Monday, September 19, 2011

What Mitochondrial Disease Means to Me, Part 2

I am going to try my hardest to type tonight.  The last couple of days have been filled with my number one symptom, the symptom that I will talk about in today's installment of "What Mitochondrial Disease Means to Me":   FATIGUE.

Fatigue is the number one symptom of mito.  Let's go back a bit and discuss what mitochondrial disease is.  Think back, waaaaay back to biology class.  It wasn't too long ago for me since I'm so young and all, but it may be a little bit more difficult for you oldies out there.  Mitochondria are in almost every cell in the human body (red blood cells and one other that I can't remember right now do not contain mitochondria).  Mitochondria produce the energy that cells need to do their "job".  They convert the oxygen we breathe and the food we eat into energy, otherwise known as ATP.  Therefore, if some of the mitochondrion are not working, the cells will not have the energy they need to do what they need to do (i.e. lung cells help us breath and transport oxygen to our blood, muscle cells help us move our bodies, breathe, etc.)

So, I have Mitochondrial Disease with deficits in Complex I and III.  What the hell does that mean, you say?  Well, the mitochondria use a 5 step process, or 5 complexes, to convert oxygen and nutrients into energy (ATP).  If even one of those complexes does not work, the whole process gets screwed up.  It's like a power plant.  I can't be too specific because I don't know exactly how a power plant works, but I do know there has to be steps to the process of creating power.  If one or more of the machines in a power plant break down, the power plant is not going to be able to produce power, or at least not very well or not as much of it.  That is the same thing that happens in Mitochondrial Disease.

Another analogy I've heard is to imagine running your whole household all day with a AA battery.  You wouldn't get very far.  There wouldn't be enough light for your kids to do their homework.  The stove or microwave wouldn't heat up enough to fix dinner.  You wouldn't be able to watch the news on TV to increase your knowledge of what's going on in the world.

Since I'm discussing fatigue in this post, lets use the battery analogy again.  Try using a watch battery to power a Power Wheels car.  It wouldn't get very far.  Well, I'm the Power Wheels and I'm using a watch battery.

This watch battery is, however, rechargeable.  But, as you can imagine, even fully charged, it still doesn't get the Power Wheels very far.  That's me.  I can do a limited amount of activity.  However, it doesn't take long at all before I have to recharge.

When I get up in the morning, my body takes awhile to get going (my battery/engine needs to warm up).  I can usually get myself some coffee, then rest.  After 20 minutes of rest, I will go fix myself an easy breakfast, get my pills, eat it, then I'm ready to rest again.  Once again, after 20-30 minutes, I'm ready to brush my teeth, get dressed, put my contacts in, and sometimes even make the bed before I have to rest again.  I am able to get out and about.  However, just driving makes me tired and weak.  Most people don't realize how many times you have to move your right foot from one pedal to the other in the course of a 20 minute drive.

This, in addition to my weakness (which will be the subject of another post) and pain, is the reason why I use an electric wheelchair.  I am able to walk, but walking takes a LOT of energy.  I'd rather save my energy that I would use walking to use doing other activities.  Sometimes I use my chair not to save energy, but because I've already used too much.

I thought my wheelchair would upset me, make me feel embarrassed, and I wouldn't want to use it unless I absolutely have to.  However, I am so thankful for it.  It is so nice to be able to conserve my energy for things I enjoy doing by using my wheelchair.  Even getting around the house in it helps me save so much energy for me to use to do other things like cleaning up, or spending time helping my daughters with their homework.  I am so happy to have such a huge fatigue-reducing device that I am not embarrassed by it at all.  Instead, I am thankful that I can "stand" and talk to people for more than 2 minutes because I am actually sitting.

The best way to describe the way someone with Mitochondrial Disease feels in regard to energy is by sharing "The Spoon Theory" with you.  If you haven't read it before, please do so now.  It will also help you understand why I will sometimes say that I am "out of spoons for the day", or "making the bed this morning took up too many of my spoons."

So please take some time to read the spoon theory by clicking HERE.

In addition to my posts about how mito affects me, I will be posting videos everyday about Mitochondrial Disease or people dealing with it.

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