After over 5 years of M.E advocacy, it was wonderful to have my efforts recognised by the wider world on Wednesday evening. I receive awesome support from the global M.E community on a daily basis but having my work highlighted and celebrated on Wednesday evening was very special to me.
What is the Directory of Social Change? Take a look
The awards event was held in the House of Lords in London (for Foggy’s international Followers who may not know what that is – here you go!
Some of you tweeted that you don’t know how I do it when I posted about feeling slightly crashed but on my way to London on the train. I honestly don’t know how I do it. Patients know that train travel is exhausting due to the sensory overload and the inability to get horizontal if necessary, add to that the need to walk around huge noisy train stations and the tannoy announcements…..it’s not exactly M.E appropriate! I armed my ears with ear defenders and just ‘got on with it’. I started to shake and wilt at around 2.30, we were at the hotel by then so I had a ‘nanna nap’ to very slightly recharge and calm everything down.
We headed to the House of Lords around 6pm, thank you to the Uber driver who dropped us off nowhere near where we needed to be, forcing us to walk a long way around the security barriers that protect the Houses of Parliament. I could feel my energy drip, drip, dripping away already…..
One of my Stripy Lightbulb CIC Directors, John Matthews. was my plus one and we made our way through security – it was like entering another country! Security was, obviously necessarily, very tight and we went through body scanners and our bag/coats were put through an x-ray machine. Foggy would have been jealous….very reminiscent of an airport!
Both John and I were awestruck by our surroundings, it’s a beautiful building and we felt privileged to be there. It’s definitely a wonderful place to hold an awards event for the third sector, people who work incredibly hard, often for little reward.
I had emailed DSC beforehand to let them know I would need a seat, I had been given a heads-up that seating would be limited due to the nature of the event. DSC staff were very helpful and I had my own ‘person’ to look after all of my needs during the event. Anthony was awesome and very helpful.
The event was hosted by The Lord Dannatt and I had my photograph taken with him when I was announced as a winner.
It was an inspiring event, I was honoured to share the evening with nominees of all categories. Inspirational people doing amazing work around the country.
Debra Allcock Tyler, CEO of DSC, said in her opening speech:
“This event tonight is about recognising the huge achievements you all make towards creating a better society for all of us…
…It is our job to serve our beneficiaries to the best of our abilities in the way we deem best. And one of those ways has to be shouting truth to power. So don’t you dare stop ‘banging on’ about stuff because people are tired or bored of it. In our sector, we don’t ever accept the unacceptable, give up the fight, or lose hope. We don’t say to someone struggling with an addiction or depression or loneliness or fear, ‘Yep, you’re right love, no point trying. Accept it and give up’. We say, ‘You can change it and we will help you!’”
I know that Debra’s words will resonate with many M.E advocates in the UK and around the globe. Over the years, I’ve been told to ‘give up’, ‘you’re not getting anywhere’, ‘why bother, get your life back’, ‘Foggy is just a hobby’, ‘why do you spend so much of your time on it?’…..all of which just drove me to work harder and prove them wrong. If you want me to do something with more passion and drive, simply tell me to stop!
I was presented with a ‘prize’ of fabulous artwork, I was holding everything together despite feeling overwhelmed and emotional…until I looked properly at each cartoon. My entire M.E life is summed up in the artwork. Foggy, Stripy Lightbulb CIC, patients, doctors, Foggy ‘sitters’, Foggy’s adventures! The illustrations were very well researched and I got damp eyes as a result. I absolutely love the illustration, thank you so much Grizelda Grizlingham
When my category was introduced by Debra, she made a point of saying that the two women in this category (Me and Marsha ) were particularly inspirational because we highlight our causes using our own personal experience. She acknowledged that to do that I/we have to be strong, resilient, and are vulnerable to negativity and attacks. She’s right, it does take a significant amount of personal strength to be able to constantly stick your head above the parapet with nowhere to hide.
I am grateful that I didn’t have to give an acceptance speech as my M.E was switching to adrenaline and who knows what words would have come out of my mouth! I had a rough idea of what I would have said but there was no guarantee that I would have remembered any of it!
It was a privilege to be in the same room with so many people with an interest in the third sector, finalists had badges with gold stars on them and so many people had read about my work in the event literature and wanted to talk M.E and my work. I think I opened a few people’s eyes as to the severity of our plight and I told a number of people to watch Unrest and look at my websites, the work of an advocate is never done!
I had offers of travels for Foggy and speaking opportunities so fingers and paws crossed for future advocacy. John and I were there at the end, two of the last to leave…yay! But also…..bum!! That caused me to be very unwell the following day, a migraine and P.E.M on the train journey back to Portsmouth was not good! As I said, I was running on adrenaline and that means the crash will be a lot worse than usual. I’m expecting to feel repercussions from the over-exertion for the next few days, it was sooooo worth it though!
After the event, I met up with my parents who had been chilling in a local pub eager to hear my news! I had sent them a smiley emoji to warn them that I would be very, very, happy when I saw them later. Little did I know that my Mum had been chatting to two US policewomen all evening about my M.E work and the awards event. When I walked into the pub I was greeted with overwhelming enthusiasm and interest in what I do. I was given a gold US Marshall pin badge and it’s going to take pride of place at Foggy HQ. They both took Foggy business cards and promised to watch Unrest and help to spread the M.E word when they get back to the US. A.M.A.Z.I.N.G.
All in all, the past few days have been exhausting, overwhelming but absolutely blooming fantastic.
Thank you to the person who nominated me, thank you DSC for shortlisting me and, obviously, thank you so much to Foggy’s Followers for voting for me!
(and Foggy OBVIOUSLY)
P.S. Don’t forget to donate. Foggy’s fund is global and he accepts all sorts of currencies. Donate here Every £, $, or euro counts! Help Foggy to raise as much money as he can for Cure ME/MECFS Biobank. We need research funding! Thank you.