I mentioned at the end of my last post that I had a bit of insight recently that I wanted to discuss. As I have finally felt like my my "normal" mito self again for a few days now (I'm knocking on wood now), I have decided to visit the blogosphere and discuss with you all the insight I was referring to.
A few things have happened over the course of the last couple of months that have made me think about life... my life.
If you are a reader of my blog, you may already know that one of the biggest problems I've struggled with due to my chronic illness is relationships.... friendships, family, and even marriage (the latter just does not get discussed with the blogging world). In the last couple of months I have had some problems, again, dealing with friendships and/or some family relationships.
I have had a few people, anonymous and others, point out to me that I need to make an effort to reach out to people as well. Well, you're right. I do. Sometimes. There are times, however, in which I am too sick to do anything, including reaching out to others. During those times, I would like to at least hear from my friends or others who care about me just to know that I'm not alone. However, when I am feeling up to it, I do need to make more of a concerted effort to reach out to others.
After a couple of conversations (well, emails actually) and revelations with people who I believe to be my true friends, some things have changed, on my part and theirs. After revealing to them some of the things I feel and think, I believe that many of them understand me a bit better. They have been making more of an effort to reach out to me. I have been doing my part and trying harder to reach out to others as well. Unfortunately there was one, maybe two, people who didn't quite understand that one sided friendships don't work well for me. The good thing is, however, that I'm okay with that. I am happy that I have the friends that have shown me how much they care. And, at this point, I hope that no one can say that I haven't been reaching out to them.
Something else I've been thinking about recently is living my life... actually enjoying my life, not just going through the motions everyday. This "revelation" came to me over a month ago after some personal things happened that led me to re-evaluate the way I am/was living my life in addition to attending the funeral of my half-sisters' dad. He was young, in his late 60's. That's too young to die. He was diagnosed a few years ago with a disease called Multiple System Atrophy (MSA) or Shy-Drager Syndrome which was the cause of his death. MSA is similar to Dysautonomia in many ways. That is because they both affect the autonomic nervous system. The primary difference being that MSA is considered fatal within 7-9 years of diagnosis and dysautonomia is not. You can read more about MSA here.
Mitochondrial disease is still so unknown to most doctors. Even the specialists have a hard time answering the question "what is my prognosis?". Ever since I was diagnosed I have not been worried about the prospect of death. I haven't worried about dying from this disease; I've only worried about living with this disease. However, the death of my sisters' father made me think (as happens to many people after attending a funeral). The doctors cannot ever tell me what the rest of my life is going to be like or if mito can be fatal for adults. (We know it's fatal for children with mito all the time, unfortunately.) However, it occurred to me that other people in the mito world would be able to tell me if it's fatal for adults. So I went online to the support group I'm on and I asked, "Does anyone know of an adult who has died from mitochondrial disease?" I know, you're thinking I'm a glutton for punishment, but if you read on you'll find that it all works out and everyone lives happily ever after... okay, maybe not the last part. I received about 5 responses from people saying that they know of an adult with mito who passed away. That's what I wanted to know. The truth that is... not the typical doctors' statement telling me what I want to hear or saying they just still don't know enough about the disease to know.
The deal is, mito itself is not usually the cause of death in adults. However, if someone with mito develops pneumonia, for instance, it could be life threatening. Or, think back to the H1N1 scare a few years ago. Healthy adults could acquire the H1N1 influenza and recover just fine. The people who died from it were people who already had underlying illnesses or the elderly. "The child or adult is at highest risk for neurological and organ damage during and for the two weeks following an illness. Therefore, even a simple flu or cold virus can have devastating effects on the patient, even death." - UMDF Faqs
Unfortunately, since I've been sick, I've been a slave to mito. I have to do what mito will allow me to do. I live in constant fear that if I do too much activity I will get sick. Even when I feel good I'm careful to not do too much so I won't be sick the next day.
Well, I'm tired of being a slave, especially after the realization that there is a chance, albeit small, that I could die from this disease. I may not live to age 90 and grow old and decrepit with my husband and have to have my kids wipe my butt. I may have to have my kids wipe my butt for me at a much younger age. See I'll get back at them someday for all the hell they put me through.. he he. So, I decided to do what I wanted to do, within reason of course. I decided to start trying to live a somewhat normal life. The reason why I'm so unhappy all the time is because I don't do the things I want to do. I am always in my house. I am always in bed. And I'm tired of it.
This was the best insight I gained over the last couple of months. Because of that... I started looking into a family trip to Disney World. I made plans to watch the NCAA championship game where I wanted to watch it, at one of my favorite sports bars with my good friends. I decided to plan a 5K to raise money for mitochondrial disease charities.
I felt awesome... mentally that is. I've had a quote that's been my favorite for awhile now. I have just chosen not to tell everyone about it. I don't know why, so don't ask. However, I've been saying it to myself quite often for awhile. It's from a book that is made up of journal entries by a teenage girl with mitochondrial disease. It's called "Amazing Amanda. My Journey Through Mito" by Amanda Perrotta. The quote is on the back cover of the book and I keep the book laying upside down so I can see it when I walk by. The quote is, "The cure for Mito is living life." It's so true. How to do that is the difficult part.
But I decided I was going to live my life. Screw mito!!! I'm going to live my life whether you want me to or not! So, Fuck You, Mito!
My point is that I decided I was going to live my life, despite mitochondrial disease and then mitochondrial disease kicked my ass. I had my revelation, insight, whatever you want to call it, prior to my 3 major mito crashes. Soooooo... what the hell? Now what? Well, I'm still trying. I'm just trying to figure out how to do things I like to do (as in things that require me to get out of bed) without them causing me to feel like death warmed over.
The one thing that I am doing right now, as I briefly mentioned above, is planning a trip to Florida and Disney World. Can we afford it? No. We live paycheck to paycheck and barely break even every month. However, my oldest daughter is 13 and we have never taken her on a family vacation. She's been on a few little weekend trips to cities no further than a 3-4 hour drive. I don't count that as a true family vacation.
We have a change jug that was started a year before I got sick that has a few hundred dollars in it. When we filled that jug we were going to go to Disney World. We knew that it would take a couple of years but that would've been perfect because my youngest daughter was 2 1/2 at the time. We never took the money out of that jar when we were living without income and needing help from others. Primarily because we forgot about it. So, we have decided to do everything we can to save enough money to drive to Florida. Could we use the money for other things? Yes. Could we pay people back that have helped us out in the past? Yes. However, if I die in a year, will my daughters think, "I sure am glad mom paid all of her bills" or will they think, "I sure am glad we were able to spend quality time with mom in Florida on our family vacation"? Will they think, "remember when mom used all that change to make an extra payment on a credit card and pay for summer daycare" or will they think, "remember that time we went to the beach, Disney World, and Universal Studios together"? I know which one I choose for them to remember and to think about when they think of my/our life. I know what I would rather spend my life doing.
I know there will be people who think, "They are always struggling with money. How can they afford to go on a family vacation?" or "I've loaned/given them money to help them in the past. Why are they going to Disney World instead of paying me back?" Well, not that I should care what others think, but here's your answers. My husband is doing odd jobs on the side to make some extra money, we are all putting extra money in the jar when we can, even my 5 y/o, and the trip itself will be as cheap as possible (driving instead of flying, staying with family instead of a hotel, and only going to Disney one day and Universal one day.) And later in life when my kids are older and we have more money, I will try to pay everyone back.
However, right now I need to live my life. I need my daughters to live their lives. No, I don't need to live my life... I need to enjoy my life. So, I can pay all of my bills on time and give a small percentage of the money we've borrowed back, or I can do something that my family and I will remember for the rest of our lives. I pick the latter. Now if only I can keep Mr. Mito at bay long enough to enjoy the trip, I'll be the happiest person in the world.
I hope you all have a great day. Enjoy the Spring weather. And go live your life! You won't have the opportunity forever.
"Live as you would have wished to live when you are dying." - Christian Furchtegott Gellert
"I don't want to get to the end of my life and find that I have just lived the length of it. I want to have lived the width of it as well." - Diane Ackerman