toonerdyandiknowit

[toonerdyandiknowit]

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[toonerdyandiknowit]

Ok update- more for myself so I can track this BS but hey if it helps anyone that’s cool.

So my excess of tests was because they were thinking cancer or crohns. Luckily, that’s all clear and I instead have endometriosis.

Unluckily, there’s not much they can do for endometriosis. I was offered to go back on birth control, but I have contraindicators which is why I came off in the first place. So I’m having another internal ultrasound at the weekend, and after those results I’m going to ask to be referred to gynae to see if there’s anything they can offer.

I, of course, ended up being signed off as unfit to work for 4 weeks and have only just gone back. Which has immediately exhausted me. I didn’t even get to rest in the 4 weeks thanks to 2 bouts of covid and what I now know was an endometriosis flare up.

Good news - I’ve had recorded verbal confirmation that my hybrid working is basically approved and can start next week. Only took them 6 months but who’s counting? So hopefully that’ll help.

TMI

So for the past 18+ months I’ve been having random pain in my left abdomen which radiates towards my hip and my back, it’s debilitating pain. This comes with random sharp pains that double me over then disappear just as quick. And blood, often a huge amount, in my stool.

I finally gave in and went to my dr about it, as it was getting more frequent (went from every 3 months or so to now twice a month) and is having a major impact on my life.

Stool sample came back with blood in.

Colonoscopy came back clear.

Blood tests came back borderline iron deficient (possibly coz of regular blood loss?)

Ultrasound yesterday, was told I’d hear from them with results probably on the 4th and to call up if I don’t. Just got a text with the results that they found a cyst and want me to have another scan.

So ofc I’m panicking coz how big is this cyst that they’ve a) immediately told me rather than waiting b) want me to have another scan and c)is causing this amount of blood and pain?

I know I’m probably panicking over nothing - endometriosis and PCOS run in my family, but I was told 5 years ago (at my last internal scan) that I don’t have any signs of it, so why suddenly a cyst now?

[toonerdyandiknowit]

Update:

GP called me back, the dr is concerned about my results so wants me to go for an urgent blood test asap. I’m already going to the hospital on Friday so I’m just gonna get it done then, but that means I have an appointment tomorrow, appointment plus test Friday, a GP appointment on Saturday, and then another GP appointment next Friday. Also another ultrasound at some point before or after then?

This is on top of the last month of: 72hr EKG, cardiac ultrasound, colonoscopy, one ultrasound (internal), and a previous blood test (I asked if they can’t just use the results of that one as it was pretty extensive and isn’t even 2 weeks old, but apparently they want to test something specific that wasn’t in the last one).

I’m beyond burnt out. My job has let me work flexibly and make up hours I’ve missed for tests (though this means when I’ve had a long day of tests, I’m then working until like 8pm to make up for lost time which makes me more tired) but I had to call off today because of pain and fatigue. The internal ultrasound I had a few years ago was awkward and uncomfortable-yesterday’s was PAINFUL, I barely got through it.

I’ve signed myself off for the rest of the week, and my GP will talk to me on Saturday about if they think I should take more time off while we wait for results.

Ive not been to the gym in over a month because I’m too tired and in pain, I’ve skipped meals to sleep more, I’ve spent money on lunch so i can sleep in rather than make my lunch. I feel like I can barely function.

Chronic illness and going to the doctor is the fear that they’ll find something - and the equal fear that they won’t.

TMI

So for the past 18+ months I’ve been having random pain in my left abdomen which radiates towards my hip and my back, it’s debilitating pain. This comes with random sharp pains that double me over then disappear just as quick. And blood, often a huge amount, in my stool.

I finally gave in and went to my dr about it, as it was getting more frequent (went from every 3 months or so to now twice a month) and is having a major impact on my life.

Stool sample came back with blood in.

Colonoscopy came back clear.

Blood tests came back borderline iron deficient (possibly coz of regular blood loss?)

Ultrasound yesterday, was told I’d hear from them with results probably on the 4th and to call up if I don’t. Just got a text with the results that they found a cyst and want me to have another scan.

So ofc I’m panicking coz how big is this cyst that they’ve a) immediately told me rather than waiting b) want me to have another scan and c)is causing this amount of blood and pain?

I know I’m probably panicking over nothing - endometriosis and PCOS run in my family, but I was told 5 years ago (at my last internal scan) that I don’t have any signs of it, so why suddenly a cyst now?

[toonerdyandiknowit]

TMI

So for the past 18+ months I’ve been having random pain in my left abdomen which radiates towards my hip and my back, it’s debilitating pain. This comes with random sharp pains that double me over then disappear just as quick. And blood, often a huge amount, in my stool.

I finally gave in and went to my dr about it, as it was getting more frequent (went from every 3 months or so to now twice a month) and is having a major impact on my life.

Stool sample came back with blood in.

Colonoscopy came back clear.

Blood tests came back borderline iron deficient (possibly coz of regular blood loss?)

Ultrasound yesterday, was told I’d hear from them with results probably on the 4th and to call up if I don’t. Just got a text with the results that they found a cyst and want me to have another scan.

So ofc I’m panicking coz how big is this cyst that they’ve a) immediately told me rather than waiting b) want me to have another scan and c)is causing this amount of blood and pain?

I know I’m probably panicking over nothing - endometriosis and PCOS run in my family, but I was told 5 years ago (at my last internal scan) that I don’t have any signs of it, so why suddenly a cyst now?

[toonerdyandiknowit]

There’s something powerful about strutting through London in a cute lil outfit, all made up and accessorised, with my EKG leads on full display on my chest.

Like, tits AND medical equipment are OUT.

[toonerdyandiknowit]

I don’t know if you’ll see this anon, but I found her! She’s a 2002 wave 3, which are apparently very hard to find as they were not sold in the US (makes sense as I’m in the UK). I’ve attached a picture (from toysisters.com) and safe to say she doesn’t look like this anymore, her fur is matted down, the eyes are scratched, and I used to chew on her whiskers 😅 BUT now we know I’m not insane and made it up/dyed my toy cat.

Hi I was looking up Kitty Kitty Kittens (for nostalgia) and saw your post. Is it possible your tyco kitten was originally white or Siamese and was washed with its pink ribbon and the dye from the ribbon came out and dyed the kitten pink?

I’m not sure that would be possible, the top is very dark pink and then the pattern on the paws and belly are pale pink, I don’t think a wash dye would come out that even? I was only little but I do vaguely remember it being pink when I unwrapped it, and I named it “blossom” because it was “pink like cherry blossoms”. At some point I’ll have to get a picture 😅

[toonerdyandiknowit]

I’ve been discriminated against and made to feel this way in literally every job I’ve had. When I was a dishwasher at 16 my 40+ manager looked me up and down and said “well you look really good, not disabled at all” in response to me saying I couldn’t feel my hands properly so couldn’t carry dishes of food at the time without dropping them (wasn’t part of my job role anyway). At 17-18 I had a co-worker spread a rumour that it was “convenient” that I’d pass out/have a seizure and got to go home. 0 hour contract, super convenient to not get paid. At 19 a manager who wasn’t part of the hiring team lied to me and HR to try and have me removed from my station (told me I could catch up on the 1 training module I missed and then claimed she’d never said that and it wasn’t possible…stuck to her guns when I showed the text she’d sent me confirming it). I quit, and met up with my coworkers a few months later and they told me it had been revealed that she just didn’t want a disabled person on her team incase I made her look bad.

Last job was a total mess. Manager claimed to be moving heaven and earth to keep me safe and supported, turned out it was a flat out lie, even tho coworkers and supervisors had been making recommendations constantly and were concerned for me. Directly resulted in some pretty nasty injuries.

Current job also a mess, but way better than the others. Didn’t follow their own policies and then tried to penalise me for it when I started struggling with my health. Luckily, I’m now old enough and experienced enough, and had enough support at home, that I took them to HR with a ton of evidence and gave them a proper bollocking, so they should be sorting things out soon for me to have the support I should have had from day 1.

If you’re in the UK- document everything! Save emails. Get things in writing, even texts. Read your company policy.

Be an inconvenience!!

I would like to see more people talk about how jobs treat disabled employees.

I used to prep, wash dishes, and cook at mellow mushroom. I had chronic pain that wasn't NEARLY as bad as it is today, but it was still very debilitating. I told my employer "i cannot stand more than 4 to 6 hours. I CANNOT do shifts longer than this due to my illness." And even though i made my boundaries VERY clear, everyday i worked it was 8 hours at the least and 10 or 12 at the most. I would go up to my manager and say "look i really need to leave, my shift is over, my chronic pain is killing me." And he'd say "we really need to here, you HAVE to push through." And so i did, and after one, ONE month of that job my crps got incredibly worse to the point where i could no longer walk my dog around the block which was .5 miles. I quit, and that was FOUR years ago, and ever since that day I HAVE BEEN BEDRIDDEN AND HAVE TO USE A WHEELCHAIR. It is my biggest regret in life.

My best friend who has seen my whole journey has recently developed undiagnosed chronic pain, and she is in the EXACT same scenario i was 4 years ago. Busting her ass at a pizza place with extreme pain that hurts her so much she tells me "im in so much pain i don't even feel like a person." She doesn't feel LUCID. And her manager and coworkers are saying the same thing "if you don't help us you will let us down, we'll be in the shit."

That job thats hurting you isn't fucking worth it. I promise you no money is worth losing all your physical abilities and never getting them back. Your coworkers and boss do not give a shit about you, so don't you dare suffer for them. They will never understand your struggle and they will never try. They truly think being understaffed is worse than whatever pain you experience. They would rather you permanently damage yourself than inconvenience them. FUCK THEM. DON'T FUCKING DO IT!

[toonerdyandiknowit]

Feel like all I do atm is complain but this is a horrid flare up.

I’m so so tired. All the time. The kind of tired that makes you feel sick.

For people without chronic fatigue issues - I once stayed up 24 hours straight for a charity gaming thing and the way I felt at the end of that? Pretty much how I’m feeling every day in spite of sleeping atm.

My joints hurt like I’m 70. I have constant low level nausea. And I’m. So. Tired.

I rarely cry but right now, sat in my office at work, I’m feeling pretty close.

And my job is literally typing. I’m a typist. My hands ache like they’re sprained for no reason (I do stretch etc it’s not rsi or carpal) and that’s just the icing on the cake 🤣😭

[toonerdyandiknowit]

For my neurodivergent/ASD/ADHD folks in the midst of diagnosis.

Get yourself a questionnaire buddy. Neurotypical is fine, neurodivergent with an interest in neurodivergence is even better.

Because this is my second time filling out a questionnaire and it turns out with someone translating, my answers are different. For example:

- do you rock when sitting?

My answer on the sliding scale would be “disagree”. My friend pointed out I do rock when sitting. Constantly. I said no, I sway. From side to side. Rocking is back and forth.

- Do you take things literally?

My answer would be “neither agree or disagree” because I have learnt and understand metaphors. My friend redirected me to the question above as how I took rocking literally, and that being “gullible” also counts.

- various questions on “do you like social situations?”

My answer would be “neither agree or disagree”. Because it depends on the day, the place, the amount and type of people, is it loud etc etc etc. it’s a very broad question. My friend pointed out that any answer that is a “yes but…” counts as a no. “If you need all that information in order to be comfortable in a social setting…then you’re not comfortable in social settings”.

- do you do things the same way every time.

My answer would be “neither agree nor disagree” because this is the same thing as a routine, right? And sometimes you can’t do things the same way so… but, again, translation time. My friend asked “what is something you do everyday, like brushing your teeth, is there a certain way you have to do that” me “that’s silly everyone brushes their teeth the same way I’m pretty sure. It’s brushing your teeth” her “ok fair umm what about in the shower?” Me “oh you mean how I shampoo twice, rinse, then put conditioner in, soap my body and then my face, rinse my face, rinse the conditioner, then use the shower head to get all the soap off my body?” And she said “yh! Ok. Do you ever soap your face first?”

The answer was no, because I need to see to put soap on my body and scrub and I lose balance doing that with my eyes closed, which they have to be to wash my face…and if I wash my face first then it throws me off so I’ll rinse but won’t soap my body coz it’s…wrong?

So…that’s what they mean apparently. So the answer was yes.

Basically, the questionnaire to tell if someone could be in the spectrum is not actually written with us in mind, so get yourself a translator! The dr/nurse/professional who referred you can help if you ask!

Honestly it’s…interesting to learn how many behaviours I have that tick these boxes in a way I’d been avoiding for so long.

[toonerdyandiknowit]

Early morning overwhelm.

(Long vent post sorry)

Ok so it might be time to admit I’m not doing as well as I think/pretend I am.

I want to call in and work from home today but I can’t because there’s only one manager available and they don’t arrive at work until after I do, and messaging them at 6:30 means I won’t get a response in time for it to matter (I’d have to have left home by the time they reply) and it also feels rude to do.

I’ve been awake since 6 which should have been fine, that’s my normal “get up and ready for work time” but omg getting up and making breakfast and my lunch and getting dressed and brushing my teeth and doing my makeup and sorting my hair and and and…it’s too much in my head and I know I would be behind and late if I tried because my head is getting lost between point a and b.

So I’m sacrificing breakfast and lunch to lie in bed and try and calm down enough to get dressed. Except atm my office clothes are really overwhelming and uncomfortable for me so I can’t figure out what to wear.

What makes this worse is I am meant to work from home. My therapist, my GP, a nurse, a representative of an nhs charity (Employability) AND Occupational Health have all said with my role and my health etc it’s perfectly reasonable for me to wfh 3/4 out of 5 days. My managers have known this for several weeks now. But they’re saying they can’t implement it until they can discuss it with employee relations, who happens to be on leave. so oh well in the meantime come into the office full time as usual, even tho we know you’re suffering and have threatened to suspend you if you’re off sick again (they can’t do that and have gotten into trouble for it but I’m still too scared to call in sick/to work from home, especially as I’m on leave next week and they’ll claim it’s a “pattern”).

I just feel frozen and sick and panicky and in pain and I have no power over anything to help myself with it.

[toonerdyandiknowit]

Anyone else have problems in the mornings?

I always wake up anxious, like fully on the verge of an anxiety attack, feelings of doom upon being awake. And it takes ages to fade, it’s one of the things that makes working so hard for me.

On a good, non-flare day, I wake up naturally at about 8am with no panic etc. on bad days it’s more like 10. On REALLY bad days it’s more like 1 in the afternoon.

But my job STARTS at 8. So I get up with my alarm and immediately feel like panicking, I’m usually also tired and in pain, and I need to get up and make breakfast and lunch, get dressed “office appropriate”, makeup and hair, and walk to the bus. So many times I’ve ended up buying lunch coz I just cannot move fast enough. I can’t wake up any earlier coz that just makes me feel even worse. When I’m not in flare up I meal prep which helps but when I’m in flare up I can’t even do that.

But the panic. It just ruins my whole flow for the day and makes me feel shit. Anyone else?

[toonerdyandiknowit]

Today I learned:

Having a preliminary autism diagnosis (waitlist is currently 3 years so they’re doing this triage thing where you get a mini assessment by a relevant professional who knows what they’re talking about but isn’t officially qualified to specifically diagnose, they then write a letter that is basically “oh we’re 99.9% certain this one has autism please treat her as such unless told otherwise later”) is WILD.

Wdym I’m allowed to explain to my work that yes, I CAN force myself to come into the office and yes I DO get as much done as anyone else, but the act of getting/being here is so overwhelming because “abc” that it’s directly contributing to my OTHER health issues and that’s why I keep having to go off sick, like ALL OF LAST MONTH???. And that actually, considering my particular role, it’s totally reasonable for me to work from home 3 or 4 out of 5 days a week.

And that’s enough! That’s without considering the chronic pain. The chronic fatigue. The possible heart condition. Just the possible autism is enough that they should accommodate me in this way so I can work! AND ITS HELPING?!

How dare my disabilities be disabling me all this time while me and everyone else pretended that ignoring it/pushing through would make me get used to things and I’d magically be able to do things able bodied people can. How dare.

(I have a meeting with work tomorrow to discuss wfh more than 1 day a week and I am excited)

(My OH consultant said getting my degree and having jobs with not even a prelim diagnosis was very well done of me and yes it’s entirely reasonable that I need a BREAK. It’s time for the systems to bend for me rather than me for them!)

[toonerdyandiknowit]

Any of my chronically ill people get that hurt and frustration when your overhear co-workers/colleagues who are older than you joking about “old lady” things they do now they’re “old” and you’re there like…

They (50-60) were just joking about being tired in the afternoon coz sometimes at the weekend they’ll have a cheeky “granny nap” if they’ve been busy.

And I (27) have been needing afternoon naps to function since I was 14. Felt like overnight I went from “normal” 14 year old active to…needing “granny naps”.

And they notice I get tired and make semi-concerned comments that I look “peaky” again but…the concept that I can’t function to their level when they’re 30 years my senior is just beyond them at times.

I’m about to be signed off to wfh 3/5 days as well by occupational health which will cause a stir (the 60 yr old has a personal grudge against people doing wfh which ugh) so that’s exciting.

[toonerdyandiknowit]

Being 27 and told you’re autistic unlocks all sorts of nonsense.

As a side note, I’ve actually had multiple health professionals talk to/at me about being on the spectrum since I was about 21, I’ve just been in denial and refused to be tested. However I’ve been struggling with life a lot recently so I gave in and yeah turns out they had a point.

I’ve always repressed my negative emotions due to backlash. Anger = bad so I mustn’t be angry. But when I get overwhelmed I get angry, so I get quiet and isolate to try and recover.

Currently I live with my wife at her mums and there are 3 dogs who bark almost constantly (well, it feels that way when I’m overwhelmed) and all I want to do is cry and scream coz there’s so much going on why can’t they just SHUT UP SHUT UP SHUT UP. But then I’m bad and mean coz they’re just dogs I should get over it and sort myself out and stop being so weird, why would a normal person get SO angry about it just calm down and be normal.

And I used to think I was just over dramatic but apparently this is autism. Who knew.

[toonerdyandiknowit]

Crochet Amigurumi PDF Patterns from irenestrange

x / x / x / x / x x / x / x / x / x

[toonerdyandiknowit]

Hi I was looking up Kitty Kitty Kittens (for nostalgia) and saw your post. Is it possible your tyco kitten was originally white or Siamese and was washed with its pink ribbon and the dye from the ribbon came out and dyed the kitten pink?

I’m not sure that would be possible, the top is very dark pink and then the pattern on the paws and belly are pale pink, I don’t think a wash dye would come out that even? I was only little but I do vaguely remember it being pink when I unwrapped it, and I named it “blossom” because it was “pink like cherry blossoms”. At some point I’ll have to get a picture 😅

[toonerdyandiknowit]

Advice?

I’m on my way to FND rehab/therapy and I need advice on confronting my team about something.

I’ve said from day 1 that I do not like guided breathing, meditation, or mindfulness. It doesn’t work on me. And more than that, I don’t like it.

It actually causes me to feel more anxious when I try.

I have brought it up multiple times and I’ve basically been ignored to the point where one of the therapists made me go through a 20 minute mindfulness session, and then had the nerve to look shocked when I told her that I felt worse than I did when I sat down.

- I ended up snapping at her that it’s actually basically a trigger for me and it’s never going to work -

I’m concerned that they’re going to bring it up yet again today, and I’m trying to figure out how I can say “please stop, I feel like you’re not listening to me” without them turning it into “you’re just not willing to try”.

I am. I have. I have allowed myself to be put into uncomfortable and anxiety inducing situations to prove I am willing to try but I really feel that they are not listening to me at all, just coming to their own conclusions and trying to make me shape to them.