(adsbygoogle = window.adsbygoogle || []).push({}); It's been 7 weeks since I posted the thread titled "You must login or register to view this content.". In that thread I explained my medical issues and apologised for how I was treating people as I felt I was being unduly rude, patronising and insulting on occasion and while I hope people haven't taken too much to heart... I'm still doing this to this day.

I'd like to start off by saying again, please take what I'm seriously, this is a delicate subject and something that I share here not because I feel this forum can help me, you almost certainly can't, but because I need to talk about this to maintain my sanity. What I'm discussing here profoundly effects my life and will do so for the rest of my life, please respect that. One additional thing I would ask, is please don't idly comment that you hope I will "get better", I don't have the flu, I have a permanent, degenerative, genetic disorder which WILL KILL ME! My condition is fatal and there is no cure or treatment other than way of managing symptoms and lessening pain. While the sentiment is nice, all it does it make me frustrated because it's a sharp reminder that other people don't understand the burden of knowing that you will NEVER get better.

So, to fill people in, I have Ehlers-Danlos Syndrome Type 4. It's a collagen disorder, which effects connective tissue causing; chronic pain, repetitive joint dislocations, brittle bones, blindness, strokes/aneurysms/heart attacks, kidney failure, bladder failure, reaccuring migraines, insomnia, chronic fatigue syndrome, irregular body temperature, seizures and more. This is getting harder for me to deal with now, so if those still reading would indulge me I'd like to explain how I'm feeling only a couple of months after the last thread.

....well here goes...

...honestly, I think I've slipped into a depression at this point and I'm hoping I can work my way out of it. My migraines are becoming more severe and I'm having one per week on average now. When I am able to do anything I just sit around on NGU, YouTube and Facebook wasting time because I'm in too much pain to do anything else, and too tired to move. I haven't played a video game in 3 weeks as my fingers seize up too much now. I would like to go back and finish the Final Fantasy VII playthough I was doing, but I don't have the energy.

Over the past few weeks my fatigue levels have been higher than ever before, with me sleeping more than 12 hours a day, some days, particularly on migraine days, I have less than 6 hours awake before I feel so tired I need to go back to bed. Movement is becoming labouring for me, with walking being far more painful than I let on. I dislocate my ankles daily now, and they're painful so much so that I'm walking with a noticeable limp. Worse still my back has got so bad now that I'm often so racked with pain that I can't move and my right hip dislocates most nights when lying down so sleeping isn't as restful as it would seem. The scariest thing for me though is I think I've started to develop vascular issues and experienced my first minor aneurysm at the base of my skull, the pain was unimaginable, extremely frightening, and like nothing I'd felt before. This happened only 4 days ago at the time of writing and I'm still very shaken up.

If I'm brutally honest, my emotional state is shaky at the moment and I know it. I almost completely lack a sex drive at the moment and find I often feel I can't be bothered by social interactions outside of the internet where everything is by my terms. Yesterday I outright told the Job Centre than I am no longer fit for work. I'm still applying for work and claiming benefits, but I feel almost like it's fraud as I know I'd never be able to hold down a job in my state, but I'm not functionally disabled enough to claimed disabled living allowance. I really don't know where my life is going to lead me any more, and any concept of a normal life is pretty much gone for me now.

I'm not sure what I hope to gain out of making this post. Take a little weight of my shoulders perhaps. It's just it's clear to me now that my life is an uphill struggle and if the aneurysm tells me anything, it's that at only 25 years old, I have less time left than I've already had. It's my fond hope that I have the chance to raise a family. I feel I would have a lot to teach a child. It's becoming more and more distressing that this may not happen for me. My professional goals of working in genetics are long past, and I'll likely never achieve the doctorate I always wanted.

I think really what this is, is a way of admitting something. I'm admitting to you all, and by extension myself, that I probably don't have long left, perhaps 10-15 more years of being able bodied enough to look after myself, maybe another 5-10 years after that where I'll need constant care for basic everyday tasks. It's an admission that my life will only get harder, my pain will get worse, and my body will slowly fail me. It's hard to cope with this realisation, it drives me to fits of anger sometimes and reduces me to tears at others. Really, I think it's just easier to cope when there's a load of people knowing what you're going through... even if they can't help in the slightest.

I know this is the wrong place for it. NGU is a gaming site largely populated by teenagers, most of you have never contemplated these things and couldn't relate even if you tried. I don't expect you to. I honestly hope you're never able to. I wouldn't wish my pain on anyone. I'm just glad you took the time to read this because I'm truly scared now, and sometimes it feels like no-one even notices. I'll drag myself though each day, and my mood will improve, I've never been one to give up even when every thing's getting on top of you, but until I can truly come to terms with the issues I face I want to say this.

Thank you NGU for being the emotional crutch I've needed, and still need for the time being, you will probably never know how much you've all helped me and continue to help me even now, every conversation helps me take a step back away from my problems, and all the thanks, likes and positive posts I've had in response shows that my posts are honestly appreciated here. It's nice to feel like I'm contributing rather than becoming a hindrance, and it's not a feeling I get often.

Thank you all again for reading this long self-indulgence, I needed to get this off my chest. I hope I have a chance to involve myself in this forum for a long time yet and that my future posts are less bleak, for all it's faults, NGU's given me a lot.

You have my sentiments. It's hard to muster what to say. I hope the best for you. Life is cruel. I just read in the paper about a 12 year old boy being killed riding a bike. He tried to play chicken with a car, the woman who hit him, uncharged, but will have to live with the image for the rest of her life. She can't even look at her own child. She killed an innocent boy, who has yet to do many things with his life. In Florida, a drunk driver hits a car pulling out into an intersection. His mother was driving that car. Only he lives. So many people die everyday, it's just sad to think about it. Sometimes we only think about ourselves, and fail to remember that every other person has a life just like ours, wants, loves, dreams, family. Some babies don't even have a chance to live, they are aborted by their mother or suffer complications. I want to have children, but what's stopping someone from breaking into my house with agun while I sleep with my wife? What did the people on flight 93 feel? The USS Arizona? The beheaded French Nobles in the Revolution? The 7,500 Greeks to defend their home
from half a million Persians, to see the force and hundreds of thousands of arrows being shot at them?
How did THEY feel? Life is cruel. No one comes out of it alive.

I'm not sure if I'm getting at the point I want, but I hope your years on this Earth have been fruitful. You have experienced more than some. I'm sure they, the killed children, would of loved to reach adulthood. I wish you the longest life possible. You have my sentiments. We'll all rejoice in the promised land together, at least in my book. I hope this spurs more replies, I think people just don't know what to say.

I was expecting as much. I knew this thread would be difficult for people to respond to but honestly, I'm not expecting profound responses that make everything easier, it's sometimes just nice to know people out there know what you're going though so it doesn't feel so alone. It's not as bad for me as I make it seem. I have a loving family, close friends who care for me, I live in a country with free healthcare, I live at a time where I can experience art and culture, I can socialise over the internet from my own bed... there are plenty worse off than me, I sometimes forget that.

Anyway, thanks for the response.

My Youngest brother aged 9, Has quite a rare lung disease, Every time he inhales/exhales his lungs narrow making it increasingly difficult to breathe. I've been through the horrors with him, and he shares a large majority of the symptoms you have shown, although the brittle bones, migraines and dislocation aren't involved with his sickness. However, he's extremely fatigued & tired, along with being angry; I really do sympathise with you. He's angry most days as he is also restricted in what he does, But I personally allow him to vent his anger at me, even if it does mean getting a few left hooks. Your condition seems awful, And I really do feel sorry for you, Yes I know saying I feel sorry for you won't do much, because it does **** all with my brother If i'm brutally honest, But you have to vent your anger in one way or another whether it be online, offline, at your parents, whatever it may be, But get it out of your system. You can't live your life being angry, It won't make you feel any better about yourself. Above my brothers bedroom door, he has "Yesterday is history, tomorrow is a mystery, and today is a gift, that's why they call it the present," On a plaque. He cherishes each day, as he know's himself, his condition is life threatening and 90% likely to end his life before 25. You may be struggling yes, You might not be able to do the things you love, But your on here, expressing your feelings about being sick, which in my eyes is 100% acceptable, but you could, put your writing skills to use.

Begin writing; both a biography on your struggle, along with advice on how to deal with it. Enlighten others.
Write Music, Vent your frustration, Vent your feelings.

Who knows, Send that off to a publishing house, they read it, enjoy it, and maybe, just maybe you could live life much more comfortably.

This isn't nearly as bad as your condition TC, but over the last few years my asthma (provoked by other more confusing things) has steadily gotten worse to the point now that I can't do much more than sit at my computer all day. If I go outside, the car fumes render me unable to breath properly and essentially useless within minutes. If I do anything even remotely strenuous on my body, my asthma kicks in. As it also does if it's too cold, too hot... if I'm nervous(nervous asthma), etc. Pretty much means I can't do anything except sit at my desk and use whatever is in front of me.

Now as I said, I know that's not nearly as bad as your condition TC but you can at least take solace in the fact I too am restricted to doing near-enough nothing. I know how you feel, albeit on a smaller scale

I can't do anything but agree with you 100%. This topic is something that isn't really easy to talk about, especially
since the options of what to say are minimal. Even though this is going to sound really cliche (clee-shay), but there
is always something to smile about. My little cousin Russell passed away when he was only two years old. He was born
with Cerebral Palsy and several other degenerative diseases that inhibited him from even getting the chance to walk.
He had to eat through a tube that was connected to his stomach. And at the time, I thought my life was shit because of
one or more circumstances. After he passed however, I reflected with myself and thought, "How can I even compare my
little problems to what he was going through as a toddler?" He didn't know about the world and all he knew what to do was
smile. He was just happy all the time and to be honest, I don't think I ever witnessed him cry.

My point is, yes, you have a severe degenerative disease as well, that I truly sympathize for and I am personally
saddened because I experienced it with family. But, there's always a bright side, even though its scope is dim and seems
as though there's no reason to be happy, there is something out there worth smiling about. I personally hope and will pray
that you get to experience the joy of raising your own family, as it's something I hope to do in the future as well.

And regardless of all the teenagers on this site, you know you have the couple people like me and Sexy Solo for
example, that I'm sure would be glad to just talk with you if you ever need anything. Keep your spirits up.