Savouring it

I apologise in advance if this seems self-indulgent. Perhaps I’m only writing it for myself anyway.

It is never me who empties these tea party boxes. I never lay the tea sets on the tables, never hang the decorations or balloons. Never walk down the village hall driveway to put out posters directing people in. Never boil the kettles or pass out the teaspoons. I never collect the dirty cups or do the washing up. I never pack everything away, carefully wrapped in bubble wrap. On the day of the tea party I can often feel a little frustrated. I can’t even be sure to chat to each guest myself. My health simply doesn’t allow it. I’m not well enough for that.

The frustration and the guilt that so many of my extended family are doing so much to make the day a success can make me feel quite rubbish.

So sometimes I forget what it is I have started.

And so it has really hit me hard to see everything Blue Sunday related strewn around me as I rest on the floor. 8 years ago there was no tea party for M.E. I started it. Me. And look at how big it has become.

It wasn’t even meant to become a ‘thing’. I just knew I wanted to do something that M.E. sufferers themselves could join in with. I had met people online whose lives had truly been decimated by this illness. They needed bringing to people’s attention. I wanted to raise money for support and biomedical research but my goodness did I want to raise more accurate awareness. Just a few family members and friends coming over for tea to actually mark the fact that M.E. was a condition worth marking.

As I sit surrounded by the tea party boxes filled to the brim with tea spoons, napkins, teapots, sugar bowls, cups and saucers, cake knives it dawns on me that I did this. I started this.

Every year over 70 people turn up to mark ME Awareness week with me and my family. 70 people who may otherwise be completely unaware of the reality of M.E.

There are leaflets with information on that you won’t find in a doctors surgery. There are photos of those joining in online because they are too ill to leave their homes and join me at the real life event. There are snippets of the uneducated things that have been said to M.E. patients.

It’s the bunting that makes me stop and think. It was that 23 old girl who sat in her attic bedroom with a paper cutter and a laminator painstakingly cutting and stringing paper bunting. The energy that would have taken… the punishment her body would have given her for doing that.

And then there’s the fabric bunting, made by that same girl who taught herself how to use a sewing machine when all else in life, all of the hobbies she’d had, felt beyond her reach. When she could hardly walk but wanted to try to see what she could still manage to do. The strength of that girl…

There are piles and piles of that handmade bunting. Made for this tea party idea I had because it seemed wrong to me that there was nothing I had come across that marked International ME Awareness week. Surely we deserved something.

Too often over the course of my journey with this illness I have felt utterly pathetic. Heartbreakingly pathetic. My achievements are so far from those of my peers. I still cannot shower each day, especially without it making me feel unwell afterwards. In a life knocked completely off course, Blue Sunday gave me something back. It has become my ‘thing’. If the rest of the year is trampled over by medical appointments and benefit assessments at least I will have that one wonderful, momentous day in May. It’s small fry really but it’s my greatest achievement.

Chronic illness has dramatically and devastatingly altered my sense of identity and self worth. Blue Sunday has helped so much.

Next years tea party will be Sunday 17th May 2020 in Stamford, Lincolnshire. If you’re able to make the journey you’d be very welcome.