Yes, the above photo is real. I took it about two years ago while filling out the questionnaire for our respirator fit tests at work. I thought of it again today when I came across some questions that, while not necessarily odd, certainly made me pause and either shake my head or laugh. And then want to cry.
One thing my healthcare system does prior to many appointments is have you fill out a “Pre-Assessment Questionnaire.” Basically it asks you a bunch of questions on how your health has been doing in the past seven days and how it compares to the last time you saw this particular physician. I always do the assessments at home the day before my appointment because I don’t want there to be anything causing me to sit in the waiting room a second longer than I have to. Tomorrow I have my follow-up with Dr. Bain to see how I’m doing after the stent placement for my aneurysm.
Being a spoonie, some of these questions are just downright hilarious.
Obviously, I understand that there are healthy people out there. I envy those people who can check “excellent” or even “good.” But when it comes to my quality of life, since “dead” was not an option, I had to go with “poor” since right now my life resembles something out of my worst nightmares.
My physical health? I can’t even climb a flight of stairs without nearly passing out when I get to the top. My mood has actually improved as of late, so that was a nice realization once I thought about it. Social activities? Does hanging out at home and talking to my cats all day count?
Fatigue? Are you kidding me? Just yesterday, I slept for 17 hours straight, got up for an hour, and then went back to bed for another 7 hours. And I drank 3 cans of Diet Pepsi this morning to wake me up. As for pain…well, I’m pretty much always at least a 4, so nothing much has changed there.
Believe it or not, my fatigue actually has gotten worse since my last visit, which was November 16th. As has my sleep. According to my Fitbit, I average about 11 hours of sleep a night per week, and that thing has actually always been quite accurate in tracking my sleep.
This one is really a kick in the pants. It made me realize I can’t do…anything. I got dizzy and out of breath from folding a bed sheet earlier. I have no stamina whatsoever, and it’s not from being out of shape.
It’s a sobering reality when you see your limitations laid out in front of you. This is not the person I was a year ago. This is not the person I ever wanted to be or ever thought I would be. I try to push through because how can this be my actual reality…but I fail every time and am faced again and again with the fact that yes, this is my reality. I’m getting better at planning around my limitations so they cause as few problems as possible while allowing maximum recovery time for me. But the fact that I’m 31 years old and I’m this is just…unbelievable and depressing.
It’s so upsetting when I think about the things I used to be able to do. Hiking, camping, swimming, physical labor around the house, shoveling, walking around the block, playing with the cats. Didn’t even put up the outdoor Christmas lights this year, so I feel like a Scrooge when I look at our house.
I know this a normal part of recovery. But I almost feel sub-human.
I never saw myself as this person. I was doing fine dealing with the celiac disease and endometriosis. And then this year happened. I am still having difficulty comprehending everything I went through in 2016.
And who knows if it will stop in 2017? That’s just an arbitrary deadline that my body knows nothing about. It’s almost superstitious to think that the calendar changing over to a new year will change anything concerning my health or fertility. So why should I believe anything will change? I guess I kind of believed it before, thinking, “If I can just get to 2017, everything will be fine.” I don’t know why I ever allowed myself to believe that, because there’s no truth in that.
I have a lot to think about. And a lot to get used to as reality sets in.