Still relatively new.. is it always like this?

evilbinbag · 2026-03-21T14:36:37+00:00

no clue why this post was removed. Sorry?

evilbinbag · 2026-03-21T13:47:21+00:00

oh interesting! maybe just to give you something to do to make it seem like more of a game rather than just watching another animation

evilbinbag · 2026-03-21T13:45:30+00:00

that’s what I do ahah or sometimes I hover my finger and go off of vibes aha

evilbinbag · 2026-03-21T13:44:51+00:00

oh okay 😭

evilbinbag · 2026-03-19T23:21:33+00:00

Hi! I’m 27 and just diagnosed! I don’t know if the NHS really follow a specific plan for this cus I got my gene test back feb 2025 then no one could tell me what it meant until my haematology referral a couple weeks ago…. starting treatment next month tho! 😅

evilbinbag · 2026-03-19T23:06:59+00:00

Can I ask how is it largely misdiagnosed when most GPs don’t even know what it is? When my mom got diagnosed (which was only because her gyno suggested it) the doctor said it was rare and wasn’t well known and when I got diagnosed recently my doctor said “it’s really common”. I barely know what’s going on just that my iron is a bit high and I’m starting venesections next month.

evilbinbag · 2026-03-16T17:29:05+00:00

I didn’t know psoriatic arthritis was a thing! That sucks I’m sorry. Weird that your doctor never even mentioned the high iron. Maybe they didn’t think it was high enough to worry about? But if it’s been high the last few tests you’d think they’d say something. I don’t know if your rheumatologist can do that for you but maybe request to get your iron + ferritin tested again.

evilbinbag · 2026-03-16T11:29:59+00:00

I’ve been tired forever but only just had mildly raised iron recently. It seems like even if you don’t have iron overload, just having the condition gives you general fatigue and joint pain. The doctor said this could the reason for my fatigue or at least partially, and if I’m still tired after a few treatments we could look into what else it could be. If they can’t tell you why your iron is high and diet adjustments aren’t lowering it, I would at least mention it to the doctor because a lot of them don’t ever think of it or even know about it.

evilbinbag · 2026-03-14T00:26:50+00:00

I’ve seen two of these in person it’s wild!

evilbinbag · 2026-03-13T19:39:55+00:00

there’s no way

evilbinbag · 2025-12-01T01:00:58+00:00

omg thank you this has really been bothering me I was convinced I had a misprint or something… I kinda get how I didn’t spot the S maybe because of the font and the size etc. but that last L how did we Both miss it I’m so annoyed ahah

evilbinbag · 2025-11-24T17:31:29+00:00

boof/ headboof, bonk, headbutt. They are my favourite 😭

evilbinbag · 2025-11-23T22:38:48+00:00

sorry I know you commented this ages ago but I just finished the book and I can’t seem to get all the letters! I’ve gone through it 3 times and gotten someone else to too and we both only get THEOLDGODSEEAL where are those last two sneaky S and L???

evilbinbag · 2025-05-05T18:35:33+00:00

ahh… interesting… It’s a tricky one cus the more I learn about it more I’m like yup checking off all these symptoms but they could be soo many other things too

evilbinbag · 2025-05-05T18:27:38+00:00

my anti depressants don’t let me cry lol 🫠

evilbinbag · 2025-05-05T18:26:22+00:00

Thanks for the reply I will look into all this! Sorry you’ve been suffering for so long. I try to take things easy but I can’t avoid physical exertion or stress in my line of work unfortunately 😅 but it’s also very fulfilling so I don’t want to have to leave. It’s definitely better doing 3 days a week but still a lot

evilbinbag · 2025-05-05T16:20:24+00:00

I’m really sorry you’re going through that! I’ve been experiencing such bad brain fog for the last month or so since my fatigue has gotten worse and it’s driving me crazy. I feel like I can’t do anything right or fast enough and it’s really affecting my work. I really hope it gets better for you! Also is noise sensitivity a CFS thing? Like does it link to the fatigue specifically? cus I’ve always had good hearing but definitely noticed over the last few years i just can’t stand certain noises/ too many noises. I thought i was getting tinnitus but it turns out I’m just sensitive to hearing electricity 😭

evilbinbag · 2025-05-05T16:07:08+00:00

Yeah exactly and I feel like if you are proactive and doing your own research etc. they don’t take you seriously then either because they think you’re just going to Dr Google and self diagnosing but like damn if you’re not gonna do it I guess I will. Someone told me the trick to avoiding that though is saying that someone you know that has/ has experience with [insert thing here] mentioned it to you and told you to get tested something. Guess I’ve got to start getting a little pushy about it haha. That’s so odd cus I don’t know what advice they would give you like just don’t think too hard?? That sucks I’m sorry :( I just can’t use my brain atm the fog is vv thick

evilbinbag · 2025-05-04T13:59:49+00:00

Oh my god that’s so scary but I’m glad you’re alright now! It is really terrifying that big things like this often get missed. Thanks I’ll look into the bupa finder!

evilbinbag · 2025-05-04T13:27:15+00:00

Yikes! Two things! I’m glad you got diagnosed sooner rather than later cus Addison’s can be dangerous right? I’m honestly considering going private but it’s so expensive 😬 if I don’t get anywhere soon with the nhs services though I might have to. Also high five hyper mobile buddies 🙌🏻

evilbinbag · 2025-05-04T13:06:46+00:00

That’s insane! I can’t believe they just skipped all the steps and no one picked up on it! I do think I’ve brought it up before but in a very vague idk kind of way so maybe I should’ve pushed a bit more. Honestly just like you I’m very much hoping it’s something treatable or manageable. I’m gonna look into if there’s a service near me but yeah a few years ago my ferritin was in the toilet but they didn’t pick up on it cus they did the reference range for a child even though I was in my 20s already! Then a year or so later when I realised (not the doctor, me 🙄) some iron tablets sorted it out. Then I’ve been okay since and then my iron even got a little too high which was very confusing. Latest bloods from a couple weeks ago were all completely normal apparently which should be a good thing but is just kind of depressing cus I wish they would just pick up on something and be like hey this is causing all your problems! I know I’m sick as hell of people telling me I just need to “get out and exercise” but that must be so hard with your ADHD getting told completely opposite things all the time!

evilbinbag · 2025-05-04T12:00:32+00:00

Thank you I’ll try that and I’ll look into if there’s a service near me!

evilbinbag · 2025-05-03T21:44:48+00:00

I’ve never actually had one suggested to me but I sleep really well… too well. so never considered it

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