My Disability Experience: Fatigue

Hi, friends. In the first installment of this series, I discussed falling, and today’s topic is fatigue. Have you ever felt plagued by chronic exhaustion due to disability, insomnia, stress, etc? Let’s discuss!

Rest & Energy with Chronic Fatigue

Though I first began to exhibit FA (Friedreich’s Ataxia) symptoms around age 10, fatigue hasn’t been a notable issue for me until the last few years (I’m 25). At the Philadelphia Symposium this year, a presenter had asked patients, “What’s the first thing you would change about your condition given the chance?” The most obvious answer is “having the ability to walk normally again.” Just five years ago, that would have been my request. But the #1 response was actually “having more energy.” I understand that as I age. Right now, the biggest hurdle for my pursuing a career or having a child is not my using a wheelchair but my lack of energy.

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If I want to feel fully energized, I need over nine hours of sleep. I average between eight and nine hours a night. Requiring so much rest means I don’t have as much time during the day to accomplish things, but unless I want to feel awful, my sleep is non-negotiable. Even with ample rest the night before, I struggle to get through a day loaded with activities. If we’re out shopping, I’m losing my motivation after a few hours. If I attend church all morning then have an event that afternoon/evening, I’m capooped by the time I get home that night.

Physical & Mental Effects of Fatigue

On a physical level, fatigue is the amplified version of regular tiredness. Has the alarm ever woken you up right in the middle of a dream so that you were dragging worse than usual to get out of bed, and as you walked around, your eyes felt so heavy that you could just shut them for five seconds and fall back asleep? That is how fatigue feels sometimes. More often, though, fatigue is a combination of physical and mental effects for me. The intense exhaustion is perhaps less detrimental than the mood swings.

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Fatigue often manifests as a bad mood for me. I become irritable, cranky, impatient, and naggy. Lately, I’ve tried to hold my tongue more and step outside of the situation to assess my feelings. I feel upset–even on the verge of tears. Am I overreacting? Am I acting this way because I’m fatigued? Will I feel embarrassed for acting this way in retrospect? Being able to think rationally while feeling irrational is ideal, but it’s much easier said than done. [I wonder if some family members are reading this and thinking, “Oh, you try NOT to give in to your irritability? Could’ve fooled me.” 😂]

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Ironically, exercise is the best way I’ve found to combat fatigue. I always feel mentally and physically pumped up after a workout, and I get a surge of energy. Since I’m a wheelchair user, I often feel sluggish because of my general lack of movement compared to the able-bodied. Perhaps that is why getting my muscles flexing and the blood pumping through my body feels so rejuvenating. Moral of the story–we weren’t meant to be stationary all the time.

Thanks for reading! Do you experience fatigue? How do you manage it? Let me know in the comments.

48 comments

  1. This sounds familiar to me, yes. I don’t have the disability, but I can definitely relate to stress, insomnia, and fatigue. It usually comes in waves in that order, one leading to the next. I’ve found that exercise and meditation help a great deal for me in regards to stress. Still working on the insomnia, but all things in time.

    Liked by 3 people

  2. I love this: “Being able to think rationally while feeling irrational is ideal, but it’s much easier said than done.” I understand your frustration, but just take the time to get the rest you need and your QUALITY of life will be better. Enjoy every minute of every day! I love you! ( I only half-rolled my eyes at your ‘family’ statements, ha ha!)

    Liked by 2 people

  3. Thanks for sharing. Yes, I do experience fatigue. I have chronic atrial fibrillation and that is one of the symptoms.

    1. God is the key. Focusing on Him and not me gets me out of myself.
    2. Rest, sleep and rest. I go to bed at the same time each night. Get a good nights rest. Take naps if I need to.
    3. Push myself sometimes. I find it too easy to feel sorry for myself. I can do more if I get over it.

    Liked by 3 people

  4. I experience fatigue, especially when my body is filled with pain from arthritis. Our son has rheumatoid arthritis and fatigue comes on quickly. People who haven’t dealt with major fatigue don’t understand. I have been told to “take a nap”. That nap doesn’t always work. Praying for all of us who experience fatigue, for whatever reason.

    Liked by 2 people

  5. I want to say I just visited your blog; I’m sorry I didn’t visit earlier. I read your disability story and it was so beautiful and inspiring; you are helping so many people. Even though you have been so many hardships; you are taking that and using it to bring awareness of disabilities which is so incredible; I really admire you. I do not have your disorder but I have stomach issues and bladder issues which requires to use to bathroom all night and it keeps from sleeping ; I never sleep all the night through and I always feel fatigued with perpetual dark circles under my eyes but I know you’re fatigue is far different so I can’t even begin to compare. Some people don’t realize how debilitating fatigue can be; you want to go out and be with people or have a job and you just don’t have the energy. Its frustrating so I understand that portion. Great post; I look forward to reading more of your blog.

    Liked by 3 people

  6. I have an anxiety disorder. I take medication for it and that has helped me so much. I can’t believe that initially I was so reluctant to take it. But medication alone does not keep me at my best. When I’m on top of my game, I’m on a regimen of prayer, a balanced plant based diet, a carefully regulated and researched daily dose of herbs and lots of exercise.

    Liked by 3 people

    1. There is a stigma that people who rely on medication could just try harder or go for a run or something, but it’s an ignorant attitude. Many people’s quality of life has improved from a well-regulated medicine regiment. I would like to incorporate vegetables in my diet more!

      Liked by 1 person

      1. Yes. I was affected by that stigma even though intellectually I knew better. It’s funny how that works.
        I’m back to my healthy eating regimen and I feel a lot better than when I was primarily relying on medication. More importantly I am shoring up my spiritual strength. It all works hand in hand and nothing should be neglected.

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  7. I combat my issues with fatigue much like you. I try to sleep a full 8 hours, but I usually only manage about 6-7. Exercising daily helps A LOT. And hydration. I notice the more water I drink, the better my fatigue tends to be.

    Liked by 2 people

  8. I collect my husband from Papworth today after his triple bypass. Waiting for it was like watching him slowly dying – it was postponed once because there were no intensive care beds free. The lack of energy made him irritable and bad-tempered (with himself, as he isn’t one to get ratty with others). He hadn’t the energy to do his usual crosswords and sudoku. It got so bad he didn’t even have the energy to read the football results on his laptop. He would come with me to walk the dogs (in the car, dropping me at one end of the drove and picking us up at the other) but towards the end had no energy to walk around the reservoir at our destination or even meet us on the drove.
    After the op, I think he was disappointed that he still felt exhausted, although his heart was beating by itself and the tubes all came out. with everything else working by itself, the monitor picked up a flutter in his heartbeat, so he went down for an electric shock.
    The difference in his eyes when they wheeled him back spoke volumes – he was back.
    He isn’t the most energetic of guys at the best of times, but there’s tired and there’s chronic fatigue. the trouble is, it isn’t always easy for a concerned relative to recognise the point when one turns into the other.

    Liked by 2 people

    1. Thanks for sharing, Cathy. Sounds like you are both having a rough time, but it’s great that he is doing better than he was. I know how it feels to be the patient, but I can only imagine the unique challenges of playing the care-taker role!

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  9. Lily, you are so right! I still struggle with my limits due to fatigue from arthritis. I have to limit my activities daily or I pay for it the next day or two in increased pain and exhaustion. I find myself napping all through the day after pushing myself too much. Now I stop and take a nap when I need it. I have found the best way is to nap until I wake up and surprisingly it is only about 30 minutes. This allows me to get up and keep moving with a renewed sense of energy. I try very hard to get enough sleep (10 hours for me) each night, but with a changing schedule that isn’t always possible. I believe the fatigue causes bouts of depression due to the lack of ability to keep up with everyone else or keep up with my previous self. Walking helps along with prayer and trying to maintain good sleep habits. I will have to try the hydration to see if that helps also. My faith keeps me strong in mind and spirit and I have prayed more than once for the Lord to fill me with his joy and spirit because I did not have the strength to do it on my own. Blessings to you and your witness!

    Liked by 3 people

    1. I’m glad you are trying to keep up with your rest and supplementing with naps! We need you to be the best and strongest you that you can be. What you said about praying for joy and spirit when you did not have strength reminds me of Paul saying that His strength is made perfect in weakness.

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  10. Thank you for sharing.

    I pray that in your weakness may God’s strength increase and in times of pain may The Holy Spirit comfort you. I pray that you fall deeper in Love with Jesus Christ where your mind can’t think anything other than how much God The Father Loves you. May The Lord Jesus Make you a Light and salt to many. God be with you

    Liked by 3 people

  11. Lily, you’ve done a wonderful job describing the effects of fatigue. Chronic fatigue is debilitating and it absolutely 100% changes the way we live life, whether we want it to or not. I know when depression & anxiety have hit me, if I didn’t sleep 12 hours, I couldn’t function. It was truly non-negotiable, just as you have said.

    Having the mood change from a lack of sleep is disheartening. The way you described it is spot on. You try so hard to evaluate – is this really how I feel or am I just drained again? But, it is most definitely easier said than done. You speak the truth my friend!

    It breaks my heart that you’re having to go through this, because I can honestly speak and say that I know how you feel. Sometimes you feel so alone because you wonder if anyone knows what you’re experiencing. The enemy uses it in every way he can and that’s when we must rely on Holy Spirit to help us keep our sense about us 🙂 Hah!

    I love ya, Lily and want you to remember that you are such a powerful inspiration! So glad to have found you! God bless you, sweet sis.

    Liked by 3 people

  12. You describe exactly where I’m at now and most of the past six years. I feel down the stairs a couple of weeks ago with a n injury on already fragile body. I’m experiencing terrible Vertigo and no one understand why. Probably the concussion which means no telling when it will stop. I pull myself up and pat myself on back if I get one item crossed off me list. Thanks for a great post.

    Liked by 2 people

      1. My husband has been wonderful, he took two weeks off and still does about everything except blog. You can’t do much without two functioning arms. I’m on the mend and the surgery area on wrist looks great. Sending sunshine your way! 🙂

        Liked by 1 person

  13. There are times in caring for my Mom that fatigue will set in. Walking is my therapy…it is my exercise. It clears my mind and then I can spend some time with the Lord and let His word be my encouragement. In other words I can hear Him past my whining. I do admire your strength and focus.

    Liked by 1 person

  14. This is extremely informative and you’re so right, energy is what allows us to do so many things. I hear you on church days with multiple activities. I feel exhausted when it feels like everything I’ve done is run around doing something. I struggle with sleep sometimes either not feeling awake or not feeling tired. Exercise really does give us energy, I can definitely agree. Thanks for sharing, Lily!!!

    Liked by 1 person

  15. Lily, I so greatly admire you in your coming forward with your struggles with your disability. I feel like we so often leave out the hard parts of our life when we write our blogs or just talk to friends. You are amazing and a light in this big world in your willingness to do otherwise. I appreciate your sincerity so much ❤

    Liked by 1 person

  16. Yep. Long history with fatigue here. My best description is it feels like running in a swimming pool….all day, while trying to accomplish your tasks. Its literally exhausting. Mine came from several health issues. Dealing with, and correcting those, has helped immensely. Just this year I’ve actually been able to maintain a somewhat consistent workout schedule without having major fatigue backlashes. Yay!

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