I had a terrible reaction to an innocuous treatment yesterday. Again. Was this close to calling the paramedics, fighting to stay conscious on the bathroom floor. This one wasn’t like the tortuous 7-hour marathons of faux-malaria, this was swift, severe and very scary. It took over my body so quickly, I thought it might be anaphylaxis, but it was more than that, honestly. With the crashing blood pressure, I got instant violent shakes and chills to my bone – it came on so quickly! – and, this time, a skyrocketing heart rate. I’m used to being cold and clammy and unstable, but not in such a quick and fierce way, from totally fine to yellow/grey-paloured and ghost-like. From feeling good to feeling like I should be hospitalized in a matter of seconds.
I’ve got so much to write and no energy to write it. Every day is a calculated climb to become stable and, as soon as I gain some ground, something – food, medicine, overexertion, emotion, bad night’s sleep, GI problems, menstruation – sends me toppling down and I start the ascent all over again.
I haven’t taken vitamins or supplements since Christmas. Everything is on hold. 5 months since I left my house and went to the rentals after the bad reaction to Cromolyn and, ever since… Life, interrupted. 5 precious months in freefall. I can’t address candida or methylation or leaky gut or adrenals, I can’t take immune modulators or antivirals or sleep drugs or any of the other things I want to try because right now my only focus is: keep your bowels moving, keep your blood pressure up, keep your blood sugar stable, try to sleep.
My father is visiting and it’s like lifeforce. A reminder of where I come from and why I fight. It may feel like we’re forgotten in our four walls – no one to bear witness to the worst of it, unable to accurately describe the severity of illness and the complexity of emotions, putting on a brave face for parents, children, friends, healthcare workers, while, inside, we are screaming, moaning, constantly scanning our dysfunctional systems – but, all of us are loved and thought about by someone, somewhere. And we all have warrior sisters and brothers who understand what it is like to fear death – or, worse, painful, sick, unstable life – alone and misunderstood.
To all of you, even those I don’t know: I see you, I witness your struggle, I know the strength it takes to live the fear and then smile through it, even with something as simple as an exclamation point on a Facebook post. ❤