So it’s been a hot minute since we last spoke and a lot has happened in that time. Don’t worry though this is a completely C word free newsletter! (A rarity in this day and age!!)

Over on the ‘Gram I have been speaking about the ways in which brain fog affects me and the shame that I feel with that. Some of you might not know (or you suspect from my terrible spelling) that I am heavily dyslexic. So much so that I couldn’t read or write properly till I was 7. With that there comes a certain level of shame, having been told for many years that I wasn’t as intelligent as other kids (which is completely wrong BTW).

Oh medication, having been around free range humans (aka those who are not housebound by chronic illness) I’ve been reminded of how much they cling to the idea that medication can fix everything. That when you get sick the doctor’s hand you pills that magically make it all ok again. 

Any one who’s been chronically ill for more than a hot minute will tell you this is not the case. That medications come with their own issues and some of them are indistinguishable to the symptoms you are already experiencing, so you are never sure if they are helping or hindering.

I am breaking the cardinal rule of pain club and I am actually going to talk about pain.

It was only the other day, when I was talking with a fellow spoonie friend that I realised to some extent we all actively avoid talking about our pain.

I think in the beginning it’s about not creating too much fuss or even just not really knowing how to handle the amount of pain you are in. But as time goes on I find myself talking about it less and less. It’s not for fear of my network, I have some incredible support both online and offline. It’s more a fear of admitting how bad it really is.