The single most stressful part of my life with mitochondrial disease is NOT the illness itself, or the pain, or doctors appointments, tests, hospitalizations etc. etc… no, the most stressful part is just managing day to day life and the fact that all of the world runs on a schedule and my body does NOT!
I can be hit so suddenly with severe muscle weakness, fatigue, breathing difficulties, auto-inflammatory attacks of pain and fever which render me completely non functional for hours or days. This prevents me from doing any type of structured work, and volunteer work, partake in scheduled extracurricular activities, planned social engagements with my fiancé’ friends, or family, and even makes it extremely difficult to make it to scheduled non-virtual doctor appointments.
If I could have just one wish granted to improve my life in regards to my health, it would be that things would stay more consistent and stable… the severity and frequency of flare-ups of symptoms makes life feel like I am constantly on a roller coaster ride, with no exit. If this is you as well… my best advise, is to talk with everyone in your life and do your best to make them aware of the drastic and completely unpredictable swings in your life, and go into every scheduled event letting them know there is a good chance you will have to cancel, and give yourself prior permission TO CANCEL when your health requires it. Give yourself lots of love and peace, it is extremely hard to live through this type of unpredictability… in the wise words of Bruce Lee - “be like water making its way through the cracks. Do not be assertive, but adjust to the object, and you shall find a way around or through it.”
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