Dancing with the Sandman

Writer, poet, and political blogger. Has severe #ME, #EDS, #POTS, & #MCAS | Working on a Creative Writing PhD in Children’s Gothic #disabledwriters #ownvoices

[Dancing with the Sandman @sleep_dancing]

#mecfs for me = autonomic failure, POTS, hypovolemia, severe low bp (80/40), MCAS, heart block, IST, mitral valve regurgitation, poor temp regulation (chills/overheating), breathlessness, chest pain, malaise, diarrhoea, dysarthria, dysphagia, SFPN - just for starters! #longcovid

[David Matthews @David_M_Writing]

Planning to approach BBC Panorama to do an investigation into the appalling NHS care for #EDS #MCAS #POTS sufferers in the UK after my daughter was seriously harmed by a well known London hospital. If you have had a bad experience in the UK, please get in touch and please share.

[James Noake @DrJN_SportsMed]

The most ridiculous thing i’ve ever heard.

[Tom Kindlon @TomKindlon]

I'm one of millions missing from our lives due to Myalgic Encephalomyelitis, each with their own challenges and losses.

Unlike Covid lockdowns, the lockdowns we have dealt with for years due to #ME continue

#MEcfs #CFS #MyalgicE #PwME #May12 #May12th #ChronicFatigueSyndrome

[Cherylee Houston @cheryleehouston]

@sleep_dancing It’s Tomorrow!! 1.30-3pm The Disabled Artists Networking Community have teamed up with BBC Childrens for a session on pitching for comedy and drama followed by Q&A session with in-house Productions https://t.co/QlyCgZFP9I #BSL Pls share

[Sabeeha Malek, PhD @SabeehaMalek]

Excited to share my first publication! The Beighton Score as a measure of Generalised Joint Hypermobility. With HUGE thanks to my co-authors @DrEReinhold and @GemmaSPearce! Thanks also to @hEDStogether and @ActinDomain for support: https://t.co/XbPP90FBfQ

[Dancing with the Sandman @sleep_dancing]

@KenSmithNC I guess it’s par for the course. 😢I hope you are feeling okay, Ken.

[Dancing with the Sandman @sleep_dancing]

#mecfs for me = autonomic failure, POTS, hypovolemia, severe low bp (80/40), MCAS, heart block, IST, mitral valve regurgitation, poor temp regulation (chills/overheating), breathlessness, chest pain, malaise, diarrhoea, dysarthria, dysphagia, SFPN - just for starters! #longcovid

[Dancing with the Sandman @sleep_dancing]

The sort of fatigue I get, is a falling away of consciousness. You can hear sounds around you, maybe a clink of glass, a closing door, or bird song; but you can’t open your eyes or move, even when your mouth is crying out for a drink of water. #mecfs

[Dancing with the Sandman @sleep_dancing]

Other symptoms include double/blurred vision, migraines, early cataracts, severe muscle weakness, neuropathy, severe dysautonomia, myoclonus, ataxia, ptosis, exhaustion (so bad you can’t turn in bed) ... I could go on, but the point is fatigue is NOT the worst symptom. #mecfs

[Andrea Pring ♿ @Andrea_Pring]

What makes the seasons turn? Who paints the colors of beginnings and endings? This lyrical story, rooted in nature, art, and the enduring relationship between child and grandparent, touches on the difficult subject of death in an evocative and gently reassuring way. #PitMad #PB

[Dancing with the Sandman @sleep_dancing]

Hello, just wanted to tell u I love u & that ur not broken. If u feel fragile, I’m here for u. I know how that feels. I also know that it’s rarely permanent. Some days I feel I can fly to the moon. Those are the days I choose to remember. #sicknotbroken #MentalHealthMatters

[Dancing with the Sandman @sleep_dancing]

@KenSmithNC Must be fun watching them nest.

[Dancing with the Sandman @sleep_dancing]

What lovely thing have you done today? For yourself or for someone else. #mecfs #chronicillness #eds #POTS #Dysautonomia #myastheniagravis

[Virtual Writers @virtualwriters]

Poem-a-Day Challenge continues with @virtualwriters. Your goal is to write one poem a day throughout Feb. Prompt for Feb 28th: Zany. Poetry Form: Renga #PADChallenge #amwriting #Poetrycommunity #virtualwriters #WritingCommunity #poets #poetsinpajamas #poetry #renga

[Virtual Writers @virtualwriters]

Poem-a-Day Challenge continues with @virtualwriters. Your goal is to write one poem a day throughout Feb. Prompt for Feb 27th: Yearning. Poetry Form: Rhupunt #PADChallenge #amwriting #Poetrycommunity #virtualwriters #WritingCommunity #poets #poetsinpajamas #poetry #rhupunt

[Virtual Writers @virtualwriters]

Poem-a-Day Challenge continues with @virtualwriters. Your goal is to write one poem a day throughout Feb. Prompt for Feb 26th: Xenial. Poetry Form: Senryu #PADChallenge #amwriting #Poetrycommunity #virtualwriters #WritingCommunity #poets #poetsinpajamas #poetry #senryu

[Virtual Writers @virtualwriters]

Poem-a-Day Challenge continues with @virtualwriters. Your goal is to write one poem a day throughout Feb. Prompt for Feb 25th: Wanton. Poetry Form: Quatern #PADChallenge #amwriting #Poetrycommunity #virtualwriters #WritingCommunity #poets #poetsinpajamas #poetry #quatern

[Virtual Writers @virtualwriters]

Poem-a-Day Challenge continues with @virtualwriters. Your goal is to write one poem a day throughout Feb. Prompt for Feb 24th: Vulnerable. Poetry Form: Prose Poem #PADChallenge #amwriting #Poetrycommunity #virtualwriters #WritingCommunity #poets #poetsinpajamas #poetry #prosepoem

[Virtual Writers @virtualwriters]

Poem-a-Day Challenge continues with @virtualwriters. Your goal is to write one poem a day throughout Feb. Prompt for Feb 23rd: Upset. Poetry Form: Blackout #PADChallenge #amwriting #Poetrycommunity #virtualwriters #WritingCommunity #poets #poetsinpajamas #poetry #blackout

[Virtual Writers @virtualwriters]

Poem-a-Day Challenge continues with @virtualwriters. Your goal is to write one poem a day throughout Feb. Prompt for Feb 22nd: Thoughtful. Poetry Form: Cascade #PADChallenge #amwriting #Poetrycommunity #virtualwriters #WritingCommunity #poets #poetsinpajamas #poetry #cascade

[Virtual Writers @virtualwriters]

Poem-a-Day Challenge continues with @virtualwriters. Your goal is to write one poem a day throughout Feb. Prompt for Feb 21st: Tranquil. Poetry Form: Tricubes #PADChallenge #amwriting #Poetrycommunity #virtualwriters #WritingCommunity #poets #poetsinpajamas #poetry #tricubes

[Virtual Writers @virtualwriters]

Poem-a-Day Challenge continues with @virtualwriters. Your goal is to write one poem a day throughout Feb. Prompt for Feb 20th: Sensual. Poetry Form: Triolet #PADChallenge #amwriting #Poetrycommunity #virtualwriters #WritingCommunity #poets #poetsinpajamas #poetry #triolet