So, here’s a blog, like here’s a thing.

I was supposed to be doing this ages ago, and I did, a bit, then time just kind of dissolved in front of my very eyes.

What should I write about?

Would anyone be interested?

Well, I can waffle for Britain, so I’m giving it a go as though I am just chatting to you all.

I’m Eileen. I’ve had fibromyalgia for what seems like a lifetime, but is about 10 years since diagnosis. Won’t go into all that now, ask questions in the comments if you want to know any more.



So I said I would do the blog, then fatigue happened, and you all know what it is like, no amount of trying to think will get words onto a page, or dishes washed, whatever the job in hand is.


Today, or, more specifically, in the middle of the night, I was awakened, probably due to pain, or a misaligned pillow, or a draught, or a snoring dog….who knows. But it was light at 4.42am. Maybe a waning moon was to blame, but the sky was clear with thousands of stars. Makes me realise how small I am compared to the universe. But I am just as important as the next person, and so are you. We all are. No matter what our contribution to society is, we are all valued in some way or another.

Beryl and Bertie

These problems we have…. ME, FM, Long Covid… they do not define us, they just make life somewhat different to what it was before. Now one bit of advice I give newly diagnosed folk is…. don’t hark after your life before. I spent a good couple of years wishing I had my old life back, to no avail obviously. I also wasted that two years because I could have been learning to live this new one.


You might say this is all positive thinking ‘stuff’ but I find its better than being on the negative stance all the time. That only brings extra wrinkles and a really impressive scowl (one that can frighten babies!)


Normally this time of year is a build up to my birthday. Being a December baby it’s all about me before its all about the fat man getting down the chimney. But this year, in my guise as crafter extraordinaire, I have Christmassy stuff all over the place ready for our Wreath Making workshops that are planned for December. And do you know what? After almost 62 years of the ingrained message from my mother (all very well meant obvs) that we don’t mention Christmas until after Eileen’s birthday, I have broken the rule and I feel quite liberated.

But its not just about Christmas is it? This is about my life, your life, NOW. If you fancy doing something at 4.42am because you are awake then go for it. If you need to nap in the afternoon call it a siesta and live the Mediterranean lifestyle. It really doesn’t matter.


I think the point I am trying to make is we have to be kind to ourselves and realise that we deserve some self-compassion and consideration.


Now I know that lots of you will have husbands, wives, families etc to accommodate in your daily life. I have two dogs and if I am just chilling they will also just chill. If they want to play they bring me tennis balls to throw across the room or, if I am particularly lucky, to bounce off a wall through a door and into the hall. They live in the moment and it is great. I thoroughly recommend it. I have had a husband, and three children and loved every minute of that life (apart from the arguey bits, and the cross bits, and the irritating bits, and the messy bits, and all the incessant jobs that come along with a societal expectation that I would be a domestic goddess a la Nigella Lawson and a supermum….who my children lovingly call The Mothership.) When I look back at that lifetime I see that I pushed myself to get things done, and felt guilt if I didn’t manage to finish. Like when I was so tired decorating my eldest daughter’s clown birthday cake, as I put it in the fridge, away from tempted little fingers, it slid off the plate and landed on the stone kitchen floor. We have laughed about it since, but at the time it was awful. I had to take her to the supermarket and buy the biggest gooiest confection of a cake with all the E numbers that make a child hyper just by looking at it. And it cost the earth!


But its a memory about life with my child.


I also have made memories whilst going through the Fibro lifetime, and now I’ve got a Long Covid lifetime to add to the mix. No matter what we face in life, we make memories and that can only be good.


I read a thing about neurotransmitters recently. Don’t worry I wont blind you with science., but apparently our brains are hardwired to latch on to the negative. We are essentially evolved from people who had to think every day where their next meal was coming from and hope they didn’t die of some unknown illness. So here comes the hard-wiring for survival. Fight, flight, faint or freeze.  So now if we have a day where lots of lovely things have happened but one shop assistant had a scowl that would frighten a baby and wasn’t helpful with the groceries, it’s that scenario that we remember and tell our family or friends first. Seems trivial, but think about it for a moment… If that shop assistant was having a bad day, maybe she has health issues too.


So remember all the lovely things. The cup of coffee brought to you as a gift, the sunshine through the window, a smile on your loved ones face.


Bye for now, I will be back, just not sure what time or what day……x