Thursday, February 16, 2012

Explaining Myself... Again.

Shitty day?  No.  Shitty month.  Yes.  Going on 2 actually.  Yes, we all have shitty days every once in awhile.  You know what really sucks?  I don't have shitty days every once in awhile.  I have them all the god damn time.  Over the last month, I have averaged about 5 shitty days a week.

I have had procedure after test after doctors appointment for the last month and a half.  I have been cut into and had a foreign object shoved into my chest.  I have had tubes and probes and fingers stuck in a hole that is supposed to be one way only more times than I prefer to remember.  I have spent multiple hours in an Emergency Room attempting to explain to the physicians assistant what mito is and that I am there for IV fluids ONLY, to then go through numerous unnecessary tests, 5 of which requiring being stuck with a needle (yes, 5 different times).   I have had to fly to Atlanta, Georgia just to see a doctor who knows more about Mitochondrial Disease than "I think I heard of that in medical school."  I have had my head in a toilet attempting to vomit when I'm hardly able to eat anything in the first place more times than I count.

I'm sick.  I'm tired.  I'm tired of being sick.  However, that's, amazingly, not what's bothering me the most right now. I'm tired of people not understanding.  I'm tired of having to explain myself.    However, I'm going to attempt to do it again for those of you who don't understand or even try to understand what it means to have Mitochondrial Disease or any other chronic illness that affects a person's life 24/7. 

The only thing that a healthy person experiences that comes anywhere close to the way I, or others with mito similar to myself, is the flu.  Mind you, it is still fairly far fetched to compare mitochondrial disease to influenza.  However, I am going to try so as to once again attempt to explain my life to others in a way that they would understand.  

So, please, PLEASE, take the time as you're reading this to really think about it.  Really think about how you would feel if you were in the same position as what I'm going to describe.  Almost everyone has had the flu.  Which is another benefit to comparing it to that.  So, read it slowly and really imagine what it would feel like.

When you have the flu, and I mean influenza, not a cold virus, you have a fever.  Your body is then having problems with temperature regulation.  One minute you are freezing cold.  The next minute you're drenched in sweat and burning up.  That is something a person with mito experiences every day (it's called dysautonomia).  That is something I experience every day.

When you have the flu, every muscle in your body aches and your head feels like it's going to explode.  No matter which way you lay, it hurts.  No matter how much you stretch, it hurts.  Advil, tylenol, heat packs, and ice packs don't do a thing.  That is something a person with mito experiences every day.  That is something I experience every day, but, most times, that pain is multiplied ten fold to what someone with the flu feels.

When you have the flu, you feel so fatigued and weak that picking up a glass of water to take a drink feels like lifting a 20 pound dumbbell and walking up a flight of stairs feels like climbing Mount Everest.  Well, it's been awhile since I've had the flu, but I think that's closer to describing mito than the flu, but I'm sure you get the point.  Every time I stand at the bottom of my stairs looking up at what I have to do (almost always occurring after I've been out of the house for a test or appt that completely wore me out to begin with), I wonder if I'm going to make it all the way to the top that time.  I actually envision it as a mountain I'm climbing at times.

When you have the flu, you are nauseous all day.  You lay there just hoping that you won't vomit because that will make you even more weak and make your muscles hurt even more.  Then, toward the end of the day you wish you could vomit just so you won't be nauseous anymore.  That is something many people with mito experience every day.  That is something I experience every day.  My nausea, however, is caused by, once again, by dysautonomia.  If I am up and around too long (i.e. a doctor's appt. or test), sometimes even for an hour or less depending on how much my body wants to cooperate that day, I get extremely nauseous and usually vomit.  My nausea is also caused by gastroparesis, delayed gastric emptying (  which means that I have to eat multiple small "meals" a day.  However, my gastroparesis usually makes it to where I am only able to eat a small breakfast then snack throughout the day on just a few bites of things at a time and then eat a few bites of dinner.  If we have something that is one of my favs for dinner, I have to be careful that I don't eat too much for if I do, I will either vomit or lay in bed sick for a few hours.

This only scratches the surface of what mitochondrial disease feels like for me every day of my life.  There are MULTIPLE symptoms that I experience that someone with the flu does not.  To see what most of those are, you can read my post What Mitochondrial Disease Means to Me, Part 4.  There are also side effects to my medications.  Then, of course there's the tests, procedures, and doctors appointments that someone with mitochondrial disease has to go through that someone with the flu would not.  

Then there's the emotional side.  When you have the flu, you know you will get better.  With Mitochondrial Disease I know I will NOT get better... EVER.  I also have to deal with the fact that I am getting worse.  It may be a slow process, but it is there none-the-less.  There is also the fear that I have passed this horrible disease down to my kids and that there's a possibility (albeit very small) that mito could shorten my life as well.  Then there's the emotions of guilt for not being able to be a good mother, wife, daughter, and friend.  There's the feeling of uselessness because I am not contributing to society.  There's the depression from missing my old life.  There's the boredom and loneliness from hardly leaving the house and not having the choice to leave the house because if I do it could make me very sick. 

It's almost ridiculous to compare it to the flu.  However, that's the best way I know how to explain to a healthy person what mitochondrial disease is and how it affects people... mostly me.  

Now, since you decided at the beginning of this post to follow through with my request to really think about mitochondrial disease and how you would feel if you were going through the same thing, I would like to ask you to continue that process of empathizing with me for just a few more minutes.

Friendships (well, any relationships) are difficult no matter what.  They take work.  Friendship with someone with a chronic, life changing illness, is even more difficult.  Imagine, as you have been, being in the situation that I pointed out above.  Imagine having the flu, but not for a week.  Instead imagine having it for 2 months.  Imagine feeling the way I pointed out above.  Now imagine not hearing from your friends throughout the entire 2 months.  Would you feel lonely?  

Imagine, again, going through everything I mentioned above.  What kind of emotional support would you need/want?  Would you want to know that your friends and family are there for you?  Would you be okay with just assuming that they are thinking about you?  Would you be okay with assuming your friends are reading your facebook and blog posts?  They don't call, text, or send an email.  Not even to quickly say, "I'm thinking about you" or "I miss you.  We should get together when you feel up to it," or "I'm sorry you've been having a more difficult time recently than normal.  I'm here for you though."  When you're feeling sick, isn't it nice to just know your friends care?  Isn't it nice to hear it from people when you're going through a difficult time?  Someone who is chronically ill is almost always going through a difficult time.  Some times are more difficult than others, of course.

Being friends with someone who is chronically ill is different than being friends with someone who is healthy.    It's hard.  I know that.  I know I'm asking for more from my friends now than I did when I was healthy (physically and mentally healthy, that is). If that's too difficult, then please let me know that you were not wanting a friendship in which you had to give so much and we will part ways.  I will try my best to understand.

It is also sad for me when I talk to my acquaintances online who also have mito or another chronic illness and they discuss what their friends have done for them (run a race in their name, spread the word about their disease, raise money, etc. etc.).  To then have a friend make me feel guilty for something they did for me, just tears me up.

What do I want more than anything right now?  (notice that I said "right now" since that changes, of course)  I just wish people would understand.  Please, just try to understand.  Don't assume you know what's going on with me.  Even if you've read my blog and my facebook status updates, you still don't know what's going on with me.  Facebook status updates are limited to a few lines. My blog posts may not be limited in length, but, as with both, I don't reveal EVERYTHING online.  In addition to that, you may keep up with my blog and my FB posts, but how do I know that?  And, as I've pointed out already, when going through a difficult time, you want to know your friends are there.  You want to know that you have friends who care.  (And, no, I'm not trying to rhyme.)

So, the next time you read something I wrote that only consists of two sentences (or even something I wrote, like this, that consists of multiple paragraphs), please don't assume you know what's going on with me, what I'm going through at the moment, or what I'm thinking.  Instead, please take a moment to think about what my life might be like since it is so incredibly different than most people and then call, text, email, or send word on the pony express to actually find out directly from me what's going on inside this crazy head of mine or with this crazy disease of mine.


Joan Lynch said...

Oh Robin, it makes my heart ache so much for you and I feel bad that I am one of those friends. I am starting a new job next week and when I get my schedule, I am coming out to see you. When I do, what is best for you? Is it visiting, me doing some cleaning or laundry, making a meal or all of the above?

deb s said...

Your courage to put your feelings out on the line is beautiful. You are contributing to the universe in ways you can't even imagine. Your words remind me how important it is to remember what is IMPORTANT - being the first to reach out, the first to say "how can I help", being the first to love. May you always feel that love surrounding you, even if the circle feels small.

Robin said...

Thank you to you both for the kind words. It means SO much to me.

Joan, I will email you. But as I said in my recent posts, coming over to visit is enough for me. We used to struggle on a day to day basis to get things done around here. I say "we" like I am actually doing anything. So I guess I should say "he" meaning my husband. However, we have finally figured things out, gotten weekly help, and he has decreased his work hours. So, while the gesture is greatly appreciated, I need a friend to help cure my loneliness much more than we need a meal, a clean house, or clean clothes. Thank you.

Michelle Roger said...

So well said Robin. I don't know if there is a comparison worthy of the day to day, I don't really know if there are words that encompass it all, but the flu one is about as close as you can get. In many respects I don't think others can get it unless they are in the same position, but what you've written is one of the best explanations I've read in a long time. (hugs)

Anonymous said...

This seems to be a recurring theme for you which I understand you are exploring through your blog but have you thought of making new friends? It just doesn't seem like your old gang is there for you and maybe you thought there was more than there was or maybe they just can't handle your "new normal" but either way it sounds like it's time to move on.

Hanging on to old hurts won't be good for you. Not sure about on-line groups where you could meet a new crew?