What does ME feel like?

Tuesday, 12 May 2015

Today is International ME Awareness day. Inspired by Action For ME's thunderclap awareness campaign 'what does ME feel like?' I wanted to give an insight into what ME feels like for me.

Imagine the worst flu you've ever had combined with a head thumping, vom-inducing hangover, whilst feeling like this you've been forced to run a marathon with no training. Each morning you wake up feeling exactly the same (or worse) and have to repeat all over again.

 Unlike flu or a hangover this isn't something that goes away. If someone has ME they are likely to be feeling like this every day indefinitely. Symptoms fluctuate daily and worsen following any physical or mental activity - this is called post exertional malaise (PEM) and is a horrible trademark of the condition. This payback usually hits 1-2 days after the event making it very hard to realise if the activity you are doing is causing damage at the time. For me I can have a worsening of symptoms if I do a few hundred extra steps in a day or read a few pages of a book, for those more severely effected trying to sit up in bed can have knock on effects for days.

I find the overwhelming fatigue very hard to explain as pre-illness I've never experienced anything like it. This isn't 'feeling tired all the time' or even feeling 'knackered' or 'exhausted' which I know I used to say all the time - well now I know the true meaning of the words! At my worst I struggle to get out of bed, I physically cannot find the energy to move my arms or legs, it feels like I've grown 10 times heavier in the night and I'm unable to move myself. This feeling continues throughout the day, my 'concrete body' as it's become known has to drag itself around the house. Some days getting downstairs feels like an impossible task, other days a short walk outside is my limit. When I think about having to stand up and go to another room it can feel as though I'm being asked to run 10 miles, and then my body aches as though it has done just that.

The fatigue isn't just physical either, I've found it harder to come to terms with the mental exhaustion and reduced cognitive function. Since being ill I have struggled or found it impossible to do mental activity such as reading, writing emails and texts, listening to music or the radio, anything that requires a bit of thinking, even talking some days! Sometimes having a conversation can feel like I'm speaking a different language, having to concentrate so hard on what is being said, effectively translating in my head then working out my response. I struggle to find words and have to stop mid-sentence, I also use completely random words at the wrong time which can often bring a bit of humour to a bad day. All these symptoms are referred to as 'brain fog' and it feels exactly like that.  A hazy, fuzzy cotton wool filled brain struggling with the most basic mental tasks that I wouldn't have even consciously been aware I was doing previously.

As well as the fatigue on a daily basis I'll have flu symptoms, unrefreshing sleep, headaches, dizziness, nausea, heart palpitations, multiple sensitivities (light/smell/sound and food) and heavy aching muscles. For a full list of symptoms have a look at my information page.

Jo x


  1. You described ME down to a tee! Great job Joanna! I'm so proud of our spoonie family, everyone has done an amazing job to help raise awareness!

    Lennae xxx


  2. You and your blog were badly missed by me.I am happy to see you back in your blog.Hope to see you continuously from now onwards.


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