You might be able to tell by the post date that the end of July passed me by in a whirlwind. It has been an incredibly busy month all in all, mostly populated by work (and the requisite rest spells to balance things out). I can’t quite believe it’s August already and it feels a little like this second half of the year is running away but I suppose if time is flying that must mean I’m having fun? Here’s my round up of July.
July saw me back at the Royal Free for a fibromyalgia assessment. The hospital have been doing an audit of fibro diagnoses to check whether they think they’re accurate, using a fresh set of diagnostic criteria. Considering my diagnosis was made just a few weeks before the appointment at the very same hospital I didn’t feel too stressed about it, though.
After going through the criteria it was confirmed that fibro should definitely sit alongside my M.E diagnosis. The appointment was probably the first time I’ve had anyone take the time to sit down and really explain what is happening in my body. He explained the way my body works differently to other people’s whilst also remaining frank about the fact that there is so much they don’t know and that the support they can give is for management – not a cure. It was so clear and comprehensive that it gave me a great deal of reassurance and I have a slightly better idea of how to approach things now. The next step is to wait for my first proper appointment with the clinic but it seems unlikely that will be happening for a few months yet.
I was surprised, however, to find that the appointment came with a tinge of disappointment and frustration. Not for my current self – I finally feel like I’m getting the support I need – but for my younger self instead. I found myself angry that no such appointment had been made available when I was at my lowest point as a teenager. I was given no information or support back then and ended up spending more days than I would like to remember thinking over how maybe it would be better simply not to exist anymore. I sat in that appointment wondering how differently I might have felt about my body and how that might have led to a better quality of life over all of these years. I also felt frustrated that it had taken thirteen years since my initial diagnosis to get to the point where anyone has noticed that I have more than one condition. So much makes sense to me now that hadn’t done before. I have often worried that once you have an M.E diagnosis doctors stop listening and looking for anything else, instead just attributing everything to that condition and it niggled at me that maybe I was right. There are too many people like me living through these experiences and I wish there was a way to ensure that no one else has to wait so long or live through so much before they get help.
It was hard to let go of the idea of what could have been different if this had all happened sooner but I’m trying to focus on the fact that at least it has all happened now. I’m cautiously optimistic about working my way towards better health.
The bulk of my working month has been spent with the brilliant education charity FutureVersity, who I joined in July as a Programme Tutor and Consultant for their Vacation Education programme in Tower Hamlets. I spent several weeks working behind the scenes to help with preparation for the programme, amending and developing resources and attending tutor training. This week the programme launched and it has been totally exhausting but wonderful. I’m working as a tutor with a group of 14-16 year olds who will be completing activities and team challenges over 3 weeks, with the aim of increasing skills and confidence whilst keeping them engaged and in a learning mindset over the summer. Alongside this, I’ve also been thrilled to join Future First‘s pool of Freelance Facilitators to deliver their workshops in schools and spent a hot and sunny day with Brook doing outreach work in Lewisham.
Finally, this month marked one year since I went freelance which I still can’t quite believe. I wrote a blog to mark the occasion, which you can read here.
My work/life balance hasn’t been all too even over the last month but I did manage to squeeze in a couple of brilliant arts experiences.
First, I went to see The Jungle which has moved from the Young Vic to the West End. It was an incredible piece of theatre about the stories and experiences of refugees in Calais. From the set, which places you in the middle of the action, to the outstanding performances of the cast it’s a masterclass in effective storytelling and using the arts to inspire action. The work of the charity Help Refugees is promoted around the theatre and at the end of the show, so that the audience aren’t only moved by the stories but can act to change the future. I would love to see more of this sort of production.
Secondly, was PROCESS! Fest, a zine festival hosted at Somerset House and curated by OOMK zine. The event offered workshops, a zine fair, a pop up zine library, talks and a communal table to share zines. I took along two of my zines to add to the pile, bought a rather large collection of zines and attended a talk on using print publications in activism (a personal area of increasing interest). I found the event thoroughly enjoyable and it definitely helped to energise me in my own zine making (as well as increasing my TBR pile).
My own creative work has been quiet this month so I was glad to have the chance to take inspiration and motivation from others. Let’s see what August holds.