For a long time I felt it was decided for me what I could do with the time given to me on this planet.
Since coming down with mono/glandular fever at 14 years old and never recovering, coping with chronic health issues has been an ongoing up-and-down battle for me.
As currently assumed, the Eppstein Barr virus I contracted caused a condition called myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). It meant that from one day to the next my full energy battery was taken from me to be replaced by one that never fully recharges. The virus took my energy never to return it, but over time it also took my confidence, my friends, my dreams, my future.
Dealing with chronic illness is not easy for anyone, not physically, not mentally. Adjusting to the new reality that is now your life takes time.
In my case it took over 15 years and a horrific flareup.
It was after that severe low though that I knew I couldn’t keep muddling on as I had.I had been clinging to dreams that no longer suited me and to a lifestyle that had never been right for me. It had led to worsening health issues and to a view of a future that was bleak and lonely.
I knew something had to change.
Yet even after that realisation, it took me another several years to get where I am today.
Because there has been only one constant throughout the years: my inner battery always running low. Some days there is a little more in the tank, other days I’m running on fumes or feel even completely depleted. This makes any task a challenge, whether physical or mental. I always have to gauge at any given moment whether I am up for something.
This aspect of my life is a fact and until the medical world finds a cause or even a treatment or cure, no matter how much I want to change that, I can’t – and trust me I’ve tried.
Accepting this is hard. Accepting that certain dreams will forever stay out of reach is hard. Accepting that some loved ones can’t deal with the uncertainty of chronic illness is hard. Accepting that for the rest of your life your days will be dictated by how you physically feel instead of what you want to do most is hard.
But I got there in the end.
Because I realised, after a lot of hard mental work and the help and support of close friends and family, that I am more than my illness.
However, when every decision on any given day is dictated by your health, it feels like it is your entire identity. On bad days and during bad periods of severe flareups it is nearly impossible to remember it isn’t.
But that is the truth: it isn’t.
Yes, I am sick. But next to that I am more. As is everyone out there among you dealing with debilitating illness, or with any burden you have to carry that weighs you down.
I now see that yes I am a spoonie – a nickname for those with chronic illness-, but I am also a daughter, a sister, an aunt, a friend, a writer, a woman, and so much more.
It is those areas that I now put the energy that I do still have into.
Because I realised that every minute I am able to spend a little energy, I must do so on something that makes me happy, on something that excites me, or fulfils me, on something that gives me purpose and hope for a happier present – and future.
And that change in perspective has made a ton of difference.
My body is sick and I still have plenty of bad days physically and mentally. But my mind is a lot healthier these days. Tending to it has taught me that chronic illness isn’t the end of dreaming, of living, of happiness. Despite my daily limitations, there is still a whole lot for me to do, to enjoy, to see, to learn and to feel.
But it is up to me to decide how I want to spend those precious hours.
And so here I am: writing my first proper piece on Patreon. I know I’m not going to change the world with it. But even if even one person out there can relate and feel less alone in this crazy world – currently even crazier – than I am spending my time here well.
P.S. I would love to hear from you! Do you have any experiences with chronic illness or another burden that weighs heavily on you on a daily basis? How do you cope? If you want to share, you can in the comments! Because I am also here to share experiences. x