If you’ve read my ‘About me’ blurb, and I assume you have or you wouldn’t be here, you’ll know I like to make things! You’ll know I have fur kids (two dogs and a bunny to be precise) and they like to have their photos taken – or I like to take their photos, either way there are dog and rabbit photos. You’ll also know I live with chronic illnesses and they impact on my life in various ways every day. They have played a huge part in shaping the person I am; significant life events usually do. Some people think they are sent to test us and are there by design beyond our comprehension, some think they are just a coincidence and a battle to be fought and won. Either way there is no denying that they change us, mould us and influence the decisions we make and the directions in which our lives move – and mine has moved in more directions than I could have anticipated.
My own journey is shaped by my experiences with Chronic Sinusitis, Chronic Migraines, Ehlers Danlos Syndrome, Endometriosis, Adenomyosis, Common Variable Immune Defficiency and Dysautonomia. Dysautonomia is by far the most vocal of the bunch but I haven’t quite decided if it is the Diva personality that just wont be ignored and doesn’t like being left out of anything, or the misfit that is continually being picked on and upset by the others. Either way whenever one thing flares up, Dysautonomia flares up right there along with it. The individuals of this group, my group (as each of them are very well known to me now and could well have their own personalities), have each taken their toll on my body and my emotional wellbeing. I believe I am a stronger person for them and more in tune with who I am than I would be without them, well, I think so anyway!
Dysautonomia is what is known as an invisible illness; all my chronic illnesses are. That means they are not immediately visible – there are no obvious signs of disability, no clear cue to pick up on. Most of the time I look completely fine, I look just like every other normal, healthy person. Sometimes I don’t look so hot but those times are usually when I’m too unwell to leave the house. Sometimes I can get around under my own steam and sometimes I need my trusty cane to help me. Sometimes I can stand for a few minutes and sometimes I can’t even for a few seconds without the world tilting rather inconveniently and my legs deciding to turn to jelly. Sound complicated? It sure can be!
My journey through differing ability has been a long and inconsistent one. There have always been obstacles, it has never been smooth sailing, but the word ‘disabled’ was never one that I considered when describing myself and was never suggested to me. I was just sick a lot or tired or in pain, but it always went away eventually. Then one day it didn’t, I got stuck being sick and my world started to shrink. It happened so slowly and so suddenly at the same time, if that makes sense. I was waiting for it to go away and waiting to heal, waiting like I had done so many times before. I put my head down and pushed on, I kept on going with what I believed to be the most important things; finishing my Science Degree in the right amount of time, finishing my Nursing Degree then completing my nursing graduate year and in order to do all that I stopped living and taking time to enjoy myself because really, what is more important than an education? What is more important than financial security and employment? At least that’s what my upbringing and society’s view of illness and disability had told me. Today Claire smiles at how naive Claire from 11 years ago was, but would today Claire do things differently? I honestly couldn’t tell you.
It turns out that there’s only so far you can push on with your head down, ignoring the world, before you run into something. For me that something was Dysautonomia. The something I couldn’t ignore, the something I couldn’t push through anymore. The something that was my body’s way of telling me it wouldn’t be put aside any longer, that it wasn’t the same as everyone else’s and it needed to be treated differently; and I ran into it hard. It turns out it had been trying to tell me something for years but nobody was able to hear it or fully understand it.
The official ‘disability hat’ has been a newer addition to my wardrobe; I’m still wearing it in, still getting used to it and still exploring what it means to me. It was only a word I considered when I applied for the Disability Support Pension after finally acknowledging that I wasn’t going to be able to go back to work any time soon. It was a difficult hat to put on. It didn’t feel right and I didn’t like it. Wearing the hat made it official. I hadn’t really thought much about the fact that I had been chronically ill for 7 years preceding that date – I’d just been sick, I was going to get better. I hadn’t thought about the fact that I had been unwell off and on for most of my life, there were always reasons and never anything to be concerned about – I was young, I was sick, I would get better, lots of people did.
Now each year living with chronic illness brings more clarity, more answers, more light shed onto the complex puzzle that is my body and mishmash of interesting, inherited bits and pieces that are not-quite-right but not wrong enough to be a huge and obvious concern. Every ‘aha!’ moment brings a little more clarity but there are still so many questions, so many ‘if only’s and so much frustration. But it’s not all anger and sadness; there is beauty, achievement and discovery in this version of my life too. Like living with a rabbit.
When I first got my rabbit, Lily, like so many people I was completely naive and thought that a rabbit would be an easy pet. Boy was I wrong! She was stubborn, impossible to train, bullied the dogs, ate everything, marked her territory in inconvenient places (yeah it’s the female of the species that does that!) and attacked pretty well everyone. But over time we learned to live with each other and work with each other. She calmed down and became more manageable and I learned how to interact with her properly and found that there are moments of unexpected beauty and loveliness that come from living with a rabbit. Moments like finding self-sown sunflowers in the garden from her hay and seed leftovers.
Similarly there are unexpected moments of discovery and achievement with living with chronic illness. Sure my life may not be what I had imagined it would be but if I had not gotten ill I don’t know if I would have explored Millinery, taken up writing again, discovered the rockabilly scene, walked any of the Camino de Santiago or met the incredible people I have had the honour of meeting in these new circles that have opened up to me.
I don’t know what the future holds for me, I have given up trying to see into it, to plan much further than a few days at a time. I have had to change my view of the future and my plans for it so many times that I don’t think I can stand the heartache of planning anymore. What I do know is this – acknowledging that you have a disability, accepting it as part of your life does not mean giving up or giving in; it means changing and adapting. Life is change, evolution requires adaptation; how else do we grow to become something more and realise our potential? So this is me, here and now not giving in but adapting.