IamA chronically disabled man at 28; I have Ehlers Danlos Syndrome. AMA!

As a personal carer, how could I make it easier on you when carrying out your care?

The biggest worry for me is behaviour. I'm used to pain and there's little anyone can do for me there, but my behaviour and mood changes wildly. I have family and friends who are in care professions and I've heard horror stories about difficult residents. My biggest worry is that I'll become one. My mood is unpredictable and I'm very aware that I can and do take my pain out on others, as much as I try not to.

The biggest tip I can give is just remember it's not personal. I'm almost always angry and in constant pain. Occasionally I'll shout and swear at people even while they help me, or I'll focus on something insignificant and get extremely angry/upset over it; projecting my pain onto it. Often I'll then become overcome with guilt/embarrasment especially if I was rude/unreasonable with someone. Sometimes this will cause me to spiral into self pity and/or break down. Often the extreme emotions and/or crying will then trigger a migraine which makes everything worse... as you can see it's a spiral of self-destruction; and even though I'm aware of it I still find I can't control myself.

Having friends and people around me who don't take it personally when I get het up, who listen calmly even when I'm spouting rubbish, and make a point of noticing and telling me how they appreciate it when they can tell I'm in a lot of pain but trying to rise above it. That helps more than any physical help and it makes it easier for me to cope. I think emotional needs are probably more important than physical much of the time.

I can 100% relate to your situation. I know how isolating it is to have medical issues that keep you from being the person you once were. It sucks things have gotten so bad for you.

I too have a genetic disorder. I have Alport Syndrome. It's a disease affects a type of collagen found in the eyes, ears, and kidneys. Due to this, my kidneys are deteriorating and fast. I'm actually in stage IV renal failure. I've also lost over half my hearing.

The renal failure caused congestive heart failure which lead to a couple of strokes from which I was fortunate enough to recover almost fully expect that because of the holes in my brain I'm now epileptic. In my last seizure I ripped a toenail right off. And oh yeah, I'm also diabetic.

Once my seizures started I was unable to work anymore so I too am disabled. That was a major blow to my social life. I was able to still hang out with my friends a bit but once I had my first public seizure that was it, all my friends were gone. I want to blame them and often do, in my own mind, but I get it. Who wants to be responsible for that? Even my sisters only come around when they have to.

The thing is, I was really trying to be the same person I used to be but it didn't work that way for me. Because of my hearing I was already out of the loop on every conversation and people get tired of having to shout at you. And since my diet had to change so drastically, going out for dinner is nearly impossible. I became a glorified chauffeur before the seizures got really bad.

Speaking of seizures, I'm frightened every time I set foot out my door. Medicine controls them and my other issues mostly, but even paying careful attention to all my meds leaves me feeling like I'm on the verge of another seizure at anytime. I'm afraid to be away from my apartment for more than an hour for fear of missing a pill time.

So in the end I just sit here in a broken down Lazy-Boy recliner hoping today will be my last. Even with all your troubles I do envy you one thing. I wish I could just sleep my days away until it was over. But as luck would have it, I can't ever sleep more than about 4 hours a day. I get to be awake for my nightmare.

I'm grateful that I'm still able to take care of myself but it is getting harder. I have Peripheral Neuropathy from the diabetes which means nerve damage basically. I can't really feel my feet much anymore. That leaves me feeling off balance if I'm walking in too dark of a room. I feel like I'm falling over. I'm also getting fatter as the days go by because even mild exercise inducs seizures.

People like to believe every life is precious and meaningful. I have no friends, no wife, no kids. I can't and don't do anything to help others and I'm only going to get worse. I find no meaning in that. So anyway, yeah, soul crushing.

So my questions to you:

1) Does it help you to know others are hurting too or does it only make you feel worse?

2) Do you still have hopes and dreams beyond maybe a cure?

3) What would you like to be doing if you weren't ill?

4) Is your family around to help take care of you or do you rely on outside sources of help?

5) Have you thought about assisted suicide? I don't mean to to offend but if you're like me, suicide has crossed your mind).

Tl:dr My life sucks too.

Wow, that was quite a post. Thank you for being so open. As for your questions I'll answer as best I can.

1. It does help. While I'd not wish this kind of pain on anyone, I do like having people out there who understand. Some things are impossible to relate to without having been there.

2. A cure is not possible. I've studied biology, there's no way to fix me. Any cure for this condition would be genetic engineering to prevent the condition before birth. All I can hope for is better ways to handle symptoms. As for dreams... I have many. I'd love to have children, though meeting a woman who'd be interested is more than a challenge. Part of me still wonders if I could write a book, or program a video game. Something I could do from my own bedroom. Leave a mark. Honestly though, I try not to look to the future too much. While I've been told I have "maybe 10 years left", my heart could give out at literally any time. The future is a luxury not worth considering.

3. I'm honestly not sure. My condition has molded who I am, it's hard to say what I'd be doing without it. I was studying Chemistry and Forensic Biology. I'd possibly be working for a crime lab doing blood analysis. I was quite interested in that back in the day. I could also be doing computer programming or game design as I've always been a passionate gamer and I already know a few programming languages (Java, Python, PHP).

4. My family care for me, thankfully. They go well above and beyond what most would. They cook, clean, and drive for me; and as my benefits isn't enough they cover a chunk of my bills too. They also help with little things, monitoring my meds, going with me to appointments. I'm well looked after thankfully.

5. I've come close to attempting suicide, a friend intervened. It's a consideration I still keep in mind. I've been in some very dark places and sometimes the pain and the loneliness gets too much. Most close friends/family know I'm planning suicide. I know some day I'll lose full motor control, vision, and be unable to wipe my own arse, feed myself, or use a computer. When that happens I lose my dignity, and my link to the world. With a computer I can communicate, educate myself, keep up to date on world affairs, watch movies, play games... it keeps me going. I will do it eventually; if only because the thought of being in agony; bored, lonely, and unable to do anything about it. That terrifies me. I'm just hoping my heart gives out first. I know that's not a brave answer, but it's the truth.

I still believe every life is precious and meaningful, but sometimes the pain is too much; still I'd hate to hurt anyone by doing that.

I fear this is getting very morbid.

So what's wrong with your heart? Fellow person with Hypermolibity type, but I thought heart issues were from the other types, and even those can be helped with medication.

Also did your parent who has the Ehlers-Danlos have heart problems too?

Also earlier down you mentioned alternative lifestyles, are you queer?(Just curious, b/c I am)

The heart is a muscle like any other, so can degrade over time just like all the others. As for other symptoms, EDS presents differently in everyone. Typical type 4 traits can appear in type 3 cases and vice versa; it's just unlikely.

I present with the most extremely case in my family to date. My mum has it, but in her mid 50s she's only now starting to show any real symptoms. That said, my mums family had a tendency to die young (as in late 30s - early 40s).

Lastly, yes I am bisexual, though I'm only really focused on hetero relationships as I would like a family, (and there's no way I'll ever be able to adopt).

I'll start this with the question: what type do you have?

I have type 3/hypermobile and it's slowly ruining my life. I've just turned 18 and I've been in bed for three days following my first full dislocation after about a year of partial dislocations. Thank you so much for posting this, makes me feel like I'm not alone. I hope you have as nice a day as possible.

Same, type 3.

Dislocations get easier to handle. I have most of my trouble in my shoulders and hips. Dislocated ribs are painful (and I'm not even sure how that even works), my sister suffers with them more than I do though.

Thank you for the comment and you have a good day too.

Hey type III here! My shoulders and hips are awful too, I'm thinking I might have to start using a cane to get around soon, but when I tried using one it didn't really help. When did your health really start to decline? Have you always had trouble getting around? I've noticed in the past year a sharp downslide in my overall health, and I'm really worried I'll be left incapacitated. I know the rate of progression is different for everyone, but sometimes it just helps to hear other people's stories.

I always presented with weakness, even as a child; luckily I was a large tall kid so made uo for it in size. At 18 I was actively doing martial arts, at 21 I was starting basic TA training and walking daily. I started to feel the deterioration at 22. My asthma got much worse and I started using an inhaler again. At 23 I started to feel less fit and walking became painful. My shoulders began to dislocate. I started using my cane at 25. Hip dislocations because regular short after that. At 27 my hands and wrists started to seize and dislocate so I cannot use a pen properly. I expect to lose the use of my legs entirely before I turn 30.

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I've answered you further down. Are you aware that your comment keeps re-posting?

do you prefer pity or indifference?

I'd rather have indifference. Pity just feels insulting. That said, genuine sympathy or concern is nice; people can be compassionate without being condescending and when they are it's very much appreciated.

I feel like the truly amazing thing about the internet is that it really does give people a way to connect with others even when physical interaction with strangers/others in your situation becomes impossible through physical immobility. Even 30 years ago isolation caused by disability would truly have been total, beyond maybe watching TV.

Now for the AMA part: what are your favorite games to play? Who looks after you now? Have any of your friends from 'before' stayed in contact? Did any of them try?

Yeah, the internet is great it helps a lot.

As for you questions.

1. Depends what you mean by games. Tabletop/board games; I like Shadowrun, World Of Darkness, and Arkham Horror are probably my favourites. Video games; too many to mention, I used to like action brawlers such as Devil May Cry and 3D platformers like Sonic Adventure, Ratchet & Clank etc. I still love these games but I'm losing the use of my hands so my skills are lessening there. Now I tend to prefer story driven games, RPGs and turn based strategy. Really loved Mass Effect, Star Wars: KOTOR, Dragon Age Orign and the PSOne Final Fantasy games.

2. My parents mainly, although I have a few friends who lend a had when they can. I'm luck to have people who want to help me.

3. Not really, but then I've had to move back in with my parents so distance was an issue. I have on friend from university who I'm still close with as he lives locally; and he's actually one of my closest friends. Everyone else has become basically Facebook/Skype contacts. Pretty much everyone I know and see regularly are friends I've made in the last 3-4 years.

Is this genetic?

Yes it is, sorry I should have mentioned that in the OP.

Is this similar to marfan syndrome?

Yes, They're both genetic connective tissue conditions and very similar. Marfan Syndrome effects Fibrillin-1 Protein synthesis causing it to fold incorrectly, where as EDS effects Collagen production (which is made out of Fibrilin proteins amongst others) causing it to not form correctly much of the time. With Marfans all connective tissue has the same defect, where as with EDS the different connective tissues can present with different defects (or sometimes no defect). So EDS is more varied in symptoms, but Marfan is more systemic. You can have mild EDS for example which you could live life never knowing you had it, but severe EDS and Marfans are very similar in how they effect your life, and share most of the same issues.

Interesting. .I've often wondered if I have something wrong with me..I'm 38 and very tall six foot ten..and my shoulders come out of the sockets a lot,I have arthritis in my hands and knees, I have a heart defect but it's common, and I get very tired and I stay tired all the time..but as for you can you go outside and do things at all? If not have you checked into the occulus rift thing?

I'm sorry to hear you have symptoms, though at 38 you're probably not a serious case if you do have a connective tissue disorder. They tend to present in late teens/early 20s. Still, it might be worth seeing a Rheumatologist is you're unsure.

As for going out; I'm lucky in that I have friends who accommodate me well. One of my closest friends drives for me, which means I can go most places. In supermarkets and such there's motorized carts I can use, and occasionally I've rented a wheelchair for trips where I'd need to be on my feet, as I don't actually own my own.

I actually manage to keep an active social life. I have a board games night with friends on Mondays, and there's an alternative lifestyle club I go to on Fridays which is nice. It's not every week, but it keeps me active. I actually find the club very welcoming. People are more understanding and not as quick to judge disabilities in that environment, so that's good. I suppose the gay/transgender community understand what it's like to be prejudged more.

I'm quite excited by the potential of technology like Occulus Rift, but unfortunately I can never use it. I would get a migraine within minutes, and depending on the severity of my reaction, seizures. I can't watch 3D TV or use a Nintendo 3DS for much the same reasons and I have to be careful monitoring myself using computers, video games or even watching TV to make sure I don't overstress my eyes. It's a pity, but honestly, I couldn't afford Occulus Rift on disability benefits anyway so it's no big loss.

It's great that you have friends that are there and that you can have the club too..I've noticed that the "gay community"is more accepting as well my best friends sister is gay and I've been to several parties and it is a much more laid back scene in my opinion.have you heard of chive charities? Or the chive...its really great you should check it out. .I wish you the best man..k.c.c.o.

Thanks for your comments. You too.

Do preventative migraine medications work for you?

I'm honestly not sure, I think so. Migraines tend to come in clusters so it's hard to say how many more I would have potentially had in any given month. Currently I'm on new medication; Topiramate which seems to be working.

Do you ever get offensive or ignorant remarks like, "You look fine to me!"?

Not any more. I struggle to walk even with the cane so it's quite obvious. I do get people asking what I did to my leg, they seem to presume it's an injury.

I realize how late this, but have you tried marijuana? Like really tried? I'm fairly young and my drug regiment consists of mostly Nicotine and THC, and the occasional Vicodin on a particularly rough day. I imagine a doctor would prescribe me xanax or valium if I really wanted it, but I choose THC instead.

Even if you're not a smoker, it comes in oils and edibles and the like.

I have no reason to resort to illegal drugs when I get free prescriptions for more powerful stuff from the NHS. I've no doubt it works, hell, it's probably quite good; but it'd be a hassle to source and use, and I can't see it being any better than my current loadout. Also, considering I have to explain my medical situation, including pain management routine in order to be granted disability benefit; it wouldn't exactly back up my case if I was a chronic pain sufferer who doesn't recieve pain medication.

I'm 24/type 3, so I'm especially interested in how your symptoms worsened/what to look out for.

I was diagnosed with EDS and dysautonomia at 17, but besides dizziness, heat intolerance and trouble with intense exercise I didn't really have many issues. The thing is, this past year I've felt like even walking between classes makes my legs feel really, really painful.

Doctors have said that it's probably due to lack of exercise, but it doesn't make sense to me to feel this way now considering that I've never been really active.

Does this sound familiar to you? How did things start to change 5 years ago?

Thanks in advance.

Hey, not OP, but got the same shit, though not as bad. Lots of people seem to develop issues in their mid 20s. I used to be a long distance runner until 23, but was told I could never run long again. Once you're an adult your body slows down collagen production, and basically you don't heal as well. Its not just lack of excercise, as even with a strong body it can occur.(I could squat well over my bodyweight multiple times, and still couldn't walk a mile) excercise does help but it takes a long time to build up strength with EDS. Things escalated quickly for me, and others too.

Best advice, see a physical therapist to help you get an exercise program going you can do at home or gym. Make sure they know your hypermobility , no high weight low rep stuff. Best get on top of it quickly, its likely only gonna get worse from here for a while. Focus on strength and balance. Also keep your weight at a healthy level. Being overweight just makes everything harder.

Well said. I couldn't have said it better myself.

Hello There! I would like to start by saying that I suffer from Ehlers Danlos as well. I was wondering what pain management techniques you have found most effective?

I use Tramadol, Pregabalin and Naproxen as my primary pain killers. They seem to work well together though I get terrible acid reflux with them. I take Omeprazole to counteract that, but eventually you end up wth a dozen or more tablets and I sometimes wonder what the hell I'd doing to my internal body chemistry.

I find that regular showers help soothe my back/shoulders, swimming is nice exercise too as the water supports my joints and muscles. Then there's always relaxing in a hot tub which is very soothing (though not practical unless you own a hot tub).

Really. It's hard to say what will and won't work for each person. Everyone experiences pain differently obviously. I find water especially soothing, but that may not work for everyone

One technique I do find helps, odd as it may seem; is BDSM. Perhaps it's the endorphines or maybe it's just like having a very vigorous massage; but done properly (ie. not just some random person hitting you with a stick), I find I feel relief for days. Obviously it's not something I'd suggest lightly, but it's a quirky thing that I've discovered does, quite bizarrely, reduce my pain.

Do you have a regular partner you participate in BDSM with?

I have three regular partners, though I only "play" with people I trust. Interestingly enough, two of my regular partners are men; which is something I wouldn't have expected in all honesty. Another interesting thing; all my current partners are either married or in a long term relationship, such is the nature of the BDSM community.

I'm happy to answer questions about my involvement in BDSM within reason.

How much do you receive from your Disability check every month? Is it enough to live on?

£404.34 per month. Not even close to enought; however I'm getting the bare minimum. I'm still in the process of trying to get my claim recognised and get full disability benefit. On top of that I get nothing in rent support because I live with my parents and the government just assumes that all parents let you live with them for free. Very stupid.

When did you find out that you had your syndrome? Did you know from birth or did you find out later in life?

I was diagnosed very young, as a baby if I remember correctly. I've been tested genetically for the disorder.

Do you think that in a cosmic way you suffer so that others can lead good happy lives?

I sincerely hope not. The idea that there's some capricious cosmic entity keeping the universal happiness quota down by torturing people sounds positively sick. I'm an atheist, have been since as long as I remember. I find no comfort in the idea that an all powerful sick and twisted fucker decided to do this to me because it's part of his "plan", fuck his plan.

No, I don't have any reason to believe happiness and pain have to balance out, and I think it would be a truly sick and sad world if that was the case.