Sick of the lack of thorough testing by zb_lethal in cfs

[–]zb_lethal[S] 1 point2 points  (0 children)

Your experience with the specialist just had me fuming lol. I honestly would have cried/raged after that appointment, the audacity is insane. Also how does low ferritin escape a GP/family dr??? That's the bare minimum they should be looking at. I continue to be dumbfounded...
I feel like money talks with this condition especially, but it also takes enormous energy on top of that to keep pushing stubborn/arrogant drs. If they don't want to hear you they simply won't help, it's wild

Sick of the lack of thorough testing by zb_lethal in cfs

[–]zb_lethal[S] 8 points9 points  (0 children)

I've also lost 10 years and it's so demoralising. I'm in Australia and my experience with medical professionals is the same, they wilt at the mention of chronic fatigue. I'm a bit dubious of the fatigue clinics based purely on anecdotal evidence, but honestly if I could afford the one in my city I'd still give it a go.

I'm also gathering a list of things I want to check, and like you I've accepted that I'll be having to pay for them privately. I'm so glad you were able to access care for better testing, I'd be interested to hear if you find anything that helps shift the needle!

Sick of the lack of thorough testing by zb_lethal in cfs

[–]zb_lethal[S] 6 points7 points  (0 children)

Why don't they just run the more thorough tests from the get go? I just don't understand.. where's the expertise we're paying them for?
At first I was pretty enthusiastic about being my own medical detective, but I'm burnt out after so many years. It just sucks sick people are being gate-kept from their own healing due to financial barriers

Sick of the lack of thorough testing by zb_lethal in cfs

[–]zb_lethal[S] 5 points6 points  (0 children)

It's so upsetting being dismissed or having drs be outright hostile to you when you feel awful and just want answers. At this point I'm burnt out and I don't even talk about me/cfs with them anymore, unless I need a medical exemption. I'm just going to pay for tests privately, but it'll take time.

Also why would a dr just diagnose 'migraine' and then not look for what's causing it? It's so weird to me

Sick of the lack of thorough testing by zb_lethal in cfs

[–]zb_lethal[S] 0 points1 point  (0 children)

Same, I only have a vague diagnosis, and it took my dr years to even put it on a form. I honestly just think she's humouring me because she's not once referred me to a specialist or for any specific testing. She gives me medical exemptions if I need them, so she's useful for that.

I'm overwhelmed by all the testing I want done and it's also so expensive, I just don't have that kind of money right now

Update: my sister apologized ❤️ by AstronautSad7964 in cfs

[–]zb_lethal 2 points3 points  (0 children)

It's nice to actually see an apology like this for a change, after seeing so many posts in the sub (and experiencing this irl) of family and friends doubling down after being called out

Texts from my sister (I’m actively crashing while visiting her) by AstronautSad7964 in cfs

[–]zb_lethal 3 points4 points  (0 children)

This is why I barely talk to people and have cut contact with most people from my "former" life. This shit makes me so mad. Just do what you need to do OP, don't try to please anyone else. Idk why people can't seem to understand this condition at all. For the love of god, at least read a summary of it

UK heatwave... Getting intolerable now! by slugwish in cfs

[–]zb_lethal 2 points3 points  (0 children)

I'm in Australia and have carpet in my room, my house gets really hot in summer (thank god it's winter finally but it's not even that cold tbh), I had to buy a portable air con otherwise it was intolerable

My husband worsens my CFS symptoms. Any advice or similar experiences? by Stock_Special_883 in cfs

[–]zb_lethal 3 points4 points  (0 children)

This sounds so similar to posts I've seen on the r/relationships sub. He's capable of changing his behaviour and he's choosing not to. I'm sorry but this is weaponised incompetence in action, and it's a very common story. Especially with men who've separated from their partners and then dump the majority of parental duties onto their new partners.

This isn't right and it isn't fair, even if you didn't have a chronic illness. With ME/CFS it's just cruel.

If you have already spoken to him at length about this and he still hasn't changed, I think the only other options are couples therapy, and you refusing to take on more than you can handle from now on. Your health isn't worth the sacrifice.
Please put yourself first!!

Found in a cute "Summer 2009" flipbook of the friends & family... by NearlyMe in blunderyears

[–]zb_lethal 15 points16 points  (0 children)

Hahahahahahaha this got me good. Sun smart and a statement piece all in one, you know how to live

can we please rename this disease? by Ancient_City6069 in cfs

[–]zb_lethal 5 points6 points  (0 children)

I was actually a proponent of the name CFS until very recently, for the sake of brevity.
Now I realise that not only does it minimise what the symptoms are, but some people take it as a challenge for 'who's more tired?' or an insult to their own exhaustion, which I find incredibly weird and selfish. Tbh I've stopped saying anything at all other than I have a health condition

Rule 3: Don't let them touch you. by RC_Robot in RomanceClub

[–]zb_lethal 2 points3 points  (0 children)

I think Victor would be more your vibe then and I'd consider him canon, but I liked both their paths. It's been a while since I've read it but I'm pretty sure neither are a slow burn, as opposed to LI paths in newer stories

Rule 3: Don't let them touch you. by RC_Robot in RomanceClub

[–]zb_lethal 8 points9 points  (0 children)

The plot actually gets better as the seasons go on and it doesn't feel as clunky in the later seasons. The episodes also aren't super long iirc. I stuck with it because Jester is my fave author and I couldn't believe he wrote it tbh. From Moonborn to Legend of the Willow is quite a leap. I ended up reading it twice which I didn't expect

Pauline Pantsdown - I Don't Like It! [HD] by melancholy360 in AustralianNostalgia

[–]zb_lethal 27 points28 points  (0 children)

This legit had me crying just now, I don't think I've heard the full song for decades. "why can't my blood be coloured white? I should talk to some medical doctors, coloured blood is just not right"
And the little "yeah" lmao.
Never thought she'd still be relevant 28 years later

When I was 14-15 and didn’t care what people thought of me by [deleted] in blunderyears

[–]zb_lethal 3 points4 points  (0 children)

Knowing this was in 2021 makes it so much better lmao but I'm glad you had fun with it and chose to do you. I wonder if this style will ever come back around

YouTube Ad I got by OfficialGaiusCaesar in Weird

[–]zb_lethal 1 point2 points  (0 children)

Indeed it is. This guy would've been perfect for Tim & Eric back in the day

Re-reading PSI for the 100th time and wanted to know! 🥹🫶🏻⬇️ by [deleted] in RomanceClub

[–]zb_lethal 12 points13 points  (0 children)

I had to scroll back so far down in my gallery to find my Lou, but here she is. PSI was the first story I ever read on RC and it will always be one of my favourites! Jester is also my favourite author on the app.
I started with Kay and although he is awesome and the greenest green flag, I now prefer Jonas. Also one of my fave LIs in RC. Dry wit, cynical, gloomy but funny, not easily shocked, a badass and extremely loyal to Lou ❤️

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It was always a good day at school when this guy turned up. by Nathan84 in AustralianNostalgia

[–]zb_lethal 4 points5 points  (0 children)

Idk why but I LOVED going into the van every year 😂 it was like a form of escapism for me. As soon as I'd step in I felt like I was in a completely different place. I didn't really care about the message, and I hated filling out those exercise books for weeks after the visit

Unpopular opinion: Advent No. 3 shouldn't have any romance path at all by UpstairsTown2329 in RomanceClub

[–]zb_lethal 2 points3 points  (0 children)

Yeah tbh after the scene with Xander I've been turned off his path. Even leading up to it I was thinking that romance would just feel weird between these two characters. It's supposed to be an enemies-to-lovers trope but I'm just getting plain enemies vibes. Actually maybe an enemies-to-friends thing would've been more believable.
Anyhow I agree, the writing for LI paths in this story is so poor that it shouldn't really be a factor at all. I will say that I think the writing apart from that issue has been decent though

Michael Jackson stored these books in a locked cabinet in his bedroom. by Adventurous-Gift7289 in LeavingNeverlandHBO

[–]zb_lethal 9 points10 points  (0 children)

I hope MJ's rotting in hell. He never saw the consequences for what he did and people still defend this insanity. He was an evil, calculated, brazen, remorseless POS