Monday, 12 May 2014

ME Awareness Day

Today is international ME awareness day so I'm joining in with lots of other bloggers to write a post about how ME affects me. I'm lucky to have mild ME which means that generally I can manage to live, what looks to the outsider, a relatively normal life and the reason we call it an invisible illness, however it still impacts on my life. I cannot do the amount of exercising and socialising that I used to do before I became unwell in November 2002. I regularly experience flares in my symptoms (some of which are easier to recognise the triggers for than others) and have had a few serious relapses over the years.   I struggle with my memory and concentration, i'm sensitive to alcohol, I experience cardiac issues and I never wake up feeling refreshed!
However I know I'm luckier than others more severely affected and as I've improved greatly over the years I keep positive that I will continue to do so. Anyway I've answered a few basic questions about ME and my experience. I hope you find it helpful.

What is ME? 

ME or myalgic encephalomyelitis is a disabling neurological condition. The symptoms include; 

Fatigue (persistent) 
Brain fog (problems with concentration , memory) 
Problems with mood and anxiety
Issues with the nervous system (dizziness, poor temperature control, palpitations) 
Sleep issues 
Visual disturbances 
Increased sensitivities (foods, medication, alcohol) 
Digestive problems 

This is only a snapshot of symptoms for more info look at action for me symptoms

What causes ME? 

No one knows yet however pathogens, viruses, immunisations and extreme stress (trauma) have been implicated as triggers. A stressful lifestyle appears to be a contributory factor or certainly perpetuates it. 

For me it hit very suddenly. I had been working shifts in a busy mental health ward and burning the candle at both ends, regularly going out drinking and clubbing with friends. It was after a night out that I woke up feeling like the life had been sucked right out of me. I had a flu type illness but it didn't go away... In hindsight I had noticed for a few months previous that I was a bit more `run down` and maybe this created the perfect environment for ME to develop. 

How is it treated? 

There are no medical treatments as yet. Certain medication can help mood issues, offer pain relief and help with sleep but no cure or treatment has yet been discovered to alleviate the symptoms of ME. Hence the reason the ME community are trying to raise awareness. 

What helps me? 

Pacing which is a way of using and storing energy to ensure that you keep your health at a stable level and minimise symptoms. This involves taking regular rests and not pushing your body by overexerting so you end up having a `crash`. 

Meditation is very helpful for me in terms of relaxation and reducing anxious feelings. 

A healthy diet. I don't drink coffee as I'm very sensitive to it and generally try to reduce my caffeine levels. I have reduced my sugar intake and try to eat as little processed foods as I can. 

Gentle exercise. Walking, gentle yoga and stretching help to keep my muscles and heart in shape (to some degree!) 

Keeping stress levels down. I work in a challenging job but luckily have a supportive team. I try to let things go that irritate me and cause stress but its not always easy! Mindfulness and meditation help somewhat with this. 

What hinders me? 

My hormones! Every month I feel a lot worse just before my period. I suffer extreme PMS. 

Alcohol. I still drink but I pay for it... I find three drinks is usually the maximum I can cope with and I get very drunk very quickly! 

Caffeine is a big no no. 

Too much exercise-  causes post exertional malaise. 

Sugar sends my blood sugars haywire and affects my energy levels. 


Extremes in temperature affect me but in do feel better in the sunshine. Shame I live in Scotland where we don't see the sun too often ;) 

So this is a brief overview of my experience of this hideous illness. I`m more accepting of it now and try to manage it as best as I can but I still wouldn`t wish it on my worst enemy! 

If you are on twitter check out #may12blogbomb for other blog posts on ME. 

Hope you are all having a happy and healthy day x 


  1. really nicely written! i wish you well <3 :)

  2. Thanks for this post; have tweeted it with our followers.

    Sometimes I feel M.E. is like a jigsaw puzzle which has to be reassembled every day ... and with a "puzzle box image" which has changed overnight, so that you never really know where you are with it :P

    Hope you have a better week this week x

  3. Thank you Maya. And thanks Jo that's a great description! Sometimes I think I've adjusted to it and have a good management plan then it all goes pear shaped again! Hope you are doing ok x

  4. Great post to raise awareness! I too suffer from ME and have been considering trying meditation for a while to help with relaxation so was pleased to read that it helps you. Your post almost made me think about my hormones affect me... I don't think I'd put two and two together until now but I definitely struggle more when its the time of the month!

    I only discovered your blog today but will be coming back to read more.


  5. Hi thank you for your comment. Hope you find meditation helpful. Will check out your blog. Thanks for leaving a link.
    Aly x