Sorry that I’ve been away. It’s like taking an extended nap and then forgetting to reply to all those text messages from before the nap. You feel me? You would feel me if you have chronic fatigue ahah such a fucking common thing I do.
Anyway, I went to a Rheumatoligist today. They are musculoskeletal and immune specialists. They basically tell you whether you have an auto-immune disease or not.
My doctor explained that it was just another administrative process to being a fully fledged chronically ill person with no diagnosis other than “ya fucking tired, you got chronic fatigue, go home and sleep.”
I was hella nervous because I REALLY felt like was my last chance at hope. I mean??? No one wants to be told they have an autoimmune disease but at least it’s SOMETHING. Do you know how frustrating it is being told you have a SYNDROME. WHAT THE ACTUAL FUCK IS A SYNDROME? A syndrome seems like some gene pool fuck up that leaves you with a bit of a fucked personality/body or something.
I was joking with my chronically ill friend that Rheumo’s have the best job. They wouldn’t have that job performance anxiety where they feel like they really wanna impress or cure a patient because you can’t cure any autoimmune things just manage them. It’s a pretty neat job. No one comes to you for a cure. You can’t fuck up really?? It’s not like you can make their life worse than it already is. Sorry sweaty you have an autoimmune disease, that’s $450 for the consult. BYE.
Basically, I knew seeing a rheumo was not going to help but I had hope. Isn’t that sad? I know I don’t have an autoimmune disease already. I have no inflammation blood markers, I have no symptoms. I’m just tired fam.
I had no idea how a rheumo appointment goes and in light of that I’d like to share how the consult went.
The rheumo was like hi codii, my name is -literally points to her name badge to which I can’t even remember her name cos I was tired lol just cfs things-. She asked me how I was going. WHAT DO I SAY???????????? Like right in this moment how am I? How is my life? How is my condition???? WHAT DOES THAT QUESTION MEAN! I did a nervous laugh while contemplating all that shit and then said good. Nothing is good sharon, I have an impending sense of doom lingering over me, I haven’t washed my hair in a week, my kitchen is so dirty that I have fruit flies making it their home.
Anyway, then she did the most dreaded thing ever and goes “SO TELL ME YOUR STORY.” I just wanted to walk out. Fuck you Sharon. Firstly, do you not read my blog? I’m kinda a big deal. Secondly, that’s a general question m8. I was born, some shit happened in the middle and now I’m here at 10am on a tuesday at the hospital tryna get my life together. I just ran through a really brief timeline of what happened. She goes “yes it does seem exactly like chronic fatigue. I’m not a chronic fatigue specialist though. I’m not being facetious (SHE SAID THAT WORD IN A GENERAL SENTENCE) when I say that I am not a specialist and I do not know if there are specialists. I’m being very serious. What I do specialise in is autoimmune diseases so let’s make sure you don’t have an underlying autoimmune disease causing you fatigue.
She’s so damn good at segues. I admire her segues. I admire how she keeps this appointment so on topic. She’s an actual hero.
She then asked if I had any skin conditions like rashes, any chest pain, any soreness, any joint pain, any stomach conditions, any headaches. She then says okay you don’t have an autoimmune illness. Lay down and I’ll examine you.
She checked my blood pressure, heart, chest, lungs etcetc. She then grabs this fucking hammer type thing and starts banging on all my reflexes/joints IDK to see how they react, I assume? I was shivering, I was convulsing, I was about to cry from how much pain I was in. She goes “what’s wrong?” in her cold af voice. I said that it hurts in the deepest way imaginable like the pain of being banged everywhere (lol) is hurting my soul. She doesn’t respond and keeps banging. She then goes “I’m going to check your joints because that’s what I get paid to do” and I think it was meant to be a joke or something but it was not funny and was just weird??? IDK. Was she laughing at her job? Who knows.
At one stage she held my arm at my elbow and my whole arm did this dramatic af hypermobile FLOP. She was like wow you’re hypermobile. That’s probably why you like yoga. Nah sharon, I like yoga cos it helps me exist, not cos i’m good at it, I can’t even touch my toes ffs.
She told me to sit back down. She said I need to go to an exercise physiologist in regards to my cfs so I don’t decondition. Lovey, I thought you told me you weren’t an expert in cfs? Why you talking about deconditioning from being so tired and not pushing yourself?
That was the part where I just got really pissed off. You’re either an expert or you’re not. If you aren’t, please don’t comment on exercise and pushing yourself. She kept using this DUMB AF analogy.
Here it is:
“As I said, if all I can do is walk, and I keep walking, I won’t be pushing myself because I can already walk”
Can you just stop?
She also said I should go to a dietician since I can’t eat heaps of foods because they make me sick. This was the only relevant and interesting thing I got out of the appointment. She said that if I’m not coeliac yet get so sick when I eat gluten than it’s the FODMAPS associated with gluten. I’ve researched it all day and I’M WOKE KIDS. YEPYEPYEP. I’m FODMAPS fucked. Not worth $450 to be told that though.
I’d like to highlight that I did not pay for this appointment. I went through the public system and was on a waiting list for 6-9 months. Somehow this annoys me more because I had hope that something would get fixed alllll this time and her conclusion is “you are discharged, you don’t have anything wrong, CFS, go see that dietician and physiologist.” Having said that, I’m also so grateful I didn’t have to pay because it all seemed so hopeless and frustrating and upsetting.
It’s sad and fucked when you’re genuinely upset that you don’t have an autoimmune disease and you’re just fucked without good explanation. I refuse to belief chronic fatigue syndrome is a thing. I just want a solid explanation!!!!!!!!!! But I do acknowledge that I do have CFS 200%. I just wish it was more researched and funded so that had answers to have cfs is.
Also, the rheumo asked me about my anti-depressants and how they are doing for me. I’m like absolutely amazing. I’d be dead without them. Well and truly dead.
She was this really proper south african with a rich white person accent. She was shook with my response. She’s like ohhhh okay (probs thinking mental illness isn’t real or something hahahahaha).
This brings me to my next point.
I wish there wasn’t this fucked stereotypes of what mentally ill/chronically ill people look and seem like.
I have this idea of a dishevelled, sad looking ill person.
I’m an upbeat, well-presented, well-spoken person who should be at the peak of their existence.
Always love the reactions I get when I say I was suicidal AS FUCK before anti-depressants. What, I don’t look like I’m mentally ill to you???
I can’t wait until we break the fucking mould of what chronically ill people look like. I can’t wait until I associate chronic illness with people who look like myself instead of lonely, socially isolated, bed-ridden people in pain.
Does anyone understand what I’m tryna say?
I’m not trying to sound rude or snobby or anything. I just feel like chronically ill people and mentally ill people are portrayed to be a certain way when in fact we’re the gal sitting next to you in the hospital with the sleek bun, fashion on point and sunny disposition.
HAPPY TUESDAY TO YOU MY FRIEND!
The sleepy eggplant WITHOUT an autoimmune disease but who is hypermobile af 😉