(adsbygoogle = window.adsbygoogle || []).push({}); Hi. I felt I needed to make this thread because, well... I've been treating some people like shit occationally and I'm sure a pang of it has hit this forum occationally. Over the past two months I've been coming to terms with a few things that I want to explain and I will try to keep this brief. I would appreciate it if people would be respectful in this thread, I'm putting this here so everyone can see it but that doesn't mean I want people to make stupid comments or silly jokes. Please show some respect and dignity and prove to me that NGU isn't the immature childish place I've been accusing it of recently. This is a very personal issue, please understand what this is like for me before deciding to take the piss.


OK, with that out of the way I'll explain what's happening. As some members, particularly those who frequent the debate section may know, I have Ehlers-Danlos Syndrome. It's a degenerative connective tissue disorder which causes, well, numerous medical issues. The most frequent problems it causes include chronic pain, repetitive joint dislocations, brittle bones, blindness, strokes/anuerisms/heart attacks, kidney failure, bladder failure, reaccuring migraines, insomnia, chronic fatigue syndrome, irregular body temperature and seizures. I'm starting to show a large number of these symptoms.

The fatigue and pain are becoming extremely difficult to handle and I find myself frequently angry. Due to other issues I found myself in financial trouble and was forced to move in with my parents temporarily. What was originally going to be only a month or two has now been over a year and unlikely to change soon. My medical issues are preventing me from finding work and I cannot reasonably support myself without help from family which is making me feel less than useful. I have recently been told that the Job Centre wants to put me forward for "work from home" schemes because they don't feel I'm fit for work.

I have a lot of worries. I expect to be in a wheelchair in my 30's, and I will likely need surgery many times. I'm feeling less and less capable and feel an overwhelming need to use what I know I can still use, my mind. Because of this I've been effectively trolling the debate section and because I frequently feel angry, tired and in pain, I'm not just showing my knowledge but being a huge dick about it in the process. This thing is, frequently I'm lashing out without realising it, and it's only minutes later I realise I'm just projecting my pain and anger on others.

As a 25 year old man I would like to feel I had some focus. While I'd be frustrated anyway as I'm living with my parents, unemployed and single, all things I'd like to change, with my current medical issues I can't change these things any time soon and I have no impetus to do anything truly positive.

Now, I'm not looking for advice. Trust me, it's not worth trying because I need to come to terms with everything first anyway, and I largely doubt anyone on NGU even knows what Ehlers-Danlos Sydrome is let alone had any practical ideas on how to deal with it and it's progressing problems. All I want to do is vent, to let people know why I'm being so short-tempered and to hopefully account for my volatility. In a round about way this is both a warning and an apology. I don't mean to take my frustrations out on the people here, and while I'll probably do it on occation again, I apologise. I'm afraid being a calm man just isn't possible for me right now, at the very least however, I'll try to be reasonable for the most part and I hope you can all bare with me. What I'm going through isn't easy and it frightens me at times.

Thank you all for reading this, it's good to get this out.

The condition is degenerative, there's no cure and all treatment for the condition is symptom management. As depressing as this is, I've know this condition would get worse and would likely cause my death for years. It's a chronic condition which shortens lifespan quite significantly, I'll be lucky to live past 50. To be honest though, I'd come to terms with that, after all, hell, 50 years is more than some people get. I just wasn't expecting all the baggage I've got to deal with as the condition gets worse. I think I'd sort of rationalised it as it just being this thing that would make my bones a bit weaker and I'll die a bit sooner than most people without really preparing myself for the bit in the middle.

Still, thanks for the comment. I know most people will just feel useless reading this thread and I'm not expecting anyone to say something amazing to make everything feel better, I just feel good to get it off my chest and talk about it a little, that's all.

Well they say eating healthy and exercise can help cure cancer, but idk since you said your not in the position too . I would like to think that eating right and staying healthy can almost help any medical problem, but this is not true in some cases. I'm surprised that this condition is not high on the list of cures. AIDS & Cancer are the top two. I don't see why your condition isn't right next to those.

AIDS is a worldwide epidemic with millions of people infected and Cancer effects about 30% of all people at some point. Ehlers Danlos Syndrome effects about 0.001% of the worlds population, that's 1 in every 100,000-200,000 people. In the UK, there's only a little over 300 reported cases in the entire country with maybe another 50 or so undiagnosed. With a condition this rare few people are likely to start charities for it or raise much in awareness for it. Saying that though, the actress that plays Izzy (the girl in the wheelchair) on Coronation Street (a soap opera in UK) has Ehlers Danlos Syndrome so they wrote it into the character. That's helped raise a little awareness, although most people just assume it's a condition that effects your legs because she's in a wheelchair so get a little confused by the fact that I can walk. I'm 25, she's 36... give me another decade and I may be joining her in the chair (or if I'm lucky I'll have one of my own).

Damn well wouldn't Stem Cell research help? I assume it would being EDS is a cell mutation correct?

Unfortunately no, EDS is genetic so there's nothing stem cells can do to help with this. However, stem cell research could potentially cure loads of other illnesses so it's definately worth funding, hopefully people will see this and legalise it in USA soon. The best I could expect from stem cell research is they may be able to prevent some of the symptoms.

That sucks in so many ways. There really isn't much to say...

Whomever those people are who really believe that are complete morons. lol

I had a bad drug problem for nearly a decade and morphine was my drug of choice and after awhile of using it I got to the point where I couldn't function unless I had it. I have been clean for over 3 years now but still have cravings for it so people believing that "synthetic" means they aren't addictive are just idiots. lol

Anyway, as for your issues......I am truly sorry to hear about it and we will keep you in our prayers.

ive only had morphine once and that was after i had surgery and i was tripping balls

You can always turn to edibles; not just brownies now a days, pretty much any food/drinks can be laced. But, if you're good with pills, stick with them. From what I've seen you're a great and very intelligent man and I'm sorry to see you with the hand you've been dealt. Either way you go about dealing with this, keep on keeping on.