How my Relationship with Exercise Is Changing Due to Disability Progression (Dealing with Guilt & More)

Hi, friends. Today’s disability chat discusses how my relationship with exercise has changed as my disability, Friedreich’s Ataxia, has progressed.

A nagging sense of disappointment

In the past, I’ve written about the importance of exercise for people with limited mobility, shared exercise routines, etc. (All available under the category “Exercise“). I still workout devoutly, but my dynamic with exercise is transforming because the symptoms of my disability worsen with time; limitations such as fatigue, poor fine motor skills, etc. have become more debilitating.

My post-workout, cool kid vibe

I’ve explained in the past how exercise provokes the body to release an array of feel-good hormones, making a workout beneficial to one’s body AND one’s mental state. But this year, the feeling of “badassery” I’ve always gotten from exercise is often plagued by a nagging sense of disappointment. I feel frustrated because I’ve had to cut down the amount of reps I do in a certain exercise or because things are getting harder than they used to be. For instance, my left ankle has inexplicably gotten very weak very rapidly, so when I walk around the gym with my trainer, it “gives out” repeatedly; about half the time, my ankle rolls so badly that I’m on the floor, grasping it and whimpering in pain, unable to put my weight on it for a few minutes.

Two tips: eliminate guilt & adjust/adapt

A blogging buddy who primarily writes about invisible illnesses, Invisibly Me, has written about things we need to stop feeling guilty for–being less productive when we are sick or tired, etc. I need to apply her advice to myself with exercise. I need to stop feeling guilty that my progressive condition is *gasp* progressing and just appreciate my body for all it can still do. I need to stop feeling guilty for trimming down rep counts and cutting out things I can’t do anymore; instead, I should be proud of myself for working out at all (since plenty of people without my obstacles don’t!).

This little guy knows all about adapting!

Aside from eliminating guilt, I need to adjust/adapt. There is a fine line between what I need to just accept and what I can actually change, and I have to quit feeling sorry for myself to find that line. [How many life situations does that statement apply to?!] Given that I can walk (with strong assistance) if not for the ankle issue, I need to find a way to prevent it from rolling–something to stabilize it. Update: I’ve just ordered an ankle-brace-esque contraption, so pray this helps!

My relationship with exercise is changing because my body is changing. But if I want to ditch these feelings of disappointment, I need to:

  1. Accept what can’t be changed and relinquish feelings of guilt for the inevitable.
  2. Discern how I can adjust/adapt to the inevitable and enact changes that will make life easier.

Thanks for reading! How is your relationship with exercise? Let me know in the comments.

26 comments

  1. I’m so sorry exercising has been hard for you! I agree as I’ve also felt discouraged with running (in a FAR more minor sense then you will be feeling), with my asthma. Sometimes it gets so bad that I feel like I’m drowning at night and that’s my cue to give my body rest. I’m glad you’ve been able to take the pressure off yourself. I really hope your ankle brace helps.

    Liked by 1 person

  2. My daughter has always been active but since suffering a slow-growing form of ovarian cancer she has been frustrated by her lack of energy. This cancer does not respond to chemo but is being managed with hormone therapy, which seems to be stabilising things. She has found that exercise first thing in the morning improves her energy levels for the rest of the day (something apparently backed up by recent research).
    Those ankles can be painful can’t they? Mine have worsened almost overnight, but it’s the knee that’s giving way on me due , I suspect, to age-related arthritis (I have yet to take these to a doctor for diagnosis, but I suppose it’s time).
    Feeling guilty about disability or illness-related adjustment is as pointless as feeling guilty about ageing. As you say, celebrate what you are still able to do and make the most of any aids going that will make life more productive

    Liked by 2 people

    1. I’m glad your daughter is finding a way to persevere and using exercise to boost her energy! Thanks for sharing. Ankles and knees can be fickle; if only we appreciated all they do before they started to give us trouble.

      Liked by 1 person

  3. My relationship with exercise is lackluster at best! Ugghhhh! Kudos to you for pressing through the pain and pressure, Lily.

    I’m sorry you’ve had such a challenging journey but am so thankful to see you’ve chosen to not quit, even in the acquisition of the ankle contraption. I’m encouraged my dear, and look forward to continuing to read about how you overcome the hurdles. ♥️

    Liked by 1 person

  4. Hi sweet Lily, So sorry tp hear this news. I keep praying that sooner rather than later they will get the new durg approved and patients can start benefiting from it. As for exercisewell I could be doing more, I stay pretty busy and do get some in but not near what I should. You take care and hang in there.Love you Deb

    Liked by 1 person

  5. I’m sorry to hear that the progression of your disability is affecting your relationship with exercise. I can only imagine how hard this must be. My disabilities would be fairly mild in comparison and I never had much of a relationship with exercise, in fact reading about the fact that you are still pressing on despite the progression inspires me. I know that I need to exercise more and take a more healthy approach.

    Like

  6. That sounds so difficult. I am thinking of the videos I’ve seen of you pushing yourself, and your limits change like you said, but I have no doubt you continue to push yourself.

    I’m really glad that you are working on acceptance. You are a beautiful inspiration and the Lord uses you to encourage others. You definitely need that encouragement, too! From someone just at the sidelines watching what you do, it’s enough and more. I pray you are overwhelmed with patience and acceptance at every new challenge. That the Lord continues to use you 🙂 keep showing us what endurance is, and how it’s different for everyone. No matter the battle or journey ❤

    Liked by 1 person

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