PAIN CLINIC CALLED ME!!!!!!
PAIN CLINIC CALLED ME!!!!!!
booster flare up has me in so much pain/gut troubles that it was a struggle just to imbibe in pain relief 🥴
on the bright side, it should kick in soon, and i'll finally stop moaning and groaning; and it's beautiful out right now
i ended up telling my family about my fibro dx and they were a lot more sympathetic than i thought they'd be.
dad said, "oh, yeah, i see ads for that on tv all the time"
which is a hell of a lot better than i could have expected from him 😅
me: yayayy i got effective relief for my knee pain today! :1)
my shoulders: no. you know what? fuck this. fuck you
can anyone with cold intolerance give me some tips? I am really just sitting in my room temperature room with two pairs of socks and a sweater and fingerless gloves and a jacket after going outside for probably two minutes.
le epic brain fog..
Battiato cantava che certe notti, per dormire, a niente servivano tranquillanti o terapie;
cantava che certi giorni, che si ritorna con la noia e la stanchezza, a niente servivano nuovi eccitanti o ideologie;
cantava che tutto ciò veramente necessario, era un’altra vita.
Ci vuole un’altra vita – quante volte l’ho pensato. Una per fare ciò che mi piace, una per fare ciò che devo, una sana per amare, un’altra per saltare, sbagliare, perdere il fiato. Nessuna di queste, neanche una, neanche mezza, per soffrire.
Nemmeno una, neanche mezza, per tentare ogni notte di dormire.
Nemmeno una, neanche mezza, per avere l’affanno e la testa che gira per il dolore.
Nemmeno una e neanche mezza, per piangere lacrime al sapore di medicine e stanchezza.
Mi lascio allora trasportare, dall’insana, maledetta ed agognata idea, che non ne vorrei nemmeno una, nemmeno mezza, per vivere come sto vivendo adesso – come se vita così non fosse, come se così il buono, il riso, l’amore e il sole non fossero abbastanza per me. Come se la mia, non si meritasse d’essere così chiamata.
E mentre sprofondo nell’idea di un buio troppo buio, da far accapponare la pelle, da gelare il sangue, mi rispondo che no, non me lo merito. Non se lo merita questa mia vita di sentirsi così rifiutata, defraudata e demonizzata. Non se lo merita il mio corpo, di sentirsi così ingiustificato, abbandonato a riva di un mare mai esplorato, di un’isola sconosciuta. Non se lo merita chi di amore vero mi ama, perché è nell’unica vita di cui dispone, che ha scelto me e me sola.
Così non lascio che sia questa mia vita a perire di noia ed insoddisfazione, non lascio che la tristezza di questi farmaci e queste idee mi trascinino con sé, e mi aggrappo con tutto ciò che mi resta, che è una forza disumana e letale, alla vita. Mia agognata, complessa, forse insignificante ma pur sempre mia, vita. Do uno schiaffo ai pensieri beffardi, che non solo si burlano di me, ma del mio dolore, delle mie lacrime, del mio impegno. E pezzo dopo pezzo, ritorno a crederci, ritorno a pensarci, ritorno a sperarci su questa vita, mia mia mia. Enormemente mia. Anche se spezzettata, anche se complessa, ma pur sempre mia.
Mi vengono in mente le parole di Camus, e torno a sentirmi straniero, torno a sentirmi persa in un mondo che non ho in pugno e mai lo avrò – eppure, nella potenza scostante e luminosa della speranza, me ne innamoro ancora. Mi innamoro ancora sì, di tutto ciò che ho, dei miei sogni, delle mie incertezze. Mi innamoro forse, persino di questo corpo che colpa non ha se non quello di non essere amato abbastanza da me.
flare up time 🤪
the pain clinic my rheumatologist referred me to is an hour bus trip including a total of 25min of walking (one-way).
i hope maybe they provide transportation services...
I am in so much pain. I’m out of spoons. Sleep is a lie. Existence is bullshit. And I want to cry.
Nothing more fun than getting up and your body instantly going: Nope we’re done. Like, body, we just got up we can’t be done yet. Yeah, no, we’re done. Here have a general feeling of sickness without knowing what exactly is going on, but something clearly is, have fun Sherlocking that conundrum. Now go back to bed.
'Grippy sock holiday.' It's a way I've seen some people online refer to being admitted to a psychiatric hospital. In The Netherlands, you don't get grippy socks (I've got my own though).
I'm in a bad place at the moment. Wednesday night I was admitted here as I was a danger to myself. This was on a voluntary basis. I can't hurt myself here, I'm safe from myself here.
This is my first time being admitted in such a place. It's mentally a very draining experience. Especially with a chronic illness on top of all that.
I'm the only one I've seen here who uses mobility aids. I've already frightened a few other patients with my PNES. It's a strange place to be. My life is on hold, but that's okay. Because that's what I need right now, to have a time-out. Time to recollect my thoughts and to rest, while also regaining structure in my life. There is constant care here, which is what I desperately needed.
I hope my loved ones can now also take a break and recover. My partner has been through a lot lately, and I hate that I'm the reason for that. It's nobody's fault, but it still sucks. But I am so lucky to have such an amazing supportive network. My parents, my partner, my friends. They're amazing. Parents stopped by today and gave me a bunch of gifts, including the super cool plant in the picture! I'm so happy with it, I've named him Toby. But also snacks, a diary, pyjama's, colouring book and more! You have no idea how grateful I am for that.
So yeah, that's what's up with me now. Don't know how long I'll have to be here yet, I'm not worrying about it though.
i have a question for all of the chronically ill people who have or are in the process of getting a diagnosis.
what things did you do to make it easier?
currently im in a flare up and about to write down all of the symptoms im having. i have a really bad memory so usually by the time i go to the doctor, ive forgotten exactly what to say or i leave stuff out so im hoping that will help. but what other things could i do to make the diagnostic process easier?
You’re more than fibro and cherish those moments where you feel like it. I am showing moments where I am not worrying about my fibromyalgia and truly living life, it’s good to focus on these moments and memories because if you’re like me.. it’s hard to focus on those good stuff because all you feel is pain and you’re okay but you’re not happy persay. Not truly right now but that’s an topic for later lol. But feel free to do this as well. Like my username, you’re more than fibro. 🦋🦋
(The rest of the videos and moments I couldn’t post on here, due to restricting how many videos you can have in one post, on my Instagram story @shesmorethanfibro )
Do wanna know why us spoonie have trouble telling people we're sick?
Because we were raised by parents who were angry and who doubted us when we wanted to stay home from school cuz we were sick. We were surrounded by nurses and doctors who told us we were overdramatic or crying too much. We had elderly people tell us how happy we should be that we aren't in pain and should treasure our youth. We had family and teachers look down on us for spending any extended time in bed or on the couch. We had TV shows shame people who weren't healthy.
We live in a society where being ill is seen as being about how the person who is sick just isn't doing enough. Unless you have cancer, it's your fault somehow. You could eat better, exercise, or see better doctors. It is impossible for them to see illness as inevitable.
And it sucks that no one understands or sees what we go through. But society is broken and flawed and has no compassion for us poor spoonies.
Got the news the vessel probably has fibromyalgia... we're not sure how to process all of it and how much the pain is visible now
It's hard for me to post here, when there's nothing happening.
And I really mean nothing. Because of my PNES, I can't go outside without supervision. Going to the supermarket with my partner is pretty much the most exciting thing for me on most days. Last weekend, I stayed at my mum's house recently. It was a very nice change of pace.
My GP is trying to get me referred to an epilepsy centre. Not as easy as it seems apparently. I hope they will actually do an EEG on me there. I want to be absolutely sure it's PNES and not anything else. I'm honestly starting to think it might be Functional Neurological Disorder.
My psychologist has also reached out to the rehabilitation programme I'm supposed to start soon. Not sure if they received my referral, but I guess we'll find out.
I'm grateful for all the support I'm getting, especially from my partner. This isn't easy on him, but he is still there for me.
My life is boring, but exhausting at the same time. Not being able to go anywhere makes the pain a lot less. But that also means my flares are even worse as soon as I do do something. My PNES are physically and mentally draining. I get a lot of headaches lately and my appetite seems to be insatiable.
Better days are coming, but I'm not sure what to do while I'm waiting for them.
Hi all! I wanted to make an introductory post.
My name is Sarah. I use they/she pronouns. I am 22 and currently a third year student majoring in Writing and Computer Information Systems. I am part of the beautiful LGBTQ+ community, and identify as nonbinary and queer. I am chronically ill and identify as disabled, and live with POTS, fibromyalgia, migraine, PTSD, psychosis, panic disorder, and more. Im a lover of all things books, music, the beach, writing, academia, and my dog. I’m passionate about mental illness advocacy and enjoy sharing my lived experience with severe mental illness to raise awareness for and to shed light on life with my and other related conditions. Thank you so much for reading this and joining me on my journey!
Image description: A black and white selfie of Sarah, a white nonbinary person, smiling at the camera. They are wearing a black button down top and translucent glasses.
Dean gets numbness and tingling everywhere but his least favorite spot to get it is his face. He can work through shaky arms and legs, and the feeling in them will return eventually, but when it comes to his face he just feels weird and its a sensation he never quite gets used to even after all these years.
And it doesn't help that you can't really hunt, drive, read, etc. when it feels like your eyes are vibrating. His eyelids feel too heavy then as they shake. Well, shakings not a good word, it's more like ants crawling under his skin. All he can really do is shut them, and lean his head back and hope it will pass soon.
His cheeks are bad too. He reaches a point of sensory overload much too quickly sometimes and there's no way to avoid it. When they're numb he sits there slaps them a couple times. It doesn't usually do anything, but he hasn't stopped trying it.
The reason he bites his lips so often is because they're numb. Trying to work feeling into them. He's ended up with numb, swollen lips, all from trying to be able to get enough feeling in them to drink something without it dribbling out of his mouth. He's gotten pretty good at not letting it do that though, despite how his lips feels. It's one of the reasons he puts his whole mouth around the spout of a bottle. When they're tingly he'll drag his teeth across them to counteract it. This also only works a little and it just tears the skin up on them really.
The only solution in the end is to usually wait this stuff out. And he hates it.
I've been quiet for a while, I didn't know what to say. I don't really have anything hopeful or inspiring to say.
I've had a rough week. It's getting colder, and I used to love cold weather. But I didn't realise that the cold makes fibro worse. I've also been stuck in my house, I can't go anywhere without supervision. I had hoped my PNES seizures would be less by now.
I used to go out for walks all the time. I loved my evening walk. I would listen to music and just walk for a while, sometimes even hours. I really miss it. My partner and I go for a walk every day, but I miss being able to go on my own.
I'm going to start at a rehabilitation centre soon. Right now they don't have availability, but they should have time for me soon. I'm probably going to be referred to an epilepsy specialist too, for my PNES. Mainly to make sure it actually is PNES and not a different type of seizure. Until then, I can't go outside by myself.
Life isn't all bad though. I'm going out for dinner this weekend, and I'm staying over at my mum's house. I'll get to introduce you all to my other cat, Loesje! Loesje has recently been diagnosed with arthritis, and now we take the same medication!
I'm having a hard time right now, that's okay. I don't always have to feel good. As long as I know that this is temporary, this feeling will pass.