Friday, December 04, 2009

ME Blogs

Blogging is a great outlet for people with ME, giving those with a gift for writing the chance to express their feelings and explain the illness to friends. Younger people make up most of the bloggers and there are a small number that I follow regularly. Whenever I'm feeling low, frustrated and resentful about having this illness I do my best to feel grateful that I have it now, at over 50, and am much better situated to cope with it. I feel tremendous sympathy for young people with ME. This is a particularly devastating illness for the young - and children as young as 3 have been known to get it.

One of the blogs I follow is called "Dashed Hopes and Measured Steps" written by a young man living in California. I'm quoting from him now, because I found a recent post of his particularly moving and also informative. His blog address is here:

This is what he writes:

Every lesson I've ever learned from this illness has boiled down to what it means to be human, but I've always looked at this illness as part of the journey to who I want to be. I want to be successful and I'm starting to realize I may never be able to accept my place in society as it stands now. In fact, every year gets harder to accept, because I lack the ability to be fully in the present. I need to tell myself several times an hour to stop juxtaposing the past with present because they become more heartbreakingly unfamiliar with each other every year.

Our illness is so debilitating yet there's no single way of describing it to entrench the severity within anyone's mind. My own mother had no idea how debilitating this was until last year, when she traveled with me to Germany and saw how I limited my walking to 20 minutes a day. If I don't sleep 9 hours, I feel like death tomorrow. If the room I sleep in isn't virtually mold and chemical free, I can't sleep. If I feel abnormally great today, I guarantee I will feel equally sick tomorrow--in math, we called this "inversely proportionate." If you Rufie me and stuff a pastry down my throat, I feel like death. If you don't let me sit down after 10 minutes, my heart feels like it's trying to stab itself. Any stressful situation send my sympathetic nervous system into overdrive and takes hours to calm back down. Are these actual symptoms of this disease not bad enough on their own? Why the duplicitous outward appearance of health to cause suspicion and misunderstanding from others that care about us?

Hey Big Guy, what were you smoking when you drew up our illness? "Say Angels, wouldn't it be a great social experiment to compare the psychological damage from, say, HIV and cancer to that of feeling just as ill but having no one understand WTF they're talking about?" "By Jeezes, yes it would!!"

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