Sensory overload

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


  1. This is really wonderful! I thank you so much for what you re doing to raise awareness although sorry that you pay a price in terms of health.


  2. Yes is important to ignore those feelings of being a fraud as the illness is very misunderstood and it’s greatly fluctuating nature and overdoing it now will hamper any potential recovery. I was one of the people that pushed through due to the crappy advice from my Doctor and the fact that I was a very motivated mind over matter kind of person and slowly the illness just worsened over time as I just pushed beyond my limits as that was the poor advice I got that I will recover if I exercised more and pushed myself more. Not realising this was the opposite of what I should have been doing. GET then made me severely ill and completely bedbound for well over a year and I’ve never recovered to my pre-GET ability in the years since. If you think this illness is bad now, it can get a lot more severe and disabling if we don’t be rest and pace properly. Harms from GET are not recorded on the the NHS. I do believe if I had the correct advice from the beginning I may have had a chance of recovery and I would have never have become as severely ill. I wish more doctors had more understanding the issues of the mitochondria for pwME as it would have saved thousands of people taking harmful advice and getting so severely ill. So ignore that pressure to perform and focus on your health and wellbeing. In the long run it will save you a whole load of pain and suffering.


  3. Thank you Gary for highlighting this horrible illness iv had it for 23 years and no-one understands the tiredness we feel just because we look okay i had a doctor who thought it was all in my head so i changed doctor there is not enough support over here for us M.E sufferers take care xx


  4. Hi Gary! 🤗✨…QUICK TIP … to help with your ‘SENSORY OVERLOAD’ especially if it can suddenly hit you from out of no-where, so why don’t you carry a little bag with some :

    EAR PLUGS – for noise damage
    ( I use the ‘flesh’ coloured ones so that no-one else can see them + if I have any ‘noisy’ visitors popping in I put 1 earplug in the side they’re most likely to be !lol!)

    SUNGLASSES- for light sensitivity
    ( I have a pair of the sunglasses that are made to fit over the top of normal glasses- they have the largest coverage around the whole eye area + they are extremely lightweight so cause very little irritation where they rest on your nose!)

    FAN- for overheating
    ( you know…lol! One of those handheld fans that fit in your handbag!)

    …So although you’d still need to get home and rest asap if your ‘sensory overload’ suddenly hit you, you’d at least be able to address some of the distressing symptoms instantly!!!

    Hope this helps Gary!
    Best wishes + hugs
    Georgie 🤗✨


  5. I’m just back at work after 3 months off sick. ( to be honest… I only went back because I was getting reminders to my “contractual obligations to attend work”.

    Thankfully I’ve been given 4 to 6 weeks phased return…. only working 3..4 hours per day.

    Anyway… first day… I last 2 hours 45 minutes. Feet ached from standing on the metrolink ( spasms through feet) … puffing and panting into work…. came home out for the count. ( gulp ). Sensory overload to the crowds…lights…pc screens…and even the baby crying on the met.

    Neurologist on 16th… praying for a miracle I don’t think I’ll get. And another occupational health doctor ( to check me out – again )… as the last time occy health said i wasn’t medically fit to work untill I had some form of treatment.

    ( oh… the joys of this illness )… though I remain positive and upbeat….in hope of a miracle cure.

    How do people manage financially once the sick pay ends. And I know esa and pip isn’t an easy ride from the lovely DWP. I work as a finance office in the town hall..and I see disabled clients worse than me fail on claims. ( gulp)

    Anyway … just wanted to share ( and have a little rant )

    Liked by 1 person

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