Sick & Tired

29 | Female | Australian | EDS & more A girl with chronic illness, looking for help

[sickly-tired]

Does anyone have Classical-like Ehlers-Danlos Syndrome?

I’m just now realizing I might have that type over the more common hEDS type which my doctor thought I had. It fits with my other "left over” symptoms they haven’t explained yet. They never genetically tested me because they thought it would be “pointless” when they thought I had hEDS (because there is no genetic test for that). So I want to know what having it feels like from a personal perspective. Also some extra stuff for clarification.

Do you have one or two copies of the mutation the TNXB gene?

Do you also have deletions in the CYP21A2 gene resulting in congenital adrenal hyperplasia and problems with cortisol etc. causing palpitations and fainting episodes? I thought I had POTS but I didn’t meet any of the criteria except for the fainting spells and heart rate. 

Just wondering if this is a thing even worth bringing up with my doctor to investigate further, not trying to self diagnose lol. 

[poppy5991]

Me, a chronic pain sufferer when pain: Unfortunate but I will prevail

Me, a chronic pain sufferer when fatigue:

[sickly-tired]

Getting tested for MS (again) - lets see if brain lesions have finally developed.

[pyrus-salicifolia]

“Normal” test results are not the relief people think they are. When you wake up in pain and continue to be in pain for hours every day and your tests come back normal you don’t stop being in pain.

[sickly-tired]

You know it's really hard for me to use the word "disabled" for many reasons but one is that when I use it people tend to either dismiss me or, even worse, pity me. I end up backing away and say "technically disabled" or "yeah but it's no big deal" or laugh. Actually it is a big deal but the pity is the worst.

[thoughtportal]

5 simple exercises to awaken dormant muscles

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[onemillionwordsofcrap]

I appreciate this video a lot--people don't realize how important it is to start slow if you're trying to come back from a completely sedentary lifestyle, and they get really hurt as a result. Straining your muscles too much, too suddenly can land you in the E.R. and the wrong joint injury can permanently affect your mobility, so please start with absolute basics and easy stretches!

[sickly-tired]

You know I really kinda hate living in a house sometimes with a person who's dramatic about their illness and yet never does anything to alleviate their problems. The doctor tells them what to eat (or not eat) etc but they won't even make up their own pills for the day. They'd rather just moan about their problem while I suffer in silence. I follow all the doctor directions, follow the rules and only complain when it's going to impact the situation. They refuse to go to doctors appointments and I can't get anyone to take me seriously. It's all so frustrating. I hurt all the time and nothing helps with the pain. I probably shouldn't make this about them etc. but it makes it worse for me I suppose. To see someone who doctors actually want to help deny the help I can't get.

[ralfmaximus]

Cancer Vaccine Triggers Fierce Immune Response to Fight Malignant Brain Tumors in Human Patients

In the first human trial, an mRNA cancer vaccine at the University of Florida triggered immune systems to fiercely attack glioblastoma.

The discovery represents a potential new way to recruit the immune system to fight treatment-resistant cancers using an iteration of mRNA technology and lipid nanoparticles, similar to COVID-19 vaccines, but with two key differences: use of a patient’s own tumor cells to create a personalized vaccine, and a newly engineered complex delivery mechanism within the vaccine.

Within 48 hours, the four human study participants showed remarkable results: their immune systems went into turbo cancer-destroying mode. And without surgery, radiation, or dangerous chemotherapy.

Folks, we may have a cure for cancer within your lifetime.

[dduane]

May it perform as (so far) advertised.

[always-coffee]

Holy shit. This would be incredible.

[brehaaorgana]

From the book Organizing Solutions for People with ADHD:

Putting a coat on the back of a chair by the door is fine, but if you prefer, use coat hooks and a large catch-all basket for dropping keys, hats, gloves.

Small bookcase end-table next to the couch to store craft projects, books, and other things being worked on for easy access.

Add a storage unit near the dining room table to transition between eating and working there.

Daily toiletry items should be stored in a basket that you can move easily

Extra toiletries and medicine cabinet items go in open shelf/basket storage so they can be seen and used easily. If items no longer fit, purge the excess. Don’t obscure the view!

If you disrobe in the bathroom, place a tall hamper in there.

Keep a set of cleaning supplies in each bathroom

[unashamedly-enthusiastic]

Reblog and say what project you currently have spread on your dinner table in the tags

[the-real-seebs]

when i was a kid i would set things down on the table. then there’d be things so i’d push them to make space to set things down. eventually something would fall off the other end of the table. this surprised me every time.

[destigmatizeme]

[image description: a section of a tweet reads, “I've worked with adults with disabilities for close to 10 years and the standard is people first language I.E Person with autism.” /end of image description]

It’s so fun when someone who “works with” disabled people tells disabled people what they should be called. Paternalism is the bestest thing ever.

This doesn’t just happen online.

In my second year as a social work major, I said “I’m bipolar” to one of the graduate program’s professors. He said “you have bipolar disorder, you are not your diagnosis” and wouldn’t let me object. I had it happen in treatment as well.

Telling me what I was allowed to call myself did not make me feel empowered in the slightest, it did quite the opposite to be honest. It allowed my sense of self to erode so completely that I could not advocate for myself when I was “kicked out” of the major for being bipolar.

[linipik]

Exercises for all the homies who want to have a long career drawing.

The true problem with being an artist and drawing all day (as I wanted my whole life) is that human backs are not designed to hold that position, so it is very common for artists and designers to have really stiff shoulder blades, creating a chain of muscle strain towards the arm AND the back… and a lot of pain.

These are some physical exercises for artists and honestly anyone who works at a desk.

(all credit to my physiotherapist)

[robolynxx]

Fellow tired folks of tumblr —

You know that tired-in-your-bones feeling? We need a better word than exhausted and a less clinical word than fatigued to describe it…so let’s revive an old one.

Which is the better defunct adjective meaning “fatigued or exhausted”?

quanked

ramfeezled

Voting ended onJan 11, 2024

Please reblog for a larger sample size

[potsiepumpkin]

I wish that this wasn’t necessary and the world cared more about women’s health.

[sadhoc]

i understand that this is the "disabled people know our own limitations" website, but ime, if you are the kind of disabled where everyone around you knows about it and has known you as a weak, incompetent, subhuman creature your entire life: it is important to learn how to make the distinction between "i can't" and "i'm not allowed to."

"i can't hold fragile things without breaking them" vs "my housemates won't let me do dishes anymore."

"i can't manage my own finances" vs "my family won't let me make my own financial decisions"

"i can't ever learn how to drive" vs "the state has decided that people with my disability cannot be allowed to drive."

also "what would need to happen for it to be possible for me to be able to do dishes?" or "what would i need if i were to ever move out?" or "what kinds of supports would i need if i did try volunteering?"

even if the answer to these you come away with is "i actually cannot do the thing, no matter what supports or accommodations i'm given" that's fine! they're still useful questions to ask!

[sickly-tired]

What's really interesting is my family probally put a little extra amount of concern on things like only giving me the light grocery but honestly I'm a person who tends to over estimate myself. I'll be like "I can lift it! I'm fine!" Then I accidentally pull my elbow out of place. This doesn't have a point except OP is correct.

[heyatleastitsnotcancer]

So I've seen a lot of talk about pain scales. How there should be a special one for chronic pain patients or people who say they're 11 out of 10, etc.

The thing with pain scales though, they are supposed to be about the bodies reaction to pain. A pain scale is supposed to be about how to appropriately treat a patient. So if a person is a 10 from something you'd be a 6, their pain still needs to be treated in accordance to how it feels for the patient (in a perfect world). Your 5 may be another person's 9 but that's beyond the point. 10 is still the peak for the worst pain possible you can handle. Pain where you black out and can't speak. Where you go into shock. Where you can't do anything but lay there locked in agony. That is the peak for anyone period because that's where the body taps out. There shouldn't be extra numbers for chronic pain patients or anything. It defeats the purpose of pain scales. A good pain scale is about physical reactions with the body.

No pain scale is perfect but doctors need some way to gauge how to treat a patient. This one is the one I prefer the most because it is about the body's physical reaction to pain and the treatment for it.

[eldritchbauble]

I'm tired of my problems being invalidated by older people who weren't disabled at my age. I'm tired of older people assuming that their life is by default so much harder than mine is because I'm (relatively) young. I'm not only chronically ill but multiply disabled and I cope (lol) with this while working full time. I don't have it easier because I'm still "young." I've actually had it really fucking rough since always.

[sickly-tired]

What's even worse is that old people likely had way more years of health than we did. Being in pain when you are 15 is very different than being in pain when you're 80. You got a chance at having wild adventures, we never did; we were deprived of that.

[saxifraga-x-urbium]

https://twitter.com/vagina_museum/status/1628046312275935232

[saxifraga-x-urbium]

YEAH