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What A Day With Mitochondrial Disease Looks Like

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“So, how do you spend your days?” This is a question I have difficulty answering when asked and doctors seem to ask it frequently. Other people ask, too — I think it’s usually more out of curiosity than malicious in intent. How do you describe one day when your days are so variable? But that is what happens when you live with a chronic and unpredictable disease. I live with mitochondrial disease which is an energy disorder. My today will depend on what I did yesterday and if I have a lot planned for a certain day, I will need to rest up the day before and my body will force me to rest the day after.

And then there are always fluke days that no matter how much I take care of myself, my body doesn’t want to cooperate. Sometimes if there is something I have planned and am looking forward to, I can push through on adrenaline and crash later. You can fully charge your iPad today and tomorrow and do completely different things with it. One day you can watch lots of videos and the battery drains quickly, and then the next day read a few emails when you wake up, play a few games later and space out your use of it.

My symptoms of dysautonomia may be set off immediately after a shower and upon standing for the next few hours I immediately have a pre-syncope moment, feeling like I’m going to faint if I don’t immediately sit down. And it’s not like I have good days and bad days. I may do something and then feel worse for a little while afterwards, and then hopefully recover enough to do something else if I rest for a bit. My body usually doesn’t let me do things for too long. I constantly push myself and pay for it later because I don’t know I did too much until it’s too late.

Household chores tire me out. I like to do errands or make plans earlier in the day because there is a better chance I won’t run out of energy. Yes, I require a lot of down time watching TV and reading, but when I can I like to see friends and family, especially my young niece and nephew.

I think a healthy person would have a difficult time describing a day in their life as well, it depends if it’s a weekday or the weekend and so many factors go into it.  When I’m asked this question I usually think of that current day, often at the doctor’s office. Appointments can be draining and often the only thing I do that day. When I’m up for it, I try to exercise when I first wake up but some mornings I wake up and know just making it to the CVS drive-thru will be an accomplishment.

I’ve never been one to complain much. I didn’t take sick days when I was able to work and had many years with perfect attendance during my school years. I’m a hard worker but these doctors don’t know me and usually don’t try to. The next time someone asks what I do all day, I will cringe and become defensive even though I don’t owe anyone an explanation. It’s hard because I find myself trying to prove how sick I am and how much the debilitating symptoms hold me back.

I was doubted during the period when I first became ill in my 20s and searched for a diagnosis being referred from one doctor to the next but for the most part have been believed and taken seriously over the past 10 years. After all, the test results don’t lie. That was until just recently I was referred to a doctor for what I thought was to monitor the lesions in my brain and my neuropathy but he doubted the level of my illness. He didn’t care to see copies of previous MRIs or even want me to take my shoes off to check the feeling in my feet. He suggested I think about going back to work. This doctor doesn’t know me or know that there is nothing I want more.

I stopped working just around the time I was finishing my master’s degree and after working so hard for it, I would love to put it to good use. If I thought I could be working, I would be. I worked so hard and it’s no fun having to stress about finances like you do with a chronic illness. A career is a big part of someone’s life and even when I hear someone complain about little things at their job, I long for something as fulfilling as going to work every day. After this appointment I was angry and then I did some thinking and started doubting my symptoms. I try to push through, but they stop me. You can’t push through mitochondrial disease. There’s only so much that can’t be done if you are nauseous and/or dizzy. I need to eat and don’t know how my body will react afterwards, will I be OK or need to curl up in the fetal position. Pain is exhausting, as is everything else.

When I do too much my body lets me know. I get warning signs like my hearing going dull and my heart rate and blood pressure, all that autonomic stuff getting worse if I do too much (which for my body isn’t much at all). I am always fatigued and I get sore and achy after a busy day. I think of myself as a compliant patient, I always try what the doctors suggest to help me. I push myself to exercise, trying a variety of very restrictive diets. I do it all.

I get it, I don’t look sick so assumptions are made. I am not faking this and will not allow anyone to have me doubt my very real and disabling symptoms. I am not exaggerating them in my mind. The next time I am asked what I do all day, I will try to answer but will emphasize the variety of chronic and unpredictable symptoms I experience on a daily basis.

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Lead photo by Thinkstock Images

Originally published: January 27, 2017
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