#chronic health conditions | Explore Tumblr Posts and Blogs

esotericalqueer · 2 months

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no need to credit, just don’t claim my work as your own!

you deserve to exist without shame. you may have limitations and that is ok; you do not exist to motivate those with healthy, functioning bodies. navigating a society that was not made with you in mind is difficult, you are doing amazing! do what is best for you; don’t try to keep up with unrealistic expectations. take care of yourself, you are worth the effort <2

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animanightmate · 1 year

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High five to everyone else who only knows what day of the week it is because of the next pill organiser in the set.

#betwixtmas #holidays #chronic illness #chronic health conditions #medication #time is soup #adhd #executive dysfunction

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negus-so-nefarious · 4 months

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🎆Happy New Year’s🎇

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18thcenturythirsttrap · 2 months

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'[Kendall] took aim at what she described as “Tory claims about being tough on benefits”, and said that over the next five years there would be 600,000 more people on incapacity and disability benefits, costing an extra £33bn.'

Didn't realise the job of a Labour opposition was to try and out-cunt the Tory cunts in power, but here we are.

#fuck labour #benefits #welfare #disability #chronic health conditions #tw ableism #uk politics #labour party

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jmtorres · 10 months

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The Fig (Food Is Good) app, an app that helps you check whether foods meet your dietary restrictions and/or allergies, just added a feature I requested: you can now create multiple profiles for friends/family members to help when you're shopping for a group meal!

A vegan, a celiac, and an IBS-sufferer walk into a bar,,,,

(this new feature is a paid feature, but if you haven't played with Fig before I recommend downloading it and playing around with the profile customization for single/free user, because really extensive customization is possible! and if you like it and you know a bunch of people you eat with who have with food restrictions, consider the subscription for the multiprofile option.)

This app is actively being developed! see also I requested this feature and it came to pass! also if you can't afford the subscription but it would be useful to you, there's a button in the sign up process to request financial aid, which i think is pretty punk rock of them

#food #food allergies #dietary restrictions #low fodmap #chronic health conditions

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batwynn · 1 year

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Hey @staff can you please take into consideration that approval of extremely flashy advertisements can cause serious health problems in some of your users? No one should be forced to pay money just to not have a seizure while scrolling through Tumblr.

#just saw the most flashy ad #extreme flashing lights and flickering #it also went on for over a minute #tumblr #tumblr staff #disability #chronic health conditions

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prismaticstarshch · 17 days

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people who have multiple chronic conditions (physical, mental, or both): what's life like?

For me, I live a normal life with:

Cryptogenic (unknown seizure trigger) epilepsy

Grave's disease (a thyroid condition that causes hyperthyroidism)

Pollen allergies

Possible high-functioning autism (I currently have yet to see whether or not I actually have it, but I do experience things that could go along with it, such as poor eye contact, missing social cues, difficulty interpreting tone, stimming, insistence on routine, sensory stuff (I have sensitivities in all 5 of the senses, and have aversions to some things related to them), general awkwardness, anxiety, etc.; on top of that, epilepsy and autism can co-occur)

#chronic health conditions #epilepsy #graves disease #pollen allergies #possible autism

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jiaade · 7 months

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October is Dysautonomia awareness month.

Dysautonomia is an umbrella term (for multiple medical conditions) that can cause malfunctioning in someone’s autonomic nervous system.

The autonomic nervous system is responsible for a multitude of bodily functions, such as the regulation of blood pressure, heart rate, digestion, temperature control, etc.

I want to make one thing very clear: dysautonomia is not rare. It is very common and massively under-diagnosed. There is no cure for dysautonomia and managing symptoms is the focus of treatment.

Dysautonomia Resources

*My favorite book about dysautonomia:

•The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients by Freeman, Kelly, et al.

*Websites:

•The Dysautonomia Project: https://thedysautonomiaproject.org/

•Dysautonomia International: http://www.dysautonomiainternational.org/index.php

#chronic illness #dysautonomia #dysautonomia awareness #chronic health conditions #chronic illness awareness #potsawareness #postural orthostatic tachycardia syndrome #neurocardiogenic syncope #familial dysautonomia #multiple system atrophy #pure automomic failure

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trixree · 10 months

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Hey i just visited your blog after binge reading several of your star wars fics and saw you've got POTS + assorted chronic medical fuckery. My spouse has the unholy trinity of POTS/EDS/MCAS (featuring guest artist Migraines) and boy do i feel for you if your combo is even a little bit similar. Crossing my fingers for you that the neurologist is a good fit! They tend to have their shit together when it comes to dysautonomia (and hopefully know a lot of the good med combos). I'll also put in a recommendation for electrolyte drinks -- i think it's not uncommon for ppl with POTS to have electrolyte/salt deficiencies, and i know it's been helpful for my spouse to chug 20-30 oz of propel or re-lyte water every day. Compression garments (esp. tights) have also been helpful for POTS, but not always great for digestion if they go over the stomach. Medical grade compression starts at 20-30 mmHg.

For appetite stuff, since I'm not sure what the underlying cause is for you idk if this will be helpful/applicable, but when it's hard to convince your body to eat I'm generally in favor of just going for anything that sounds appetizing to you even if it means eating ice cream 3x a day :P if it's a nausea thing, though, spouse may have some better recommendations, and I'd be happy to ask or send you their way. Best wishes and take care!

Per my last post, I'm catching up on old Asks, AO3 comments, and messages received during my hiatus! (Psst, go do my Fanfic Poll) This is so so so sweet of you, thank you SO MUCH! I rambled on quite a lot below the cut about my health journey the past year re: POTS and GI stuff, in case folks are interested in how I've managed. Disclaimer that I am NOT a medical professional and this is absolutely not medical advice, these are just my experiences and things that have worked well for me.

First off, what a DELICIOUSLY FAMILIAR COMBO of things! I was told at my last immunology appointment that I "almost certainly" (his words, not mine) have EDS (my mom has it, too, and my hips are constantly popping out of place) but 1.) I can't afford to go get diagnosed (see: unemployment, medical trauma) and 2.) one of my friends has been stalled for MONTHS trying to get a clinical geneticist to confirm her EDS diagnosis because, apparently, there is a great deal of resistance to testing folks for EDS right now given the increased visbility of EDS patients on TikTok. My partner is in med school and we've had really long conversations about the so-called "TikTok Triad" (POTS, EDS, and gastroparesis - which are all conditions that are acutally linked together with the clinical data we have) and how it's impacting both how physicians practice and the care that patients receive. This reddit thread is a good example of how this plays out, if you feel like braving reddit on this fine afternoon.

My neurologist is amazing and has done a lot to help me with my migraines... unfortunately the GI stuff is still kicking my ass. All of your recommendations are things that I've started doing over the last year to manage symptoms: my compression socks are my BESTEST FRIENDS and Drip Drop is my favorite electrolyte powder - they've got the best flavors imo and isn't as PAINFULLY SWEET as Liquid IV. I've also adopted a really high-salt diet. As far as appetite goes, my management strategy has been to smoke a lot of weed (I live somewhere where recreational use is thankfully legal, so it isn't difficult or unsafe to get ahold of it) but that's unfortunately expensive and can actually make persistent nausea and appetite loss WORSE over time (see canabis hyperemesis) so I've recently gone cold-turkey off of pot to see if I can manage the daily nausea and appetite loss with pharmaceuticals alone (namely phenergan). I'm seeing my GI in the next week and I'm going to lobby my ass off for a prescription appetite stimulant. I've lost a lot of weight in the last year (and I was already pretty small to begin with, so the weight loss has made my chronic pain a lot worse unfortunately) and I am a firm believer in following one's cravings in order to eat. I order a lot of take out and cycle through the same "safe" foods (usually some kind of cereal with soy milk, an Ensure protein shake if solids are an absolute no-go, and simple rice, potateos, and chicken works). The other night, my partner tried to entice me to eat an oreo ice cream sandwich during a bout of brutal nausea and I cried because I fucking love oreo ice cream but my body HATES having things inside of it <3 I've also found that excercise can SOMETIMES (not all of the time) help my appetite. I have a stationary bike and a basic set of weights at home. Stationary bike in particular is something I'd HUGELY recommend for anybody with POTS that deals with excercise intollerance. Sitting down to get my cardio is WAY BETTER than anything else I've tried in terms of how badly my symptoms get triggered. I'm also currently medicated for my POTS (I take ivabradine and it's made a big difference for my quality of life on the whole, especially with regards to the fatigue that having a constantly elevated heartrate will generate.)

I do appear to have some sort of motility problem (most likely IBS-C) and I'm taking medication for it that has HELPED, but not nearly enough. I poop more than once every twelve days now, which is awesome, but I'm still constantly nauseous more often than not (Zofran, Dramamine, and Phenergen are my bestest friends) and my appetite is nowhere to be found. Hopefully I can get my hands on some appetite stimulant. As for the nausea, I've been informed by my electro cardiologist that many, many POTS patients report diminished appetites and chronic, debilitating nausea, but that "the mechanism relating the two is unexplored and largely unknown." So basically he said, "that sounds ROUGH buddy. Good luck though!"

(Hence me sharing my strategies cause I know, colloquially, that lots of us are dealing with this.)

#trixree speaks #health stuff #POTS #EDS #chronic health conditions #disability tag #asked & answered

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a-welsh-spoonie · 3 months

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It's taken me a few days to accept it, but I am in the first fatigue flare of 2024

#chronic illness #spoonie #ehlers danlos syndrome #ehlers danlos #chronic pain #chronic fatigue #disability #joint pain #chronic health tag #chronic health problems #chronic health issues #chronic health conditions

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esotericalqueer · 1 month

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no need to credit, just don’t claim my work as you’re own!

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hexen-cosplay · 1 year

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Health Problems & Cosplay

I mentioned in a previous post that I am a cosplayer with health conditions, and in this post I’m going to talk about them a little bit! Now, you may have noticed that I said ‘them’, and that’s because I have collected quite a few of them over the years and here they are:

🖤 TYPE 1 DIABETES 🖤

The pancreas stops producing the hormone insulin, and as such to keep blood glucose levels from rising and causing a fatal complication known as Diabetic Ketoacidosis, T1 Diabetics must take insulin every single day to stay alive.

🖤 GASTROPARESIS 🖤

Gastro = “stomach”. Paresis = “partial paralysis”.

The basics of this disease, is that food does not pass through my stomach at the speed it should. It goes a lot slower, and this causes a multitude of often debilitating symptoms, including: intense bloating, not being able to eat enough food resulting in deficiencies and malnutrition, extreme stomach pain, constant nausea, vomiting a lot (sometimes undigested food), constipation/diarrhoea, reflux, and more.

🖤 SINUS TACHYCARDIA/POTS 🖤

Sinus tachycardia is a regular cardiac rhythm in which the heart beats faster than normal. The PoTS is suspected due to experiencing black outs (which once resulted in two broken ribs), extreme dizziness, blurred vision, chest pain, shortness of breath and changes in blood pressure.

🖤 AUTONOMIC NEUROPATHY 🖤

Autonomic neuropathy occurs when there is damage to the nerves that control automatic body functions - the things we don’t think about every day, that happen automatically. It can affect blood pressure, temperature control, digestion, bladder function and even sexual function.

🖤 PROLIFERATIVE DIABETIC RETINOPATHY & MACULAR OEDEMA 🖤

This is the last and most serious stage of Diabetic Retinopathy. In the first two stages, the changes are reversible. In stage 3 new blood vessels and scar tissue have formed on your retina, which can cause significant bleeding (you can see the bleeds in your vision, which is distressing and causes impairment), and lead to retinal detachment, where the retina pulls away from the back of the eye. At this stage, there's a very high risk of blindness.

HEALTH PROBLEMS & COSPLAY

As you may have guessed, this is a lot! It’s a lot to deal with, I’m in pain all the time, and it makes me quite grumpy sometimes too.

My ongoing health struggles did play a part in the break I took from cosplaying, but that break turned into almost 9 years. It wound up that way because I convinced myself that I had to wait until I felt better to start again so that I could wholly dedicate myself to it. That was not a good mindset for me because I was still dealing with some denial over my health, despite knowing deep down that I would never "get better" in the way that I wanted to. My conditions are chronic. They're never going away.

I've come a long way in the 8 and a bit years since my last cosplay, though, and I'm not in denial anymore about my wellness. I take my medications, and I go to check-ups; I do the things that I need to do to make my life easier and ultimately, keep me alive. I know that sounds like a bare minimum, but it's not always that easy when your head is in a gnarly space, like mine was.

Alongside the.. peronal overhaul, I've employed a lot of new strategies in my day-to-day life that allow me to be myself and do the thing that I love, because I really do love cosplaying! By pacing myself, resting when I need to and not telling myself that needing it is failing, I'm kinder to myself - this kindness in place of self-deprecation for not being fast enough or as quick as another cosplayer has been the biggest turning point. I stopped comparing myself to people that didn't have to face what I do; I took a step back and took time to come to terms with the fact that I am different, and as such, I need to look at and do things differently, to suit my lifestyle and the things I have to content with. That took a lot of courage to do, despite it being a very introspective process, because facing yourself like that is hard. In my own mind, my differences made me lesser for many years, and it took actively challenging that perception within myself to realise that I was making my life harder, and denying myself happiness and fulfilment because of it.

Nowadays, I congratulate myself on progress because I am worth praise and worth happiness; I no longer view asking for help as a weakness or a failure, and I don't compare my progress to that of others. I acknowledge and accept that my conditions and disability exist, do not make me lesser, and require alternative means of doing things. Needing these accommodations and adaptations doesn't make me less as a person, or less worthy of love, happiness, praise and fulfilment than anyone else, not only in cosplay but life in general.

#cosplay #cosplayer #disabled cosplayer #hexen cosplay #diabetes #t1d #type 1 diabetes #t1 diabetes #chronic health problems #chronic health conditions #gastroparesis

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negus-so-nefarious · 1 month

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Sex is sometimes a chance for me to forget about my body pain. Horniness and disassociation. Go easy on me bruh…

#chronic health problems #chronic health conditions #chronic disability #chronic fatigue #chronic pain #chronically ill #chronic illness #the type to talk

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goodnessgraciousgal · 1 year

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My neighbors’ dog, whom I was dog sitting, decided to r-u-n-n-o-f-t on a walk with me today

Even with my health conditions,

I managed to run through a half-acre of thorns and prickles, and then a patch of woods

waived at an alligator and almost kicked a vulture

ran through !!!!!!3!!!!!! different apartment complexes in transcending order of sketchiness

and sweat half of my body weight without giving up

I finally caught the punk ass kid

I went home emotionally satisfied, but completely destroyed physically, even to this hour. So, I put on a favorite outfit and spun around.

It’s amazing what our bodies are capable of when we have no other option than to,

“Conquer At All Costs”

Ft. My Angel baby of a dog —Barney—

#personal rant #photo edit #resilient #dogs of tumblr #lowcountry #chronic health conditions #r u n n o f t #ootd #oh brother where art thou #alligator #king vulture #Conquer at all Costs #my edit

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dyslexic-dyspraxic · 7 months

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Whilst I like the idea of body neutrality, of learning to be okay with your body, and loving it not because of how it loves but what it can do, the fact that I mainly come across body neutrality being talked about by able-bodied people is an issue

Because I am all for accepting our bodies, the specific part of loving them for what they do for is not necessarily something I can always do

Like I saw a creator today who said they fell in love with their nose by accepting what it can do for them and I just can't relate because I have breathing issues from an issue with my nose, my nose is annoying

Which rather a minor thing but a lot of these creators emphasise the fact that we should love our bodies for what they do to us isn't always universal

As someone with minor physical abilities, I don't always love what my body can do, I have moments of euphoric joy at being able to move my body in ways that are more impressive for me but I also have moments of fuck this, I wish I could go for a run without tasting blood from my asthmatic lungs struggling to draw in enough air, without having to breathe through my mouth because of my partially bent septum, without my foot being in agony because I injured the tendon sheaths and they still haven't recovered, without getting frustrated about how my body isn't moving like it's supposed to because dyspraxia

When you are able bodied, the idea of loving your body for what it can do for you feels like the solution to the toxic positivity of loving how you look, but it can also feel like toxic positivity when you face physical disabilities and feel frustrated in how your body can't move

And I think it's just one of those things where we need more voices weighing in, talking about their diverse experiences in different bodies, and addressing the issues some groups face which others may never relate to

#body neutrality #disability #physically disabled #chronic health problems #chronic health conditions #chronic health issues #dyspraxic

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vizthedatum · 10 months

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Things are a little rough right now - I am still happy and thriving, but I'm worried about my job and the people I love. The divorce is imminent, and I don't know how I will be after/around that. I am deeply concerned that Jon will kill themselves - I have been worried about this for years. I love my friends and partners. My body is making recovery but I am reminded by it to treat it gently. I am really starting to understand my priorities more and more, as I navigate... everything. And... it is so painful to see and be aware.

When they sign the divorce decree, I need people to know that my relationship and my marriage to them was not a mistake on anyone's part. I loved them with all my heart. Being queer and poly had nothing to do with that. I have been learning and understanding my childhood and unhealthy codependency styles I learned... to survive in this life. I am learning about narcissistic personality disorder, and it is so real. It is so real. I am exceedingly upset and disappointed at my whole family tree, because I have been seeking answers since I was a child. I have been told to not worry about it or that I was naive. I will now trust in my curiosity for truth, in whatever form that may be.

Due to this, I've been unmasking. And I've been practicing not justifying myself or my behavior, if I believe that it does not harm you. I cannot tolerate reading between the lines in close connections anymore. I cannot tolerate your unreasonable demands of me, when everyone knows that I try my best given the circumstances. I know that I'm an exceptional person, and I can see that now.

Unmasking means that I've been going through series of skill regression and skill growth. It has been a challenge. I feel smarter and dumber all at the same time. Things I used to do, out of perfectionism and pressure.... are so hard for me now. I am still skilled in my crafts but in a different way.

I'm literally rewiring my brain from years of emotional and physical abuse, from others and from myself. Masking was survival for me. Unmasking is now life - it is what is going to make me happier and more successful. It is the only path forward.

This may mean that I might lose my job again, and I know it is not a moral failure. I am autistic, and I have PTSD... and I'm still healing, but we live in a capitalistic hellscape. But that means I will be financially unstable again in a life where I strived to not be that way - do I risk burnout and being ill again just to earn money? I'm already thinking about changing careers. I hate that I have the capacity to earn six figures or more with my education but that I have so many obstacles in my way.

I have had to cut out significant friendships and family members due to my "coming out as the real me." It's been heartbreaking to see that people don't like me when I have boundaries, when I assert my value, when I unmask, when I tell them how I truly feel, etc. The ableism and disregard for who I am and what I have to offer... did shake me a bit.

But now I don't care. Because the people who love me will stay. And they will respect me. And I won't accept anything less, even if I make mistakes along the way. (And I will)

And I will try my best to keep growing and owning up to how I treat people too.

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