In 2017 I created the "Effects of ME" campaign for ME Awareness month in May. Quotes were collected from patients about how ME affects their daily life and I then used those quotes anonymously to create impactful graphics which the community could share during the online awareness campaigns.
The campaign continues to run to this day, with new quotes trickling in all the time. The graphics have been very well received in the M.E. community and continue to be shared widely. People relate to the quotes and it makes expressing their experience so much easier. I hope you will find this collection useful for your own advocacy efforts too.
People often wonder what we mean when they hear us talking about spoons or that we are a spoonie or unchargeable. These are words I never used before joining the world of the chronically ill and disabled. In this post I will try to explain the meaning behind these terms and which one I identify with most.
Anybody who has ME or CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) will be very familiar with the boom and bust cycle. ME's main characteristic is Post-Exertional Neuroimmune Exhaustion (PENE) also commonly referred to as Post Exertional Malaise (PEM). Feeling really ill, weak and exhausted after any physical, emotional or mental exertion.
This means brushing my teeth, getting excited about a visitor coming, answering the phone or writing this post is exhausting and will cause an increase in a variety of symptoms. The problem is that when I feel better on a particular day, I tend to want to do more because I feel able and would like to participate more in life, but this can be detrimental.
December 3 is International Day of People with Disabilities. It's a great opportunity to raise awareness and make some noise all over the internet (and in real life) if you can manage it. The message I want to get across this year, is that not every disability is visible.
There are many conditions that do not display any outward signs of illness or disability, but they are just as debiitating as any condition you can clearly identify.
Today marks the end of six months since I got the viral infection that changed my life. That gloriously sunny day in Italy on the first of April 2015. It all happened so quickly and unexpectedly, I was out cycling in the countryside one minute and in bed the next. My body reached a point of weakness and exhaustion that I'd never known before and nothing has been the same since.