chronic illness EDS

Join the Conversation on
chronic illness EDS
2.2K people
0 stories
173 posts
Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
Don’t miss what’s new on The Mighty. We have over 20 email newsletters to choose from, from mental health to chronic illness.
Browse and Subscribe
What's New in chronic illness EDS
Community Voices

Little Bit of Progress.

<p>Little Bit of Progress.</p>
27 people are talking about this
Community Voices

Just bleh

I'm 31 and only just realizing the damage that's been done from, barely, living with #CPTSD . My life is just a shell and there seems to be no consistent way out. I live with chronic and debilitating physical and mental health issues. It's tricky to even go to the doctor's that I need to see. But I did make it to an appointment today to see if I qualify for Medical Marijuana, and I did. This should be a happy day and something to call a win, but was lost in the grief of not being able to afford the license or a trip to the dispensary. So the new problem is now with the one thing that could change my life completely as far as pain management, is seemingly unobtainable. I can't work. I haven't been physically able or mentally stable to work for 3 years now. My partner is also drowning in #CPTSD and can barely hold down his job. We are literally watching our last dollars fly out of our bank account with next months bills hanging over our head. We've only managed to get this far by sheer luck of stimulus checks and his tax returns. Everything we used to do was 50/50 up until I couldn't work. Now I'm just a black hole. I know I didn't ask to have health problems. I never dreamed I'd have #ChronicIllnessEDS but neither did he. We've been together since we were 15 years old. I wanted to work and have money and carry us out of this shit hole holler and out of this shit hole town, but I don't even know what my future looks like. If I can dream, it's beautiful, but it's mainly hopeless. I feel like it would've been better, for mostly everyone, had my mother just got an abortion instead of having me. But sadly, I made her life monitarily easier as I was her fast track to governments housing and food stamps. Not that there's anything wrong with that in general, but having a kid for that purpose just to abandon later in life bc I was too "gay" to be under her roof doesn't sound like a fair option for anyone. (Long story short, my partner turned out to be trans so jokes on my birth mother) I've been in therapy for 3 years, which helps with about 2% of what I'm dealing with. And I don't really click with my therapist, but am too nervous that if I were to move on, I'd find a worse one. I'm so tired of fighting myself and my life situation, the brain fog, the abandonment milange, and emotional dysregulation. I'm not going to say I have it better or worse than anyone else. I'd never compare. I'm only expressing what I feel from a lived perspective. I miss the life I could have, the relationships that could've or should've been. I miss closeness and trust between people. I miss the family that threw me out like trash and taught me to hide who I was. The people I was taught to crap fit myself to. I miss being able to put up with emotional abuse so I could feel connected for a second with somebody. I miss not having to choose between my authentic depressed self or happy go lucky masked self just to be part of a toxic family system. None of this probably makes any sense, but I do not feel mighty at all. I feel toxic, heavy, disappointed, infuriated, sad and tired. I just want to make it instead of scraping by. I want to feel like I don't have to choose between my dogs heart medication or my medication or medication vs food or gas vs car payment or tuned out vs feeling present or lonely vs seen and heard. I don't exactly know what I want other than better than right now. If only I could just go back to not existing.

3 people are talking about this
Community Voices

Four White Walls and Spoonie Things

I’ve been bedridden for 1 year 8 months and 9 days.
I’m on an indefinite pause while the world whirls past me.
It sucks not being a part of any of it. Being separated from everyone in the stale, dark, and yellowing rectangle room that I’ve memorized. While my friends, who have all moved on with their lives, eat, drink, and get married. (Pun intended).
I love them all so much. And still; I deleted all my social media accounts so I wouldn’t have to scroll through and be reminded of what I can’t have. At least for a time. It’s just too painful right now. (Plus I just downright do not have the energy whatsoever.) I wish I could confide in them about this but even they have told me that they don’t fully get it. (You know, my health stuff since I’ve gotten so sick). While watching a chronic illness tv show, it had a very apt quote which was about having a group of ppl who are sick go through the same thing, and other ppl, no matter how much they care will not fully get it unless it’s the same thing. So that’s why im here now. So Hi! Nice to meet you👋🏼 I’m Kay, a Spoonie like you. Sometimes I sleep 18-20 hrs a day because I’m up literally alll night long from severe pain, and simply because my body literally is dealing with 14+ diseases. And the elderly care home I’m at (despite the fact that I’m 25 yrs old) is not able to give me the care I really need to battle it. But im doing PT and trying to learn to walk again so I can be among the living again. I’m not sure what, how etc that will mean since this is my only place to live and I have no family to live with in the state, so it’s in Gods hands from here. Before I was bedridden I was a lab assistant and worked myself almost to the grave. I kept telling myself I wasn’t sick because I didn’t want to be. At the time I didn’t have any confirmed diagnosis’s other than Lyme and multiple forms of co infections so I felt like that wasn’t enough to stop working long and hard hours. I’ve always had 1-3 jobs and ALWAYS felt super terrible physically, I just told myself I was fine and pushed it down. I didn’t want to be sick, I wanted to live life.
Lol. Look how that turned out for me. 😂😆 YET, at the same time, I’ve learned a ton and although right now is an extra hard season, each season Jesus has taught me something, and always kept His promises to me. ♥️🤗
In closing, here’s the thing.
I don’t want to be on pause anymore. I’m doing my best to hit the reset button, but just as all you spoonies know, holy crap, does chronic illness kick butt. But keep going just like I am. (Not that I’m anything special). Don’t give up fellow spoonies. If I haven’t thrown in the spoons yet, after drs trying to literally kill me by illegal treatment, shaming me for losing my voice and saying I am faking it, refusing to read my text when it’s my only form of communication, and so SOOOOO much more that could fill a full series, and if other ppl, ppl I’ve read about and have endured much hardship can handle a lot, then so can you.
WE can. Together.
(You probably saw this the other day but I accidentally deleted it..technical difficulties😅.So here it is, again.😆💫✨)
#EhlersDanlos #EhlersDanlosSyndrome
#MastCellActivationDisorder #Viceralhyperalgeia #HypothyroidismUnderactiveThyroidDisease
#Fibromyalgia #raynaudssyndrome #TheBendyBunch
#hypermobileehlers-DanlosSyndrome(hEDS) #PainfulBladderSyndrome #ChronicPain

14 people are talking about this
Community Voices

It was a normal day I thought, I helped my sister put down some solar lights, I carried a rocking chair across the back yard, then mixed about 3lbs of hamburger meat, and pattied it out for hamburgers.

I'm feeling completely exhausted, but accomplished. Long story short, the extra pain, more than normal starts when I lie down. No sleep is to be had. It's even more severe than normal...when I wake, I can't bend my fingers, it feels like my wrists are broken. When I try to roll over to get up, my hip and shoulder come out. The tears are in my eyes because its different this time, way worse than it has been in a while.

Once I'm able to get up, I grab the crutch I keep beside my bed, but I can't hold it like normal, because my hand won't grip, so I slide my thumb through the handle. My knees feel like they're going to fold backwards, my toes feel broke, arch of my foot feels collapsed, and like someone had a blanket party on my torso all night.

My wrist and fingers are swollen so bad they won't bend, my feet burning, with sporadic sharp burning pains hitting every part of my body. I realize I can't make it down the hall to the mom sees me and starts crying. Makes my heart start hurting as well.

Its been 6 days, and I'm still in bed. Was finally able to move enough to take a shower yesterday, but it flared my hands and shoulders up worse...but hey, I'm clean!

Who would've ever thought mixing hamburger meat, or the other simple tasks could sprain my hands, and destroy body like this, for this long.
I lie here wondering if this is it, what I've dreaded for years, will I not see or feel another decent day? I keep my faith in God because through him all things are possible! If he brings you to it, he'll bring you through it! Stay strong warriors!

Community Voices
Community Voices
Community Voices
Community Voices

How does EDS affect your mental health?

<p>How does <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7a00553f33fe991e01" data-name="EDS" title="EDS" target="_blank">EDS</a> affect your <a href=" health" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5800553f33fe98c3a3" data-name="mental health" title="mental health" target="_blank">mental health</a>?</p>
13 people are talking about this
Community Voices

Sprained angle, top grade

Hello, everyone. Hope you are all well. This is the first question I will be posting, as I just joined. I am excited to be here and speak with others who suffer with EDS.

I sprained my ankle about three months ago, had some hairline fractures on foot, tore ligament, tendon, other damage that wasn’t noticed, I’m sure. I had to use a chair for two months. This past month it seems I can walk some days but I’m very stiff in the mornings. Then if I do actually walk as frequently as one would in a day around the house, next day I have to stay in bed. I read it could take up to six months to heal but my ankle keeps dislocating because for a short while I whore the heavy boot urgent care prescribed. Only made things worse. #ChronicIllnessEDS #sprained ankle #Elhers #EDSHT #HypermobileTypeEDS

6 people are talking about this
Community Voices

What CAN you do today?

<p>What CAN you do today?</p>
2 people are talking about this