And the day comes around again.... May 12 is the International Day of Awareness for Invisible Illnesses such as Myalgic Encephalitis/Chronic Fatigue Syndrome(ME/CFS) and Fibromyalgia (FM). Its a day when we hope the Normals - those without these sometimes debilitating illnesses - take notice of ME and FM and become more accepting and aware of them. Over the years I have been part of many campaigns for awareness, been to parties,, fundraisers, created and distributed posters, ribbons etc. This year I am just too damn tired.. So, instead, I am blogging everywhere, and hoping someone who would not otherwise know about these illnesses might stumble upon my post and take something away with them.. Will you?
I'm going to give you some basic info on the conditions - I warn you that I have brain fog at the moment, so it is a bit scrambled... but I don’t have time to find a decent blurb on both of these conditions... If you are interested, or know someone with ME/CFS or FM, I suggest you contact your local support group or ME/CFS and/or FM association. FM and ME/CFS are both debilitating illnesses which affect those with them in a number of varied ways. There are a LOT of associated symptoms, but the main ones tend to revolve around pain, fatigue, and cognitive dysfunction (memory, brain fog etc). Commonly those with ME/CFS have more serious symptoms revolving around fatigue and sleep dysfunction, and those with FM tend to have more serious symptoms that revolve around muscular pain. Just saying ME/CFS is more fatigue than pain and FM is visa versa is too broad a generalisation. It is impossible for me to write a detailed list of symptoms for each condition - there are so many, and not every sufferer has every symptom, or the same severity of each symptom. Even me, my brother and my mother are all different. I have a double whammy - my pain and fatigue symptoms are always fighting to see who is more prominent - these days the fatigue is winning, but that is because I work full time and cant give in and sleep for a few months..
How you get itThere are three main triggers for ME/CFS and FM. Traumatic (accidents, personal upheaval like a divorce or bereavement etc) environmental (chemical exposure (factories, hair dresser chemicals etc)), or viruses (Glandular Fever, Ross River Fever, Dengue Fever etc). Some people have a triggering event and they gradually decent into ill health. Others, like me, were catapulted. I know so many people around the world with these conditions (I have both) who have told me their personal stories of ME/CFS and FM. I know people, like me who had accidents, others who had traumatic divorces, exposed to chemicals by living near factories, or long term exposure to hair dressing chemicals etc, others who had Glandular Fever, Ross River etc. Its never fun. Basically, there is a major stress on your body which triggers the illness. There are so many theories about why some people get it, and not others. I personally think there are a number.
Issues with labellingThe names Myalgic Encephalitis and Chronic Fatigue Syndrome can be interchangeable, and are used in different countries. If you are talking to someone from the UK they will mostly use ME, in Australia CFS is most predominant. I’ve started using Myalgic Encephalitis because it doesn’t have so many connotations in the public mindset. Because a lot of connotations are wrapped up in the myths of ME/CFS. When it started having more diagnoses (it takes a while for doctors to be comfortable with diagnosing conditions), it picked up the name of Yuppie Flu - simply because when you work too hard - do a 40-50 hour week like I do, you are pushing your body to the outer limits of its capabilities. Add a debilitating illness, and you can end up crashing... system meltdown, system malfunction... it hits you like sledge hammer and it takes a while to recover. The only thing you can do is drop everything and try and recover.. Listen to your body and take it easy. The thing is, ME isn’t like cancer or a broken leg. It isn;t outwardly visible. You don’t have a cast on your leg, or start loosing hair from chemo. Instead, you curl up in bed, or on a chair somewhere, and try to breathe through the pain, or keep your brain working through the fatigue. It isn’t the easiest thing to do, regardless of what you may think.. Sometimes the hardest thing to do is just turn on the bedside light. Just lifting your arm off the pillow is so exhausting... It feels like lead, heavy and lethargic. The problem with being sick with these illnesses is that when you are sick it unfortunately, to the unaware Normal, looks like we are being lazy. However, talk to anyone with these conditions and they would rather have energy and be fully able of body - to be able to get up, go outside and do stuff! sometimes just being able to do the housework sounds like it could be the highlight of the week/month. If you haven’t had a chronic illness, or been extremely sick for more than a week, you may know what I mean... it is so frustrating when your body wont behave - when it wont function properly, regardless of what you do. The name Fibromyalgia is a recent one - it was coined in 1976, as the previous diagnosis of symptoms, Fibrositis did not explain the symptoms properly [fibra" (fiber) "myo" (muscle) "algos" (pain)]. Some old school doctors still diagnose patients with "fibrositis" and I know some older relatives and associates who still refer to it as such.
Why May 12? May 12 is the birthday of Florence Nightingale, who had an "undiagnosed, debilitating disease for many decades". It is suspected by some that she had one of these conditions, but whatever she had, she is a perfect icon for sufferers of the invisible illnesses.. She was undiagnosed, and despite her health, battled on to help others in need and in pain. She later went on to found the Red Cross. The ME/CFS ribbon is blue and the FM ribbon is purple. You will often find that butterflies are associated with the illnesses, campaigns and supportgroups. For example, my friend ~
VelvetMist has a forum called Blue Butterflies
[link] and my state ME/CFS association's logo is of blue butterflies flying free
[link]
What you can doEducate yourself. The biggest problem with ME/CFS and FM is we suffer in silence. There isn’t a major awareness campaign out there like their is for breast cancer, or even for arthritis. We are out on the margins, hidden in the shadows. This means there isn’t funding for research, which keeps us more in the shadows. So do some reading, talk to some sufferers (I hate that word - let me know if you have a better one!).
If you know someone with ME/CFS or FM the best thing you can do is be there for them. Don’t push them around and try and force them to act normal. We aren’t a Normal like you are - we have to listen to our body and rest when we need to. Just getting out of bed and running a marathon will not cure all our ills. Being "positive" (as some people have lectured me) = preten’ing I’m not sick - it causes more problems than it cures. You can be positive and sick, but pretending you aren’t sick wont make it all go away. Our nearest and dearest not believing us, not trying to understand what we live with each minute of each day - that hurts. It makes it harder when you have no support network. It is bad enough that society doesn’t always accept us, but when our loved ones don’t, its utter hell! When they think you are crazy, pretending or exaggerating, it causes such anguish. I've been there, I can tell you that from personal experience. So if you know someone with ME/CFS or FM, just be there for them. Don’t cut them off because they "aren’t fun anymore" - if they are really your friend you don’t like them just because they are good fun at parties.. Understand that why will not be able to go out clubbing every night, or go out for dinner and drinks daily, or shopping - or go hiking or what ever - as frequently as they used to. Don’t get pissy at them when they say they aren’t up to it! If that person has said they aren’t up to it, believe me, they aren’t! Do you know how boring it is laying in bed and staring at the roof is? I'd rather be out socialising! Instead of ostracising someone because they are sick, talk to them and ask them what they would like to do.. Maybe instead of going out for a night on the town you can have a DVD night at home. Maybe, instead of going hiking, you can have a picnic in a park... its all about working around the illness. And listening to your friend/loved one. they know their body intimately - we have to - and we know when we can get up and do things, and we know when we should stay in bed and conserve our energy. talk to your friend about their conditions and learn more about them, or do some research - there are quite a number of good books and web resources out there!
On May 12, wear a blue or purple ribbon in support...
If you have time, check out Creative For a Second - its a book of art by people with CFS. It includes art by some of my online friends, my best friend ~
VelvetMist and was compiled by one of my online friends ~
kirrily. I was going to submit some of my art, but was sick at the time of the deadline... The book is AWESOME! The art tour launch is this Tuesday, 12 May in Bondi Junction - guest speaker is Leigh Hatcher, author of the book "I'm not crazy, I'm just a little unwell".
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