Ok so I’m in bed & my feet are on fire! Literally feels like I’m burning alive.. thanks #fibromialgia you cruel bitch.. #painsomnia #pwME #NEISvoid

Another night of no sleep as I’m riddled with anxiety before having my 7 day ketamine infusion today.. it’s 5am & I need to get up in 2 hours.. oh how I miss a regular sleeping pattern 8 years of this crap.. praying that the ketamine takes 🙏🏻🙏🏻

Day 1 of ketamine.. I had a special little visitor to my hospital room #niece #NEISvoid #fibromialgia struggling to stay awake xxxx

Second night of #ketamine infusion & pain is spiking in my spinal cord & I’m just sleeping.. feel like I’m fading away #NEISvoid

Looks like the ketamine day 3 is providing some much needed pain relief along with endone! But sadly this was short lived as I have started crying & can’t stop (it’s a side effect) also has learned that I need spinal cord surgery in July & am quite terrified 😨 #NEISvoid xxx

Ok so night 4 ketamine was not awesome along with a ‘tissued’ IV, I had to have the ICU doctor put another cannula in.. not easy when you have bad veins!! 4am 😣😣😣 #neisvoid #chronicillness #pwme #spoonie #ChronicPain

Normalize people expressing the grief surrounding their chronic illness/disability. We don’t have to stay silent to make people more comfortable. #NEISvoid #SpoonieChat

Finally home and have had a ‘WELCOME HOME’ organic chook cooked with the trimmings as a celebration!! I’m super tired & in my pyjamas but happy to eat something made with love #blessed #Fibromyalgia #MyalgicEncephalomyelitis

Does anyone on here know of someone with #Fibromyalgia or #MyalgicEncephalomyelitis who have had a spinal cord stimulator inserted for pain management assistance? #NEISvoid thank you in advance

Managed to have a nice hot shower tonight in cold Melbourne, Australia! If you managed to shower, move, meditate or even stay alive today.. well done!! Living life with these diseases is the hardest job.. xxx #pwME #FibromyalgiaAwarenessMonth #NEISvoid #Fibromyalgia

What an incredible account of the experience Myalgicencephillitis has had on your life.. amazing poem!! #NEISvoid

Some great suggestions for a sensitive topic

#NEISvoid #FibromyalgiaAwarenessDay #fibromialgia #spoonie #SpoonieChat #chronicpain #chronicillness

Almost 2 year’s since my last shower. I wonder if it’ll be a reality during summer, or it’s gone be 3 years next June? 🤔😔 #severeME #MEAwarenesshour #MEAwarenessday #MEAwarenessMonth #MillionsMissing

Chronic illness culture is having to nap after taking a shower

Men: having #MECFS does not make you less of a man. Let's not try and make our masculinity fit the expectations others have for us. #MECFS #MEAwarenessWeek

ME/CFS News The M.E. Trust CFS Unite CFS4ME Iain Irish ME/CFS Association ME CFS FOUNDATION SOUTH AFRICA #ImHopeful Tina Rodwell #TeamPatient🇺🇦🕊🌎🕊💞 Fibroadvocate Runnin On Empty Frederica Moretti

Amazing work thank you Sharon 🙏🏻

Hey everyone I’ve been a bit quiet of late, spent the past week in the psych hospital having treatments for #depression.. an ongoing mental health issue that accompanies my #chronicpain & #chronicillness.. hoping to keep you all updated via #NEISvoid at moment daily nightmares 🤦‍♀️

Hi everyone.. I’m sorry I have not graced the Twitter forum lately.. had some time out with being sick & decisions around the future ‘options for my pain management’. Today I was reminded how precious life is as I lost a friend. Fuck, we are still here! #NEISvoid