Today is the International Awareness for M.E. and other Chronic Immunological and Neurological Diseases. (This week 11th to 17th is M.E. Awareness Week and the whole of May is Invisible Illness Awareness Month!) People around the world will be raising awareness for this mis and little-understood illness.
But why is this being covered on a Church Tech blog you might ask?
Well, it’s very important to me as I’ve had M.E. for over 20 years (I’ll be 35 later this month and I got it when I was 11). I don’t talk about it much online. In fact, it’s only in the last couple of years I’ve really tweeted about having M.E. and this is the first post I’ve ever written about it.
But Just What Is M.E.?!
This is a good and brief guideline from the UK based Action for M.E. charity:
Myalgic Encephalomyelitis (M.E.) is a long-term (chronic) fluctuating illness that affects many parts of the body, more commonly the nervous and immune systems.
Symptoms vary from person to person but can include:
- physical and mental exhaustion (fatigue), which feels very different to ordinary tiredness
- post-exertional malaise: this means that any physical or mental activity can bring on an increase in symptoms, but not straight away
- intense muscle or join pain
- inability to speak or concentrate
- extreme flu-like symptoms
- sleep disturbance
- dizziness and/or nausea
- hyper-sensitivity to light and sound.
The condition also ranges dramatically in severity. I’m at the ‘mild to moderate’ end of things but I’ve got friends with severe M.E., who are completely bed bound (as I was for a few years at the beginning of my illness), have great difficulty speaking and pretty much any sensory stimulation is agony to them. There’s a good overview on the M.E. Association’s website.
Why M.E. Needs Greater Awareness & Understanding
M.E. is a ‘hidden’ illness, with very little media coverage or awareness (unlike its close namesake M.S. – although they are not connected conditions). M.E. sufferers are frankly normally too tired to fight for attention.
It’s thought that over 1 million Americans; 250,000 Brits (there’s four people in my Church with it alone!) and 100,000 Canadians and Australians have M.E.!
Another tragedy of M.E. is that although M.E. has been defined as a neurological condition by the World Health Organization, many (including much of the medical establishment) still think it’s ‘all in the mind’ and often patients are still treated as having a physiological/psychiatric condition rather than an actual ‘physical’ illness. This has caused HUGE damage to both individual sufferers (as psychiatric treatments only cause harm and not good) and to all sufferers as it’s stopped research into the real cause of the illness and possible treatments.
In Denmark, there’s currently the truly terrible case of Karina Hansen; a young women with M.E. who was forcibly taken from her home (completely against her will), and has basically been ‘detained’ in a danish hospital for over 450 days to undergo treatment that’s made her far worse! You can read more about Karina and her situation on http://justiceforkarina.webs.com (be warned, it’s pretty harrowing).
That’s why raising awareness about M.E. is so vital.
M.E. and Me (and Tech)
If you’re a regular visitor to ChurchMag, you’ll know that I’m on the blog’s writing team — a long time member of the ChurchMag Writers Guild. You might have also noticed that posts by me have been next to non-existent so far this year. Well, that’s because I’ve been going through a bad patch since the beginning of 2014. And frankly I’ve just been too ill to really think about blogging…
M.E. affects every aspect of my life. Things most people take for granted (like popping to the shops or out for a meal) are HUGE things for M.E. sufferers. I can’t actually remember what it’s like to be ‘normal’. I don’t have any recognised qualifications as it completely affectedly schooling, but thankfully in my teens, the Internet came along!
Without the Internet, I frankly don’t know what I’d do with my life. I run my own freelance web design business from home (I work when I can and have some very understanding clients) and for me, and many others with M.E., the net really is a ‘life line’ to the outside world. So far I’ve only got to Church twice in 2014; but the web keeps me connected with things both Godly and worldly!
I’ve got many M.E. ‘Twitter friends’ who I’ll probably never meet in real life, but it’s great to be able to know and have ‘company’ with people all over the world going through the same sort of things.
For some with severe M.E. being able to tap out tweets is their ONLY real form of communication with the outside world (and even doing that can be horrendously painful).
Blogs have also become a way that some with M.E. can share their experiences (check out the #May12th and #May12thBlogBomb hashtags). As I said, I’ve not blogged about M.E. before, but being part of the ChurchMag team is really important to me as a way of being ‘out there’ when I can’t be physically.
There’s other ways that tech makes life easier for me and those with M.E.
- A Kindle is a lot lighter than holding a heavy book if you’re tired and/or have weak muscles;
- Using a DVR means you can watch TV in small chunks when you’ve got a lousy attention span;
- Digital todo lists really help when your so tired that your memory’s really not good (in the past few months there have been several occasions when I’ve sat down at the computer to do something and spent the next few minutes staring at the screen trying to remember what I was actually going to do!);
- And on a personal note, I play the uke and am learning the mandolin – the web is is amazing for accessing teaching resources like videos and music! (I used to play the Bass but had to move to something lighter as playing it for only a few minutes really does my back in now…)
So hurrah for tech!
Some Other M.E. Awareness Day Resources
Here are some resources and links for and about M.E. and M.E. Awareness and what you can do to help.
Share this post and other things you might see about this day onTwitter and Facebook. The hashtag #may12th is being used for the day (bloggers will be using #May12BlogBomb as well).
Share some of these resources to help other find out about M.E.
http://www.may12th.org & https://www.facebook.com/may12th.awareness the main sites for M.E. Awareness Day to find out more about the day and see what others are doing on the day. (the 12th of May was chosen as it’s Florence Nightingale’s birthday and it’s thought she had M.E.)
Get a badge for your social media profile, blog, etc. from http://meaware.wordpress.com/badges/; add a twibbon http://twibbon.com/support/mecfs-awareness-week; take part in a thunderclap for the day https://www.thunderclap.it/projects/9782-m-e-awareness-day-2014
Have a look at (and possibly support…) the Canary in a Coalmine film – a documentary to raise awareness of M.E. It’s the idea of Jennifer Brea, an M.E. sufferer from the USA. Jess, from the ‘World of One Room’ film above, has been interviewed for the film. You can read the stories of some others involved in the film on the site.
But most of all be understanding! Most people with M.E. are happy to answer (sensible) questions about the condition – as I will in the comments 🙂
[Image from Blogging for M.E. Awareness | This is a #May12BlogBomb post]