When I first got sick, I used to make jokes about my extensive medicine cabinet, which, at that point, was a drawer with about three packages of pills in it. That seemed like a lot. Now I think of that drawer with rueful nostalgia.
Anyone who has any sort of chronic illness will understand what I mean when I talk about the fine balance involved in managing multiple medications.
I must pay careful attention to each pill bottle, each injection. I must read labels. I must set alarms. I must record symptoms. I must research side effects. I must try to ascertain which side effect is attributable to which medication – or if it’s just my illness, or just me. I must offset drugs with other drugs.
It. Is. Exhausting.
I’ve always been anti-pills. When I first got sick and antibiotics were suggested, I fought. When I was eighteen and antidepressants were prescribed, I fought. In the months before I was finally admitted to hospital, I fought painkillers and antivirals and antinausea pills, until three rounds of antibiotics put my body into complete shutdown because I’d made myself such a drug-free martyr that my immune system could not cope.
But it was antibiotics that saved me then. And it’s drugs that are keeping me alive now. Taking pills is not a sign of weakness, and I’m really, really sick of the stigma around it. The idea that ill people can cure themselves with deep breaths and sunlight is irritating and hurtful to me. Help? Yes. Mindfulness and going outside will help me. Cure? No. Not actually physically possible.
Of course, my pills and my injections won’t cure me either. But they will make my life manageable.
Before I overcame anti-pill stigma, I would go all day without taking painkillers only to collapse into bed, crying. I would stay awake all night, twisting, trying to get comfortable, slipping from anxiety attack to nightmare and back again. I would drag myself through the day, exhausted beyond measure from my immune system attacking me, from my lack of sleep, from the extreme tiredness that comes from being in constant pain.
Yes, all drugs carry risks. I never take anything without reading the extensive lists of possible side effects. I weigh the percentage of possibility of addiction, liver failure, a heart attack against the percentage of possibility that it might help me use my fingers. I weigh the side effects of one drug against another. I take drugs to counteract drugs. This is never how I wanted it to be. But it is how it is.
Anyway. Here’s a poem I’m working on about it, which can be about anything for you, but for me it is about the tight rope between my illness and the drugs, and how I love the drugs but I hate them, and how I am afraid of what they might do, or what I might lose – with, or without them.
The Name of This is Not My illness
She awakes slowly to the row
of bottles on the bedside table
Her tongue is heavy and
sticks to her lips
Each leg is petrified wood, each knee a knot
She rolls from back to belly, her spine pops
Her stomach is a balloon pressing into the mattress
She counts breaths
Soon she will touch the lamp
Bright, brighter, brightest
And come to all fours
wait, turn, wait
Calcified bone feet touch the floor
Testing for cracks
Each cap requires three motions
Push with palm
twist with wrist
Pull with fingers
Each label requires checking
Name (yes, it is hers)
Dose (too much/ too little/ never enough)
Date (forever expiring)
Do not drink alcohol
Do not drink grapefruit juice
Do not miss a dose
Do not take two doses
May cause sleepiness
May cause headaches
May cause dry mouth
May cause dizziness
May cause constipation
May cause diarrhoea
May cause heart attacks
May cause depression
May cause loss of bone density
May cause limb paralysis
May cause macular degeneration
May cause righteous indignation
May cause weakness
May cause auditory hallucinations
May cause internal bleeding
May cause loss of breath.
fab post, kick arse poem
Omg…. I love it and love the fact that yyou have turned this depressing and debilitating disease into scribe. I was researching as I am having a tough week and cannot keep my eyes open. Like you… I suffer with fibro, AS, and IBS. There are good weeks where I think I can do anything but then I walk one step too far and bang, this disease quickly reminds me that I am not in control, my life is not a hallmark card and it controls me. The drugs just to get through the day that I swore id never take, have become like the walking stick that rests on my bedside. Another crutch, for a body that is betraying its owner. Goodluck. Keep up the scribe.