IC awareness day 8: memory

Write a piece about the best memory you have after getting diagnosed with IC or before the pain began. (I know that not everyone involved has been officially diagnosed!)

The point of this exercise it to show that through all of the pain and suffering we, as humans with chronic conditions, are still quite capable of remembering the good things.

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My best memory after getting diagnosed with IC?

This is really tough. I'd rather write about the after than the before, as it seems to make more sense to focus on the now.

Most of the time since being diagnosed in April has been - on some level or other - heartbreaking, depressing, agonising, boring, or just downright painful. So many bad memories, upsetting events, sad breakdowns of connections with people and loss of things I took for granted before (walking up a hill, strolling around town without thinking of toilets, watching a decent film without 3 toilet breaks)... Hard to focus on the good stuff since April.

But I think perhaps the best memory is a simple one.

It was when we were on holiday in Devon recently, and we had to come back early as I was in so much pain (you'll know this if you've been following my blog). The day we packed up the cottage, we went down to the sea to say goodbye and ended up staying all afternoon. It was a beautiful August day with a slight wind and the sea was fresh and grey/blue. My Pre-Pubescent Daughter always dives in like a little fish even without a wetsuit; my Blue Eyed Boy skirts on the edges of the sand, jumping the waves, juggling awe and excitement.

For some reason even though I wasn't feeling well enough I took off my clothes, put on my turquoise size 10 swimsuit which once again fits after all my weight gain and weight loss over the past twelve months, walked down to the water hand in hand with PPB, and sank into the sea. It was freezing , and the pain went away.

I realised I was entirely pain free.

Having only used hot water bottles for pain relief before, this was a revelation to me (I now use ice packs too, and alternate).

So the happiness? It was the freedom. It was the connection with my daughter; we played on her body board, we giggled, we told stories, we had 30 minutes entirely uninfluenced by my pain level or needing to urinate, because it was absent.

BEB looked a bit worried, which was slightly frustrating as if I went to comfort him we would lose this precious time, and I couldn't leave the water without the pain returning, but after a few minutes he wandered off to gather shells and look for shrimps, and my daughter and I were left alone in our bubble of joy, two unnoticed mermaids in a wide, silent ocean.

Of course, it didn't last. It got cold and I had to return to my little boy, who started to think that perhaps I was going to just keep on swimming. But while it lasted, it was beautiful.

(Incidentally, my second best memory is my last appointment with The Big Cheese, my consultant, where he finally took me seriously, and Elmiron, which might possibly actually help me from this godawful illness, has become a possibility - you can read about this in my August post 'much better than expected'. It's pretty sad that my second best memory in 5 months is an appointment at my local NHS hospital in the scummy urology department, but there you go; 'well, here we are', as my Granny used to say....)