Sisters Are Doing It

The first thing I’d like to share today is a post that my sister, Diane, put up last night. As many of you know, Diane was diagnosed with CFS/ME last year and due to the 12 year age gap between us, started getting symptoms at roughly the same age I was when I started getting symptoms.

So far, Di remains in the ‘mild’ category and is still able to work but her life is far from easy… so this is just a gentle reminder that the people in wheelchairs and bed bound that you see on the news that are easy to empathise with are not actually the main face of this disease. It’s people like Diane, who struggle to hold on to some level of productivity, who many people never see suffering. She wrote…

“We are now at the end of CFS/ME awareness week but I haven’t made anyone aware at all. Having Chronic Fatigue Syndrome / Myalgic Encephalomyelitis means that you’re exhausted. So tired you can’t sleep. Lack of sleep makes you forgetful but trying to remember things gives you a head ache. Head ache makes you feel dizzy. So dizzy you feel sick. Feel so sick you can’t get your words out. Trying to speak and not being understood makes you anxious. The anxiety causes insane dreams. The dreams make you depressed. The depression keeps you curled up in a ball, but being curled up hurts your joints. But to you I look fine, just tired, so maybe I should get an early night? Except I can’t sleep. There is no cure for this invisible, debilitating illness. Only self-management and understanding from those around us 💙

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