I am a different person to the me of my twenties. Back then I had no clue I had hEDS or MCAS and absolutely no idea I was about to endure a decade of solitary confinement and lifelong imprisonment by M.E. I worried about cellulite (!), putting on 3lbs and what the world thought of me. I used to paint my toe nails, shave my armpits and nourish my skin with Astral moisturizer (still the best moisturizer around, even if you feel like you’re slathered in grease 😉 ). I dreamt about who I would marry, if I’d have children or whether my career would take precedence. Normal shit y’know?
I am now 51 and have been to hell and back. Literally to hell and back. With hindsight, I have no idea how I have endured some of the experiences I have lived through. It has changed my soul.
When I was bedridden, I prayed to die. Every day. I wouldn’t let my dog suffer the way I suffered. I don’t even have words to describe what having severe M.E. feels like. It is pure bodily torture, every nano second of every day and on top of the physical suffering every single pleasure in life was denied me. I couldn’t eat. I absolutely couldn’t sleep. I couldn’t watch TV. I couldn’t stand sunshine. I couldn’t chat with my friends. I couldn’t read a book or listen to music. I couldn’t sit upright. I crawled to the loo and back. I couldn’t shower and to this day have forgotten what moisturizer feels like. I couldn’t clean my teeth – for 4 years. I lost my boyfriend, my job, my car. And when it all got too much and my body was wracked by grief at all I had lost I couldn’t even be held by my Mum because it was too physically painful. I knew I’d never marry, or have children and the career I’d worked so hard for was gone forever. I had nothing. I was nothing. I merely existing in a poisoned state of isolated suffering.
And then the sun came out. Little glimpses at first. Shafts of light through a heavy canopy of leaves. But eventually I stumbled out of the dark woods and into the daylight. Can you even begin to imagine what standing in a sunlit flower meadow, surrounded by butterflies and buzzing insects, feels like after 14 years of solitary confinement in a dark room? Heaven isn’t some place in the sky. It’s here, it’s now. We’re surrounded by it and don’t even see it.
One of the things people say when they meet me for the first time is that I seem happy, despite my health problems. That’s because I am. I see the world differently to them. I went to bed last night with yet another migraine, feeling sick to my stomach and with killer back and hip pain. I woke this morning and my migraine has gone and, for now at least, my back and hips at least aren’t screaming at me. And within the first 30 seconds of opening my eyes I was grateful. Hugely, joyously, grateful. Then Bertie got on the bed, with his still-young eyes and cute Schnauzer mouth, and as I cuddled his warm, furry body and he licked my sweaty armpit I laughed out loud. He makes me laugh every day of his life. I had a brew and it tasted fabulous. I put the telly on and revelled in the company it gave me.
I don’t ever dwell on everything illness has taken from me. The grief of that would be my undoing and the pain too much to bare. Just writing that sentence brought tears to my eyes as long-repressed emotions surfaced. I have to swallow them back down. I have to choose, instead, to focus on all I have. Every nano second of every day is still a struggle but at least now I have a life and it is beyond precious.
This post was inspried by severe M.E. sufferer Naomi Wittington. We don’t personally know each other, but we have friends in common and one such friend this morning posted on Facebook a blog post Naomi had written. She writes with such eloquence and truth I wanted to share her world with you. If nothing else I hope it makes you appreciate what you have just that little bit more. And if you’re in the darkness I hope it makes you feel heard and less alone.