May is ME Awareness Month and once again I am participating in the virtual campaigns online to help raise awareness of this life-destroying illness called Myalgic Encephalomyelitis. Today I'm sharing my story. How did I become so terribly ill and housebound? How did it happen? When? And how long did I have to wait for a diagnosis? Here's my ME story:
May is #MEAwarenessMonth and I thought, since many of us cannot go to the live #MillionsMissing events in person, I'd like to help my fellow people with ME (pwME) to raise awareness online by offering you personalised Millions Missing posters!
I know you are an incredibly creative and driven group of people, but I also know that many are too ill to use their skills and talents as they would like to and cognitive dysfunction as well as physical incapacity often makes using a device or learning new things very difficult. So I hope this free community service will be helpful to you.
Ironically my life was super busy and active during the weeks and months before the onset of what lead to my Chronic Fatigue Syndrome diagnosis. There seems to be the general belief that we are tired or lazy or that we have some sort of unhealthy aversion or fear of exercise, but nothing could be further from the truth!
As we move towards ME Awareness Month (May), I wanted to share some of my health and fitness memories from the week before I fell ill. I hope that this will help to dispell the idea that we are lazy and afraid of exercise and help people understand that the opposite is actually true. Now I know that healthy eating and exercise simply doesn't cure everything.
I'd like to speak about my own mental health. I feel like some people misunderstand my condition, so I wanted to address the matter directly. Yes, I have a severely debilitating illness. Yes, I practically live in bed. No, I cannot go out and I cannot have visitors coming over without paying for it, but I am okay. Seriously.
Have you ever experienced that moment of intense pain in your eyes and head when you've opened the curtains on a bright and sunny day? Anybody who has experienced a migraine or even a hangover would likely understand what I'm talking about too. Although photophobia or light sensitivity might seem quite common among the general population, it can be quite debilitating when combined with a chronic illness like ME.
Most people struggle with glare and direct sunlight in their eyes, but what you might not realise is that some people with chronic illness actually cannot tolerate any light at all and might have to spend hours, days, weeks or even months in the dark - and it's not just pain in the eyes that they're avoiding!