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mybendyplaces · 1 year

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anyone else with hEDS feel like a bunch of loose bones in a ripped up rite aide plastic bag

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imafraidoftomorrow · 8 months

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It was 6 years ago today that my life changed.

6 years ago today that I touched my neck and felt a huge, hard lump. 6 years ago that I looked in the mirror and could see it clearly.

I went to the ER and, after waiting for hours, was told that I was the perfect demographic for thyroid cancer. I was 20 years old. I was told that I needed surgery because the tumor was at risk of suffocating me. Suffocating. The pain became so unbearable that I was on opioids for 2 months. For 25 days I had to wait to find out whether the mass was benign or malignant. Whether or not I had cancer.

It was bigger than the surgeon expected. She had to cut deeper into the muscle; had to take more of the gland along with several of my lymph nodes. It hurt. I woke up with a blood-filled bag hanging from a tube laced through my throat. The first time I saw myself after surgery, I cried. I felt, and looked, like Frankenstein's monster.

I've been sick ever since. A body can't function properly with only half a thyroid. I'm tired all the time, yet I can't ever sleep. I have brain fog and joint pain and heart palpitations. The medication that I need to live costs $350 out of my pocket.

You might think this post will end heroically - that it will read, "but despite all of that, I'm still alive and I'm grateful!" And I wish that it did. But the truth is, I grieve this day every single year. I wish it had never happened to me. I hate being sick, and I hate looking in the mirror and seeing my scar. When I notice it in photos, like in the last picture, I sometimes still want to throw up.

I guess what I want to say is, sometimes hardships just fucking suck. A tragedy is just that - a tragedy - and what doesn't kill you can, in fact, leave you frail and broken. And it's okay to mourn for your old self, because I certainly do. I mourn for her every single day. And I mourn for my present self, too, for all that she has had to endure.

#personal #spoonie #chronically ill #chronic illness #spoonie life #spoonie living #thyroidectomy #thyroid #thyroid cancer #hypothyroid problems #hypothyroidism #surgery #invisible illness

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lifewithchronicpain · 9 months

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I did it, I got my new flowers planted!

For the first time I actually have a before:

And now the after:

Two impatien plants on the sides and white begonias in the front and back. I accidentally dug up some of my crocus bulbs, oops. That's why there's such a space between the kitty gravestone and the front begonias.

My kitty Bella isn't buried in the garden, she's buried just outside it between the garden and bird bath. You can see my whole bird feeder and bath setup in the last picture. I made sure to put fresh water and feed in place. Also, my childhood cat Teddy is buried next to her. So yeah that corner is very special to me.

I want to try to take some of the forsythia above and weave it into the chain link fence above the retaining wall. I want to try and get the forsythia to fall in a blanket across the wall and cover that ugly hole.

Bonus pic, my pot plants are doing nice and spending the day in the wind to build up those stems:

#garden #gardening #bella's garden #hobbies #spoonies #spoonie living #marijuana plants #legal marijuana #medical marijuana

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lycomorpha · 7 months

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On the off-chance any made it here... Huge thanks UoR pharmacy students for joining me yesterday to talk chronic pain & life as an artist+scientist! You give me so much hope for the future of care with empathy.

Find my notes here.

The posters are from the #SayTheWord campaign via Yellow Submarine Down Under. They're one of the best examples of the word-flipping exercise we discussed.

#spoonie #spoonie life #spoonie living #disabled #disability #disabled and proud #chronic illness #chronic pain #chronic life

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crps-chronicpain-ptsd · 1 year

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I trying more than anyone knows

Chronic pain problems •

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crazycatsiren · 2 years

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*Do Not Reblog*

The disabled experience... I don't think anybody can fully understand unless they've gone through it themselves.

We are going to a store, where I know there will be a lot of walking, and it's a Saturday, so there will be a lot of people and it's going to be loud. I pack my noise cancelling headphones, along with the usual water bottle and sunglasses. I put on my compression socks and knee braces. I walk out the door with my rollator, put on my sunglasses, then put my rollator into the trunk of my husband's car. We drive off.

We get to the store. I take the rollator out of the trunk and unfold her. We walk into the store, I take off the sunglasses. We go to the food court for lunch first. I stand in line for a while before I have to sit down on my rollator seat while waiting for my order. I get my food and take it to a disabled friendly table. There's bacon and sour cream in my food. I take my histamine enzyme supplement and lactaid pills. I put on my headphones and turn on my music, something to focus on to reset my already garbled senses as I try to tune out the hustle and bustle all around me, ignoring the usual stares being that weird person over there with the rollator and the headphones as I eat.

We walk through the store. I walk in a steady beat to the music to pace myself. It's hot, and I have to stop for water breaks. I ignore more stares, keep my head high, mindful of my posture while trying to avoid the usual amount of children everywhere who are running around and not watching where they're going, who also stop and stare at me, directly in my path, too.

My husband stands in line at checkout, I find a spot out of the way, sit down on my rollator, and wait for him to pay. We exit the store. I take off my headphones and put them away. The clouds have rolled in so I decided to skip the sunglasses. I fold up the rollator and put her into the trunk. We drive off again.

I forgot my chew toy, so I gnaw on an empty soda bottle to keep myself from chewing my fingers. I get a little car sick from the heat and sensory overload. We arrive at the next store, where I go to the bathroom first thing after having drunk a good deal of water. We look for a new couch. After a dozen times of sitting down and standing up again, a dizziness spell hits. Luckily, we are in a furniture store, where I can actually lie down. And thankfully, there aren't too many people in the store, so it's relatively quiet. I wait for my husband to arrange delivery for the new couch and coffee table we just bought, as well as for my heart rate to return to normal.

As much as I can feel safer from a world that is not at all designed for people like me in this little bubble that I am able to create for myself, it can be a very lonely existence. And sometimes, it alone makes me want to weep.

#a day in the life of me #lorelei's mind #my thoughts #afternoon musings #disabled #spoonie #cripple punk #babe with a mobility aid #actually disabled #disabilities #do not reblog #disabled experiences #disabled life #spoonie living #diary

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toastsbaby · 1 year

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them: oh no what hurts?

me:

#chronic pain #chronic illness #chronic illness memes #chronic pain memes #invisible illness #invisible disability #spoonie #spoonie life #spoonie living #im exhausted #everything hurts #lol #everything everywhere all at once

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mandana-the-service-pup · 1 year

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Quick Tip // If you have muscle weakness that makes everyday tasks difficult, look for products that are designed for arthritis.

I was having trouble opening doors in my home and we were considering installing different handles but these doorknob covers work great and are much cheaper.

#chronic illness community #disabled community #disability awareness #spoonie living #life hacks

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formerly-feminish · 1 year

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Read this before commenting on someone’s weight loss...

Don’t do it.

There is never any valid reason why you would need to call out someone’s weight fluctuation.

This is true in general, and this is true for people with eating disorders;

A group, however, that often gets left out of this conversation are chronically ill spoonies that may have extended stays at hospitals where you don’t have control over your food; or they may be taking a medication that could literally be life/death... but a side effect can cause weight fluctuations.

There is a reason for or story behind everything. You are not entitled to the details of someone’s personal, medical life, unless they want to share it with you. Even then, you aren’t entitled to everything - only that which they are comfortable disclosing.

TL:DR Live your life, and let others live theirs. Trust me, you can do it, and you will be much happier that way. :) <333

#spoonie #spooniesupport #spoonie living #spoonie life #hospitalrecovery

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mybendyplaces · 2 years

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my doctor: do NSAIDs work for you?

me: no

him: have you tried them before?

me: yes

him: which ones?

me: naproxen, ibuprofen, aleeve, and tylenol.

him: and they didn’t work? they should work for young people like you

me: they don’t.

him: well. keep doing physical therapy. we don’t want to prescribe medication to young patients who can do things for preventative measures

sir. my joints already suck, nothing is being prevented anymore. just give me pain meds/management.

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writestheunsaid · 4 months

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From the book ‘Radiant Poppy’

#poetry #writer #personal #chronic illness #lupus #invisible illness #poems and poetry #original poem #poet #short poem #poems on tumblr #poems and quotes #my poem #poem #chronically ill #living with lupus #systemic lupus erythematosus #spoonie living #spooniestrong

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lifewithchronicpain · 1 year

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If you're a primarily homebound spoonie with limited ability to go outside, I can't recommend enough finding a small way to socialize within your community.

It doesn't have to be every day or every week, but just something where you can talk to a stranger about the weather or the newest restaurant in town. We are social creatures and being able to just positively interact with strangers and make small talk can actually make us feel really good.

For me I have family and friends that do make efforts to do things with me within the limits of my disability. But I also have found small interactions with people at the park I go to with my dog can brighten my day.

I highly encourage involving a dog if you can, they're such ice breakers for idle chat. Whether you choose to go to the dog park, chat people up at the local cafe, or just go for a walk a compliment someone's outfit. Whatever you pick, make sure you don't feel committed to doing when can't because of chronic illness.

We are all social to some degree, no matter how introverted, and small social interactions matter as much as the big exciting ones with friends and family.

Normally this year can be really depressing for me because of seasonal affective disorder but taking Harry to the park, watching him play with other dogs, talking to other owners, it's helped make me feel part of the community that I haven't felt before.

#disability #chronic pain #chronic illness #spoonies #spoonie living

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chronic-this · 2 years

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I don’t know who needs to hear this right now, but… get a bath seat.