Today on Florence Nightingale’s 188th birthday we celebrate the international CFIDS/ME Awareness Day, actually the whole month of May is dedicated to CFIDS/ME. The biggest event will be the 3rd international conference on the 23rd of May in London.
On this Awareness Day we should not forget those ones who aren’t lucky enough to have supportive families and friends and those ones who passed away miserably like Sophia Mizra. If you are going to read about Sophia’s story and medieval practice in the 20th century, you might need some time to re-adjust afterwards; her story is very touching.
The CDFIS Association of America Website with their campaign SPARKS is still the only one having started a media campaign and keeping a list of all interesting materials.
The Guardian commented on this month’s event by publishing an article about what life with CFIDS feels like, which I only became aware of thanks to reading posts on the Ravelry forums – knitting helps!
A very good site is run by CFIDS-affected Regina Clos , but you’ll need to know a bit of German. Since Germany is miles behind the USA and the UK, she took the time to translate lots of articles from English into German. It makes a huge difference to be able to read an article in your own language; also, many CFIDS/ME patients suffer from ‘brain fog’ which some times even makes reading in their native language difficult – never mind trying to read in a foreign language. Even the German Association for CFIDS referrs to her website as the one with the most up-do-date data base information. In order to keep her site alive she has finally agreed to put up a donation button. If you can spare a few Pounds/Dollars/Euros, give them to her so she can keep up this fantastic work.
Having CFIDS myself, I know how hard it is to keep yourself going despite the pain, the fatigue and all the countless other problems a chronic illness brings with itself, while not allowing yourself to wallow in self pity and slip into depression. To give you an example of how a constant lack of energy feels like, have a look at the spoon theory.
Having said all this, thinking about illness shouldn’t make us depressive for the rest of the day – on the contrary, it should make us celebrate life in all its diversity! We cannot put our life on hold until we are all ‘healthy’ (and what is all healthy anyway?) there is so much to discover and what seems like small steps to one is a giant leap for another. So, for today, let’s not go out and compete about who is the best but encourage our colleagues and friends to be who they are.