I’m not sorry for being sick. It’s not my fault. It’s not a failing. I have nothing to apologize for.
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@chronic-nerd
I’m not sorry for being sick. It’s not my fault. It’s not a failing. I have nothing to apologize for.
[I don’t have a resting bitch face // I have a resting pain face]
24/7
Me: I had to drop out of school because I’m in pain
Doctor: yOu’Re SyMpToMs ShOuLd Go AwAy WiTh DiEt AnD eXeRsIzE
If someone with a chronic illness tells you they can’t do something without serious repercussions (severe pain, fatigue, sickness etc.) that means they CAN’T do it. it doesn’t mean they should just push themselves or they just do it that once or maybe just give it a go. if a chronically ill person cannot do something without hurting themselves then please just accept that they can’t and should not do it. support them, listen to them and don’t coerce them into doing the thing that WILL cause them harm.
“just because someone may have it worse
doesn’t mean your struggles aren’t valid”
How to Build a Chronic Pain First Aid Kit
Disclaimers: This is what’s in my kit, what I need for my condition. You need to do what’s right for you.
I have severe fibromyalgia, asthma, autism, vision impairment, anxiety, OCD, depression, BPD. The first three are what the kit is for.
Now, I’ve done this before but now that I’m flying out of the country soon, I had to rework my kit. It showed me that my flare box (which lives at home) and my backpack kit need to be the same thing because I can’t be swapping items all the time. If I have a meltdown or flare outside, it does me no good if my best products are in my home-flare box.
When I go out it fits in my little backpack alongside water, umbrella, wheelchair gloves, wallet, and emergency external battery for my phone.
At home the kit lives in my walker alongside emergency food and water, flare medications, ereader, 7 day pill wallet, and noise cancelling headphones.
I used to prep for “pack enough to get me home safely.” Now its, “Pack so I can stay out longer and enjoy myself more.”
Okay let’s get started.
What You’ll Need
1. Small travel cosmetics bag
I say ‘travel’ because they’re more compact with more storage space. (Available on eBay, most drug stores/chemists)
This is mine, I got it on eBay for $10. It folds out, has lots of compartments, and a handle on the other side.
2. Invisible hair elastics (the kind for tiny braids) for packing/containing
3. Tiny sauce portion cups (or zip lock sandwich bags)
What to Pack
Here’s what’s in mine that helps me:
(from top to bottom)
Instant heat pack (has a little chemical compartment in the centre that bursts under pressure and turns it hot.)
Physio band for stretching aching joints - this is especially helpful if you have to be sitting for long periods, wheelchair, planes, class etc. Use invisible hair elastic to keep it rolled up
Disposable vomit bag
Baby wipes - sweating, vomit
Compression gloves for when my joints start to ache and my hands tremble
Tissues
Bandaids (learning to push a wheelchair will shred your fingers when you’re starting out)
Roll on oil for headaches and anxiety
Spare batteries for TENS machine
TENS machine - gently shocks my muscles to make my back let go of my ribcage
Deep Heat for aching legs
Anti inflammatory gel for shoulders and hands
Emergency medication - nausea, pain, nerve blockers, migraines
Mars Bar for low blood sugar
Squishy stim toy for meltdowns and anxiety
Ear plugs (set) for serious sensory overload - don’t use dirty ear plugs, you can get infections. I have noise cancelling headphones as well but they aren’t as good as ear plugs in emergencies.
Listerine breath strips - in case I puke, also some meds taste vile.
Inhalers (steroid and ventolin)
All packed up, this is what my kit looks like:
I would be really grateful if people could reblog this to help other spoonies. If you have other ideas, I would love to hear them!
Please reblog with your condition and what helps you. Spoonies need to look out for each other.
is it like… a universal spoonie experience that sometimes u have one of Those Nights. when ur always the wrong temperature and u feel sick and everything’s painful and uncomfy and ur sweating and shaking and ur heartbeat goes all weird and u end up getting 1 hour of sleep max. do we all get this. it sucks.
Disability is not a dirty word
Disability is not a dirty word
Disability is not a dirty word
Disability is not a dirty word
Person: I don’t really think your symptoms/illness/condition is actually as bad as you say it is…
Me:
I am a person who wants to do a lot of things trapped in a body that’s constantly exhausted and likes naps.
if it makes you unable to get out of bed: you’re not faking it
if it makes you unable to think straight: you’re not faking it
if it makes you unable to brush your hair in the morning: you’re not faking it
even if you’re still able to work and smile during the day but unable to sleep or move later that day because of it: you’re not faking it
if it effects you in any way: you are not faking it
THIS IS REAL, don’t second guess yourself because others do
What a great time to remember disabled LGBT people exist and should be loved.
Hey if my intestines could chill out That would be great
Don’t feel pressured to find a silver lining in your suffering.
Some days I'm reminded I'm ill more then others
And it's not the days I'm in more pain
It's days like today where I did too much the day before and couldn't do anything due to that
Or when I lay in bed like tonight and for the first time in a while pain shoots up and down my body through my veins and nerves and makes it hard to type let alone sleep
I have an ice pack on my head and a heating pad on my stomach just to make things bearable and still another symptom I can't treat flares
Today is one of those days where I just feel like giving up