by Emma Varney
Dates are important to doctors. Timelines, records, charts, files. Every time I go to a hospital appointment, all my information is there waiting for me, which is pretty much one of the only reliable things Iíve experienced in a hospital. Last time, the receptionist was searching through her pile of files for mine, only to then realise that the pile was my file; plural. Bursting with paper, held together by a couple of elastic bands stretching to their limits.
Thatís how I feel some days, my body being stretched to its limits. Iíve actually lost track of how many times Iíve thought I couldnít cope anymore, how I thought this was it, I was broken beyond everything. Always trying to hold in the pain, keep it from affecting my life. Itís not that simple. Even now, comfortable with my cup of coffee, snuggled in my dressing gown, the pain is with me. Today itís concentrated around my lower ribs, mostly around my sides. Have you ever worn a bra thatís too tight? Or squeezed into a pair of trousers that compress your tummy? Itís nothing like those things, unless youíve had nails attached to them, burying into your bones as deep as they can. Every movement hurts because the nails inside have little nails of their own, stabbing and grating, making new holes and scars that you feel every single moment.
Itís called costochondritis. No one knows how to spell it and I used to get it wrong myself a lot. I now know if off by heart because itís been making my life more and more painful. Gone are the flares that only lasted an hour or two, from when I was 15, about twice a year. Gone are the days where I would have breaks in between. This year has been the worst because Iíve been in constant pain since Easter Sunday. Thereís a date for you, April 16th, 2017. Today itís December 2nd, 2017 and the pain hasnít gone anywhere. Oh and another number, Iím 25, so this has been steadily getting worse for 10 years.
This condition isnít the only one in my file. ĎMaffucci Syndromeí is something else no one knows how to spell and most doctors have had to look it up in a book. Itís not something common and itís not treatable. Itís the reason my hips ache when I do the dishes, why it hurts to walk and some days, not moving causes me as much ache and agony as moving does. Itís the reason I had cancer when I was 12 and the reason why I panic every time I throw up; because the chemotherapy was so strong, I could never keep anything down. Itís the reason I know every change that happens in my body because Iím always anticipating itís return. Itís the reason I canít use any antiseptic wipes or hand wash or sanitizer because the smell reminds me of the hospital and is so nauseating. Itís the reason I panic every time I have a test. Itís a part of me.
I donít understand the finite biology behind my body so I donít claim my medical knowledge is 100% accurate. Everything I talk about is how I understand my body and what Iíve been told. Iíve had medical issues since I was a child and am only now trying to make sense of everything that happens inside me. Iím only now moving away from the childlike understanding that I have and only now do I feel ready enough, to start moving away from my fears as well.
I digress. Itís easy to get lost in my history, to go off a tangent about different things that have happened. Everything is loosely connected in some ways and definitely in how they all cause me pain. Iíve been dealing with pain since I was a child and itís something Iíll always have to deal with. At the moment, I take three types of painkillers, as well as an anti-inflammatory. Oh and my anti-anxiety meds because I canít forget to take those. Of course mental health is included in my list of chronic conditions. Depression is common in adolescents that have suffered cancer, my consultant told me. I have spent hours wondering if my mental health wouldnít be so complicated if I didnít have these physical issues. But thatís a deep dark hole I donít want to fall down.
My boyfriend recently bought me a pill-box, with different sections for every day of the week. Theyíre all in different colours, as pretty as a rainbow. Iíve been losing track of when I have to take my medications and which ones Iíve taken throughout the day. The sedating and dopey side effects of the tablets have been confusing my brain, making it spin around as Iím standing still; trying to make sense of my senses and the world around me. They overload my mind until thatís all I have in there and anything from the outside world is too much, from conversations to cutlery. Which is a random comparison but I often look at my surroundings and it takes me some time to understand what is front of me and why. Even when I sleep, they invade my mind with nightmares and morning headaches. When my tablets affect me, I say I have a Ďmed head.í I like it because it rhymes.
The painkillers provide additional problems to the pain and though I am so so grateful to them, for any pain-free moment, they are not a cure. They are an attempt to hold back the symptoms untilÖwell until it goes away. Theyíre not something Iím taking as Iím on the list for surgery or until the cold passes or until it mends. They are the dam against the river that always floods.
I had hope for a few months that the pain would go away. I can manage the other pains of my body quite well but this is when it became too much. And the day a doctor told me there probably wouldnít be a fix was a day dedicated to crying. The apparent hopelessness of the situation can hit me at anytime, anywhere. People tell me that this wonít last forever but every day is my forever. Itís my morning, noon and night. Itís my shadow, my spirit, my soul. Itís latched onto me like a leech and every day, a little more is sucked out.
Yet I still live. I go to work, still do my job. I still go out for shopping and coffee with my friends. I still spend time with my family. I still play video games with my boyfriend and have movie nights with popcorn. I still kiss him. I still have days out and holidays. I still laugh and love and I still watch the sun rise and the sun set. I still see the stars surrounding the moon.
There is no appropriate ending to this, because my story is still being written. At this moment, Iím still in pain and itíll probably still be there tomorrow. But so will I.
End of Chronic by Emma Varney