Every Wednesday evening I take part in an online event called ME Awareness Hour. The event takes place on Twitter and it’s goal is to raise awareness for ME/CFS by tweeting and retweeting posts about life with ME/CFS and any recent scientific publications or media coverage on the illness.
I love being a part of something like this because it gets people’s attention when we work together and make some virtual noise all at the same time. Continue reading
In the chronic illness community, I have found some of the strongest people you will ever come across. They are warriors who fight many battles daily, often against their own bodies or minds, just to get through each day. As much as there is hope and strength, there is also a lot of neglect and isolation. It is natural in these lonely and scary times to feel like giving up.
I often come across people who are losing all hope, but there is so much support and love available to us if we just reach out or know where to look. I hope this post will help you to find the support you need.
People often wonder what we mean when they hear us talking about spoons or that we are 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.Continue reading
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 pushing oneself to do more simply because you feel okay in the moment, is not really an option for people with ME (pwME). Our payback is often delayed for up to 48 hours which means that I might feel capable in the moment, and may even have no increase in symptoms for hours later, but then 2 days later I am completely incapable of doing the most basic things.
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.