Planning what our lives look like, and trying to create and manipulate our lives and surroundings I think is part of being human. It starts with imagining what we’ll be when we grow up, imitating parents, older siblings, friends and fictional characters, and morphs into imagining what our children will be like when they arrive and how having a dream home will make us happy. But I don’t think it ever actually happens like that. Ideas change, how we acheive things gets shifted to the left, life happens, instead of a plan.
My first real inkling that the world was going to happen its own way whether I liked it or not was sitting in a doctor’s office at age 16, receiving the diagnosis of a rare, inherited bleeding disorder. Pretty big spanner to throw in the works. I’d been living with the reality in a ugly, messy way for a number of years, but giving something a name and being handed a pile of prescriptions gives it a very different spin. And even my medical diagnosis has failed to go to “plan” – typically, bleeding in patients with type 1 von willebrands is mild, and only something that needs to be considered during an acute incident like a car crash or an operation. I have daily medications to control my symptoms, and have been learning lots of things I can do to help control the presence and severity of my bleeds, things that may ordinarily be considered going a bit too far for a type 1 but are necessary for me.
And now, even our established plan of medical treatments has been given the ol’ heave-ho. For the last few months, my menstrual bleeds have been (how does one word this politely?) acquiring a mind of their own and doing their own thing. Which means lots of time on the couch and in the bathroom, lots of medications, doctors bills, tests and confused faces. Mostly from my doctors. I’m on round 2 of testing out new options to return some medicated normality to my blood loss and pain levels, round 1 being a distant memory of my teenage years. Like someone with post-traumatic stress disorder, I’ve had so much distance from the insanity of what my unchecked medical condition can do to me I’d forgotten its impressive skills of torture, its ability to knock me sideways while still lying down on the couch, and reminded me why I have such an expansive DVD collection (when you’re stuck at home and unable to move for fear of flooding the house out, DVD watching is pretty much you’re only option to stave off the mind-numbing boredom. Or its the only option I’ve found. Alternate suggestions are craved, please post below with how you cope!).
Chronic illness, inherited or otherwise, definitely shakes up anyone’s plan for their life. With a chronic illness, you have to think about so many things that otherwise were an absent thought. Can I eat that today? Will playing that sport hurt me? I can’t go out tonight because I have to take my meds. Will I be able to have children? Will my friends not like me when they know about this huge thing?
Sometimes, plan-changers are a blessing, and not even in disguise. Had I been the preferred candidate instead of the second option for the first job I applied for out of university, I would never have met my love – the crazy, wonderful, silly and inspiring person I’ve chosen to spend my life with.
For me, learning to go with the flow and embrace what comes and the opportunites presented, instead of trying to design my own path, is my biggest obstacle. Not just for health (though I certainly wouldn’t have learned so much this year if I’d stuck to the plan), but so many other things. So I’m trying. And I’ll undoubtely fail once or twice, but I’m hoping there are enough reminders that the plan not working isn’t always a disaster to keep me positive and focused on being well and happy.
Writing has always been my favourite way to crystalise my thoughts and feelings, so now its going to be out there in the universe for all you lucky people to read. Or ignore. That’s also a valid option. But I hope to not just make myself feel better by writing, but also to have even just one person read what I write and think “oh thank you, I’m not the only one”.
So over to you – when has the plan gone wrong? How are you coping with your chronic illness? When has the plan failing brought something so wonderful, so unimaginable into your life?