#ankylosing spondylitis

[plague-parade]

happy disability pride to all of my fucked up spine havers

happy disability pride to those of us who have spinal cord injuries, degenerative disc disease, ankylosing spondylitis, scoliosis, kyphosis, lordosis, spinal arthritis, cauda equina syndrome, tethered cord syndrome, spinal fusions, stenosis, myelopathy, radiculopathy, spondylolithesis, craniocervical instability, spina bifida, spinal tumors, syringomyelia, and anything else spine related

we are so very cool and i love you all so much

#disability pride month #disabled pride #disability pride #disabled pride month #cripplepunk #cripple punk #cpunk #actually disabled #physically disabled #disabled #disability #physical disability #spinal cord injury #SCI #degenerative disc disease #ankylosing spondylitis #scoliosis #kyphosis #lordosis #cauda equina syndrome #spinal fusion #stenosis #myelopathy #radiculopathy #spondylolisthesis #CCI #spina bifida #spinal tumor #syringomyelia

[brain-n-body-in-disarray]

It's the little things that hurts.

The way people don't get you can't do the things they do, at least without costing you so much.

The way the doors of shops or buildings used to fly open at the slightest touch and now they seems to weight a hundred tons.

The way my mother in law asked me if I wanted orange juice and when I said yes she put two oranges and a old manual juicer. I was too ashamed to admit how much it would cost me to do it this way. So I did it, fighting the tears and then couldn't use my arm for a week.

The way I can't get out of my apartment sometimes because even if there is a lift, there's also stairs between my apartment door and the lift and between the lift and the building door. Why make a lift at all if it's not even accessible because of the stairs? (I can't move out. I have neither the money nor the spoons.)

The way the new building the local bookshop moved into makes things so much harder for me than the old one. There was so much unused stairs that I could sit and rest for as long as I needed. Now in the new building the stairs are so narrow you can't think of sitting on them, you'll just block the way. And there's no chair or bench anywhere in this 4 stories building. You just can't sit and rest there.

The way the city is getting rid of public benches and putting in their stead blocks of concrete with metal spikes on them to dissuade homeless people to sleep on them, which is wrong on its own, but also impacts disabled people. There's less and less places where to sit and rest during a walk through the city.

It's people laughing when I can't open a bottle of soda.

It's people gossiping behind my back, saying "oh they are a junky" because I takes so many meds, including the ones for the pain, but not only for that.

It's me being too ashamed to be disabled at a relatively young age and having an invisible disability. It's me being too ashamed to ask for accommodations. It's me being too ashamed to ask for a seat in the bus when all of them are already taken. It's the society making me ashamed of myself.

It's life itself, mocking me, and the world joining in the good laugh at my expense.

#physical disability #disability problems #disability #disabilties #disabled #actually disabled #actually physically disabled #actually chronically ill #chronically ill #chronic illness #chronic pain #chronic fatigue #rheumatism #ankylosing spondylitis #joint pain #ehlers danlos syndrome #rheumatoid arthritis #rheumarthritis #accomodation #disability awareness #disability aids #arthritis

[wheelie-sick]

So you just got diagnosed with inflammatory arthritis....

A guide to coping with inflammatory arthritis written by someone who has been living with it for years

1. Warmth helps with pain and stiffness

Take a hot bath or shower

Use a rice bag to heat your most stiff and painful joints - How to make a warm rice bag (no sew) How to make a warm rice bag (sew) Adorable heated stuffed animals

Heating pads can also be good for heating specific joints (I don't like either of the ones I've had so I'm not dropping a recommendation)

2. Compression helps with stiffness

Compression gloves work really well in particular - Really cool compression gloves

Compression for other joints works well too

3. NSAIDs help reduce inflammation in your joints

Topical diclofenac is my personal favorite, it works wonders

Meloxicam is only available by prescription but has fewer negative side effects than over the counter NSAIDs do

Ibuprofen and Aleve/Naproxen are both OTC NSAIDs

Here's a full list of NSAIDs

4. Steroids reduce inflammation but are usually only used for flares. If OTC remedies are not working for your arthritis it may be worth asking about steroids to manage flares

5. Use adaptive devices

Note that I haven't tried all of these!

In the kitchen - Jar opener, pull tab opener, arthritis friendly silverware, ergonomic knife, another ergonomic knife

In the bathroom - My favorite shower chair, long handle bath sponge, shower grab bar

Dressing - Many button and zipper aids, magnetic jewelry clasps, sock aid

Standing assists - Bed rail, couch stand assist, cane with stand assist

Office - Pencil grips, book stand, vertical mouse

Other - Arthritis friendly gardening tools, so many grips adapters and holders

.... and many many more

6. Use mobility aids - I'd strongly recommend talking to a doctor before deciding to use mobility aids. mobility aids cause damage to your body so it's important to weigh the pros and cons of using them. Anyways my personal recommendations:

Canes - NOVA T cane, Carex ergonomic offset cane

Crutches - Millennial In-Motion Forearm crutches

Other people with inflammatory arthritis are welcome to add on!

#inflammatory arthritis #rheumatoid arthritis #systemic lupus erythematosus #gout #ankylosing spondylitis #psoriatic arthritis #chronic illness #chronically ill #cripple punk #cripplepunk #physical disability #physically disabled

[crippleprophet]

my recommendations for the si joint dysfunction starter pack (half-joking) are an si belt, lumbar support pillow(s), an si cushion, & a yoga mat. unfortunately all together that’s expensive as shit because they’re all like $30 but i’ve built up my collection over time & they’ve all been integral to my life.

i’m homebound now so i only have to sit in something that isn’t our recliner couch when i go to the doctor, but back in postgrad i would take my si cushion in my backpack or sitting on it in my mobility scooter & never sit in a chair without it. the added elevation kinda aggravated my knee pain, so i started bringing the cheapest, widest lap desk i could find bungee-corded to my mobility scooter & would take that off, set it up on the ground, & prop my feet up on it. honestly i didn’t gaf back then like what the hell 😂😂 i hurt way too bad to give a shit about abled opinions

the lumbar support pillows i have a smaller, squishier one for sitting in the couch recliner & a larger, firmer one for laying on my back in the bed. it hurts like shit lol but it helps a looot with that like passive stretch. that under my lumbar spine + regular pillow under my knees stretches it so good just laying on my back in bed.

idk how many of you know this so i’ll tack it on here but if you have ankylosing spondylitis it can help neck pain to use a flat pillow! my current one is just flattened by being old as hell but i’ve previously used one marketed to toddlers bc those are made to be as flat as possible. the reason is bc a thicker pillow pushes your neck more into a certain position, generally forward or to one side, which can make morning stiffness & pain worse. some people stop sleeping with a pillow at all but my pain is better with cushioning (i usually sleep on my side with a pillow between my legs & a pillow between my arm & head, & squishy stuffed animals between my hands & the mattress) so i still need one, & when i first switched from a thick memory foam pillow to the toddler one my neck pain got improved So Much literally overnight

obv this is all just my experience but i hope some of that is helpful!! feel free to add on with other shit spine tools & crip hacks!!

#crip hacks #ankylosing spondylitis #si joint dysfunction #disability aids #accessibility #mac.txt

[standtall-always]

Constant acute physical pain destroys you in a way nothing else can.

#very difficult few (4?) weeks #i pray this isn't... well that everything vomes back to normal #which already was v painful difficult and all but at least a tiny bit less than right now #idk #i'm a big mess today #ankylosing spondylitis #fuck arthritis #axial and periphetal arthritis #axial and periferal as #ibd #t1diabetic #type 1 diabetes #actually diabetic #chronic pain #as #axial and peripheral ankylosing spondylitis #acute chronic pain #disability

[lizzie-gains]

I've been struggling with my goals, so I'm breaking them down into weekly goals for the moment, to be more attainable. That said,

Weekly goals, 13th-19th November

Food and drink goals:

Take time to make a good breakfast in the morning - successful 6/7 days

Prepare lunch in the evening - eh... I had frozen meals for 2 work lunches, takeaway burritos for 2, and my meal delivery service meal for 1. Technically I prepared by having frozen meals?

Prepare some healthy/easy snack options for work, also some snacks/treats to nourish my emotions - successful, had fruits, granola bars, etc, plus some treats on hard days

Enjoy some of my variety of herbal teas, maybe in place of or alongside some of my coffees - successful, I've been enjoying my range of herbals, particularly turmeric and cinnamon tea each morning

Aim for 2L water/day, and consider playing around with fun additions to make it more interesting, like fruit or floral waters - only achieved this on a few days, wasn't tracking but I know I was dehydrated more days than I'd like

Movement goals:

Try to go for a walk 2x (treadmill or outside, depending on how I'm feeling + the weather) - not successful, 0/2 walks

Try to do some gentle movement like yoga 2x - 1/2 only

Utilise opportunities for incidental movement or adding movement to static activities - have been adding in extra movement when possible

Do my physio exercises 3x - also did not achieve this, 0/3

Self care goals:

Add meditation into my days; use short meditations to make this more attainable - successful, meditated at least 5 days this week

Practice mindfulness - sometimes, this is a work in progress

Allow myself time to complete my skin care routine - successful, have been reasonably consistent

Start reading a book on my to-read list - did not start reading anything yet

Practice journalling, or try writing therapy - have been journalling

Partake in a spiritual practice at least once this week - successful

Remember to listen to my body and be respectful of my needs, treating myself with kindness and love - I experienced fatigue and headaches for most of this week, which is why my movement goals in particular weren't achieved, so I'd say I listened to my body

This feels flexible and attainable for my current state (which is not great, but getting better).

#health #fitblr #healthy #personal #fitspo #fitspiration #lizziespeaks #healthblr #food #healthspo #goals #movement #exercise #chronic illness #chronic pain #ankylosing spondylitis #spoonie #self care #motivation #self love #self kindness

[moonshinemagpie]

does anyone want me to write a little blog post about the household products i use to make day-to-day life with arthritis easier/less painful?

#arthritis #disability #autoimmune disease #spoonie #tbh i cant tell if people 'like' those types of blog posts when i write them #because they're like aha this is solid info #or if theyre like oh youre disabled i must support #rheumatoid arthritis #ankylosing spondylitis #carpal tunnel

[imvasic]

YAY i did it i’ve officially conquered my needle phobia!!! took my first humira dose today and did it without being nervous at all! didn’t hurt either, hurts more when my dog steps on me with her little claws.

this is quite literally my biggest achievement ever i cannot believe i successfully just gave myself an injection

#jacket.txt #physically disabled #ankylosing spondylitis #cripplepunk #needles #injections #trypanophobia #i’m so beyond proud of myself right now

[pasteloddity]

Kinda late, but this OC is named Glurg. It’s inspired by my feelings living with chronic illness, autoimmune disorder, and neurodivergency, among other things. Definitely gonna be posting more than one of these, just figured I’d get one out before I got too too behind.

#art #artist #artists on tumblr #build a beast #halloween #horror oc #horror #body horror #chronically ill #chronic illness #ankylosing spondylitis #neurodivergencies #neurodiversity #adhd #ptsd #autoimmine disease #disability #trauma vent #vent post #vent art #scary #spooky

[raccooninapartyhat]

why are all compression gloves sensory hell. why are all of them made in the itchiest worst material that feels like nails on a chalkboard. why aren't any made out of a good soft material and not like, some awful fabric that they also use to make joint braces

#ankylosing spondylitis #cripple punk #i just want a pair that dont hurt me to use

[brain-n-body-in-disarray]

As of today I am a cane owner. Now I need to figure out how to become a cane user...

How to use it the most effective way without harming myself.

How not to feel like a fraud or a faker while using it.

How to handle ableist people outside or the comments from family.

#cane user #mobility aid #mobility aid user #physical disability #actually disabled #cpunk #cripple punk #ankylosing spondylitis #rheumatism #chronic pain #ableism

[taxonomicons]

call me ankylosing spondylitis the way I’m throwing it back (by “it” I mean “out my”)

#ankylosing spondylitis #back pain #throwing it back #meme #joke #humor #shitpost

[crippleprophet]

i should make a full post about accessible stretches later but for si joint dysfunction they tell you to do a bridge and the fucked up thing is it helps a lot. but obv many of us myself included can’t do that. so what you do is you lay on the bed on your side and try to move your shoulders and feet as close to one another as possible bending your spine backwards. a bridge on the x rather than z plane

#pops that fucker right back in more often than not #ankylosing spondylitis #hypermobility #stretches #mac.txt #highposting

[sickzombi]

Got xrays done I hope my Dr lets me keep a copy I LOVE SEEING MY BONES !!!!!!!!

But also hope they're not too fucked up....i guess we'll see. End of this month 🤞🏻

#chronic illness #spoonie #chronic pain #disabled #celiac #heds #disability #arthritis #psoriatic arthritis #pots #ankylosing spondylitis

[lizzie-gains]

I pushed myself too hard over the past few days and have no spoons now 🙃 and my partner is away so I just have to somehow manage, despite not being able to manage.

#ankylosing spondylitis #as #health #personal #lizziespeaks #chronic illness #chronic pain #spoonie

[thisfemmehasbackpain]

body is Big Ouch

#ankylosing spondylitis #chronic pain