I find fatigue is the most challenging dynamic of my chronic illness for others to understand. As busy adults in the modern world most people are not getting adequate sleep and rest and are truly tired. However, tired from bust days and not enough sleep, and life stress while not fun, is not debilitating as it is in life with chronic illness. I remember being a healthy young adult (pre-acute symptoms) and feeling tired at times working full time and going to college, keeping up with a social life etc… but I was always able to push through for the day or a few days until I could crash and get some down time to recover and rest, and I would be back as good as new.
In life now with serious chronic illness however, that is FAR from my reality! Now if I do not sleep well or get overly stressed by unpredictable life events, or have to push myself too hard for a day or two, there is no pushing through it, there is no one-day turn around to recovery. Now not being well rested can mean I do not have enough energy to get a shower that day, or enough energy to feed my dog and cat, or enough energy to walk to the kitchen to get my breakfast without needing to use my wheelchair. I have been so fatigued at times I have trouble swallowing, shortness of breath, heart palpitations, and I have even been unable to read or write due to the exhaustion of my eyes and the resulting blurred vision.
Please if you have a friend or a loved one with a chronic illness, please think twice about the difference between tiredness in a healthy body in a ‘normal’ adult life, and the absolute crushing, disabling fatigue experienced by those of us with chronic illness.
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