I cannot even believe I am sharing this image, as it is, obviously, super atrocious. However, one of the reasons I write is to show ALL sides of living with chronic illness. So here it is:
Yesterday, my Husband and I had to make the over 60 minute drive to handle an ongoing issue with our new furniture. Knowing that we needed to do this filled me with tremendous dread for a few reasons: a. I knew we could no longer delay it b. my Dysautonomia makes car rides absolutely miserable c. even when I am able to get somewhere, my entire day is shot thereafter. Needless to say, it was something we could no longer put off and had to attend to yesterday.
Knowing we had to make the ride, I tried to mentally prepare myself yesterday. We had a rather nice, lazy morning and then I began doing my daily chores that have to be done; like taking care of our animals. I paced myself and had the luxury of not rushing. But by 11:00, I was so nauseous and sick I had to lie down. I pushed through a last couple of things and was back in bed by 11:30. By 12:45, I decided to try getting up again and took some meds for pain and my stomach. I opted for a quick shower, trying to avoid becoming sick from it, to no avail. I ended up on the couch again. Now I had the starts of a migraine too.
Ever patient, my Husband told me to take my time and he’d let me know when he was ready. I took my migraine meds and rested until he was ready. By 3:00, with enough medicine in me to kill a large horse, we set off. The car ride inevitably made me sick and halfway through I was taking deep breaths trying not to throw up. Inhale, exhale, inhale, exhale. I made almost the entire ride without moving my head and trying, instead, just to focus on getting there and being out of the car.
We made it, thankfully and as we usually do when we make this ride, we stopped to PetSmart to visit with the shelter kitties and buy them all some yummy wet food as a treat. Off to the furniture store to deal with the business at hand and then, by 5:30, we were in the restaurant. A nice meal out and our mission was now accomplished. All I still needed to do was survive the ride home, 65 minutes.
So why am I telling you all this about a really basic, boring day? Because for me, it’s anything but. For me and for millions of us out there, that live with Chronic Illness, the simple act of running errands and going to eat leave us in the condition that that picture depicts. Running errands and going to eat are just ordinary, mundane errands that other people don’t have to think about. They can enjoy themselves, chit chat, take in the sights, eat a wonderful meal and have an enjoyable day. This simply isn’t so for the many of us that live with invisible illness.
After we ate, I inevitably felt sick and the pain from being in the car too long was intensifying an otherwise nagging, all over ache. More meds in and halfway home, I was practically unconscious and drooling without even realizing.
A cross between my Husband just being his cute, silly self and inherently knowing and respecting ALL I go through just to go for a ride, resulted in him taking these pics.
So for me, for us, my illnesses are NOT invisible. They are bright and glaring at every turn in our life. There is no longer any spontaneity in our life or going for a ride just because it’s beautiful. These days, everything we do has to be carefully planned and thought out.
We made it home last night, clearly. And as soon as we got home, I was on the couch for the night, exhausted, until going to bed early. The copious amounts of medicine used knocked me out and my body was just exhausted from the days activities.
It was a great day, while we were actually out. We attended to business, got to spoil some unfortunate kitties in need of spoiling, I got a *ridiculously awesome* new blankie and we laughed, joked and enjoyed ourselves. I wouldn’t trade these moments with Bri for anything. I just wish, though, that illness didn’t overshadow everything we do and everywhere we try to go. It’s always there, gnawing and scratching in the background. If it isn’t pain, it’s nausea, or fatigue or a migraine.
I thought alot about the people we interacted with yesterday and that’s really the reason for this post. I laughed, was friendly, smiled and was ridiculously happy and excited over my new blanket. What none of those people saw or knew were the steps and the effort that went into making that 90 minutes possible. That I was SO excited for a new blankie, because I spend 75% of my life on the couch. Or what the result of that happy hour and a half is.
Invisible illnesses are only invisible to strangers. For those of us that contend with them everyday, they are bright and glaring in the forefront of everything we do and are.
So today, by posting this horribly inglorious picture of myself, I want you all to know this: please do not judge a book by it’s cover. You have no idea what lies behind that million dollar smile or the person who looks like they’re just happily dosing off on a car ride. We are just trying our best to live and love life in small snippets. Whether you can see it or not.
Much Love, Stace