Life in Contrasts

Life with dynamic chronic illnesses is a life lived in a series of contrasts. One minute, you are feeling like you are finally improving- hiking through the redwoods and soaking in the joy of being in nature again. 

And then the next moment you’re being rushed to the ER with your worst pain in 6 years and suddenly back in a world you’ve mostly been avoiding. A world of IVs and pain, a world of medical experts who don’t actually know much about your illness and don’t realize that telling you to take it easy on food isn’t the best advice when even water hurts. 

I knew something was up with my body a few weeks ago. Exhaustion, my full body chronic pain, constant headaches, all were reaching a fever pitch. And then about a week ago I started feeling nauseous and having trouble eating enough. I tried to write it off as stress, but it felt bigger. 

Then, Thursday morning on my way to work, I felt the start of an SOD flare. I called Ed in a panic, asking him to reassure me that everything was okay, that the flare wasn’t real, that it wasn’t going to get worse. And I made it through the day, but by Friday evening, I knew it wasn’t going away. Day by day, I went from 1500 calories to 800 to 300 to 0, hoping that if I just let my system rest, this would stop. 

But of course, it doesn’t work like that. Monday morning came and I was awoken from the pain at 2:30. But it was Evan’s birthday and he was leaving for Science Camp and I knew I couldn’t seem sick. Plus I couldn’t accept I was getting worse. So I got ready for work and started the drive. 

But by the time I got there, I was dry heaving, in so much pain I was whimpering, and immediately asked the office to find me a sub. And then curled up on some chairs out of sign, so mortified but in too much pain to do much else. I was too sick to drive so ed picked me up and drove me to the ER, where I got meds that helped the flare and an otherwise clear bill of health. 

And now I’m in possibly the worst part - limbo. I took the day off and am hoping to attempt liquid calories. But I’ve been here before and it’s always scary. Best case scenario, my system calms and in another few days I’ll be okay. Realistic outcome is that it’ll last 3 weeks, since that’s generally what previous flares have done. But this was my worst attack in 6 years, and my last terrible attack left me disabled and unable to eat for two years. 

And there’s just no way to know. Even a short flare may mean I have to cancel my summer plans. My edited, scaled down plans after my foot injury destroyed my pie in the sky, summer dreams. 

And so once again I’m laying on our outdoor couch, trying to tell myself this is enough. Being in the fresh air, looking at the trees around our home, seeing the sun breaking through the clouds. 

But I hate this. And I just want to get my life back.