dazed & confused 😴

Rock/Punk/Alt/Indie Music lover. Film & TV geek. Love being creative when I have the energy! 🎨 🖌
#mecfs #hEDS #migraines #chronicpain etc.

[dazed & confused 😴 @_tinyplanets_]

An amazing card from an even more amazing friend ❤️ I didn't even know you could get cards like this! Thought I'd share, as I'm sure many of you will appreciate the sentiment! #pwME #chronicillness #NEISvoid #MECFS #MEAwarenessMonth #DisabilityTwitter

[dazed & confused 😴 @_tinyplanets_]

@hopefullizzy I have this! I have to wash my hair every other day or it gets really bleugh. I'm so jealous of people who can go a week without washing their hair and somehow it still looks amazing!! I do sometimes think some shampoos can make hair more greasy more quickly sometimes x

[dazed & confused 😴 @_tinyplanets_]

@beanieboople I think it's the lights, because I've spoken to a few people on here tonight who've all seen the light pinky/grey sky! I wasn't sure if I was imagining it!

[dazed & confused 😴 @_tinyplanets_]

@BeukieGaming It's going to be a lifelong regret if I don't get to see them tonight 😅

[dazed & confused 😴 @_tinyplanets_]

@sciirvy @IrelandAlerts Your photo looks super bright! Must be the lights..?

[dazed & confused 😴 @_tinyplanets_]

@sciirvy @IrelandAlerts It was a very light pinkish grey earlier for me too (and someone else on here said the same thing as well!)

[dazed & confused 😴 @_tinyplanets_]

@sciirvy @IrelandAlerts Yes!! Sky definitely doesn't look like a normal night sky, but I can't see any vivid colours either

[dazed & confused 😴 @_tinyplanets_]

@LeonByDay Still waiting...

[dazed & confused 😴 @_tinyplanets_]

@davro_t Watched the whole thing at the weekend. I still can't get over the fact that the guy who it actually happened to is the guy who is the lead actor, writer & creator of the show. Deeply unsettling for sure, but such a well-made series

[dazed & confused 😴 @_tinyplanets_]

@davro_t Hahaha right back at ya, bud! 😆

[dazed & confused 😴 @_tinyplanets_]

@davro_t We appear to have the same taste in women 😅 so please do loop me into the chat if they ever do message you... 😂

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

The persistent symptoms which can affect people following an infection, now known collectively as #MECFS, were first described in the medical literature in the 1650s. Some 370 years later, most drs still don't understand it. Is there a bigger failure in the history of Medicine?

[dazed & confused 😴 @_tinyplanets_]

@PlanetEarth_HD Another friend also has Vestibular Migraines and she takes amitriptaline for it after a trip to the Neurologist and it's massively kept her symptoms at bay, so might be worth a referral, if possible

[dazed & confused 😴 @_tinyplanets_]

@PlanetEarth_HD It was about 20 years ago, so struggling to remember, but I think it was about 2 weeks in total. My friend who has Vestibular Migraines was told that they thought she had Labyrinthitis to begin with but the longer it persisted it turned out to be this rarer form of migraine.

[dazed & confused 😴 @_tinyplanets_]

@PlanetEarth_HD I know it sounds like a made up viral illness 😅, but it's legit if you Google it. I really hope you get some support soon and your symptoms start to subside. It's a horrible thing to experience 💛

[dazed & confused 😴 @_tinyplanets_]

@PlanetEarth_HD So sorry to hear this, Stephen. My best friend experiences this and was diagnosed with Vestibular Migraines, so it would be worth looking into that. I once had something called Labyrinthitis when I was a teenager that gave me very similar symptoms, but as a one off 1/2

[dazed & confused 😴 @_tinyplanets_]

@DafoeWhitney Of course! My pleasure. We've all got to stick together in this M.E. community! I really hope these new symptoms start to subside soon for you, Whitney 💛

[dazed & confused 😴 @_tinyplanets_]

@DafoeWhitney He recommended taking 500mg magnesium as treatment to avoid me having to go on prescription meds (due to the side effects) and it has definitely helped. Doesn't eliminate them completely but has reduced the frequency of them quite considerably. Hope that helps x

[dazed & confused 😴 @_tinyplanets_]

@DafoeWhitney Hey Whitney, so sorry you're experiencing this. This sounds similar to what I get. A neurologist diagnosed me with Acephalgic Migraines (aura without headache). I get blurred vision and cognitive dysfunction with it too, but not always. It's not a nice feeling at all.

[Action for ME @actionforme]

An article in The @guardian today discusses the outdated treatment of #MECFS patients.

“From harmful ‘therapies’ to social services referrals, the notion that this illness is psychosomatic is having devastating effects. It’s the greatest medical scandal of the 21s century."

[George Monbiot @GeorgeMonbiot]

It’s the greatest medical scandal of the 21st Century. Intransigent doctors and gullible journalists have made the lives of ME/CFS patients a living hell.
A massive and shocking story in this week’s column.
https://t.co/apoW7uFGJS