I understand how I look. I understand when you run into me in a store that I look, seem and act fine. I have a high enough intelligence to be able to process what you may take away from that chance meeting.
You don’t have to admit it, but have you had these thoughts before?
- Her hair and makeup is done. She’s fine.
- Ok, so she can’t stand. Why can’t she just sit and do a job sitting and use a wheelchair to get to and from her car?
- She can do crafts and cook. Why can’t she work?
- I don’t get it. She looks fine.
- I’ve never seen her pass out.
- She can drive on some days, but other days she mysteriously can’t?
- Who really goes to the doctor that much?
- She’s a bit dramatic about needing to drink water.
- She just uses oxygen for attention. (because oxygen is so sexy)
You don’t have to admit if you’ve had any of these thoughts. They are the normal and reasonable questions and thoughts to have. I get it.
To try to avoid embarrassment, I do my very best to hide my issues from you. Tom can tell when I’m trying to hide things. Even then, I can only hide so much. If you see me for 20 minutes, I might be able to avoid showing any symptoms. If you spend the whole day with me, or several days with me you will understand what the problems and issues are because I can’t hide for that long.
Here’s what you don’t see:
- Me crying in unbearable pain at night
- Me being too weak to walk to the kitchen
- Me throwing up- randomly with no pattern to what I’ve eaten
- Me crouching down or sitting on a dirty floor in a public place to avoid fainting- probably right after I ran into you and chatted for 10-15 minutes standing in one place
- Me falling down from dizziness
- Me needing help walking to the bathroom
- Me passing out in the bathroom
- Me not being able to make it up the stairs
- Me going to bed at night and wanting to change the sheets, but physically not being able to on my own
- Me needing help in the shower or getting out of the shower
- Me crying when I’m home alone and I can’t just take a nice relaxing hot bath and read a book
- Me having energy at the grocery store to buy ingredients for a favorite recipe, but not having the energy to make it before the ingredients go bad
- Me having heat intolerance and temperature regulation problems and waking up in the night with the sheets and pillow completely soaked
- Me being a grown up and not making it to the bathroom because my body has decided suddenly to reject food instantly (I’m hoping most of you have stopped reading by now)
- Me on the toilet violently pooping and throwing up at the same time because it’s Tuesday (or other unknown region)
- Me having vivid and crazy nightmares and screaming and waking up crying
- Me having my legs collapse from weakness
- My arms being so weak that I can’t feed myself
- Me taking over 2 or 3 hours to get ready, due to resting and going to the bathroom multiple times in the middle of trying to do my hair & makeup
- Me pulling over to throw up or pass out
- Me smiling at people glaring at me when I use the riding cart at the store
- Me having agonizing chest pain and shortness of breath from bending down to pick something up and standing back up
- Me tremoring for long periods of time
- Me passing out on the way to the doctor to do the really fun lay down, sit up, stand up test, also known as the stand up, sit down, fight fight fight!
- Me getting a tiny burn and it affecting my entire autonomic nervous system and being down for days
- Me not drinking enough water and not being able to leave my bed
- Me qualifying for needing oxygen by resting around 80 or 82 and frequently being below 90, which makes for a wonderful headache, by the way.
This list doesn’t encompass all of what I try to hide from people, but it gives a good idea. It’s also completely possible that all of these things could be happening in the same wonderful day. If you ask how my day is going and I say that it’s a rough day or a bad health day, please know that I’m not lying because it’s just so fun to be able to ‘do crafts and bake’ during semi good moments in between the otherwise hellish moments of symptoms raging.
Throughout this list, I choose to focus my attention on happy things and funny things. Yes, I have moments of sadness and moments of missing my body that could go for a fun hike or walk for six miles on the beach in Oregon searching for hidden glass floats. Tom reminds me that he can still help me hike where there is more of a trail and any part that I can’t roll through he can carry me and then bring my chair through. He reminds me that we can rent a fancy cool wheelchair with tracks that goes through sand the next time we’re at the coast.
When I say it’s up to us to decide what we focus on, I mean it. I’ve had days where I focused on all the things I couldn’t do because that is my right and I can be as pouty as I want. I’ve also taken whole days and chosen to focus on all the joy around me and blessings. It’s always a better day.
One of my favorite Jason Mraz songs is Beautiful Mess and this is one of my favorite lines in the song:
And what a beautiful mess this is
it’s like we’re picking up trash in dresses
You can choose what you wear to pick up the trash in your life.