Well that was quite a week.
My employer, ITV News, devoted a relatively huge chunk of airtime to talking about ME/CFS.
It was timed to coincide with a local screening of the acclaimed documentary Unrest.
The coverage included the testimony of two women in Jersey who live with ME, as well as a video diary I recorded of own experience, and then a live interview with me in the studio when I was asked some great questions which gave me a platform to try and explain the illness.
You can see my bit here…
Since then I’ve received literally hundreds of messages from friends and strangers. It’s been a struggle to keep up with them all, so much so that – for now – I’ve stopped replying to them all as it was shutting my body down.
I just hope those who haven’t heard from me don’t mind! I’ll get through them all eventually.
It’s been an interesting experience in terms of managing workload as I continue to learn about this cruel condition but also heartening to hear from people who are grateful that somebody is banging the drum for ME/CFS. It’s also upsetting and frustrating to hear the many stories of those who are struggling to get well or even struggling to be believed.
I hold onto the thought that, one day, the medical world will look back on now with astonishment that people with this illness are treated so poorly because of such a widespread lack of understanding of what causes it and how it can be best detected and treated. One day.
Back to last Thursday, and arriving at the studios at teatime I felt fine – to the point where those recurrent ‘I’m a fraud for being off ill’ feelings resurfaced. By the time I left 90 minutes later I was completely worn out, sweaty and generally done in – though euphoric at seeing friends and colleagues and at having the chance to tell my story.
Sadly I didn’t get to the screening of Unrest that night. I really wanted to but I also know I did the right thing by staying home. I was in bed by 8pm and slept right through.
I should say, if you haven’t seen Unrest, it’s on Netflix and other streaming platforms. It’s well-worth a watch and is the first time I’ve seen something that felt like somebody was describing what it’s like to be me.
On Friday night I went to bed around 9pm and slept through again.
And today, Saturday, as soon as I ventured out to a coffee shop this morning I realised I needed to be at home. I’ve been in bed from 10.30am until now (it’s 5pm) and I’ve been dozing on and off all day.
I had another bout of sensory overload this morning. Probably the most dramatic I have experienced so far. Everything: light, sound, sights, feelings, emotions, was more extreme and pronounced than it should be. It meant the sunshine into the cafe window was blinding. The background music was deafening. The words on the pages of my newspaper seemed to be shouting it me. On my way home, everything in my field of vision felt in my face, whether near or far. A strange sensation, and a good reminder to stop, lie down somewhere quiet and dark, and just be still.
Back awake now, as the week has been on my mind, I thought I would write this short blog from the comfort of my bed.
Next week is another exciting one as BBC Radio 5 Live have asked me to be guest editor of an hour of their output on Wednesday afternoon from 1pm to 2pm.
Guests will include an ME health specialist and somebody talking about things from an employment perspective – something I really want to flag up as I think many companies find it difficult to understand and manage employees with the illness.
There’ll also be time for listeners to call in and share their experiences, and I’ll be on air too, talking to them all and sharing my perspective.
It’s a real privilege and I hope it’ll help spread the word and raise awareness. I’m actively trying to dial up my gratitude for the good stuff in my life after a really rough month or so when everything crashed physically and, often, mentally.
I’ll be on BBC Radio 5 Live in the UK on Wednesday 28 February 2018 from 1pm to 2pm. You can listen at www.bbc.co.uk/5live