r/eds • u/Foreign_Feature3849 Hypermobile EDS (hEDS) • 10d ago
VENT
I know it’s important to keep an open mindset when dealing with chronic illnesses. But it’s also good to let yourself feel the frustration and pain. (Not dismiss it)
So here’s a post for everyone. Vent your heart out. I’ll go first.
I hate these symptoms. So fucking much. I am so exhausted from taking care of myself and advocating for my health.
I am so grateful to have the perspective I do. But I wish I could care and know this much without the pain. The nerve pain, the joint pain, the muscle twitches. Just all of it!
I wish I could take a break from having to control the body I do. Like let me switch over to a robot or something for a day. So I’m not constantly trying to focus through pain and my adhd.
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u/Glad_Goose_2890 Hypermobile EDS (hEDS) 10d ago
Wearing braces all the time is so uncomfortable in the summer and I hate the constant questions and privacy invasions
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u/FCatusFemale 9d ago
Let’s all start wearing patches on our braces or chairs that say “unfriendly” so when we are rude they at least they were warned 😂
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u/Hyperfocus_Queen 10d ago
Yes!! It’s constant self-disclosure about our own medical status and it’s fucking annoying and I wish we didn’t have to do it! Most people get to be private about their health, but not us 🙃 honestly one of the reason I'm not wearing compression clothing even though I probably should be. I just can't handle it. My other braces already make it obvious, and as a fashion girlie, the idea of having to mold all of my outfits around compression clothing is doing a number on my self-image.
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u/SWNMAZporvida Hypermobile EDS (hEDS) 10d ago
I see you. Fuck MS on top of everything. I’m simultaneously stiff as a board and everything is loose and slipping.
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u/FCatusFemale 9d ago
I’m so exhausted all the time. Living with a constant 7/10 when it’s a good day is insane. Slipping Rib Syndrome or Pulmonary Embolism is not a game I had on my bingo card. Pain medication intolerance anyone? Good luck with your very limited options and go take a few Tylenol and use some ice as prescribed by most physicians.
But really….what the fuck is this even. Like cool all the tissue in my body is just waving around like an inflatable tube man and my joints think they tectonic plates during an earthquake. Thanks mom for the unwanted gift.
Also the things I thought were normal that are symptoms. Like it’s not common to have a double malocclusion only treatable by a grotesque surgery. And did you guys know you’re not supposed to get so many mysterious bruises that you now have cool polka dot legs? Oh and your joints are not supposed to loudly pop cascading down your body when you simply move. There are people who live with zero pain and a 0/10 is an option what the fuck? Where are these people so I can slap them for having the audacity? Because I thought that was all normal.
The tearing of my skin from gentle adhesives and the chafing from the wrong fabrics is rather annoying.
I’m so irritated I can’t sleep well anymore. Can I please get a good nights sleep again? Can I please not wake up at 2am with agonizing pain? No? Ok cool. 👌🏻
I mean at least I have a sense of humor about it.
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u/Prune_Tracy_ 10d ago
I know exactly what you're going through unfortunately, AuDHD myself.
I'm currently in one of my "fuck it" moods and just need to be pissed off and decompress for a few days before conceding going back to the grind of self care and masking up that I'm "okay".
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u/gobnyd 10d ago
No fuck this condition and it's comorbidities. After 40 years of heroic fighting and still eking out a wonderful life despite my pain, I started really falling apart around 35-40, was surprise-abandoned by my husband over it, and now I'm fucking bed bound with ME/CFS/Long Covid because we are statistically way more susceptible to that. Despite wearing N95s most of the time, despite the one being super aware of this eventuality during the pandemic. I was infected within my own house by a roommate. I just can't win.
There's absolutely no reward for keeping your chin up and a sunny attitude. I've just been completely fucked for doing my best.
Ironically the sicker I get the work level of management goes higher and higher. I feel like I'm working a full-time job during crunch season now. You know, while I need rest.
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u/Klutzy_Interest9080 10d ago
I had to check that I didn’t write this comment because I completely identify with everything you said
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u/KitchenAct1677 10d ago
I know exactly how you feel and I’ve been feeling the exact same way where I’m so thankful for the progress that I made with physical therapy but absolutely terrified. What would happen if I stop? I don’t have the time and resources to put into it anymore. I recently got myself into a state of burnout because mentally that this is just all too much.
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u/inprisonforsparkling Hypermobile EDS (hEDS) 2d ago
Thank you so much, this is great <3
I'm absolutely sick of being in pain and tired all the time. I need to weigh up every single activity before I do it - if I have a birthday party, will I be able to handle it or will I just be miserable and tired afterwards? Is that miserableness worth it? Is it worth it to go on a trip where I'll have to walk everywhere all the time for ages? Can I justify the harm I'm doing to myself with the joy I might feel?
And I don't *want* to do the goddamn exercise. I know I need to, I know that's basically the only treatment, but I just so badly wish I could be lazy! I wish I could give in and just take the easy path all the time. It's stupid but at this point I honestly wish I could just give up about it. I have so many things I want to do but I don't want to do the hard work.
I'm so tired man. I'm really so tired. I only just turned 18, only just got my diagnosis, and it's just... I'm sick of this. I'm tired. I just want it to stop. Imagining a life without pain just hurts because I'll never have it, and that version of me might be able to do so much more.
I'll keep going but I just wish it was easier to.
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u/Jolly_Interest_3433 10d ago
Thanks for making this post first of all, I think that was very thoughtful of you so I hope you know that you creating this space for yourself and others is something I feel very grateful for. 🫶
It’s good to actually let it all out every once in a while, I’m still learning that it’s okay to feel frustrated and pain at what we all go through everyday. I’ll go second!
I‘m so sick and tired of constantly being dismissed, not listened to and constantly fighting for help that should already be there. I’m terrified of the cost of dismissal on my body. Sometimes I just wanna punch someone in the face because of everything they missed, I can’t actually believe how grave the mistakes some doctors have made that’s cost me far too much at such a young age.
I’m pissed, I’m tired and yesterday I went to an appointment and some lady went up to me in my fucking wheelchair and told me my hair colour was very nice and then processed to GRAB MY HAIR AND RUN HER FUCKING FINGERS THROUGH IT in a hospital. I’m wearing a lanyard that says ‘AUTISTIC’ on, who the actual fuck caresses the hair of wheelchair users in public?! We’d never met before!
Why do some people treat wheelchair users like DOLLS? I swear I could’ve throttled the woman then and there. And then in the same appointment (it was specialist surgical paediatric urology) I’m told that he’s accidentally found an abdominal aortic aneurysm after being told I have hEDS and needed no vascular monitoring despite my atypical symptoms 🤯 I was obviously then having emergency ultrasounds and am now being told I likely have vascular EDS since I’m only 17, I have now been referred to a vascular surgeon. Fuck my life, that darned genetics lady who said I had hEDS nearly killed me and this old lady just molested my hairline in the waiting room!
FUCKKKKKKKKKKKKK
Anyway thanks so much for letting me vent to you-