#ehlers danlos syndrome – @spookysalem13 on Tumblr

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I wouldn't be coming to you today if I wasn't desperate. I'm chronically ill as you know. I'm disabled. But I've been working as much as my body will let me. It's been enough for the most part to keep me living paycheck to paycheck but nothing more.

Sadly my health has declined to the point I need to take FMLA for the next 12 weeks. But I don't qualify for paid Family Medical Leave (FMLA). So for the next 12 weeks my job will be secure, but I won't receive a paycheck.

As I've been living paycheck to paycheck, I don't have the funds to support myself over these next 12 weeks. If you're able would you please consider donating any amount at all to my PayPal. Links are at the top and at the bottom of this post.

Sharing, reblogging and interacting is greatly appreciated as well. I really need all the help I can get to get through these next 12 weeks while I try to get better.

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spookysalem13 reblogged

stillfuckingtired

Sometimes being disabled feels like you’re surrounded by people with superpowers, and you’re the only regular human.

Because I don’t really feel like I can do less—I feel normal. I’m so in tune with my own body, my own abilities, my own experience. I’ve lived this way for so long.

But then I look at other people, and see how much more they can do, their stamina, their resiliency, and I’m…baffled. Befuddled. Astonished. They seem downright superhuman compared to me. They seem like goddamn superheroes.

spookysalem13

I have never related to a post more deeply than I do this one when it comes to my life being chronically ill.

spookysalem13 reblogged

fibro-memes

spookysalem13

People have called me lazy, they've called me selfish, they've told me to get over it already and that the world doesn't revolve around me.

I'm not lazy, I'm disabled. I'm not selfish, I'm taking care of my my health first. I don't think the world revolves around me. Just because people are used to my silence & my compliance, doesn't mean I think suddenly the world is all about me because I'm willing to say I'm sick, I'm ill, I'm in pain, I need help.

spookysalem13

Just a fellow spoonie 🥄 here to share a relatable hilarious 😄 video.

Being chronically ill, you have to learn to find the humor in your diseases. For me, it's a major way I get by day to day.

This made me smile, I hope it can make you smile as well.

spookysalem13 reblogged

I want my fucking body back. I want my fucking life back.

spookysalem13

I would expect a lot of posts today 😅. It's looking like today is lay in bed with my trusty ice pack day. It's a chronically ill chronic pain day everybody, which means prepare yourselves 🫠😆.

#chronically ill #chronic disability #chronic pain #chronic migraine #autoimmune disease #disabled #stuck in bed #fibromyalgia #rheumarthritis #ehlers danlos syndrome #hypermobile ehlers danlos #hypermobility #spine problems #migraine #sjogrens #celiac disease #osteoarthritis #multiple sclerosis

spookysalem13 reblogged

youngchronicpain

You do not deserve the pain that you are in. I am sorry that you are hurting. I am hurting too. I wish things were different. But I am glad that we are not alone in this.

spookysalem13

Thank you for this 💜

spookysalem13

I'm chronically ill. I'm disabled physically and mentally. I live a rough life from day to day. People always tell me how strong I am.

This may be with the best of intentions but in all honesty I'm not strong, I'm very weak from being broken down every single second of my life from my chronic illnesses.

I don't get to live my life, I'm surviving not thriving.

spookysalem13 reblogged

I haven't been getting better about listening to my body about resting when I need it so I think I'll try getting worse at pretending I'm not in pain, maybe that will work

spookysalem13

I shall try too. I will let you know how it goes 😉

#gonna try tricking myself into being functional #chronic pain #chronic fatigue #spoonie #chronically ill #chronic illness #autoimmune disease #rheumatoid arthritis #osteoarthritis #ehlers danlos syndrome #hypermobile ehlers danlos #hypermobility #fibromyalgia #fibropain

spookysalem13 reblogged

j33persworld

my joints are stiff like the tin man. i bend over and that shit goes creeeeeak

spookysalem13

As someone with two different types of arthritis, many autoimmune diseases, fibromyalgia and hypermobile Ehlers Danlos Syndrome I can say I fully relate.

#disability #disabled #chronic pain #cpunk #physically disabled #cripple punk #angry cripple #disabled queer #fibromyalgia #arthritis #rheumarthritis #rheumatoid arthritis #autoimmune disease #chronic illness #chronic pain warrior #ehlers danlos syndrome #hypermobile eds #osteoarthritis

spookysalem13

Had to be taken to the Emergency room this morning by ambulance. I'm so grateful 🙏 for the amazing medics at the Snoqualmie Fire Station 💕 they took really good care of me.

The doctor & nurses at Swedish ER were able to treat my pain at least for the next four hours. So I'm comfortable for now.

My heart condition episode I went into this morning due to my pain being so high, that I'm still battling with that has had me falling into the walls, jello legged nearly collapsing on the floor is being treated at home using remedies that I am to use when this situation arises.

I've been contacting doctors and clinics all morning as the ER doctor said I desperately needed to do. And I'm beyond appreciative of my rheumatology care team for straight up telling me that I need to be in bed resting and normally they'd have the patient make the calls and do the work but they're going to handle it all for me to try and get me some help temporarily while I wait to get into a pain management clinic.

I'm really hoping fingers crossed that today's the day I start getting some help for all the pain I'm in.

Luckily I got in and out of the ER pretty fast and the doctor was amazing and heard me loud and clear when I said I was in pain. She didn't hesitate to help me like so many doctors have in the past and for that I am truly so grateful 💜

Today I will be taking it easy and waiting to hear back from my care team hopefully with some good news.

spookysalem13

Chronic excruciating pain can fully kiss 💋 my a$$! I've been living like this my whole life. I'm tired 😫 I can't take this anymore! I'm livid, I'm angry, I'm PI$$ED OFF! Why don't doctors want to help you? 😒 They've been letting me suffer & I'm sick & tired of it!

I'm only 24 years old I shouldn't be stuck in bed! This is a load of BS! When my doctor hears from me today I make zero promises to be nice 😑.

I'm going to be as loud as I need to be until someone hears me screaming to death in tears from the inside 😭. I need HELP! I don't want this to be my life... why don't they get that?

Did doctors go to school to become heartless & dumb is that lesson number 1? How to make your patient suffer the most?

UGHHHHH! IM SO MAD! I'm snapping at the people I care about because I can't take living in my own meat suit anymore. How screwed is that?! I haven't slept for more than 3 hours a night in 8 months! Because pain insomnia is real! I can't even rest anymore because I can't get comfortable.

I'm so tired! I hurt everywhere all the time... I can't do this anymore. It's so much stress on me I'm burning 🔥 down from the inside.

spookysalem13

Any of my autoimmune disease warriors suffer from literally Sahara dessert dry lips? Mine would crack, peel and bleed. No amount of water I drank or lip balm I used would heal my lips.

This past week I tried using aquaphor healing ointment. Vaseline didn't work for my lips so I didn't have high hopes. But we had it and I was desperate. And who would have guessed my lips have never been so soft! They no longer get flaky, they no longer hurt. They're simply so soft and luscious all the time 💋

I wanted to share this with any other autoimmune disease warriors out there who have the same problem. I have a big tub and I use it only for lip balm. And my lips are so happy 😊

Amazon.com : Aquaphor Healing Ointment, Advanced Therapy Skin Protectant, Dry Skin Body Moisturizer, Multi-Purpose Healing Ointment, For Dry

amzn.to

#autoimmunedisease #autoimmune disease warrior #chronic illness #chronically ill #sjogrens #ehlers danlos syndrome #celiac #lip care #skincare #warrior #selfie #this is me #amazon finds #autoimmune

spookysalem13

Oh, how I wish I could be that person who is consistent with their skincare routine. Skincare brings me so much joy, it makes me feel beautiful, it's peaceful.

But at the same time, I'm chronically ill. I have so many health conditions that I battle every single day, and sometimes I simply don't have the spoons needed to stand there, in chronic pain, fatigued and falling over, to apply skincare to my face.

I do the best I can because it truly is something that I enjoy with all my heart. But I try my best not to feel too guilty when I only do it once a day or have to skip a day or two. Because these days with how much I'm battling, I simply need rest. I'm not doing very well, and the last thing I should feel guilty about is if I chemically exfoliated that night or not.

Tonight, I was actually able to get into the bathroom and do my full skincare routine. Though the pain I feel afterward is great. So many spoons just fell out the door. As someone on a night schedule for my job, I just cost so many spoons. Luckily, no work tonight. So I'll try to get plenty of rest. I'm not only chronically ill, but I have a really bad cold. As an immune compromised person, it's truly beating me up.

Remember that doing the best you can, even when your best looks different from day to day, is all you can ask. You're a warrior.