Be Social

I’m slightly addicted to Facebook and twitter where I regularly share news from the community and our life.  Instagram is where I post the top picks in My Stripy Life or follow me on Pinterest where I catalogue my favourite memes, quotes and pictures from the chronic illness community to inspire our followers.

Thank you so very much for your page. 🙏🏽
I was diagnosed 10 years ago, while in my late teens. My younger sister was diagnosed a few years later.
And yet, your social media page that I happened on TODAY, is the most information and real, valuable help I’ve gotten from anyone in understanding Ehlers-Danlos. Thank you so so much. 😭🤯❤️🥰

View this post on Instagram

I am joining in with the @meactnet instagram challenge and sharing my experiences of parenting a teen with ME/CFS “ l am leading a double life. Each morning I get up, my make up goes on and I leave the house to do the school run. I make small talk in the playground with friends. Go to coffee once a week with a group of mums. I smile, I am interested in their lives. It’s important to me that I’m a good mum, friend, sister, daughter. My house is usually clean and tidy, dinner cooked, (all fresh and gluten free), the bills are paid, we have a decent car. From the outside it all looks good. What people don’t always know is I have a secret. My funny, bright, handsome teen is sick. This year he was diagnosed with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) in addition to hypermobile Ehlers-Danlos syndrome (hEDS) and most likely postural orthostatic tachycardia syndrome (POTS). It’s a year since this condition really stole his world, and flipped mine upside down.” I wrote this a year into Alfie’e diagnosis with #mecfs. Two years on and we are learning to ride the waves of this storm. He is still educated from home, he is still sick, he is still missing. Cut and paste the link- or click on the link in the bio and search for my secret to read more. #MillionsMissing #millionsmissingspeakout #canyouseeMEnow #chronicillness #pwme #mecfs #myalgicencephalomyelitis #myalgicE #Parenting #invisibleillness #chroniclife

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