Illness has been consuming me recently and as such, it is what I feel like writing about. Part of me feels as though my body has let me down and has left me in this state of half life. Spending most of my time inside hiding from asthma triggers, pain triggers, anxiety triggers. All these things I can medicate away to some extent but the subsequent drug withdrawals and the expectant look of concern and disapproval on my dr’s face will if I take a higher dose of steroids than absolutely necessary, makes me hesitate. Stops me. The drugs are a Band-Aid, one that rubs and itches and won’t come off even if you soak it. If you try to take it off too fast the pain is unbearable and you quickly put it back on.
It is circular. The asthma makes me take the steroids which then my body becomes dependant upon and then if I don’t take enough, I can’t fight the inflammation in my lungs and my asthma symptoms return.
I was recently told that I now cannot live without taking corticosteroids in some form. Not because of my asthma, but because the prednisone has changed my body, that I no longer produces the cortisol that is necessary for survival. That if I stop taking the drugs that replace it, I will die. It feels terrifying to be so dependant on these little white tablets. To know that if for some reason I can’t injest them, then I will need to inject the cortisol in order to ward off death. I am scared. To know that a severe virus or infection, an injury, an operation, or a stressful life event can send my body into a crisis because it isn’t producing the cortisol that it would usually produce upon such an occassions is terrifying.
I look at my body and know it is broken. Not just in pain, or with inflamed airways. But fundamentally and probably irreperably broken. I think about what would happen if I stopped my meds (to my friends reading this, stop stressing, I will keep taking them!!!) I wonder how long it would take for me to pass out. What it would be like. Of course I have no intention of finding out. I just hope that I am never in that situation. That I am never stupid or unlucky enough to find myself in that situation. I love my life, I have fought hard for it, and will continue to do so.
After a broken sleep, I wake up at around 5am every morning with hypoglycemia. My body is screaming at me for food and cortisol. So I comply.
A sliced apple, berry muesli and low fat unsweetened yogurt, coffee, and my drug cocktail. What you see above are two asthma inhalers, my Hydrocortisone tablet, my SSRI’s and a calcium supplement. The things that keep me alive and functionaing relatively well, on a good day. The calcium is because long term steroid use can lead to osteoporosis, my last bone density test showed me to be at the very low end of normal so I’m taking precautions. Already my teeth are crumbling, I have two crowns in the front and a lovely hole where one cracked almost in half and had to be removed.
Back to mornings. I don’t really mind the early hour because it is the best time of day, I listen to ABC classic fm, watch the sunrise from my recliner, and read lesbian fiction, usually mushy romantic stuff. Mornings are for relaxing, I avoid the news until at least 7am, watch briefly but usually decide that it is just too much to cope with and turn off the tv. I read Crikey most afternoon and that gives me a smart, well written lefty perspective on any important news.
This morning I think I might go back to bed. Some morning I am really wired and pace up and down our apartment while reading, but today I am reducing my Hydrocortisone by 5mg and I am not feeling the usual “buzz” that it gives me. My wrists are also hurting, hmmm… maybe I shouldn’t reduse today. I think I might go back to bed. My girlfriend is asleep and our bed looks very inviting. It’s cold and too windy to go walking. I just want to snuggle up with her under the blankets and hopefully get some sleep… If I can get my brain to relax.
This may be one of those rather self indulgent posts in which I complain about how crappy I feel because of all sorts of health reasons.
It’s my blog, so here it goes.
Fuck it, just fuck fucking fuck it. I have very little control over my body and my mind at the moment. Usual pain levels I can cope with as long as I keep to my pain management routines. However, add to that prednisone withdrawals and I am just so fucked. Tired, constantly hungry, bruises, hair falling out, depression and the almost constant feeling of thousands of little tingly electric impulses in my brain, my teeth and my tongue. Oh it is so much fun!!!
There are a million and one books out there about coping with chronic illness, chronic pain or mental illness, and you know what? They are as bullshit as the gurus who peddle them.
The aspirational dream of the “wonder cure” for health and self contentment is big business, it is a product of a market that quite literally exists to steal from vulnerable people and to give out not only bad but dangerous and unscientific advice.
FUCK COLLOIDAL SILVER!!!
FUCK ECHINACEA, CHIROPRACTIC AND AROMATHERAPY!!!
I’m sick, I will continue to be sick, I know all about what is wrong with me, and the last thing I want is advice about the latest phase in alternative natural homoeopathic claptrap.
STOP SELLING ME SHITE!!!!!!