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evanoxvt · 7 months ago

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Having chronic health is a full time job, and is often disabling.

Let's start with the most basic of concepts. A full time job is 8 hours a day, 5 days a week. AKA 40 hours. Chronic health SYMPTOMS are usually 6-7 days a week (because once in a blue moon we get ONE EXCEPTIONALLY GOOD DAY), and are often EVERY WAKING MOMENT, and possibly every sleeping moment too. Sometimes we get a few hour break from our symptoms, but they are generally 24/7.

That in an of itself is far more than a full time job. And we don't get paid for it.

Then you have all the doctor appointments. These take long periods of time, and cost you money. That's a triple negative on your time sheet, you got energy spent on health symptoms, the doctor appointment, AND loosing money you aren't able to make.

So now where do we add in the time for all the little life necessities? It often takes disabled folks much more physical energy and more time to do things like shower or brush teeth because we can get injured and/or fatigued from things like this which normal people do not. Cooking is another time consuming and energy draining task. The amount of time I loose from spending 5 mins cooking instant ramen makes it really not worth it. There's a reason many of us go without food for long periods of time if we do not have a support person doing basic life things for us or with us to ease the burden.

NOW imagine how much MORE energy it takes to do chores, like washing your dishes or laundry. I'm not even talking general cleaning, just the bare necessities here.

Somewhere in there you need the energy to ACTUALLY EAT the food you or someone else made.

If you haven't caught on to the massive amount of energy it takes for us to do these things yet, you probably need to go learn about it elsewhere because I'd like to get to the next portion of this.

We often face medical gaslighting from doctors, and general gaslighting from the rest of the world, especially people who know us well or absolute strangers. People who know you a LITTLE BIT are the most likely to not gaslight you in my experience.

This means for every SINGLE doctor appointment, we have to PROVE there is an issue before we even get to see the doctor.

My most current personal example is meeting my new PCP (of whom I will likely be changing AGAIN due to his fear of dogs and inadequate care related to my service dog being in the room with me). He did a basic physical, looked at my recent labs and test results, and then told me "You are healthy, I cannot find anything wrong with you." That is not acceptable as I was there after having ANOTHER doctor say the same shit when I am getting dizzy constantly, having clear cut tachycardia issues, and having signs of BP issues (debatable on the issues itself). These things, in addition to my medical history AND life-long experiences indicate I very likely have POTS.

POTS is Postural Orthostatic Tachycardia Syndrome. This is a autonomic dysfunction condition (falls under dysautonomia). I'm really not the best at explaining this condition, but common symptoms are: Dizziness, I believe both Orthostatic intolerance and orthostatic hypotension, obviously tachycardia (but I've heard you can have bradycardia as well, unsure on that one). POTS is considered a syndrome because it is a conglomeration or group of symptoms and cannot be diagnosed by a single type of test.

I have heard of several tests that can make it much easier to get diagnoses, but even then you may struggle to get diagnosed.

I personally have done an ECG/EKG, as well as a 24hr holter monitor (basically 24hr EKG), and a huge amount of blood tests. At home, I have done a number of tests (specific and random) of both my blood pressure AND my heartrate. This is how I found out that I have abnormal BP and HR.

There was an issue with the day I got the 24hr test done, as I became ill (from doing laundry) and had to lay down for the MAJORITY of the 24 hours. As a result they did not see the tachycardia in the way we needed it to be seen (aka I wasn't standing up enough to get the results to prove the tachycardia).

I have literal videos and pictures PROVING that I have tachycardia and what we believe to be orthostatic intolerance (but could be hypotension....we highly doubt that though). The doctors ignore it because I DID IT. They however will not do the STRICT testing required to prove it. They also won't refer me to the departments required to test these issues.

I was literally sent home with some "homework" by the nurse to get current vitals all weekend long and email them in to prove the issue and request a referral to the blood pressure clinic. Today I spent 40 mins doing this so far. It will actually take longer later today when I do it again because I need to start with laying down for an hour.

Generally you spend 20 mins to do this 'test', but I have to do the version that is comparable to a tilt table test, as my doctors have refused time and time again to give me the test to prove if I have or have not been passing out. Yep, you read that correctly. It turns out I very likely have been passing out for very brief amounts of time but have no way to confirm without tests LIKE a tilt table test.

I'm not the best at working quotes in so take a look at it then I will discuss more.

"Results showed that standing after being supine for 1 hour was at least as good as 10-minute tilt; longer tilts introduced excessive numbers of false positives. Standing HR and BP measurements were taken at 1, 3, 5, and 10 minutes. Thus, standing tests for POTS requires previous supine rest. In our hands, >20 minutes is needed to reach fluid equilibrium."

Reference:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3639459/

This means the original test I was told to do (which took 20 mins) is not as accurate as this one. In the one I've done, which has MORE THAN PROVEN the issue, you lay down for 10 minutes, not 1 hour, take your laying BP, stand and immediately take your BP, wait 2 mins, take BP, wait 3 more mins, take BP, and wait the last 5 minutes to take your BP. Aside from the laying down BP these are done AT minutes 1, 3, 5, and 10 OF STANDING. Overall this is a 20 minute test. While trying to use it in place of a tilt table test you need to add an hour instead of 10 minutes, so it comes out to be 70 mins total.

Now take this morning for example:

I was already laying down for far over an hour since I was awake but not getting up yet (technically I got up a few hours prior to use the restroom and take care of the dog, but I immediately laid back down and multiple hours passes). I took my BP, then did the 10 mins of standing and took those BP's, then did the same thing but while laying for another 10 mins, and finally changed HOW I WAS LAYING to my usual laying position and did 2 in that position, 1 after initially moving and the other after 10 minutes.

So for A SINGLE one of these I spent 40 minutes, and later will have to ADD an hour onto that, JUST SO I CAN PROVE the thing the doctors are ignoring.

Now tell me how spending several hours A DAY on doing 'homework' for your doctor ON TOP OF EVERYTHING ELSE is somehow not A FULL TIME JOB??? If you really thing it isn't you need to get off your high horse. Because this is real and a serious problem.

Disabled folks, like myself, are constantly being told we aren't doing enough or that we need to just try harder, or that we aren't worth it because we don't work, etc. BUT these people saying this cannot even begin to fathom what we go through on a daily basis or how much energy it would take them to simply do our 'homework' for the doctors. Literally, tell me you have a full time job that lets you take nearly 2 hour breaks on a frequent basis to check you BP or to test your heartrate, or to let you lay down and decompress (physically or mentally) or that lets you take frequent breaks for HOWEVER LONG YOU NEED, or that lets you call out sick FREQUENTLY, with anywhere from a decent notice to absolutely no notice, or even having to leave work early because you overestimated your capacity for the day.

Jobs like that DO NOT EXIST. They don't. There are small companies that may allow that, but that would be the one-off exception, and is certainly not easy to find. Jobs like streaming give you the flexibility for all of these accommodations and more, but does not provide you with medical, dental, or even a steady stable income.

So please for the love of all things good in this world, stop treating disabled people like we don't do enough. We shouldn't have to earn the right to EXISTING. We shouldn't have to PROVE that there is an issue to the people expected (and paid) to help us. We shouldn't have to beg for help because the rest of the world has turned their backs on us.

It's ridiculous. Absolutely ridiculous. Be kind. Be understanding. Lend your ear if you cannot do anything else. We work harder than you will hopefully ever have to know.

Thank you all so much for reading this far into my post!!! I don't really feel comfortable with promoting myself but I will use the mental excuse that its almost my birthday so "just do it already FFS".

There are a few ways you can support me, both with and without paying a single cent!

My first link is going to be my throne, where you can safely buy me gifts that are delivered directly to my door! You can get me most kinds of things, and I do sometimes update it to contain alot of fun stuff (especially around holidays). I can received several very helpful health related gifts, and love that my community has shown a desire for my health to be improved in any way possible. This is very heartwarming and really makes me feel seen, heard, and appreciated. You can find anything from streaming stuff, health stuff, dog stuff, and fun stuff on my throne so feel free to browse. I also have some payout items that go to my throne balance for me to spend on whatever I want in case you can't make up your mind.

The second link is my carrd link, which contains a bit more information about me, as well as EVERY POSSIBLE LINK you could want to find to support me. This is where the free support comes in. If you follow me on my socials, youtube, or twitch you will be able to interact with me. As we all know, the world of social media and content creation requires people to interact with you and your content. I will be posting to youtube again soon, but as of right now my most active places are discord (where you can get health updates, live notifications, and just chat and chill with me), twitch (where I stream), and Twitter/X (where I am currently most familiar with posting things).

I appreciate alot of the little things and am unfortunately not the best at expressing it....but I try, and that is kind of the most important part. Again, thank you for reading this far, it really means alot to me.

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supercantaloupe · 2 years ago

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it does suck really really hard that (intentionally or not) a person's health is so often conflated with that person's worth or moral character. as if it's a conscious choice or consequence to be unhealthy or have chronic conditions requiring treatment and not Literally Impossible To Control

#like sorry but you to not get to decide if one day you will become disabled.#you do not have any control over whether or not you will inherit health conditions from your family #or from random genetic or environmental factors #but if you get unlucky in that particular lottery it's bad enough how much you have to pay (in the us at least)#just to literally exist with any level of real comfort.#let alone with society's stigma against the 'unhealthy'#anyway. xoxo - a person with multiple chronic health condition and lots of irritation in her heart #sasha speaks

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allalrightagain · 2 years ago

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as much as I bitch about health stuff on here (and just, like, in general) I sometimes forget that what I live through isn't necessarily a common amount of being sick/disabled

...right up until I fill out intake forms for a new doctor's office that very clearly expects the reason you're seeing them to be the only health condition you've ever had, and as a result of An Event.

"list any health conditions" followed by "fill in the accident date and whether you're covered by workers comp" buddy I wish my eyes were broken because my work fucked up. they just come this way.

#chronic health tag #I am finally getting around to making this friggin appointment #I've put off for almost six months #because there's no one else who will treat this issue within 50 miles #and literally nobody covered by my current or my last insurance #kept waiting for a miracle to occur but. it is what it is #LT talks #there are people who don't need multiple specialist appointments per year?#and who fill out intake forms without spending 20 minutes on the medications and preexisting conditions?#sounds fake #also I went through my expired meds to dispose of them this morning and oh my god I spend so much #on meds I don't/can't/shouldn't finish

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drdemonprince · 3 months ago

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The data does not support the assumption that all burned out people can “recover.” And when we fully appreciate what burnout signals in the body, and where it comes from on a social, economic, and psychological level, it should become clear to us that there’s nothing beneficial in returning to an unsustainable status quo.

The term “burned out” is sometimes used to simply mean “stressed” or “tired,” and many organizations benefit from framing the condition in such light terms. Short-term, casual burnout (like you might get after one particularly stressful work deadline, or following final exams) has a positive prognosis: within three months of enjoying a reduced workload and increased time for rest and leisure, 80% of mildly burned-out workers are able to make a full return to their jobs.

But there’s a lot of unanswered questions lurking behind this happy statistic. For instance, how many workers in this economy actually have the ability to take three months off work to focus on burnout recovery? What happens if a mildly burnt-out person does not get that rest, and has to keep toiling away as more deadlines pile up? And what is the point of returning to work if the job is going to remain as grueling and uncontrollable as it was when it first burned the worker out?

Burnout that is not treated swiftly can become far more severe. Clinical psychologist and burnout expert Arno van Dam writes that when left unattended (or forcibly pushed through), mild burnout can metastasize into clinical burnout, which the International Classification of Diseases defines as feelings of energy depletion, increased mental distance, and a reduced sense of personal agency. Clinically burned-out people are not only tired, they also feel detached from other people and no longer in control of their lives, in other words.

Unfortunately, clinical burnout has quite a dismal trajectory. Multiple studies by van Dam and others have found that clinical burnout sufferers may require a year or more of rest following treatment before they can feel better, and that some of burnout’s lingering effects don’t go away easily, if at all.

In one study conducted by Anita Eskildsen, for example, burnout sufferers continued to show memory and processing speed declines one year after burnout. Their cognitive processing skills improved slightly since seeking treatment, but the experience of having been burnt out had still left them operating significantly below their non-burned-out peers or their prior self, with no signs of bouncing back.

It took two years for subjects in one of van Dam’s studies to return to “normal” levels of involvement and competence at work. following an incident of clinical burnout. However, even after a multi-year recovery period they still performed worse than the non-burned-out control group on a cognitive task designed to test their planning and preparation abilities. Though they no longer qualified as clinically burned out, former burnout sufferers still reported greater exhaustion, fatigue, depression, and distress than controls.

In his review of the scientific literature, van Dam reports that anywhere from 25% to 50% of clinical burnout sufferers do not make a full recovery even four years after their illness. Studies generally find that burnout sufferers make most of their mental and physical health gains in the first year after treatment, but continue to underperform on neuropsychological tests for many years afterward, compared to control subjects who were never burned out.

People who have experienced burnout report worse memories, slower reaction times, less attentiveness, lower motivation, greater exhaustion, reduced work capability, and more negative health symptoms, long after their period of overwork has stopped. It’s as if burnout sufferers have fallen off their previous life trajectory, and cannot ever climb fully back up.

And that’s just among the people who receive some kind of treatment for their burnout and have the opportunity to rest. I found one study that followed burned-out teachers for seven years and reported over 14% of them remained highly burnt-out the entire time. These teachers continued feeling depersonalized, emotionally drained, ineffective, dizzy, sick to their stomachs, and desperate to leave their jobs for the better part of a decade. But they kept working in spite of it (or more likely, from a lack of other options), lowering their odds of ever healing all the while.

Van Dam observes that clinical burnout patients tend to suffer from an excess of perseverance, rather than the opposite: “Patients with clinical burnout…report that they ignored stress symptoms for several years,” he writes. “Living a stressful life was a normal condition for them. Some were not even aware of the stressfulness of their lives, until they collapsed.”

Instead of seeking help for workplace problems or reducing their workload, as most people do, clinical burnout sufferers typically push themselves through unpleasant circumstances and avoid asking for help. They’re also less likely to give up when placed under frustrating circumstances, instead throttling the gas in hopes that their problems can be fixed with extra effort. They become hyperactive, unable to rest or enjoy holidays, their bodies wired to treat work as the solution to every problem. It is only after living at this unrelenting pace for years that they tumble into severe burnout.

Among both masked Autistics and overworked employees, the people most likely to reach catastrophic, body-breaking levels of burnout are the people most primed to ignore their own physical boundaries for as long as possible. Clinical burnout sufferers work far past the point that virtually anyone else would ask for help, take a break, or stop caring about their work.

And when viewed from this perspective, we can see burnout as the saving grace of the compulsive workaholic — and the path to liberation for the masked disabled person who has nearly killed themselves trying to pass as a diligent worker bee.

I wrote about the latest data on burnout "recovery," and the similarities and differences between Autistic burnout and conventional clinical burnout. The full piece is free to read or have narrated to you in the Substack app at drdevonprice.substack.com

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thecpdiary · 8 months ago

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Working with Multiple Health Conditions

Since my twin died 16 months ago, I am facing a complex set of mental health challenges, including tinnitus and insomnia brought about through the stress of losing my twin and having to live with facial pain from a swollen muscle for 10+ months, two months after she died. The trauma has been immense.

The addition of autism, anxiety and depression is make everyday tasks more challenging. Trying to make new situations fit that don't fit is making my health worse. I need to start making different decisions.

The loss of my twin

The loss of my twin and having to live my life without her, is further compounding these challenges, affecting my overall quality of life. My late diagnosis adds another layer of complexity, requiring me to continue to adjust to knowledge about my condition and continually reassessing past experiences. With no discussions or explanations around those issues, my mental challenges haven't gone away.

Navigating 'daily life'

With a mental disability, navigating daily life is particularly demanding. It is important to find understanding, support and acceptance, towards overcoming obstacles, despite the challenges we all face.

For more inspirational, life-changing blogs, please check out my site https://www.thecpdiary.com

#thecpdiary #blog #Multiple #Health #Conditions #Mentalhealth #MentalHealthAwareness #healthandwellbeing

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takeyourdailydoseofcyanide · 1 month ago

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they were already incredibly suspicious to me, every last one of those supposed “professionals.” i think I’m more suspicious than I ever was now - somehow that was possible. I’m even more apprehensive, perhaps even fearful.

solidarity between people who want to take psychiatric meds to function and those who don’t.

What’s important is that we both have autonomy, informed consent and safe access to treatments we want, and to not be forced, coerced or pressured into those we don’t.

#yes yes yes #I feel so trapped right now - it seems I might be able to cancel the appointment and hopefully take nothing but if I’m unable to I think-#-that will be my final straw #horrifying for me. interacting with psychiatry at the age the body is at is traumatizing - traumatizing at any age though perhaps I’m being #-dramatic. I don’t think so though.#my experiences have been less than decent so far - for the most part #plus they tended to want me on medication out of simple stigmatized lenses #they were more concerned about the fact that I even experienced something such as supposed hallucinations (GASP) than my actual experiences #it’s difficult to word but I’ll speak more and hopefully organize my thoughts in a later post #psychiatry isn’t here to help it’s here to put everyone in a single file line - they mentioned me not being normal enough essentially #I’ll elduicate more in a later post #but I was forced and am being forced with the looming threat of long term hospitalization though I will hopefully be able to get out of it #that threat is now always hanging over my head #they forced me and it ended up fucking with a health condition I already have along with general side effects #the courts almost got involved while the impostor was trying to get me out of there because they didn’t want to release me #despite it being an unhelpful place just like every mental hospital. I feel even more ‘unsafe’ as they call it and tempted to run now.#I don’t trust the medicine I’m afraid of it and having threats held over my head it all felt sort of like mind rape - to be dramatic again #it doesn’t matter how much I express how afraid of them I am they don’t understand and I have other reasons besides my suspicion as to why #-I don’t wish to take them. the fact that the body can’t tolerate them for example. not wanting to be forced. the forcing makes me panic.#it’s mind rape. not to mention even despite the inability to tolerate he still wanted to try an antipsychotic down the line - which is not #going to happen. no medicine. I’m not trying anything. I’d be more open if there weren’t threats over my head and I weren’t being forced #but I don’t want any at all. I have my reasons - they want me to take it for medically induced suicide purposes as well - what I mentioned #earlier/ not being normal enough for their standards and being how they even on a subconscious level view me as a dirty schizo #who needs to be fixed so I don’t want them for that as well #I haven’t rambled about it much yet until now but it feels like mind rape to me even if that’s dramatic I don’t generally experience the #instinct to cry and still I cried multiple different times over this shit over being forcefully kept in a bad facility that wouldn’t even #give me my physical meds and did nothing for health conditions so the body dehydrated horribly and shit and some of the staff were pretty #rude too it was just a bad experience not as bad as lobotomy I know but I couldn’t stand it and being forced the threats all the threats #made sure to try and keep myself in check for that reason but the threats of long term if I wasn’t compliant enough I don’t want to be sent #away I want to be left alone I want freedom I want a break I want a hug (?) I want to be away from all impostors I want to disappear

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mindblowingscience · 10 months ago

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In 2016, years before long COVID was a thing, the US National Institutes of Health, the largest single public funder of medical research in the world, launched a study into a long-neglected and puzzling condition: chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis, or ME/CFS. Eight years later, the results of that study are finally out. In one of the most thorough investigations to date, researchers took a deep dive into a small group of 17 people who developed ME/CFS after an infection and found distinct biological differences compared to 21 healthy controls. "Overall, what we show is that ME/CFS is unambiguously biological, with multiple organ systems affected," neurologist Avindra Nath, lead researcher of the study and clinical director of NIH's National Institute of Neurological Disorders and Stroke (NINDS), said in an interview with JAMA. For decades, many doctors had dismissed ME/CFS as a psychosomatic condition that was 'all in patients' heads'. Now there is little doubt: a host of biological changes underpin ME/CFS.

#Science #chronic fatigue #chronic fatigue syndrome #myalgic encephalomyelitis #stem #biology #medicine

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suad-khaled · 2 months ago

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Can you imagine being stripped of safety at the happiest moment of your life? I’m Suad, a young mother from Gaza, where I gave birth to my son Khaled amidst the chaos of w@r.

When I first heard his cries, I felt indescribable joy, but soon I was overwhelmed with fear. How would I protect him from the hor/rors surrounding us? Each day presents a new challenge from food and water shortages to a lack of medical care.

My family and I have faced repeated displ@cements, searching for a safe haven away from the bomb@rdments. I struggle daily to provide Khaled with his basic needs while our health deteriorates under these harsh conditions.

I urgently need your support to secure shelter and medical care for Khaled. You can be part of our story, as every bit of help makes a real difference.

If you can share my story or offer support, I would be forever grateful. Hope exists, but we need you to help us achieve it. Thank you for your understanding and big hearts.

Please share my story; it might reach someone who can offer support. If you’re unable to donate, sharing my story would mean so much. You can spread the link across your social media and reblog my pinned post. Additionally, sharing my account can help others follow our updates and support us.

I’ve been verified by Nabulsi, El-Shab Hussien, and NorthGazaUpdate, 90-ghost, and I’m listed on the vetted list on 279 line.

- Our story began with the birth of my son Khaled amid difficult circumstances; the joy was tinged with fear due to the surrounding situation. Link1 Link2 Link3

- Khaled fell seriously ill, and we had to take him to the hospital. These moments were filled with tension due to the lack of medical services and difficulty accessing them. Link1 Link2

-We experienced multiple displacements due to the surrounding dangers, facing daily threats to our lives and being forced to keep moving. Link1

-Khaled's health deteriorated significantly, and he required daily nebulization sessions to alleviate his condition, but power outages prevented us from providing the necessary treatment. Link1

-With the deteriorating conditions, we are suffering from significant financial pressures due to rising prices and a lack of resources, making it exhausting to meet our basic needs. Link1

I have come to realize that I can’t face these conditions alone. Every bit of support, whether through sharing my story or posting these updates, means so much to my family and me. I kindly ask you to help spread my story, as everyone who reads it may be a bridge to the support we desperately need.

Thank you for your understanding and your big hearts

@mushroomjar @heph @daily-spooky @blu-berry-blast @blu-berriez

@neptunerings @neatleaf @fancysmudges @brokenbackmountain @mothblyatebanaya

@aleciosun @fluoresensitivearchived @khizuo @lesbia @transmutationdice

@schooloutfitideas @schoolhater98 @timogsilangan @buttercuparry @sayruq

@malcriada @akajustmerry @sar-soor @palestinegenocide @feluka

@tortiefrancis @flower-tea-fairies @riding-with-the-wild-hunt @tsaricides @visenyasdragon

@kordeliiius @belleandwhistle @belleandsaintsebastian @raelyn-dreams

@ear-motif @troythecatfish @theropoda @4ft10tvlandfangirl @queerstudiesnatural

@skatezophrenic @baby-girl-aaron-dessner @awetistic-things @sygourie @junglejim4322

@junglejim4233 @heritageposts @chososhairbuns @daily-spooky

@imjustheretotrytohelp

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