It’s been so long, that I can barely remember feeling well. I was diagnosed in my early 30’s but I’ve had symptoms since my teens, and experienced a few mis-diagnosis along the way. My boys have no memory at all of me being able to walk, run, play, be a mum, and my ex-husband saw me decline through the years too, and remembers little of the ‘old’ me.
When I first became really sick, I don’t count the years in my youth, I tried absolutely everything to get better. I wanted me back!!! Every new med offered I grasped with hope, every new avenue to peruse, I followed with everything I had. I tried diets, supplements and alternative health therapies too, grasping each one with the hope of relief.
I became a sick person, I became my disease. I searched the Internet, chatted on forums and FB groups, read every book I could find. Darn, even my music choices were illness related! I just wanted to be me again…
But all that was really happening was I became self-absorbed in a cure, or just to feel a little better.
Yes, things have helped, my medical combo of high dose biologic, mixed with high dose steroids and my opiates, have given me a little energy. My diet has helped alleviate some of the symptoms too, and I’d be lost without reflexology and reiki, and my handful of supplements each day. But it was an obsession finding them. A huge desire to get well soon.
It’s taken years and years of living like this, and looking into myself frequently to finally find acceptance of how I am, who I am.
Yes I can no-longer do things, many, many things – after all I’m a powerchair user now.
Yes I feel dreadful with fatigue, insomnia and fever everyday, but I also have good parts of the day too sometimes, where I achieve things.
It was being told that there was no miracle, that only a very very risky stem cell transplant,had any hope of helping, that I snapped out of it.
Was I so fixed on finding a cure that I’d risk my life so blatantly??? Yes I’m already reducing my life with the meds and the risk of an attack on organs, but to go into hospital for a month, knowing my chance of dying there was 1 in 14??!!??
Yes I was sick, but could I live with it???
My answer came from my eldest, he was 11 at the time. We were frequently sat around, my now ex-husband and me, discussing the odds, and my eldest joined in. With one sentence he changed my whole perspective. “I’d rather have a sick mum, than no mum”.
It was like a lightening bolt. I was sick and disabled, but I could try to live.
So here I am, a few years later, grasping at life with two hands.
It’s a simple life, but I appreciate every moment. A cozy fire on a chilly day. Sitting beside the sea in my wheelchair watching my boys explore. Taking lots of photos to dot around the house, memories are precious. Watching the stars and moon on those long nights of insomnia. Lighting a candle. Picking flowers on our wanders on the canal. Those little things really make me smile, and realise that it’s the little things that make life, not the big fancy holidays, the exciting things. Just the simplicity of doing things that make me and my boys happy and contented.
I don’t know how long I have left, but my prof, after refusing the stem cell treatment, made it quite clear that it would be a much shorter time. But I’m enjoying every minute, and not just those when I do have energy, the bad times too.
A funny film can distract a little, a chat on FB can lift the mood, watching my boys is always a mood changer, or just simply watching the birds feed through the window, from my many feeders dotted around outside.
And you know what??? I am me! I might be a different me from before, but this new me is pretty awesome!