12 May 2014

Tethered Butterflies

As today, May 12th, is International Myalgic Encephalomyelitis (ME) Awareness Day, I thought it would be a fitting day to start this new blog. I've put some information at the bottom of this post about the awareness day, what ME is, and links to respected sites for further information - please do have a look at them.

So, why 'Tethered Butterflies'? Well it all started from this image:

(Incidentally, I haven't been able to find who 
created/owns this image - if you know, please tell me 
so I can seek proper permission to use it!)

I don't know who originally created this image, or what their purpose was - but I feel it's a really good illustration of what life can be like for people with ME - or indeed for anyone with a chronic illness. The negative aspect of the image is obvious: being weighed down, held back, prevented from 'flying'. Those of us with ME often quite literally feel like we are weighed down, as if we have rocks tied to us and/or have our own extra-strength gravity field, making it so hard to move muscles, limbs, etc.

However, I think there is a lot of positive in this image, too - and it's this positive aspect that I want to concentrate on. Look how beautiful and vibrant the butterfly is. Notice that the rope tethering the butterfly to the rock is taut, not slack - the butterfly hasn't given up fighting, it's still striving for life.

Those of us with ME and other severe chronic illnesses may be sidelined from life, we may be housebound, we may not be able to work or offer what most people think of as a valid contribution to society - but we still have value. There is still beauty and worth and purpose in our lives. As the Stonebird website says:

"The Stonebird represents the idea that you don't have to do anything to be of beauty and value in the world. Even if you cannot move, even if you cannot communicate, even if you cannot think, still you are precious and your presence matters."

So to all those out there who are severely affected by illness, please know:
  1. You are not alone, you are not the only one. There are huge communities of people online; reach out to them. There are people out there who understand what you're going through.
  2. However many things you can't do, and however many friends you've lost due to your illness, you are still important and precious and valuable, because you are YOU. 
  3. Don't give up. Hang in there. Keep going. I KNOW it's not easy, but don't stop fighting.

And to anyone who knows someone severely affected by illness, please don't forget:
  1. They are still a person, they still have value, they still have gifts and talents.
  2. They may have to 'do' friendship in a different, more limited way than before - but that doesn't mean they're not worth the effort. But please do respect their boundaries and limitations!
  3. Just because they may have had to withdraw from life as they previously knew it, doesn't mean they've 'given in' to the illness or given up on life; it just means they have no choice but to take care of their health. By taking proper care of themselves, they ARE fighting, and they are strong. They may seem weak to you, but it takes more strength than you can imagine, just for them to keep going each day.
  4. They need your encouragement and support to help them to keep fighting. And you taking time to find out more about their condition, and what you should/shouldn't do, will be a great help to them.
  5. If you are one of the special people who has stuck by your ill friend/family member and tried to support them, THANK YOU (times a million). So many people refuse to even try to understand, and/or just disappear from the lives of ill people. Never underestimate the difference you are making or how valued you are. But caring for/supporting someone who is ill is very, very hard, so look after yourself too; you are no use to the person who is ill (or anyone else for that matter!) if you get overburdened and burnt out.

So don't forget: we may be tethered, but we're still butterflies, and our lives still have beauty and purpose and meaning.

May 12th - International Myalgic Encephalomyelitis Awareness Day

Here's a poster which explains why this day was chosen for the ME awareness day:

(from www.facebook.com/MEAwarenessPics)

In due course I'll be putting lots more information on this blog about what ME is (and isn't), how it affects me personally, etc; in the meantime, below are a couple of images which give a brief summary of what ME is. Please read them even if you think you already know about ME, as it is a widely misunderstood disease:

If you want to know more, I would highly recommend these sites:

Thank you for reading my first blog post! There's more coming very soon; I hope you'll come back again :-)


I'd love to hear what you think! Do leave a comment if you have anything you'd like to say about this topic. If you have any difficulty with this process, please see the Site Help page. Please bear with me if it takes a while for me to respond; I really appreciate you taking the time to read and comment on my blog, but I'm not always well enough to reply. Thank you :-)


Sally Burch said...

Great first post for your blog...

Thank you so much for helping raise awareness by participating in the #May12BlogBomb.
Over 90 posts resulted, and links to the others can be found here: http://sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html

Perhaps we'll try this all again next year!

Rachel said...

Thanks so much Sally, for this comment but also for your support and encouragement before I posted; I'd wanted to start this blog for a while (and I'm already so glad I did), but without you I may never have actually done it. So a huge thank you, and a massive well done for all your work in the blog bomb - what an incredible result! xx

Unknown said...

Hi Rachel, I loved your post and have also shared it as part of my ME Awareness Month guest posts!

Rachel said...

Thank you so much Kealie! What a wonderful encouragement :-)