life is

I’d been crying on and off all day, generally wallowing in my VIP pity party for one, complete with pretend champagne (Vitamin C powder mixed with water), when I saw this poster. It made me stop snivelling immediately and in that second I had this brilliant moment of clarity. Clarity and a slight tickle as snot dripped over my lips.

Chronic illness is miserable. You don’t need me to tell you that, we’ve all had many many times where through tears and bloodshot eyes we’ve uttered the words “I want my life back” or “why is this happening to me?” Both of which came out of my dry cracked lips today. It’s a natural human response to such a drastic change in your circumstances. The slightest thing can trigger it.

Today it was folding laundry. I used to fold a lot of laundry in my old life, now I don’t because my arms are too weak to hold up heavy items of clothing and continually move things around. So there I was, determined to ‘do my bit’, very slowly folding item after item consciously trying not to lift my arms any higher than they needed to be. Then all the memories of my old life came flooding back. I sniffled through it still determined to complete the task, then once I’d finished I lay flat on the bed, exhausted, and the floods of tears came. Not quite biblical flooding, but you get the idea.

I miss my old life. I miss it dearly. I sometimes feel consumed with feelings of loss, loss of how my life ‘should be’.

This is the deal. I’d been viewing my old life as ‘how it should be’ and my new sick life as ‘wrong’. Of course I’m doing everything in my power to be well again, but at the same time, feeling like this is all ‘wrong’ just makes me unhappy. Pining for the way it used to be isn’t healthy.

Who’s to say I wasn’t meant to get sick? Who’s to say this isn’t how my life is supposed to be right now? This could be the path I was always meant to take, and I’d be lying if I said I hadn’t got anything positive from it.

Shiny. Can be re-used as a blinged up hamster cage after it's done changing your life. Handy.
Tombola. Can be re-used as a blinged up hamster cage after it’s done changing your life. Handy.

Chronic illness is life changing, it puts all the bits of your life into a raffle tombola, destroys some of them, and then spits out different things. I made a list of all the things I’ve lost and all the things I’ve gained due to my health changing. Want to know what the conclusion was?

The vast majority of things I’ve lost I can regain once my health improves, things like a meaningful job, a house, a busy social life etc. But the things I’ve gained I don’t think I could’ve gained in any other way. I’ve gained strength, determination, insight, empathy, I’ve learned who my real friends are, and I’ve learned to trust my instincts. Those are the things people tend to gain after decades of ‘normal’ living. I’ve been lucky (!) in that I’ve had them dumped on me in one big hit by the awful circumstances I’ve found myself in.

Once I realised that I’d got such invaluable things out of my horrible, traumatic few years, I stopped feeling so scarred from it. I started to heal. I feel much more accepting and at peace about everything that’s happened to me.

I don’t think being healthy is how we should be, we don’t have the automatic right for our bodies to work correctly. We are human, things break and go wrong, we pick up infections that disable us. This is life, and eventually we die. It’s normal, and it’s how life is supposed to be. We can hope to be healthy and live a long time, but it’s not our god given right. Those of us who are healthy are extremely lucky, because they get to experience lots of things about life that the severely unwell don’t. But then we experience a different kind of life, maybe we can’t go hiking up mountains and throwing ourselves out of aeroplanes attached to little more than a blanket with ropes, but we experience life from a different angle, through a different lens.


Skydiving isn’t for us, but I’ve experienced such powerful empathy and kindness it’s blown me away. I’ve experienced what it feels like to stubbornly fight for something I believe in, against all the odds and huge opposition, when I wasn’t even well enough to pee without help. I would never have experienced these things if I hadn’t of gotten sick. Who’s to say one experience is more valid than another, or more of ‘how it should be’? Should we be throwing ourselves out of planes anyway?

So why feel down that it’s not what it’s supposed to be? One day I will be well again, I’m going to make myself well again. Ok, so I’m not a ninja laundry folder anymore, but for the time being, it is what it is and that’s ok. I’ve got a whole bunch of new skills and a new appreciation for life.



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