About Me

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I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Thursday, October 27, 2011

Clinging to CF

So after a discussion with my husband a few nights ago and some serious soul searching...I have come to a realization.

I've been in denial about this whole mitochondrial disease issue. I've been so focused on CF, and raising money and awareness that I have not acknowledged the other serious disease in my life. I've talked about it, sure; but I've done little to fund raise or spread awareness. (At least compared to the stuff I've done for CF)

It occurred to me with VX-770, that a pill for me might be around the corner and I got excited. I've spent a lot of time this week going over stuff I'd like to do, going back to work is one of the things on that list. But then I realized...I'm not working because I get frequent infections, I don't have the energy and my muscles cramp and ache. According to the mito information; those things can all be caused by mitochondrial disease. I knew my muscles were a result of the mito but I kept telling myself everything else could be CF related.

To clarify; I didn't delude my self because CF is less serious in anyway shape or form. I did this because I can explain cystic fibrosis. Because when I tell people I have CF and they ask, "What's that?" I can actually answer. When I tell people I have a mitochondrial disease 95% have no idea what I'm talking about. And when they as, "What is that"; I explain as best as I can a disease that my doctors don't even fully understand. People look at me like I use this as an excuse to be lazy...so I only discuss it with people who already know me and understand mito. When I meet people I don't say "Hi I'm Chrissy and I have two genetic diseases". When health comes up I usually just say I have CF and another genetic disease that is not well known. If people pry by asking what it is, I tell them it is a muscle disease. It sounds better than saying, "It is a disease in which my body doesn't produce enough energy on a day to day basis. So the symptoms can vary from person to person."

I mean typing it, it reads as a straight forward answer...I just wish it was so straight forward that people would not judge me.

Monday, October 17, 2011

Conserving energy

I haven't blogged in a while, mostly because I haven't had the energy. Yeah...that's right. I said "energy". It takes a lot for me to sit down and organize my thoughts here. I have found myself; lately, having to pick and choose my activities a lot more carefully. Here is a list of some of those things that I have to choose between most days:

Things that take energy
1. Getting out of bed
2. Getting a shower
3. Getting dressed
4. Coming down the stairs
5. Getting my medicine together and prepping treatments
6. Going into the kitchen to get something to eat
7. Eating breakfast
8. Cleaning up after breakfast
9. Going to the bathroom
10. Making phone calls
11.Logging in to school and participating
12.Walking back from the kitchen to the sofa.

I think you get the idea (a few of these I have to do more than once). Some days I wake up and can get 5 or 6 things done while others (less often) I can maybe even help out by starting a load of laundry or *gasp* I might have enough energy to spend some time with friends.

I do not consider myself a lazy person, but I'm not sure how many of my friends and family actually get how much energy it takes me to do the smallest task. Yesterday I had to take a shower with my husband, not for anything kinky mind you...but because I couldn't wash my hair. I'm not kidding either. Most people don't really know how bad it is because I honestly don't talk about it much.

I just feel bad about it. Embarrassed. Frustrated. Angry. I would rather not get the looks filled with pity, or they say "What about trying this or that?". My condition isn't something my doctors seem to know much about so, I don't like trying to explain something that even the "experts" have problems understanding.

These things are why when I have the energy I'll take my daughter shopping (even if I have to keep her out of school). This is why when friends or family call and ask for help or say they want to spend time with me--I'll move heaven and earth if I have the energy.