chronic health stuff @blog-from-bed - Tumblr Blog

Hello, this is a draft of my pinned post. When I have the energy I will edit it and add more information about this blog.

This is a side blog I have made to post about my chronic health experiences, and connect to other people and talk. I post about mental health and adhd too. I will also reblog people's posts!

My main is @strangegreen where I reblog nature related images and videos, that blog is where I follow and like from. My main side that I use for the usual tumblr fare is @parakeetpark

If you follow from one of my other blogs and stumbled across this blog: you are welcome to interact and follow here too if you'd like! I meant in my description that I want this to be a separate space in terms of my own posting, not separate from people from my other blogs :-)

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Visual input can be difficult. So, I'm going to tag any pictures on this blog with #image in case anyone wants to filter them out. But, this blog will be almost entirely text posts.

#pinned intro

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Ugh post migraine nausea and brain soreness and fatigue

#ugh #it was only a short one but ugh #Migraine #my head hurts #and another day has rolled by unable to get anything done #but I'm still kicking and it'll pass - supposed to get cooler in a week #ugh it aches

unholyminty

Happy disability pride to all of you. To the "annoying" or "stubborn" ones, to all of you who are struggling to come to terms with being disabled, to those who aren't quite sure what it means yet, to those who are a "problem", to those who go out of their way to not be, to those who have themselves figured out, to those unable to speak up for themselves, to those able to, to those who are undiagnosed, to those who are fighting to be taken seriously, to those who are learning to advocate, to those we lost, to those I haven't mentioned. You're valid. You deserve to be here. We all do. Let's have a good one

-🎶

#reblog

chronicallyinvisible

friendly reminder that life with a chronic illness is really, really hard and can cause even the most trivial of tasks to become gargantuan. you’re not imagining it. never let anyone tell you otherwise

#reblog

blog-from-bed

It's incredibly hot again, 33°C here. I had felt my thoughts were soupy and slow, but didn't connect why until now. I forget this high temperature really affects me, it seems it does even when I'm managing to keep cool well like today! I've posted before mentioning how when I'm already in brainfog I can easily miss things 🤔

I might make a note for future: temperature above 30°C = brace for brainfog!

blog-from-bed

Aha! Today I was ready!

I knew brainfog would come and made sure not to plan anything. I set aside the time, reminding myself that it's okay to be foggy headed. It seems it starts around the same time, when temperatures get near the highest here. I find it can be easier when I know what to expect with symptoms.

#reblog with comment / own post reblog #thoughts are... slower still - but much better than earlier! it's weird how summer high heat affects your ability to think...#i genuinely might be able to nap i feel exhausted just writing this up for the last ten minutes. i slept bad again. oohhh I'm rambling too #okay perhaps Nap Attempt time hahaha #i deleted the rambling because it was just me thinking aloud really :') maybe still foggier than it feels like!

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stella-and-the-pinks

if you're disabled and/or chronically ill, i cannot stress enough how much you deserve friendship.

if your conditions make it hard for you to follow through with plans, you deserve friendship anyways.

if you use equipment like mobility aids, aac, ventilators and oxygen, feeding tubes, insulin pumps, etc, you deserve friendship anyways.

if your conditions make you have to cancel last minute a lot, you deserve friendship anyways. if your conditions make you have to leave early a lot, you deserve friendship anyways.

if you're housebound/bedbound, you deserve friendship anyways.

if you need caregiver support to hang out with friends, you deserve friendship anyways AND you deserve the caregiver support you need to enjoy time with them.

if you have a service dog, you deserve friendship anyways.

if your conditions cause "scary" medical episodes like seizures, fainting, meltdowns and shutdowns, etc, you deserve friendship anyways.

if you're disabled and/or chronically ill, i cannot stress enough how much you deserve friendship.

#reblog

It's incredibly hot again, 33°C here. I had felt my thoughts were soupy and slow, but didn't connect why until now. I forget this high temperature really affects me, it seems it does even when I'm managing to keep cool well like today! I've posted before mentioning how when I'm already in brainfog I can easily miss things 🤔

I might make a note for future: temperature above 30°C = brace for brainfog!

#I've lost uhh many hours of the day #I'm not sure what I've been doing actually? i remember browsing a chef's blog a while... but that can't have been for many hours?#kind of disconcerting #i don't think I've been asleep either #this happened last heatwave. lost time that is 🤔#this technically isn't an official heatwave but it's still above usual temperatures #brainfog #chronic illness #chronically ill #chronic fatigue #chronic health issues #I'm going to tag it even though it's not Technically one:#heatwave #because it's about excessive heat and i want to find my posts about this topic

Slept so bad last night that I'm genuinely sleepy 5 hours earlier than I usually sleep haha. Might try to sleep earlier than normal, but sleep can be so elusive even when you're exhausted, well for me that is!

#sleep #Might start a sleep tag so i can keep remember easier #i only got about 5 hours of sleep yesterday and I'm so tired

wizzardhat

Chronic pain is like: I'm in pain. "Well, you really shouldn't let that stop you from doing things." Ok, I guess I'll keep doing this even though I'm in pain. "Well, if the pain was really that bad, then it would stop you from doing things, so it's probably not that bad." Actually, it got worse because I kept doing things. "Well, why would you overdo it and hurt yourself? You should know your limits." Ok, fine. I know my limit, and I have reached it. I need to rest. "Okay, but last week you did all this other stuff, so I know you CAN do more, so I think you're just making excuses?" Ok.

#oh yeah i hate this #people don't accept that you can be in excruciating pain and still Force yourself to do things. and that doesn't mean we ought to do that #and is a very bad thing to do. just because something is technically possible doesn't mean is okay #reblog

chronicallynova

Being chronically ill can vary in so many different ways, but the one consensus I typically see is that we're all being held together by duct tape and spite.

#reblog #there's some pva glue in the mixture for me too that keeps coming away easily

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I'm considering doing one of those activities where you try write down each day either one nice thing that happened, or a nice thought, something you're grateful for etc.

But, some days my chronic health stuff will cause barriers e.g. can't hold a pen and write, or too lightheaded. And adhd makes forming habits impossible, so I want to be careful e.g. if i keep forgetting to do it I will feel sad and guilty so it won't be an enjoyable thing.

I have some ideas that could make it flexible and easier for me. I don't want to rush into it with rigid expectations. So I'm taking my time musing on how to go about it! I think it could be good for me, a mindful activity letting me focus on good things more often.

#chronic illness #chronically ill #chronic health issues #adhd #today involved two stressful phone calls! i got a headache after. so i know i need to rest and pace. thinking about this idea for a bit has #been fun and relaxing! so i wanted to share my musings and idea! now i will rest my eyes a bit so i have energy to socialise later :-)

fading-constellation

happy disability pride month to those who rely on support from people who don't want to deal with them. to those who have to beg their loved ones for support. to those who have had others get tired of them and suddenly drop all support. to those who are barely hanging on because they need support from others and no one is willing to help them.

i hope we all get the help we need. i hope we'll all be okay. i love you.

#reblog

calvinonwheels

it is okay to have a high amount of screen time, ESPECIALLY if you are disabled and homebound/bedbound.

It is not morally wrong to try to stay connected with the outside world, do not listen to the opinions of able bodied people who could not fathom your reality.

#reblog #there are lots of nice things i can do on my phone #and lots of ways to connect with the outside world i wouldn't have at all otherwise!#the only things i concern myself is if I'm having negative effects of being on phone too much - but remind myself why i do spend a lot of #time on it and don't beat myself up!

Urgh I hate phone calls!

I suddenly remembered I was supposed to make a call by tomorrow to check something. Catapulted into action mode and rang. It's sorted now and people will ring me back sometime soon or maybe today.

But, adhd does not pair well with phone calls for so many reasons. Still have the residual anxiety from panicking, fear of missing the call, and the horrible adhd 'waiting' feeling 😖

#i had been resting because i had felt signs of a migraine coming. so i was attempting to nap when i remembered out of nowhere!#now I'm too keyed up to try sleep again but uhh my head has stopped hurting 😅#adhd #i hate when i find out i forgot something- i hadn't put it in my to do list! that is the cause of this!

krisrisk

@blog-from-bed i just came across this image and thought maybe you (and anyone else who has issues being vertical instead of horizontal) should know that this exists:

ID: advertising for a "Folding Shampoo Bowl" with a photo of a person lying on their side, their head resting on a small headrest in the middle of a foldable tub and someone washing their hair. /End ID]

blog-from-bed

Oh my gosh I've recently been thinking about the hair problem again! I was considering just shaving it off again. I'll definitely be looking into this because I didn't know it existed. Thank you for sending this my way :D

#image #described #reblog #haircare

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My pulse finally seems to be slowing down! I'm relieved! Not back to my normal levels, but I can feel the difference today and other symptoms like pain are better. Hoping the energy I feel continues so I can do some tasks, but aware I need to take it slowly and not get ahead of myself with my good mood.

Also, my cat came to visit and spent some time with me. I had enough energy and strength to play with her using a string toy, and gave her half a liquid tube treat after. It made me happy :-)

#yay!#i have had a handful of hard days and i didn't recognise how hard. now i have more energy i can feel the difference #it's hard to see the full picture when you're in the middle of it 🤔. i knew i felt bad but... didn't reocgnise how impaired i have been #i kept thinking “gosh i don't feel motivated to do anything. i can't get myself to do things” - without awareness my concentration and #ability to think was really being impacted by flare-up! might need to make a note of this because i was too affected to notice it once again #ah well. one thing at a time. at least i can tell now! I'm doing my best :-) and it's not always clear what is happening with health stuff #chronic illness #chronically ill #chronic fatigue #chronic health issues

jvlianbashir

this is me being grumpy in the summer heat but i think that access to shade is an accessibility/walkability/quality of life issue and i'm so serious about that

#walking in the heat and sun was a big issue for me when i was still out and about #overheating and being in the sun can cause so many issues #reblog

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