#chronicillnessawareness

[totally-sick-blogger]

5 low energy activities for when you're feeling too unwell to get up but don't want to be on your phone.

Hi lovies!

I think that the title pretty much explains it. Still, I wanted to share 5 low-energy activities today because I know it can be really hard to find something to do when you're not feeling well but you've already been scrolling on your phone for hours. All of these are things that you can do from your bed, the couch, etc. and they are all very affordable!

Tip: If you're doing these in your bed (or somewhere else that doesn't have a good flat surface) you can use a cookie sheet/baking tray. If you don't already own a cookie sheet you can find them for really cheap at the dollar store or a second-hand store

colouring - this one is probably pretty obvious but I think it's a good one because it's pretty customizable. You can buy a colouring book from the dollar store or amazon or Walmart or wherever else. you could even find free printable colouring pages online. the same thing applies to markers/crayons etc. you probably already have some and if not you can get super cheap ones or super fancy ones.

2. crossword puzzles/word searches - I know these aren't for everyone but I love them and they're another thing that you can find paper copies of or online and you can buy a book of them or print them out yourself.

3. reading - This is another one that has lots of options for different price ranges and affordability. you can buy new books, or used books, borrow from a library, or do audiobooks or Ebooks instead. I know that some libraries have apps you can download with Ebooks and audiobooks that you can borrow as long as you have a library card.

4. bead crafts - I love making things with beads (particularly bracelets) because it's, easy, and requires no brain power. I'd also like to mention that if you have poor dexterity or fine motor skills (or want avoid eye strain) I recommend using pipe cleaners instead of string and using larger beads that are easier to pick up.

5. card games - If you have a friend, family member, or caregiver around you can play card games! they're fun, easy, you can do it laying down and there's tons of different games out there.

Bonus

6. This is bonus activity because it takes a bit more energy than the others but I always recommend finding a video essay or documentary on an interesting topic and taking notes and doing a deep dive on the subject!

that's all for today lovies, as always I hope this helps at least one person!

[chronically-ill-and-fabulous]

Pain: because apparently feeling bad in one place wasn’t enough. 🙃

0/10 experience. Would not repeat. Unfortunately, it’s a subscription service.

[maryannauger]

The vicious cycle of being so stressed you’re afraid it’ll cause a flare and being afraid of having a flare makes you even more anxious

[dmnsqrl]

Posted @withregram • @pacingpixie *Yes, everyone dies, but killing off Disabled characters is so common it's become a trope - for more information - https://tvtropes.org/pmwiki/pmwiki.php/Main/BuryYourDisabled It's a low bar, folks. - ID An Ableism Metric for Narrative Media If the answer is 'yes' to any of the following, the media is likely ableist. Does the Disabled character: 1. Die?* (Killing Eve, Inside I'm Dancing, Of Mice and Men, Survivors) 2. Want to die? (Me Before You, Million Dollar Baby, Glee, Night' Mother) 3. Live but primarily to inspire, evoke pity from or be 'saved' by other characters/the audience. (The Secret Garden, Christmas Carol, Fundamentals of Caring, The Miracle Worker) 4. Live but with a narrative based mostly on their disabilty and/or the negative effect it has on their life? (Come as You Are, Penguin Bloom, The Sessions) - #ableism #ableist #ableismistrash #disabilitypride #disabilityisnotinability #disablednotdead #disablednotless #disabledactress #accessibilityforall #thefutureisaccessible #chronicillness #chronicillnessawareness #disabilityjustice #spoonielife #spooniecommunity #unchargeables #inclusionrevolution #inclusion #accessislove #disabled #representationmatters #represent #wheelchairuser #nothingaboutuswithoutus #disabledandproud #disabilityisdiversity #disabilityadvocate #disabledandcute #chronicallyfabulous #disabilityawareness https://www.instagram.com/p/COdR2l2jf7Gtu1YZXYJ57TJujva-ancPHWPAV00/?igshid=ezjsbbk926w1

[twisted-trunk]

Pain is Relative

My friends and those who may still need to get the point, pain is relative. What hurts one person may not hurt another and vice versa. BUT they are still in pain and that should be respected; not this “I suffer with [insert condition] and I’m 90, man up,” or “oh, it can’t hurt that much,” or “when I was your age, I broke my ankle while hayin’ and I still finished, stop being lazy,” etc, etc, etc. That also goes for mental illnesses. Why shame us? What’s the point? I understand that the older generations may have been raised with a “toughen up” attitude, but that no longer flies; these are real people with real conditions who need help or an understanding of their limits.

I was mortified to learn that my family thought I was just lying and being lazy when I backed off of doing all these various things because I couldn’t identify what was wrong with me, and what and why I was feeling what I did. Still, even with a way to explain it, some still think I’m just lazy and/or lying.

The impact of not being believed or being brushed off by people close to you hurts on a level I can’t explain, and I’m sorry to anyone else who has gone through this; you deserve better.

4/5/21

To those suffering: I see you; I support you; I love you.

~Rosa ❤️

[chronicillnessplaybook]

What do you need to be your best?

What are your Hierarchy of Needs?⁣

Make sure to tag me in your responses - I’d love to see what makes up your pyramid to wellness!⁣

The original hierarchy of needs dealt with the universal human experience - what all humans need to be able to grow. Once your baser needs were met, you could progress up the pyramid to the next rung to achieve your “full potential.”⁣

But for those with chronic illnesses, our needs can be very different and are by no means universal.⁣

So if the top of the pyramid is you at your best (for me, my best is a functional human who can stand up), what are the steps that help you get there!⁣

For me, the base is always Sodium. Wherever. Whenever. I don’t succeed without my sodium!⁣

Then it’s Understanding. I need the people around me to understand what I’m going through. They don’t need to help, or get in the way. I just need that shorthand with them so I can take care of my needs in that moment. ⁣

That’s followed by Somewhere to sit! This is vital. I just need a place where I can sit or lean. I may not use it - I just need to know it’s there for my anxiety. ⁣

Once I’ve got those, it’s onto Compression Socks! Self explanatory!⁣

And finally, once all those pieces fit into place, I can start moving and start moving forward with my wellness by Exercising! ⁣

It’s very difficult to get to Exercising if those other needs aren’t met. I need that base to achieve some time to sweat some spoons out.⁣

[themadornithologist]

Today's damage report/debriefing: • Went to urgent care - both ears severely infected. • Went to Quest Labs - 5 doctor's orders, 25 blood tests, 3 blown veins. • Came home, briefed psychiatrist on rapidly failing mental health. • Three more days until chemotherapy. Ten days untill kidney surgery. • There is so, so much more. I am not okay. Please know this. 🩸 ⚔ #spoonie #bloodtestssuck #medicines #chronicillnesswarrior #chronicillnesses #chronicillness #chronicillnesslife #bloodtesting #sick #medicine #lab #spoonielife #bloodtest #chronicillnessawareness #spoonies #spoonieproblems #spooniestrong #bloodtests #bloodtest💉 #medicinewoman #chemotherapy #spoonieproblems #spooniewarrior #crohnsdisease #rheumatoidarthritis #raredisease #trigeminalneuralgia #kidneydiseasesucks #sickandtiredofbeingsickandtired #damagereport #bloody www.hannahcrazyhawk.com (at Quest Diagnostics) https://www.instagram.com/p/CLLH4FmFON6/?igshid=54hqdab4v4h6

[totally-sick-blogger]

Sustainability is rarely accessible

This post is dedicated to Audrey, hi king!

Like many people, I think sustainability and taking care of the environment is really important; however, something that I feel isn't talked about enough when discussing ways to be more sustainable is how it's often inaccessible to disabled people and low-income people.

A lot of "alternative products" aren't viable options for disabled people because of factors such as cost, how easy they are to acquire, or physical accessibility issues.

some examples include:

paper straws and wooden cutlery - I know that for me both of these products give me major sensory issues and as for wooden cutlery I'd also like to note that they're much more difficult to eat with which could cause problems for someone with poor dexterity or fine motor skills.

pre-packaged foods - a lot of disabled people rely on pre-packaged meals and snacks for all kinds of reasons such as sensory issues, having specific safe foods, fatigue, and physically being unable to prepare foods. etc. One example I see often is being told off for buying precut produce because why not "just cut it up themselves" when in reality, some people physically cannot cut it up themselves or don't have enough spoons to make that a priority; not to mention that frozen and pre-cut produce is often cheaper than fresh produce.

medical supplies - A lot the medical supplies that disabled people rely on every day are made up of single use plastics and most of the items aren't meant to be used more than once (though some products can be used for multiple days if cared for properly) that being said, disabled people tend to produce more plastic waste but it's not our faults so we shouldn't be getting flack for it!

Another element of environmental advocacy that a lot of people talk about is veganism; which is of course great thing to practice if that's what works for you but a lot of people (disabled or not) cannot be vegan for dietary reasons. This could be because of allergies, intolerances, restrictions, location, finances, etc. For example, I've got a soy allergy and I've got a friend with a severe nut allergy. This means that neither of us could be fully vegan because the majority of vegan products are made with soy and nuts. I also rely partially on tube feeds for nutrition and as far as I know, there aren't any vegan, soy-free formulas yet (and if there are they're probably absurdly expensive)

This brings me to my final point about cost. A lot of alternative options for vegan and sustainable products are significantly more expensive; making it much harder for people who are already struggling financially to afford those products. Not to mention people who live in food deserts (areas of a city that don't contain grocery stores) or rural areas. There are very low chances that either of those places is going to have specialty food stores or even have alternative options in the few stores that they do have!

In conclusion: stop blaming poor and disabled people for the awful state of our environment and start blaming billionaires and massive corporations!