a fact reflected in my workout routines.

After exercising in that gym for a few months, a black man with pecks as big as my head approached me during a workout. He introduced himself, explaining that he was a personal trainer and wanted to work with me. [He later told me that he had noticed something “off” about me and wanted to help, since he has a heart for the mentally and physically disabled.]

This photo is over four years old…man, time flies!

Fast forward six years–I have been training with Tobias, who now feels like an old friend, ever since then. In that time, I progressed from walking unassisted to walking with a rollator to using a wheelchair; however, I’ve also gained a wealth of information about exercising with machines and/or my own body weight. I’m also the most physically fit I have ever been.

What Exercise Can & Can’t Do for my Disability

My disability is both genetic and neuromuscular, so I cannot do anything to prevent deterioration of my coordination. You could say that the balance part of my disability is “set in the stone,” hence our relentless efforts to find a treatment and a cure. (Consider making a donation)

I have found, though, that exercise combats other parts of the disease. First and foremost, exercise keeps me physically strong. Having toned muscles rather than atrophied muscles affects almost every part of my daily life. With atrophied muscles, even the most mundane tasks like using the bathroom would be difficult. With toned muscles, I can lose my balance and fall, yet I’m able to scoot to a grab bar and pull myself back up. Just a fact to put this in perspective: when many other FA’ers fall, they are stuck on the ground until a caregiver or 911 comes to help them.

Hey, look, it’s me with the red face as described below 😉

Exercise is also good for my heart. FA patients experience cardiomyopathy, the weakening and/or thickening of the heart muscle. According to the latest test results, my heart is alarmingly thick, yet it beats like an ox. All these years, I’ve been exercising my heart muscle right along with the other muscles, and it hasn’t been a walk in the park. There are times when I’m halfway crying during the workout; it hurts for something thick to contract quickly, repeatedly, for minutes at a time, not to mention the ridiculous effort required even to hold my trainer’s hand and walk across the room.

I am straight-up ugly when I work out–face red as a tomato, hair pulled back unceremoniously, mouth agape and panting, possibly snot or tears on my face. But this is what it takes…just to deteriorate at a slower rate.

The Importance of Consistency

Consistency is key to this equation. If I skip a few days, my body becomes sluggish, and the next time I work out, I’m already struggling with things I could do the week before. I sometimes have a dark chuckle and think, “Dang–if only others were as committed to their jobs as you are, FA!” It’s like pouring water continuously in a cup with a hole; I have to make that metaphorical pouring my lifestyle, or the metaphorical cup will be emptied quickly.

Life is good!

But what’s truly dark is to contemplate where I would be if I never worked out at all. Would I be in much worse shape because my muscles atrophied? I’m grateful that I don’t know. My crossing paths with Tobias had to be part of God’s plan.

Given the depressing tone of this post, I want to end by saying that while I have my epic-breakdown-pity-parties from time to time, I’m blessed in many ways, so I am joyful overall. 🙂 But exercise is crucial for my health and happiness!

Thanks for reading! Are you disabled, and/or do you exercise? Let me know in the comments.

46 comments

  1. Inspirational as ever, Lily! Your determination to keep fit is amazing. I will certainly consider making either a one-off or regular monthly donation to the FARA charity. I always look forward to your Friday posts, they land around 6pm here in the UK and reading them is always a good way to start the weekend. Thank you for all you do!

    Liked by 1 person

  2. This was such an encouraging post! You have ever right to breakdown once in a while, even those without a condition do so! The important thing is that you keep getting back up, which is obvious that you do as you seem like such a determined woman!
    I have turned to fitness after being diagnosed with depression about a year ago and it has changed my life/attitude. All I can say is that I’m doing better now than I think I ever have been in my adult life and I haven’t had to go on a single anti depressant! This is a complete answer to prayer…God is good!

    Liked by 4 people

    1. Thank you, Heather! So true that we all fall down (literally or figuratively, ha) but what matters is whether we can get back up. It’s awesome that fitness helps with your depression–boosting your blood flow and triggering those feel-good hormones!

      Liked by 1 person

  3. What HOPE you bring in the things you do. You are striving to be the best you. With God’s help you will achieve despite your condition and have the best life you can. Ty

    Liked by 2 people

  4. Glad you’ve found a good routine that works for you, Lily!
    Exercising is something I definitely need to get doing more frequently and consistently. I currently most enjoy doing fun activities with my family in order to maintain some level of fitness. When alone, I typically resort to muscle-building exercises.
    This post was a good encouragement for me to persist in trying to form a healthy routine myself.

    Liked by 1 person

    1. Thank you, Emma! It’s good that you can engage in activities that are fun yet give you a workout at the same time; you might be more likely to do that sort of thing vs. doing a straight-forward exercise routine if it comes more naturally/easily. I hope you find a routine that works!

      Liked by 1 person

  5. I probably need to exercise more with both cardiac issues and diabetes. I sometimes ride a stationary bike and walk but too much of each gets me out of breath so I can’t do as much as I need. I usually count walking all over the grocery store as my weekly exercise. Plus I need an accountability partner/trainer to stay motivated.

    Liked by 1 person

    1. Having a trainer is definitely motivating, so maybe you can find an accountability partner. But if you were to get into it, it might become addicting in a way because of the feel-good hormones. Other small things like a motivating playlist or new tennis shoes can boost motivation. Even if it’s just taking walks, I hope you will do some form of fitness since you also have cardiac issues.

      Liked by 1 person

  6. Your post is humbling to someone suffering from nothing more than age.
    I know I don’t exercise as much as I should, but I’ve been making a point of getting on the walker in the mornings since my husband’s triple bypass, in the hope that I will motivate him into getting off that sofa (although it’s not that easy, bless him, when medication slows down his heart to the point of needing a half-hour sit to recover from taking them).
    since I’ve been away in New Zealand visiting my daughter he’s been out working on a caravan project, hosing out fishpond filters… his blood pressure is down to manageable levels and his blood sugar almost normal (he’s diabetic too). He’s done it for himself, rather than for me nagging him. Now I need to push myself to do the same…
    Your example shames me

    Liked by 1 person

    1. Wow, thanks for sharing that awesome testimony of how exercise benefited your husband’s health! I know that must have been so tough with extreme heart issues. Maybe you could start off small, such as going for walks. 🙂

      Liked by 1 person

  7. You have such a positive attitude and I admire this so much. I have severe chemical and mold sensitivity. I don’t talk about it much because I had a lot of negative experiences with judgment but it impacts my life each and every day. I appreciate your vulnerability and opening up. Blessings!

    Liked by 4 people

    1. Thank you, dear! I hope you consider writing about it because WordPress is such a supportive place, and there may be others who could relate. But I understand having an illness that affects your life constantly and also dealing with others’ judgement!

      Like

  8. Lily,I think this post is sent to me by God from you.. I been tato for a long time about exercising and the importance of it for him. His Doctwant hime exercise walk ride a satationary bike something. He will at times but not consistant. I know he tires easily but can build up his indurance with time. Maybe you could talk to him about being more consistant, letting him know how much it has helped you. He admires you as I do and we both think you are a very special young lady. We love you. Thanks Deb

    Liked by 1 person

    1. Thank you so much, Deborah! I love you and Roy, too. I know it is really hard to exercise if you have a hard time breathing. Like you said, he could start small and slowly build up endurance over time, especially now that it is warm outside. I will be happy to talk about it if you ever want to at church.

      Like

  9. I loved reading your exercise process and for shedding light onto the kind of obstacles you face! The story of your personal trainer is really sweet! I admire your inner strength and persistence. Keep on going, Lily!! 💜

    Liked by 1 person

  10. Hi Lily, I’m Lauren. I just came across your post and think it’s great! I have a condition called CIDP and I feel you on the exercise struggle – in our own ways ofc. I’m just getting back into the gym (my med does allow for breaks) but it really does feel like I’m starting from scratch again. I feel inspired by what you said about consistency so TY, maybe this time I’ll keep it up. 🙂

    Liked by 2 people

  11. Lily, thank you so much for your writings and inspiration. My son has Down syndrome so getting him to move around and exercise is always a challenge. A friend of mine just started an exercise class for people with autism. I want to start one for people with Down syndrome. As my Grandma used to say – keep on keepin on! God bless you!
    -Mike
    https://marriedstrong.com

    Liked by 3 people

  12. Thanks for the encouragement to keep trying. What a blessing Tobias noticed you! That was no accident and I’m grateful you continue not only to push yourself but others. I see the hard work on IG especially. May people continued to be blessed and you showered with blessings and strength, dear sister ❤

    Liked by 1 person

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