Headache

Day 20-POV: Living With EDS or HSD

I get up this morning and my shoulder cracks. At least I’m lucky, the joints of my fingers came back into place overnight. I have a headache. I’m thirsty. I need to remove the goutiere that I’m wearing to avoid bruxism and relieve my jaw. My jaw still hurts, though. My doctor told me to make an appointment with a physical therapist who specializes in TMJ. I get up and go have my breakfast. Acid reflux is hitting me and I still have the day to spend and finish revising my classes for my exams on time. Arg...

Day 21 – Representation Matters

Representation matters because I think that without the biases of doctors, we would be better diagnosed. It’s not because we are young, because we have a different skin color, because we’re a woman, a non-binary person, etc... that our feelings aren’t valid. hEDS and HSD do not have biological markers defined as for other diseases. The doctor must therefore diagnose according to a list of symptoms that are most often invisible to him. We don’t live with them after all. However, because of their biases, they do not listen to us most of the time, which often leads to medical wandering or even worse, often psychiatric diagnostic errors with consequences for our health. That’s why representation matters.

Day 22 – A Resource That Helped

First, I would say the stories about the mighty as well as the playlists (chronic pain and disability). Then, it’s the website of the elhers danlos society that gives interesting advice. Then I will look at the websites of associations specializing in EDS and HSD. But the first two are more than enough in my opinion.

Day 23 – What Earlier Diagnosis Could Change

Early diagnosis would help with mental health already. But I think that, at the same time, to reduce the time spent on medical care, we should improve the way of announcing the diagnosis. I don’t know about you, but I found the diagnostic announcements very traumatic because they just say: "you have X and goodbye." There are no explanations given. For me, my diagnosis of HSD was shocking because the doctor didn’t even tell me or my parents, but I learned it by reading a report from the appointment with this specialist.

Day 24 – Something I’ve Unlearned

Sometimes, despite everything you are told, just trying is already enough. Taking one step after the other, even when very small, is enough. You were just able to clean the window of your room but nothing else, it’s OK. Your house doesn’t look like a Pinterest board, it’s OK. You feel good in it, that’s fine. Trying is incredible, and if you succeed, even better. You fail, it’s not a big deal, maybe you’ve learned a limit or another way of doing things.

#EhlersDanlosSyndrome #Disability #Autism

I’ve learned the hard way that I cannot spend my whole life pushing myself past my limits. If I do, I will keep hurting and isolating myself, and eventually have to give up things I genuinely love.

To put it in perspective…
Growing up chronically ill, all I ever knew was push yourself. And I did. I pushed myself through long days until my joints hurt so badly I was in tears, only to come home from school and go straight to bed from exhaustion and pain. So yes—I’m very good at pushing myself.

What I’m learning now is that being good at pushing myself doesn’t mean it’s good for me.
I’m almost 30, and for the past three years, this has been my Monday through Friday: I drop what I’m doing to help coworkers, I take on all the walking tasks in the office because I’m “the young one,” and I average around 8,000 steps a day. That may not sound like much, but by the time I get home, my feet are throbbing, my tailbone aches, I’m running a low-grade fever, I have a wicked headache, and the thought of standing long enough to make dinner feels impossible.

Recently, I was on a date and got asked why I don’t like going out after work. For me, the answer was simple:
“Because by that time, I usually have a fever, and my body won’t let me enjoy anything else.”

Saying it out loud made me realize something…that’s not normal, and it’s not how I want to keep living.

I’m ready for my self-love era, my gentle era.
An era where rest isn’t laziness.
Where listening to my body isn’t weakness.
Where preserving my energy means I actually get to enjoy my life, not just survive my days.
Adjusting will be hard. I know that.

But I want a life beyond work. I want a to enjoy my hobbies again. And I need to start saving some of myself for me.
#ChronicPain #Glaucoma #Uveitis #MentalHealth

My head has been hurting quite a lot since 9am when I woke up. I took 2 tramadol and 2 CBD gummies and an ubrelvy and within 2 hours the pain went from 9 to 6 and I was functional... For a little while.
Maybe ~3 hours.
Now it came back and it's in my right ear. There's also lots of discomfort in my eyes but it's a slow burn. My wife just gave me 2 tramadol and 2 CBD gummies and an ubrelvy just like earlier today.
I don't have much faith this is gonna help me feel better but I gotta try something. I'm running out of options. My headache specialist got me on ajovy but I'm still getting migraines almost daily. The more meds I try and fail, the more obvious the cause is my exotropia.
I'm so tired of constant pain in so many different parts of my body. I'm tired of finally getting relief from one thing and then the meds triggered some other bullshit.
Next week I have therapy on Monday, an appointment with my Endo on Wednesday, and follow-up with my pain specialist on Thursday. My pain specialist is such a good doctor. I'm gonna ask her when we can do another round of hip injections or possibly SI joint injections. This pain is too much to handle. I can't make Pauley understand how much I hurt but I know she's trying her best. I love that darling stupidhead more than words alone can say but I imagine interpretive dancing might help.
My teeth hurt on my left side.