It’s exactly a year since my ME relapse began and to be honest, even I had forgotten just how crushing, disabling and life changing this illness can be.
It took me years to go public about my illness. ME is a chronic invisible illness that is still misunderstood, belittled and in many circles still seen as a psychological illness affecting those of weak character. These misconceptions make it difficult for sufferers to speak out, to get funding for research and consequently makes it difficult for GP’s to give sound advice on treatment options. Many people have suffered not only from the illness, but from bad medical advice and public attitudes. I felt it was time that these misconceptions were challenged and the reality demonstrated. I therefore want to raise awareness as well as raise funds!
This is probably one of the easiest sounding challenges you will come across, but for anyone that loves life, I guarantee it will be much harder in practice! What I’m asking you to do is – nothing!
When the clocks go back in October we gain an hour. Action for M.E are asking people to ‘Make time for ME’ I’m just asking you to donate that hour to do nothing! It’s as simple as that! Sounds easy doesn’t it?
This isn’t a lie in! You must get up, start your day and then go back to bed to do nothing. Before you think this really will be a walk in the park ( inappropriate analogy!) I must stress that nothing must mean nothing. This will mean:
- No radio
- No music
- No TV
- No reading
- No writing
- No social media
You have two choices whilst you rest: you can rest with your eyes open or shut! (but no sleeping!)
Maybe by now, this is starting to sound more like a waste of time?! However, there are two important reasons why it really must be nothing;
1. for people with severe/moderate ME this is their daily reality. They are completely bed bound and often unable to tolerate any other stimulation. (hence resting with your eyes shut)
2.Secondly, people with Mild/moderate ME have to manage their symptoms by ‘pacing’. This is an incredibly hard and frustrating part of the illness. It involves balancing all physical, cognitive and social output with complete rest. Failing to rest and eliminate stimulation will only exacerbate symptoms or make them worse (boom and bust) Some sufferers do recover from ME and pacing is a crucial part of the healing process. For the fortunate ones it’s a process that takes months or even years. ( hence resting with your eyes open)
In our society, we often pride ourselves on our busyness. People compete with who has the busiest schedule, worked the latest, missed most lunches etc and being still can be a challenge.
I am now well practised at pacing but it doesn’t get any easier. I am one of the fortunate ones, my health has been generally improving over the last year but the better I get the more I want to do. Pacing becomes harder, the better I become. I have a whole year’s worth of stuff I want to catch up on, yet I need to suppress my desire to constantly ‘do’ more. I’ve learnt too many times that less really is more!
An hour isn’t much, but hopefully will give you some insight into how much harder the reality of resting is when you want to ‘do’. As you lay on your bed, thoughts of what needs to be done today, tomorrow, next week will flood in; ideas will need to be written down; lists of people to contact will come to mind; planning a social activity; your motivation ‘to do’ will probably be high but will all need to be suppressed.
The busier you are the harder this challenge will be. However, ME often hits energetic, busy, and driven people. The illness may strip the person of this but the desire to still be that person remains. This is just one of the many physical, neurological, cognitive, social and emotional challenges that ME sufferers have to face daily.
Why not share how you got on? Post a photo of yourself with the hash tag #nothing4ME followed by the number of minutes you managed? It will be interesting to see the results!
Whether you take the challenge, donate or simply share this with others, lets show people that even doing nothing for ME can make a huge difference!
Donate to Action for ME : http://www.justgiving.com/Sarah-Reed17
To find out more about ME: http://www.actionforme.org.uk/get-informed/about-me/what-is-me