"It's not the despair, it's the HOPE that gets you"

I often think of this quote, it has resonated deeply on many occasions, and none more so than the troughs in the rollercoaster that is dealing with chronic illness.

Over the years since the twins were born we have coped with everything life threw at us, sleep deprivation, severe reflux, feeding difficulties, poor growth, swallowing problems, bowel problems, food allergies and exclusion diets, hypermobility, subluxing joints, pronating feet, autonomic problems.... the list feels endless at times. But you get on with it. it's not as if there is much choice! But when someone hands you a buoyancy aid you grab it. Fast. With both hands....




I've often wondered why I accept offers of hope, promises of improvement when I'm actually coping fairly well. Is it because I recognise I am walking an all-too-narrow tightrope and actually a balancing aid might be handy, or that I acknowledge a safety net might not be such a bad idea? Because in all honestly I know my kids. I KNOW there is no magic wand - for God's sake I think I would have found one by now if there was. Or bought one, whatever the price.

But I think we all assume that someone has the answers, the missing puzzle piece or the ability to lift us out of whatever we perhaps wish we had never got ourselves in to. Because surely, we weren't meant to be in such a situation after all?

I remember hearing about Eosinophilic Disease for the first time many years ago and silently thanking God that my children didn't have that diagnosis. I couldn't think of many things worse than a little-understood and almost impossible-to-treat, incurable gastrointestinal disease. Obviously there are many things worse - on so many levels. But I preferred then to think of reflux in its most simplistic form, totally curable at some level. After all, our (then) consultant had himself written a paper with a neat flow chart for treatment, where all ends clearly offered a finite solution. So discovering three years ago that this unpleasant diagnosis did indeed apply to my children was a bit of a shock, and felt not a little unfair.

Each time someone offers you a bit of hope your heart leaps. The adrenalin kicks in and you start to take your eye off the ball. That "ball" is coping, it's the hamster wheel of life where you know your niche and get on with it, where you understand your limitations and work within them. At whatever level, we all do this. But hope makes you look beyond, at what might be, the what-ifs, the maybes. It's dangerous territory.

We never learn though, and each time we get caught up in a frenzy of hope, focussing on the possibles rather than the realities. And unfortunately, each time the fall seems that little but further. A bit harder, and a bit more painful.

Sadly it's the nature of chronic illness though, and we humans have this inbuilt sense of hope. I'm an optimist much of the time, the only people who see my pessimism are family and very close friends. I unravel a little, then pick myself up as everyone else no doubt would and carry on. It gets that little bit harder every time - but I know I will still grasp that hand of hope every time. Because where would we be without hope?