What was your poison prior to EDS ruining your life? Prior to my diagnosis it was boxing, muay thai, seven years of full comtact karate and a bit of freestyle wrestling
I’ve been told not to go back if I don’t want to wind up crippled/with joint replacements at a very young age. Though I’ve been informed this may be the case regardless.
Considering I already have degenerative OA in my hips, left shoulder and potentially left knee and right hand… I’ll try go back albeit bery conservatively and on my own terms provided I can get strong again.
EDS is unfortunately degenerative. There are a number of individuals on my moms side who have died from spontaneous anyerism or arterial rupture, so I’m going to seek out genetic testing to ensure I don’t have vEDS… because if I have vEDS I’ll be dead in 10-20 years. Thankfully my presentation doesn’t alogn with vEDS… but better safe than sorry.
Just about form of EDS can have fatal consequences… but vEDS is particuarly bad. @startingagain do you have stretchy skin?
Knock on wood… i’ve never had arterial rupture, colon perforation etc. hEDS is bad enough given that it is degenerative and can cause cardiac arrhythmia, spontaneous coronary artery dissection, prolapses, charai malformations/pathopogical craniocervical instability that can lead to paralysis (odds of developing charai malformation are 20-30%) .
If I’m going to wind up in a world of pain (already the case) irregardlees of what I do (caveat being will I wind up like this at 50 or 35 etc)… might as well have fun now as the future is uncertain.
Statistically, 40% with hEDS wind up on disability… one study looking at women with the disease found that 60% had suicidal tendancies and 30% had actually tried to commit suicide… pain being the biggest influencing variable.
Given how bad things are now… I have no interest in seeing old age. Nor do I ever wish to have a child given that there is a 50% chance id pass this disease onto my child. Not that I’m capable of having kids to begin with (fertility issues). Turns out 30-40% of men witj EDS have pituitaey insufficieny and hence… hypogonadism is common.
Such a crushing blow. I used to live out a hedonistic lifestyle as I was young, immature and just wanted to have a good time… all the time…
Now that my future is so uncertain… I mignt as well revert back to my old ways as my duration of time for which I’m actually capable of having fun with is potentially limited. Need to make the best of what time I habe left before I’m confined to a wheelchair or mobility scooter.
My hedonism won’t hurt anybody aside from… myself…
Finding a decent woman who would be ok settling down with someone who is infertile, someone whose body is actually falling apart due to a genetic, degenerative disease, someone who will require more and more care with age… monumentally difficult task unless I voluntarily withold the truth which I think is unethical.
Still continuing with pursuing academia… but how long I’ll be capable of work/strenuous study… who knows
Especially given how pain management is frowned upon here… if I can’t get help due to extremely strict guidelines set in Aus (way stricter than CDC guidelines in US)… I may have to resort to going to a methadone clinic.
Many Aussies with EDS have been forced into going to these clinics which is fucking absurd. Ridiculous to think I’d have to go down to a methadone clinic… or a clinic that provides opiate substitution therapy to heroin addicts JUST to live a life where pain from constant sublaxations, tweaked joints, neuropathic pain from nerve damage etc doesn’t run me into the ground… because chronic pain patients here are punished and treated like shit
I’ve had pharmacists refuse to fill my scripts even when handing in a script for the lowest possible dose for X brand of painkiller… but filling a script for 100 tablets of amphetaminrs with 6 repeats in a country that has the highest rate of methanphetaminr use in the developed world is fine…
My moms friend (doctor) was audited and had a horrific time going through court, answering to the medical board because he was CAUTUOUSLY prescribing opiates to those with intractible, severe pain. Patients who were using as a last resort because nothing else helped.
That’s how strict we are… and at that, for every 20 tablets… you need to go back for another refill (to the doctor, not the pharmacy).
But if you are an addict… can get months worth at a time. If you are an addict it’s all “you poor thing! Here’s a metric fuck ton of painkillers!”
Now there’s even more push to make methadone, buprenorphine etc even easier to access if you are an addict.
Don’t get me wrong. Opiate substituion therapy in addicts dramatically reduces rates of relapse, reduces mortality etc. But our government has decided to go after patients with degenerative diseases, non malignant cancer paiin etc just like America did for a while… BUT America is changing its tune after realising how punishing the wrong demographic here actually led to MORE addiction, spike in suicides etc…
Australia aa per usual is doubling down via the usual Aussie knee jerk nanny state reaction.
So backwoods… really pisses me off…