Author | Lightnews

More Sleep Please @moresleepplease.bsky.social · Jul 5

Days 5 of being in indescribable pain, which indescribably, is hard to decribe because of it's indescribablity.

Because it's an open wound, my mouth smells as though something has crawled into my maw and promptly died.
#indescribablepain
#pain
#morepain
#andyetmorepain
#surgery
#openwound

2

More Sleep Please @moresleepplease.bsky.social · Jul 4

Me about every pain I've ever experienced - "Surely it can't get any worse than this!"
Throat surgery - "Hold my beer..."

It seriously feels as though my throat has been hacked with a serrated blade that's been held over the burning flames of Hades before being dipped in acid.
#surgery
#pain

2

More Sleep Please @moresleepplease.bsky.social · Apr 4

I am so unbelievably bored with this life.

3

More Sleep Please @moresleepplease.bsky.social · Apr 3

to have an allergic reaction. But it must be worrying for you that neither of your meds work for you. I don't think people understand the genuine fear of not knowing what is causing it.

More Sleep Please @moresleepplease.bsky.social · Apr 3

I think as General Practitioners, GPs know about a little bit about most things but tend not to look further afield from what they've learned so things get missed or misdiagnosed.

Mcas or Idiopathic anaphylaxis are when the triggers are unknown or unprovoked. I don't have to eat or drink anything

1

More Sleep Please @moresleepplease.bsky.social · Apr 2

I can't say that I'm depressed but there's an overwhelming feeling of sadness that won't go away. I don't feel like I'm under a dark cloud. There's no feeling as though there's a vapid hole in my chest. No 'Big Black Dog' nestling down beside me. Just a deep deep sadness.
#chronicillness
#sadness

2

More Sleep Please @moresleepplease.bsky.social · Apr 1

I felt quite offended when my bloods came back as "unremarkable." Not that I want it to be remarkable in a "you've got an incurable disease," way. But maybe they could have typed it as, "although unremarkable, her haemoglobins were very pleasant."
#chronicillness
#spooniesky
#nicebloodyougotthere

2

More Sleep Please @moresleepplease.bsky.social · Apr 1

Thank you. Unfortunately our GPs in the UK, are just not equipped to look at the broader picture. It's almost as though they've never even heard of MCAS as a possible explanation.

I don't think doctors understand the impact of the words "there is nothing that can be done." it's disheartening

1 1

More Sleep Please @moresleepplease.bsky.social · Apr 1

capitals, that I should have been seen at an allergy clinic years ago. I was so grateful because I had often wondered what it would take for my own doc to take me seriously. Would I have to have suffer an anaphylaxtic shock in front of him to be believed? Anyway, it's now 1:30 am & I'm finally home.

2

More Sleep Please @moresleepplease.bsky.social · Apr 1

I hadn't eaten or had anything to drink & yet I was in the middle of a very obvious allergic reaction. She got it immediately, as did the A&E Doc after waiting in "fast track" for almost 9 hours. And he was raging! He could not believe how dismissive my GP had been & promised that he would write in

1 2

More Sleep Please @moresleepplease.bsky.social · Apr 1

It has taken me 3 years of trying to explain to various doctors that I have allergic reactions from out of nowhere and time and time again I have been told that no such thing exists...except it does. I explained this to the paramedic as she looked at my swollen face and swollen throat.

1

More Sleep Please @moresleepplease.bsky.social · Apr 1

But I'm here to tell you that it does, because I spied this magnificent creature with my own eyes, heard his dulcet tones with my own ears. Who would have ever thought that in my lifetime, I would ever encounter...a doctor who listens! (gasp, shock, horror!) And one who was also angry on my behalf.

1

More Sleep Please @moresleepplease.bsky.social · Apr 1

Friends, I have borne witness to a miraculous event! Like a rainbow coloured Unicorn frolicking amidst the joy of playful fairies, like dragons taking to a sunburnt sky & like Kim Kardashian being fully clothed, I never thought such a thing existed.
#chronicillness
#mcas
#spooniesky
#allergies

2 3

More Sleep Please @moresleepplease.bsky.social · Apr 1

She IS bad juju. The nurse that finally took over got more done in 10 mins then Mrs 'I don't like people' had done in 2 hrs. Had a few silent ones brewing and percolating nicely and was about to share but then someone vomited Exorcist style and all was forgotten.

1 1

More Sleep Please @moresleepplease.bsky.social · Apr 1

Remember the awful Willy Wonka Experience that went viral? That was the Majic room.

1

More Sleep Please @moresleepplease.bsky.social · Mar 31

Thats awful! Doctors and their bloody God complex! I'm in A&E in a room called "Majic" but which should be renamed Doom & Gloom. If I keeled over right now, this nurse would just walk over my body. She is unapologetic in the fact that she doesn't give a shit.

1

More Sleep Please @moresleepplease.bsky.social · Mar 31

Why do some people insist on working with members of the public when they have no people skills whatever? Trying to explain my symptoms and could this nurse look anymore bored? Biatch actually yawned half way through and then looked away like I was inconveniencing her by being ill!

1 3

More Sleep Please @moresleepplease.bsky.social · Mar 29

It does feel futile and I'm tired of the whole chronic illness life but the alternative is an even worse place to be so I'll keep marching on. Thank you for those strong words and for your support.

More Sleep Please @moresleepplease.bsky.social · Mar 26

MRI on Saturday but I can't help feeling what's the point? Whether they find something or not doesn't take away from the fact that my life is still 50 Shades of shit. A new diagnosis isn't going to eradicate the old conditions and the old conditions aren't going anywhere. So again, what's the point?

1 3

More Sleep Please @moresleepplease.bsky.social · Mar 24

Yay! I've finally been discharged from the head & neck cancer pathway! But there's still lymphoid
tissue on the posterior nasopharyngeal wall, tongue base and cobblestoning of the pharyngeal walls & a small area of cystic appearance at the interarytenoid space. Just awaiting my 2nd MRI. #spooniesky

2

More Sleep Please @moresleepplease.bsky.social · Mar 14

3

More Sleep Please @moresleepplease.bsky.social · Mar 13

'Issue 5' of my mock Horror book covers/posters, created to present REAL quotes that delve into the minds of those that perpetuate misinformation, pseudo psychology and quack diagnosis regarding the cause & potential cure for chronic illness
#fibromyalgia
#chronicillness
#spooniesky
#nocureforstupid

2

More Sleep Please @moresleepplease.bsky.social · Mar 13

2

More Sleep Please @moresleepplease.bsky.social · Mar 13

#mockmagazinecover #brainfog #unsolicitedadvice #chronicillness

Mock magazine cover with fake articles entitled "A Tour Of An Empty Brain.' An Exclusive interview with Dr Emma Roids on how kale and exercise can heal all. Spacesuits for those with allergies. Tips for unsolicited advice and a bonus feature showing "jaw dropping photographs of immune system waging war on the human body." Picture in the centre is of an astronaut in a space suit.

2

More Sleep Please @moresleepplease.bsky.social · Mar 13

"By now I was hunched over like a wizened old crone, the pain no longer allowing me to stand upright."

*Originally titled "Adventures in Laundering."
#chronicfatigue
#chronicpain
#spooniesky

themighty.com/topic/chroni...

Doing the Laundry When You Have Chronic Fatigue

"Will this tiredness never cease?"

themighty.com

2