Editors Note: Kerri is an amazing person and I love to read her blog because we may not have the same illness but we are both sick and struggle day to day because of the disease we have. Everyone should follow this lady because if she can make it through her days then so can we all!
~~~~~~~~~~~~~~~~~~~~~~~~
I am so pleased to be writing a guest post for The World As I See It! Margaret is a good “bloggy” friend, and we have a lot in common. So thanks, Margaret, for asking me to do this!
Margaret and I both have “invisible” illnesses. I have a neuromuscular disease called Myasthenia Gravis (MG). Some of the symptoms I have include lots of trouble breathing, double vision, difficulty swallowing, speaking clearly, and overall muscle weakness. The type of MG I have is MuSK+ MG. There are about 7 people in a million who have the same thing. (And here I thought I was one in a million!)
I wasn’t officially diagnosed until 2003, but I had symptoms starting as early as 1995. To look at me, all you might notice is that I have a trach. Not all people with MG do, but I had complications, and my vocal cords were scarred. I need the trach to breathe through.
Many people see the trach and assume that I had cancer or something; they have no idea what I go through on a daily basis. My disease is, for the most part, invisible.
The worst part about that is when people look at you and you know they are judging you. I am overweight, partly due to many of the medications I have to take. My husband (who is very healthy, thank the Lord) and I park in handicapped, because when I get to the store I may look okay, but by the time I’m done, I may barely be able to put one foot in front of the other.
But people just see an overweight, lazy person who is taking a good parking spot from someone who really “needs it.” I try not to let it bother me, but it’s hard. Some days are worse than others.
Imagine that when you wake up in the morning, you have a pocket full of change. Every day it’s different, and you won’t know how much you’ll have until you get up.
So one morning I may wake up and have 43 cents in my pocket. Getting up, getting my son up, getting breakfast for both of us, making my coffee and getting him dressed takes at least 13 cents.
There are 2 loads of laundry to be done. That’s 25 cents gone. That leaves me a nickel, and I still have to take care of my 4 year old all day, homeschool, take care of our 3 dogs, do the dishes, feed my son and myself lunch, do the bills, write my blog….You see where I’m going.
The next day I may only wake up with a dime. Those days are the hardest. My son only knows me the way I am. He knows I am different than other Mommies, but he’s not sure why. To him, I look pretty much the same as other Mommies. I probably look “normal” to you too.
But on the inside…on the inside, it’s tough. It’s isolating. It’s frustrating. It’s heart breaking.
So next time you a mother and young child on a train, and she can’t “control” her child, understand that it’s a miracle she and her child are on the train at all.
Next time you are in line behind a slow, grumpy man who is getting on your nerves, know that he has chronic pain that the doctors can’t fix, and he hurts all day long.
When you see the overweight, middle aged woman who has a nice haircut and make-up on shopping, but parking in handicapped, appreciate that it took her 2 hours to do her hair and make-up because she is so weak she has to rest every 60 seconds. But she still wants to look pretty. On the inside she is the same as you.
Try not to judge. There may be so much more going on than you could ever understand.
Kerri
