Last week was Mitochondrial Disease Awareness Week. I tried to share mito facts here and on facebook. I wasn't as successful as I was last year because I had other stuff going on that I wanted to share and/or get off my chest. So, I'm continuing it past the official awareness week so I can still inform people about Mitochondrial Disease.
At the end of the week last week I asked everyone on facebook what they wanted to know about Mitochondrial Disease. I actually got the idea from another mito facebook friend who did the same thing. I thought, "what an excellent idea!" Instead of me telling you all random things about mito that you may or may not already know, I'll ask everyone what they want to know. Two facebook friends answered the call and asked me questions. Instead of answering the questions in the limited space I have on facebook, I decided to answer them here. Unfortunately, Mitochondrial Disease took a hold of me yet again the last 4 days. Therefore, I'm just now getting around to answering their questions. Better late than never!
The first question was "How does this disease impact your daily life the most?" Good question, Shaylene. This disease affects me a lot more drastically than what people might imagine if they have only met me once and/or see me out and about. That is why it is called an "invisible disease". You may not know it by the looks of me, but I spend 90% of my life in a laying or reclining position (i.e. in bed, couch, recliner, etc.). Due to the malfunctioning of my autonomic nervous system, I am unable to tolerate being upright for long periods of time. I have a VERY difficult time with standing. I am unable to stand for more than a few minutes at a time. Sitting upright with my feet below me causes a lot of problems as well.
Because of this, I had to quit working as an emergency room nurse in December 2009 and haven't been back since. I am also affected by exercise/activity intolerance. Walking up a flight of stairs is difficult for me. I have to rest for a couple of minutes after doing so. Going to a store to buy something or going to a doctor's appointment really wears me out. If I'm not careful about the amount of activity, it will cause me to go into a "mito crash". I explain mito crashes here - Crashes and supply and demand.
So, prior to getting sick, I was a very active person. I worked an average of 4 twelve hour shifts as an ER nurse. I ran 5Ks, 10Ks, and 2 half marathons while also lifting weights 3 days a week, all to stay healthy. I was the type of person who never sat down. On my days off I enjoyed spending time with my kids and getting housework done. Yes, amazingly enough, I actually enjoyed doing housework. That's what happens when you're a clean freak with a Type A personality. Now, I am barely able to fix myself lunch some days because I'm too worn out to do so. I have had to teach myself how to stay content while sitting in one place for hours at a time while also trying to find things that I enjoy doing that can be done from a sitting or laying position.
-"I seem to myself, as in a dream, an accidental guest in this dreadful body." - Anna Akhmatova