Nerdy

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!

But then when I actually think about it, I have spat out food and refused to finish a meal that I otherwise really enjoy when I come across a texture I didn’t expect…

(haggis, as an example, has a flavour profile I really like. But it’s a texture nightmare because there’s so much happening)

And to me shape/colour/design etc absolutely have an impact on taste or look, in my personal opinion. Like…I like pasta, but if you served me tuna napolitana (for example) but made with spaghetti…is it technically the exact same recipe? Tuna/sauce/pasta? Yes. Will it taste the same? Also, technically, yes. But is it wrong and I will absolutely hate eating it because that’s the wrong type of pasta? Also yes. So there, the “look” or “design” has overtaken the “taste”, even though I can acknowledge that the taste is still important etc etc

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?

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.

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.

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?

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.

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."

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.