Waxing lyrical: ME Awareness

I don’t expect it is possible to adequately describe the experience of ME to someone who hasn’t experienced chronic illness disability.

I do expect everyone has had the experience of finding song lyrics meaningful to their circumstances, despite this not being the original purpose of the lyrics. My thinking is that a ME Awareness Day playlist with some explanation could be a new angle to help you understand my experience.

So these are songs which make me think of ME

The playlist is here on Spotify

And here on YouTube

lyrics generally screenshot from lyrics.com

Blue, as well as being associated with feeling low, is also the colour of ME Awareness. If you see public buildings lit in blue this week that is why.

This song is so apt it could have been written about Severe ME. The sense of being trapped in your bedroom all day. Unable to tolerate sound or vision and wondering why this is. Trying to be patient and rest.

To me this captures the pain of the myalgia in Myalgic Encephalomyelitis during a crash. It just keeps holding on. Despite our difficulties fighting it, the world denies it even exists.

Which follows into the desire for effective medication. There’s generally a reluctance to prescribe us medication in the UK despite ME coming out poorly compared to the severity of other long term conditions. I’m not specifically keen on getting opioids but there’s a current agenda in medicine to get people off opioid pain relief.

A key feature of ME is unrefreshing sleep. We often also have problems maintaining body clock. We encounter judgemental attitudes from people assuming they understand ‘sleep hygiene’ better than us. Children in particular get the rough end of this. When my sister had Severe ME as a child she was told not to sleep before bedtime or after 9am. She would be so exhausted she’d fall asleep into her food.

Sometimes we just need to sleep. Please let us sleep!

This song makes me think of the journey for health answers. Most of us have tried lots of doctors and various flavours of alternative medicine. Some people think they have definite answers, but at this point in time although there are plenty of clues in biomedical research, there is no definitive answer.

This song speaks to me of a sense of un/rest. In my dreams I am often walking, though in waking life I need an electric wheelchair to leave the house. A relapse can bring the familiar need for darkness and silence like a visit from an unwelcome friend.

There’s also a sense of frustration that past efforts to communicate with the outside world haven’t been effective (a different type of silence). The words of ME ‘prophets’ haven’t been seen in the expected places. The song also reminds me of #MillionsMissing and the sense of lots of people communicating online despite not physically speaking to the outside world. I get a sense that all those people could easily be heard, so there’s also a sense of potential in the frustration.

I’ve quoted this song before on this blog site. It is actually written about ME, so this isn’t my idiosyncratic interpretation. Being on the edge of nobody’s empire is evocative of the neglect of ME. We fall between academic and medical disciplines. It often feels like only the psychiatrists want us and we don’t really want them! Not out of any anti-psychiatric prejudice but because of all the disciplines we could fit in, this seems least relevant (neurology, immunology, endocrinology could be suitable). The psychosocial, CBT Model of ME often requires us to push through symptoms and leave the illness behind, as if this is a matter of choice.

I like the sense that his ME friend is now a radical type campaigning. This possibly in real life wasn’t specific to ME health equality but in my mind I apply it to that. As very sick patients we have had to do our own campaigning.

Living with ME teaches you to be sceptical about truth claims. Adverts are misleading (The Lightning Process has been had up by advertising standards). The largest research trial had numerous methodological flaws. It’s hard not to become cynical and jaded.

BUT I think the current generation of people with ME is under a sense of destiny to get this thing solved. With social media we are all celebrities now, with our own version of a fan base. If we don’t make a noise there’s nobody there in the background waiting to do it for us! Our bodies may be freaks, but we’re still all unique, with contacts, skills or knowledge that no one else has.

What can you do for ME advocacy or research (within your energy envelope) that no one else would be able to do?

Before you go and do your unique thing, there are some standard actions you could also take:

Attend a #MillionsMissing visibility event. They are happening all over the world, mainly on 12th May.
Donate to ME Action
or Donate to the Open Medicine Foundation
or Donate to ME Research UK
Sign the Scottish petition (you can sign from any country, even England;) )
Watch Unrest film with friends
Share this and ask other people to do these things instead!

If you want to understand more about living with ME in the UK I think this article in the Independent by Nathalie Wright is the best recent article.

The playlist from this post is here on Spotify

And here on YouTube

Perhaps you’d like to read more from this site?

I recently wrote a summary of the last four years of posts so that’s a good starting point

In 2016 I wrote a mammoth Awareness post 10 Insights on life looking out at the world through the lens of ME, so I’d appreciate more people reading and sharing that to get better value out of it

I wrote a Princess and ME fairy story

Last year I wrote about Florence Nightingale who is considered to have had ME

If you want something deeper, try the Unknowing Knowing Epistemological Crisis Post