Bigger than ever

Our community gets such a bad rep. We are slated left right and centre for daring to ask for better. Better care, better research, better science, better funding, better representation, better media coverage…

All I saw on Blue Sunday was a group of people creating a moment of joy for themselves, when we are well within our rights to have completely thrown in the towel by now.

People all over the world moulded little tea parties around their health and the restrictions that their health has placed on them. For some, that meant a belated cup of tea and a biscuit in bed in the dark the day after the event. For others, they hosted zoom calls with their friendship groups. Others had socially distanced bake sales. Some gathered with their families for an afternoon of celebration. Some lit blue candles as they are confined to the dark.

And I for one couldn’t be prouder.

What we face in a single day is more than most people will face in a lifetime, or at least not until end of life care or old age. And while we face that, we are cast aside and forgotten about.

But not by the charities that we were raising money for; never by them. I have had the chance to work more closely with M.E. charities over the years and am heartened by all that they are doing for us and on our behalf.

So I am elated that not only did we come together for a day of escapism, but that we could support the charities who want to make our lives better, be it through support, advocacy, biomedical research…

I have been protective of Blue Sunday for awhile. M.E. makes my life quite different, and much smaller, than the vast majority of people my age. So the importance of my little tea party idea is perhaps magnified by the fact I don’t live a ‘normal’ life.

Every year it is hard to see others claim the idea as their own. And it did feel like a risk to shout a little louder, and involve for charities, because there was the chance the origins of Blue Sunday could be lost or forgotten. Blue Sunday, could have been taken from me, and as the biggest and only thing in my entire year, that felt daunting.

But it was time, and I was feeling brave enough. I took a gamble and reached out to more charities, and my goodness look at the reward. All of the charities were onboard and the support I have received from some of them has been outstanding.

A friend said something before this year’s event that made the world of difference: “the cause is more important than the credit.” And I am learning that I know, we know, that it was me who started Blue Sunday and that that is enough. It is time for it to be Ours.