Disclaimer: this is definitely more of a negative, and indeed personal, post than I’d usually write. I usually try and communicate the positive elements of my life, but the last week has been an incredibly difficult one. It’s a fact that writing helps me; it makes me feel better by making sense of the situations I find myself in.
I’ve written before about some of the challenges that come hand in hand with living with chronic illness – and I’m only half sorry to say that I’m doing it again.
I thought about keeping this piece of writing to myself, but if I can help one person by sharing my worries and concerns then that justifies itself to me.
Day to Day. Year to Year?
Last week, Facebook’s ‘On this Day’ feature reminded me of a post I had written on Facebook seven years prior. It was thirteen-year-old me expressing how unwell I was feeling and asking for advice. Depressingly, when this notification popped up I’d just had to be driven home after my fatigue had worsened so much that I literally lost control of my body for a short while thanks to the wonders of Tourette’s. How do you explain that one?
When my illness takes hold of my body – usually suddenly and without warning – the physical symptoms are bad enough. But when the additional worry of not knowing what your future holds hits, panic can set in. I’m realising that finding ways to deal with that worry is just as important as taking time to focus on physical rest and recuperation.
It truly frustrates me that not a single part of my life is left untouched by this illness, even when I’m ‘well’: relationships, work, family life, education, even friendships. And there is no rule book or how-to guide that teaches you how to approach being twenty years old and too sick to make your tea or make enough sense of your thoughts to form them into a sentence, or even just to walk in a straight line.
So, more often that not I choose to apply an extra layer of makeup, stay quiet and troop on.
But it can feel like I’m living two different lives. The public Rosie, who is energetic and enthusiastic and throws herself into everything, and the private Rosie, who quietly works away behind the scenes so that public Rosie can survive.
Answers on a postcard
A few weeks ago I attended a clinic at the hospital for another health issue I have. I was told me that, on paper, I was the ‘healthiest person in the clinic.’ While I’m obviously grateful there are no immediate threats to my health, the slow burn of being unwell day in, day out takes its toll.
The fact there is no blood test result to explain why I feel so awful is another challenge. Because with that lack of reason, comes a lack of hope. How can doctors help when they don’t know what’s wrong?
Each morning, I don’t know whether I’m going to wake up and feel okay, wake up and feel okay for a few hours then crash, or whether my whole day is going to consist of feeling unwell. Then you must throw in the question of how long will it last to the mix; will it pass in a few hours, a few days or a few weeks? This unpredictability is the worst to deal with.
Since I was just eight years old I have lost my grasp on ‘normality’. That’s more than half of my life – including a large chunk of my childhood and the whole of my teenage years – impacted by how debilitating this illness is.
Keep on keeping on
Today, I’m choosing to let private Rosie have her moment.
I’m allowing myself this little blip, and letting myself acknowledge how i’m feeling but I refuse to let myself wallow in it. I pride myself on living a busy life, and living it well.
I am lucky that my health has improved to the point it has, and I know that I so many people are fighting their own battles, but as I say – if one person approaches their unwell friend with a clearer view of their life or is reading this and thinking ‘gosh, I know what she means’ and feels less alone for it, it’s a job well done.