#SpoonieStrong speaks

[spooniestrong]

I think every doctor should be consulted by a group of spoonies regularly. Their ableism needs to be kept in check. If necessary, by force.

[guil-t-ventz]

Woke up ridiculously early cuz of pain again… I am so not a happy camper right now. 😭

[hraewordsmith]

[spooniestrong]

It costs $0 to care about immunocompromised people.

Wear a fucking mask. 💙🥄😷

[earlgraytay]

I wrote an entire one-act play because I am Very Cranky about my doctor’s appointment from the other day. 

Posted on Pillowfort; linking here. Enjoy. (Or not.) 

[whateverfinn]

I’m gunna die if I try and keep this up...

I am currently working 3 jobs. One at a school 7am-2:30pm, then at a kennel from 3-7pm and THEN I work at a bar any time I’m not working the kennel or school.

I’m working at the bar just until they can hire on some better staff. Then I’ll be down to maybe once every two weeks just to hold the position until I need it in the summer, but still.

My weekend looks like this...

Friday- school 7-2:30/ Kennel 3-7

Saturday- Kennel 7am-12/ Kennel 3-7/ Bar 7-12am

Sunday -Bar 11am-4/ Kennel 4-7 then after that I get to drive 2 hours to pick up my son.

Like I think I’m gunna die...

[guil-t-ventz]

Irony:

A few months ago, I went to my pain specialist because I was having full body aches. They told me it was tendinitis. But I had tendinitis back in high school, and it felt COMPLETELY different! I told them this, but they still insisted that I get a minor surgery for my forearm, which happened to be the worse part of the whole body aches that particular day.

Naturally, it didn’t do shit.

I finally got in to see a rheumatologist, like maybe a month later or so. And they diagnosed me with Fibromyalgia. So yeah, OBVIOUSLY not tendinitis. 🙄

… But now? This past week my elbow has been hurting a lot. Often it’s way too painful to even move. And it’s my right elbow, which has my dominant hand, which makes it so much worse. 😭😭😭

But guess what? It just so happens that this particular pain feels EXACTLY the same way that it did when my knee got fucked in high school. Hmm, I wonder why that could possibly be? (/s)

Maybe doctors should actually LISTEN to their patients for once.

[spooniestrong]

Just want to say that I know we all feel some kinda way about all our local & the international upheaval, but we have a finite amount of energy and its more than okay to not get involved in the discord. (We can't change the world when we can't even get out of bed.) It's okay to block things for our mental health. You are not a bad person by doing that. It's called self-preservation. If you know in your heart you want to help but can't, that's worth more than all the empty words being spewed right now. Take a deep breath, relax, and do only what you can. It's not going to help anyone to hurt yourself. *💙&🥄s*

I cannot fight for my health and fight the world at the same f**king time.

[spooniestrong]

In case you don't follow wastewater collection or covid testing blogs, I'm letting you know we're in the throes of a new surge. Coupled with the news of China & France dealing with a new strain of childhood pneumonia, I think it's safe to say... I told you so.

Covid isn't over.

Wear a mask.

Get your boosters.

Get your flu shot.

Stay home unless you absolutely have to go out.

[earlgraytay]

ok having experienced both i can safely say: the pain from having two major surgeries at the same time is way, way, way less bad than untreated fibromyalgia

I mean some of that was probably that I was on the Good Drugs and so I didn’t feel all the pain but

I was never doubled over in bed crying because of surgical pain 

[spooniestrong]

When I was a little kid battling cancer in the 80s, the coolest thing was bandaids with designs on them. It literally meant everything to me to have something cool to look forward to with all the needles I was getting. 💙🥄 Thanks for sharing, OP. Brought back good memories for a change.

Cute bandaids because even if they physically wont help my chronic pain, seeing something on my body thats meant to help injuries is oddly soothing

[dmnsqrl]

Posted @withregram • @chronicallycandidmemes ✨A Whole New World✨ • • ID: a painting (“Poem of the Soul” by Louis Janmot) of two women on a hill. One woman is leading the other up the hill by holding her hand, and is turned back to speak to her. The caption reads “Chronic illness patients welcoming Long Covid patients to the community” and the woman leading the other woman has a quote that says “lemme show you around”. #ChronicIllness #ChronicallyIll #ChronicIllnessMemes #ChronicIllnessMeme #Spoonie #ChronicIllnessHumor #Humor #SpoonieHumor #SpoonieMemes #Art #ArtMemes #ClassicalArt #ClassicalArtMemes #Lol #LaughterIsTheBestMedicine #SpoonieStrong #DisabilityMemes #ChronicallyCandidMemes #LongCovid #LongCovidMemes https://www.instagram.com/p/CaIRLNvv362AI23MNvd4W7DUdwmqrmkRhpZZU00/?utm_medium=tumblr

[lovesilentfury]

Regrann from @spooniehealthhub - This speaks to my soul 😴 . #fatigue #chronicfatigue #mecfs #cfsme #chronicillness #spoonie #spooniestrong #spoonielife #mentalhealthGoddessStrong (at Denver, Colorado)

[cheerful-chick-in-a-chair]

It’s easy to feel helpless when so much is out of our control or unknown. Let’s focus on one good thing we all can do: Encourage your friends and family to speak up on behalf of people with #disabilities and #CallYourSenator! ☎️ (Comment if you don’t know how.) History has proven the #disabled community will be swept to the wayside and deprioritized in times of crisis, such as a war or #pandemic. That cycle will only be changed by conscious, concerted effort by anyone who bothers to care. So please do. #CareAboutRare #Rarevolution2020 #DisabledLivesMatter #DisabledNOTDisposable #DyingForChange #Disabledandcute #wheelchairbarbie #wheelchair #wheelchairgirl #disabled #disabilityadvocate #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness #dysautonomia #CRPS #complexregionalpainsyndrome #POTS #autonomicdysfunction #posturalorthostatictachycardiasyndrome #potsie #spoonie #spoonielife #spooniesupport #spooniestrong #speakup #voiceforthevoiceless (at National Organization for Rare Disorders, Inc. (NORD)) https://www.instagram.com/p/CCp4B4MDN_d/?igshid=u2hn7533ob1m

[spooniestrong]

That may be your opinion, but it is just that, @lifewithchronicpain.

Check your privilege, and don't hijack my posts for your internalized ableism.

[guil-t-ventz]

Hi! Do you have any advice on how to manage work and pain? I'm on my feet all day and I've been getting some bad flare-ups in the last six months and I'm having a hard time managing it all. I always end up trying to ignore the pain all day, so when I finally get home it hits me all at once.

Anyway, your posts always make me feel less lonely and very understood so I thought I'd ask ❣️

So sorry for such a late response! I’ve had almost no spoons at all lately… 😣

A few questions to clarify: What sort of pain is it, specifically? Body aches? Feet pain? What kind of work is it - retail? What type of shoes do you wear? How’s your sleep schedule? (So I can be a bit more specific.)

What pain meds have you been using? BC Powder is some of the strongest over-the-counter stuff I’ve used. I would usually take it during my lunch break, unless the pain was too bad to handle. I also kept some OTC anti-inflammatory meds when I was scheduled on the floor, in one of those travel-sized pill holders. It fit in my pocket easily, and was easy to take without drawing too much attention.

Do you see a doctor? If you do, I’d recommend asking them about “Cambia Powder”. It’s a powder with a very minty taste, and it’s been the most effective prescription meds for my body aches.

Plan your bathroom breaks. It might sound strange, but this gives you a chance to rest your feet a little, and people usually won’t question it. You want to rest your feet in intervals throughout the day. I used to stand on one foot for a couple seconds, and then switch, when I was a cashier. Taking the opportunity to stretch too is nice.

Not sure which things you’ve already been recommended, but: epsom salt, memory foam shoe inserts (not gel cuz this kind is easier on the feet), CBD cooling gel roll-on. As cliche as it sounds, it should get somewhat easier with time, as your feet get used to doing so much walking. It took me ages, and then when I left for school, I ended up having to adjust all over again.

Communication helped me a lot too. I was very open with my manager about my pain levels, and what I could or couldn’t do. She didn’t always understand, and would ask me to do things that I wasn’t capable of, but she also understood a little bit better when I had to leave early. I told my new boss right from the get-go, so that he would know in advance. (That’s why I was able to get approved for intermittent disability.)

* * *

Thank you so much for the ask! I’m so glad to hear that you enjoy my content. 😁

If there’s anything more specific, definitely let me know. There’s a lot of other advice I can give for different pains, if you need it!

I really hope that some of this helps you. Consistent pain is definitely rough. But even if you can ease it just a tiny bit, it’ll help a lot in the long run.