As with anything in life, any trial, tribulation, or obstacle, there are good days and bad days. It means that within my little bubble of a rare diagnosis, wrapped in an even more unusual medical case, I have my share of good days and bad days.
Many days, I wake up ready to take on the world. I stand when I can, I walk without my walker if I’m able, if not, I try to walk even farther WITH my walker. I strive to be as independent as anyone confined to four small, 8 by 12 walls can be. But we are not creatures that are meant to live lying down, in the most literal of senses and that means that I grow frustrated with my circumstance as anyone, I imagine, would.
Officially being considered medically homebound was supposed to be a Godsend. It was supposed to be the stepping-stone I needed to help me get on the mend. And in one very specific way, it did. I am able to get my physical therapy in my home, in my room. It allows my caregiver to SEE what I am up against. It allowed my first visit to start with, “No, there is no way you can do ALL of those stairs! You are definitely homebound.” Which was a relief to finally hear from someone other than my husband and me.
But it has put a little mental damper in my positivity. I am 30 years old. I had planned to run the Tough Mudder twice before I turned 30 and will never meet that goal. I want to run it again this year, but appreciate that that might also be just a daydream. And I am homebound. I am unable to consistently leave my house and I definitely can’t leave without help and supervision.
Thirty years old, can barely walk, can’t live independently, nearly bedridden, officially 50 pounds overweight, winded from walking to the bathroom and back, stretch marks abounding all over my body due to the sudden weight gain, living my life in a small bedroom.
We humans are just not meant to live this way. We walk upright, we have opposable thumbs; we are meant to walk and run and play and live life away from our beds. We are not to watch 21 hour long episodes of a new TV show in 1.5 days. We are not meant to sit alone in a room for weeks and months on end. It all takes a mental toll.
It means that I have good days and bad. It means that some days I’m determined to leave this room if it’s the last thing I do. Some days, I’m resigned to sit in bed and stare at my computer with nothing much interesting to do.
As it currently stands, I’m mostly embarrassed to leave the house because I have no clothes that fit. I wear sweats and my husbands T-shirts and feel even more crappy that I actually weight more than him now and soon even HIS shirts won’t fit anymore. I’m working on that. I’m trying to lose weight with the Paleo even though my inactivity won’t have changed much.
I’m embarrassed to leave the house because I hate that I don’t “look” sick. I feel as if everyone is staring at me, a young otherwise healthy looking woman, and wondering why she is being pushed in a wheelchair by her husband. Surely if she truly needed a wheelchair she could push herself…. But I have arthritis in my hands too and some days, it’s just too painful to push myself. And some days, pushing myself can cause my arthritis to flare up.
I’m hiding in my house, just as much as I am imprisoned here. I use my diagnosis as an excuse to isolate, just as much as it is a legitimate obstacle to my leaving. I have my good days and my bad, just as anyone else.
On a good day, I will be walking by this time next month.
On the bad, I remember that I thought that this time last month too.