(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.

Originally posted by TornadoCreator

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.

Honestly, this is most incredible post I have ever seen since my stay on NGU. At the same time it helps me understand your beliefs in a much more expanded way at the same time.

I just did a little research on the syndrome, I won't bother to ask which form you have out of respect. Once again, I have not the closest idea to what you are going through. I myself was fortunate enough to be born without any type of medical problems.

I will do my best to keep an open mind, and to shift my paradigm when I read your posts or otherwise from this point on, and would like to thank you for opening up on such a large issue.

I just want to keep everyone informed as to what's happening. I'm being put forward for the genetics testing lab, however due to cuts in the funding it's going to the surgery partners for review before I can get any treatment or be referred to a specialist. Which means after all this there's a very real chance that I'll recieve no medical care at all for my condition. If that's the case I honestly don't know what I'll do as I'll be needing regular CT scans and gastro-intestinal scans as well as ultrasound monitoring for my kidneys and on private healthcare that would be about £3000-4000 per year just on the tests, that's not counting private consultants who charge £100+ per appointment and I'd be needing to get monthly check-ups... put simply, without the NHS, I cannot deal with this condition so I'm feeling rather down at the moment because it looks like I'll have to go through long drawn out appeals to get seen by anyone which honestly, I'm not really well enough to put myself though.

Really, I'm just hoping the review goes in my favour and I get granted a full genetics test and referral. There's not much more I can do at this point.

Wow, what a heartfelt post. I feel for you Tornado.

OK, I said I'd keep everyone informed so here it is...

...as you've probably noticed I've not really been online much these past few days. I've had some personal issues and I feel it helps me keep track of them and power through them to talk about them, and it keeps you guys informed if I disappear for a few days.

My left shoulder had some issues, I was in hospital last week believing it to be a sprain of the muscles in the back and neck. I've been back in hospital since and there has been long term joint damage. I'm seeing another doctor on Friday to get referred to a physiotherepist for standard treatment concerning my joints in general, and I'm also being referred to a surgical specialist to take a look at my shoulder. I'm expecting them to suggest pinning the shoulder, if so it'll be my third major surgery.

Anyway, I'm back, and while I'm working through the pain, I find typing at a computer aggravates my back and neck and I still can't lift my left arm over head height so as you can imagine I'm not online as much now. I've been relaxing over the last few days, started replaying Final Fantasy VII, so I've managed to keep my mind off the issues. Still, I wanted to pop in and say 'Hi' and let you know how I'm progressing.

PS: I've bookmarked both Debate The Hate and We Live 2 Game, and will make an appearance when I'm free and able. I've not forgotten about you guys.

I feel ya bro, I always enjoy reading your post's as I take in lots of new info from it Keep posting :y:

Well it's been three weeks since my last post and over a month since I was posting regularly here. Sorry I've been gone so long guys.

Well, I should start by saying I'm OK, but I have been in hospital recently. I'm going in again this week for thyroid exams and then I'm off to see a rhumatologist and physiotherapist. I may need surgery in my shoulders. I'm in a lot of pain currently, but most debilitating is my fatigue. I often sleep 6-7 hours during the night from a little after midnight to a bit before 7am then find I'm so tired thoughout the day that I'm sleeping during the day, having a 2-3 hour nap around the midday mark. I slept from 11am till almost 4pm today and I'd already had a full nights sleep. This lack of energy is making it difficult for me to do daily routines, even just the standard clearing up after myself (ie. getting clothes washed, taking out the rubbish etc) as I'm too tired to do anything still, I'm trying to get myself awake and motivated to do something so here I am posting again, if anything it'll keep my brain active as I'm doing very little day-to-day now.

gett better man

Hope you get better bro, I know how you feel kinda.

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can't even laugh
sad to hear OP