It’s 05:02, I sit and write at my desk inspired by the sound of the wind and the rain lashing against the window.
I haven’t yet slept and I am due to start work in 4 hours.
Fibromyalgia is like being caught in a wild, wrathful, winter storm. You could be stuck in it for days, weeks, months or even years.
Your body decides that it is going to rage war against itself and there is nothing you can do about it. You have no choice, no matter how strong your mind is unfortunately it’s your body that makes the decisions. Before I became ill it was the opposite way around and I put my body through whatever my mind told it was going to go through.
Occasionally you are tricked into thinking that you have weathered the storm, often it tragically turns out that you were only in the eye, just long enough to feel a little better for a day. Again the storm returns and gathers you into a whirlwind and it rages on. For how long? You never know. Fibromyalgia is a trickster, villan and a con artist. Tomorrow you may wake up and feel a little better or you may feel a little worse or much worse.
I’ve had Fibromyalgia for 10 years and I know all it’s tricks, twists and turns. It takes time to learn this and even though I have been plagued by this evil beast for a decade, around a third of my life, it can still catch me out from time to time.
I find the best way for me to navigate through it, is to take each day as it comes, accept it for what it is, let it be, don’t try to fight it or let it get you down. The temptation to wallow is something I have always fiercely resisted. It serves me no purpose, it doesn’t make me feel better so I avoid the pitty party like the plague not matter how many times Fibromyalgia invites me, I never say yes and I never RSVP. I try to always keep the hope alive within that better days are coming. I just have to be patient. Even on the days/weeks I am confined to my bed, I always find something positive from that day. No matter how minuscule it might be. I find that golden nugget and bask in it’s glow. When I say minuscule I mean minuscule. Teeny tiny, microscopic. To most it would seem like an everyday thing, nothing worth even giving thought or consideration. Something that most people wouldn’t even notice.
You might say, what could you possibly find positive about lying in bed all day in pain unable to move? To that I would say. I listened to music, reminisced in most fond memories, exchanged message with my friends, planned my future, wrote in my blog, read to my children, watched the ships coming into Kirkwall Bay from my window. The things that most people take for granted are the things I hold most dear.
Fibromyalgia has taken so much away from me but it’s also given me so much too. It’s made me appreciate the small things in life, the things that most take for granted.
My empathy towards others is endless, it has no bounds.
Part of the reason I write is to help others with chronic illness, or those friends and family members who are affected by it. It creates awareness of this condition. I hope that by creating awareness it can also create understanding, so other people don’t have to go through the things that I have gone through. The loss of my job because they didn’t understand, the loss of friendships because they didn’t understand or had no patience for what I was going through. The predjudices and judgements I have suffered and that so many others have too. I realise that you can’t make people understand or care either. They have to want to do that for themselves and no matter how loud I bang my drum people may hear but they will never listen.
One thing though that I will never fully grasp is the friendships, relationships and bonds with people that drifted away because I didn’t get better. When they all abandoned ship and I was the only one left behind. I asked myself, was any of it real? We’re they really my friends, my colleagues and co-workers or was my life pre-Fibromyalgia all built on a pile of sand. A house of cards, destined to come crashing down. Why was I only valued when I wasn’t chronically ill?
I realise that some people simply don’t have the capacity to care about others on a deep level. Only on the surface and never any deeper but do you just abandon people because they become unwell? If my chronic illness had an expiration date, would they have stayed. Would they have embraced me more? Have they ever stopped to think that maybe they should have tried to understand instead of wiping their hands so quickly of me? Before throwing me in the reject bin. I accept that it’s something that I may never know. Maybe one day I will ask? Why did I no longer matter to you when I became chronically ill? The harsh reality that most people have an expiration date on compassion and after months go by without you getting better. People just stop caring. The visits stop, the phone calls stop, then the texts slowly grind to a halt. It’s a cold, hard, cruel, bitter reality that life long chronic illness sufferers have to go through on top of the mountain of physical and emotional changes your ill health puts you through. Not to mention the horrendous side effects from the mountains of medication. It all ends up in a toxic mix with everything else.
You don’t have to have suffered from a chronic condition to understand. Google is at everyone’s fingertips. A 3 minute read and you could grasp how chronic illness effects people. Are we not worth 3 minutes?
Fibromyalgia has shown me that we never really know what people are going through of have gone through. So in a world where you can be anything. Be kind. Most people are fighting battles we know nothing about
We aren’t all in the same boat. We are in the same storm. Some have yachts, some have canoes, and some are drowning. All we can do is just be kind and rescue those that we can.
You will find in life it’s the people who have suffered from the most pain that are the kindest, that is because they cannot bare to see anyone go through the same pain that they have been through. I am one of those people