May 12th – technically today – is ME/CFS and Fibromyalgia Awareness Day.
I wish I had time to go into how important this is and how many people are impacted by these medical conditions, but I only have a few minutes to write now. Hopefully I’ll be able to drop back in later and give you better information, but I was on my way to bed and wanted to take just a moment to put this out there while there’s still time for someone to read it and show their support. 🙂
May 12th was chosen as the awareness day for many neuroimmune diseases – including Lyme Disease, Gulf War Illness, and MCS or Multiple Chemical Sensitivity. The date was chosen because it is Florence Nightingale‘s birth date and Nightingale was believed to be the first person with a recorded case of chronic fatigue syndrome.
There are many different views of how to label Myalgic Encephalomyelitis, also referred to in some countries as Chronic Fatigue Syndrome or Chronic Fatigue Immune Dysfunction Syndrome. Regardless of how it’s labelled or what it’s called, it’s a complex condition that involves serious central nervous system abnormalities and irregularities of the cardiovascular and immune systems. I’ve heard it referred to as a neuroimmune disease, an immune dysfunction syndrome and a crock of phoo-ee. In the end, what I can quickly share with you is that it robs a person of their health and vitality. It can turn the healthiest athlete into a bed-ridden hermit. The cognitive impairment and physical exhaustion that occur are so profound that at times someone with this condition may feel like there is no hope of ever leading a ‘normal’ life again.
Many people with ME/CFS also suffer from fibromyalgia – they often go hand in hand. Fibromyalgia is a disorder that causes widespread musculoskeletal pain along with cognitive issues, fatigue, sleep disruption and memory problems. The list of symptoms for fibro is lengthy (although not as lengthy as an 18 page symptom list I’ve read for ME/CFS) and varies from person to person, but can include IBS (irritable bowel syndrome), migraine headaches, neuralgia (severe nerve pain) and odd things such as allodynia – hyper-sensitive skin. The most recent one I’ve been dealing with is neuralgia and it can be pretty horrific.
I wish I had more time to add some good links of information and go into the struggle of trying to live with these conditions in this post… however, my point of writing this was to ask you to please show your support. Many may not know that you’re supporting anything and you may not even have the opportunity to explain to anyone, but someone out there will probably notice and be grateful… As with most “Awareness” days May 12th has a color scheme. 🙂 Wearing something blue shows support for ME/CFS and wearing something purple shows support for fibro. I really needed a blue and purple striped shirt since I have both, but I’ll probably go with blue since the ME/CFS has taken more of a toll on me.
I would personally like to thank you for just taking the time to read this. It’s hard enough to live like this and even more difficult when I’m misunderstood because of it. Speaking out is the only way to educate people and dispel the misconceptions. I choose not to be silent. I hope you will too.
- Please – International Awareness day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivities (MCS) and Fibromyalgia (FM) (fibromodem.wordpress.com)
- Fibromyalgia Awareness Day IS May 12th (fullcircledme.wordpress.com)
- Happy FibroMAGIC Awareness Day (fibromodem.wordpress.com)