(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.

I was unaware tornado, I'm glad you have got this off your chest since this seems to be a pretty serious condition. If there was something I could do I would but I can only wish you full health and a prosperous life, if you want to vent any frustrations take them out on me, I'm a bitch =D

My dad suffers from some quite serious conditions too, including suicide pain (not sure of the medical term) thankfully it only lasts minutes and these conditions will probably reflect on me in time. So I can only imagine what you are going through, I hope all the medical attention possible is given to you to help sooth your conditions.

Best Wishes

I personally haven't experienced any of your anger, but I'm sure this will clear things up for them. I'm sorry to hear about your disorder and hope things are able to run as smoothly as possible.
I can comfortably say that you are one of the most intellectual people in this community and many others can back me up on that.

I wish you all the best;

I troll the debate section a lot myself and haven't came across you mention your condition before. It's a shame that it happens to the intelligent and respectable members of our society, yet Neanderthals who insist on smashing shit up get away scot free.

Actually, that's one of the problems I've been having. I've had issues with a rather difficult doctor who's been dragging his feet because he feels that I shouldn't be getting specialist treatment whilst overweight. Obviously the fact that I'm always tired, in constant pain and have multiple dislocations per day at this point doesn't seem to get though to him as he still hasn't realised that exercise is entirely impractical for me. Still I have an appointment this week with another doctor, I'm hoping to get referred to the genetic research lab in Liverpool for some testing. Both my sister and I are going, she has the same condition, and has started to show symptoms at only 17, she's no where near as bad as me but it kinda makes me feel guilty for complaining when I barely had any issues until my 20's.

To give you an idea of how bad it is sometimes, while typing this post I dislocated my left thumb, just by typing. Anyway, thanks for the sentiment. I'd rather not treat anyone as a punching bag, but still it's nice to have someone offer. I just think it's better to get this out this way than wait longer and explode at the next person to post in the "God vs. Facts" thread on a day when I've ran out of pain meds.

---------- Post added at 11:30 PM ---------- Previous post was at 11:28 PM ----------


I haven't mentioned it in the debate section, but most regulars in the debate section (including yourself) where invited to join my group "Serious Discussions" and I mentioned it there a few days ago.

I'd hate to be the stoner who says it, but honestly, this seems like a perfect case for medical marijuana. Trouble with pain meds, constant pain, and multitude of conditions/syptoms. Seems to be a perfect fit for you.

Wow that's quite sickening that you aren't getting any specialist treatment because you're overweight, doesn't he seem to realise that fitness like you said is pretty much impracticable for you? Unless there's a certain requirement when undergoing specialist tests then I see no reason why you are being refused the medical attention that you need. I can only suggest to keep on persevering on finding a doctor that can help your cause. Also if the pain is too much to bare then I would recommend asking for a prescription of morphine from your doctor, my dad currently has nervous system issues so he feels alot of pain in his legs and his feet and he's on a daily dose of the stuff,

The ironic thing is I'm one of the few people who can't use it as I'm severely asthmatic, if I smoked it I'd probably just land myself in hospital. In fact my asthma is pretty much the only medical problem I have that's not caused by Ehlers Danlos Syndrome. That said, I do know of other people with Ehlers Danlos that use marijuana medically and it's a big help for them so you're probably right. At the moment I use Remedeine and high strength Ibuprofen which seems to work for me.

---------- Post added at 11:49 PM ---------- Previous post was at 11:46 PM ----------



I'd hate to go back on Morphine. I've had issues with Morphine before, it's not a pleasant drug. People say you don't get withdrawal issues from it because it's synthetic but I can assure you they're very wrong. I've been clean from Morphine for 4 years, I'd rather not take it again unless it's absolutely necessary as I don't like how dependent I become on the stuff.

Everyone I know who has ever taken morphine on a regular basis has become addicted to it. Nasty, nasty stuff.

As for the serious discussion group, can't believe I forgot about that! I'll make sure that I'm active in there from now on. They really should make notifications with groups...

Damn. That sucks. Good luck bro. I hope it gets better. (if that's possible. i don't know anything about this :dumb