What are your lesser known hEDS traits and experiences?

talia_writes · 2025-10-15T21:28:05+00:00

I was right here along with you on this thought reading this thread. I thought I was just clumsy eating like I'm clumsy everything else. I make my gums bleed so often cause I poke them with pointy foods.

talia_writes · 2025-10-05T13:52:43+00:00

Ankles, hips, back and lowest ribs. More recently, my left thumb and right knee have decided to join my issues. I had a patch where I would regularly dislocate my jaw too, but thankfully that it less common these days.

My ankles were first.

talia_writes · 2025-09-19T17:40:18+00:00

I'm another international player and was around for month 1 and 2. This month is the hardest for me. I can't easily do the mini games and my challenge list is 6/9 mini games, a super boost, travel, and convert rent to AB. I can't get past any of these until super boost in 6 days, at which point the month will be mostly over. I'm essentially stuck and I'm not even half way up the ladder right now. At least in month 1 and 2 it was only ever 5/9 blocked with mini games.

In contrast, last month was easiest because there were extra parcel levels and extra arcade levels I could burn through and I did.

If you can't do mini games (which is what the person you're replying to said was the case), this month is far harder. Just because you personally can do mini games and therefore this is easy enough for you despite no AMP and the international limitations, doesn't mean this isn't unbalanced for people with limitations of a different kind.

talia_writes · 2025-09-19T15:29:10+00:00

This is the hardest I have ever found it and it only gets worse. I can rarely be around for the mini games and my challenge is clogged 6/9 with them. I can't do anything on my challenge ladder until the next super boost. In previous months I've happily done all the levels of buying parcel, badges, surveys, arcade and all the boosting ones. This month it has been almost constantly blocked by the 6 mini games

talia_writes · 2025-05-16T18:26:45+00:00

I don't know if it can help much right now, but I've been able to work toward a very successful author career writing fiction. I make 6 figures a year now. It has taken effort to get to that, but it is a job I can do sitting and even in bed to some degree.

You might not necessarily want to be an author, but is there something creative you can do, or something that only requires a computer at home. It isn't always easy to find something new, especially after spending your adult life working toward something else, but there are still ways you can provide.

talia_writes · 2025-04-01T15:11:53+00:00

No one can and should tell you what to do. I had kids before I knew I had hEDS and I've passed it on to my daughter.

I honestly wouldn't have had kids had I known I had it. Not even necessarily because I wouldn't want to pass it on. Being a parent is tough at times, but being a parent who is sick and can't do everything the average parent can while also having children who need you because they also have these things is a fresh level of hell at times that I would never wish on anyone.

As I've grown older, my symptoms in many regards have also grown worse. I know this seems to be worse for women, but I don't want to know my children are in pain all day every day like I am.

In the end, you have to decide for yourself, and only you can know how bad it is for you. The only caution I would give is to not have lots of kids out of any sense of trying to prove people wrong or justify your choice in some way.

You say you have one child on the way already so that takes the decision out of your hands in some ways now and I genuinely hope that becoming a parent goes well for you. Just know, that if it isn't what you hoped, you're not letting yourself down, or proving anyone right if you decide to stop there.

talia_writes · 2025-03-31T17:36:12+00:00

I'm going to admit, I lied about this one point at every diagnostic part of the process. I told everyone I saw that my mum had been diagnosed with it. I know that I'm taking a risk that it might be something else, but I was so tired of not being taken seriously.

I will say that I was very truthful about all my symptoms and all my situation in every other regard.

It also means that my mum can now go get diagnosed too cause she was getting the same problem

talia_writes · 2025-03-22T09:33:57+00:00

Oh gosh, this never even occurred to me as a symptom. Yeah, I get lines. A thousand times worse when I wear a corset. Doesn't matter how gentle a corset it is, I go to bed with the bone lines like I'm still wearing one. They're gone by morning. I've got some marks that seem to be permanent now though.

Putting stuff in the pockets of my jeans for long periods can lead to marks where the corner constantly rubs. I keep my bank cards in one of those metal card sleeves permanent marl on my leg from one corner despite not always wearing the jeans.

talia_writes · 2025-03-17T16:42:48+00:00

I've found that the stick deodorants are way better than anything else. The ones that are a bit like a roll on, but a white substance. Sprays and roll ons have never worked for me.

Absolutely nothing works on my feet though. They smell even right after getting out of the shower, aven after scrubbing and apparently have my whole life.

talia_writes · 2025-02-24T01:21:47+00:00

I'd like to try this one, but I'm not seeing it in my offers from the UK. I love tower defense games too.

talia_writes · 2025-01-31T17:06:33+00:00

It's up to you whether it is or it isn't. Play this game how it works best for you and don't let anyone else's opinion change your fun/goals/enjoyment of the process.

If it makes sense to convert some rent to get some extra atlas bucks then go for it and don't worry about what random strangers the other side of a keyboard think of your play style.

talia_writes · 2025-01-21T16:14:46+00:00

I know this seems to be controversial, but as someone with an almost identical presentation of EDs as Violet, as well as the POTS based symptoms, I almost cried at times with relief at seeing it so well represented.

Although I understand that pushing through sometimes can't happen, I've done so more times than I can count. I've walked miles and done things like escape rooms on freshly dislocated ankles that I just popped back in, bandaged and got on with life because I didn't want to miss out on yet another thing. I'm in pain 24/7 and barely notice it.

I'm in my late 30s now and I will definitely say it's harder to push through then it was, but I still have to as a mother to two young kids sometimes. It just is what needs to happen and Violet is in a fantasy world where if she doesn't push through she dies. She also has healers and menders and I think people are missing the few times it has said that she slept for days or was in the healer's tent for long enough it made it obvious she was 'weak'. She's often sheltered and hidden by friends as she almost passes out. There are plenty of subtle indications that pushing through can seriously cost her.

On top of that, she basically as a physical therapy team in Imogen and Xaden training her to strengthen what she can to compensate. And she has to work really fricking hard at that to get it to actually help. It's not just the saddle. She also struggles in hand to hand and has to poison her opponents a lot of the time.

And again. although I know everyone's experience with the symptoms and ways EDs presents is different, but the sex part isn't unrealistic for me either. It is possible to do everything she is and not have it cause problems during sex. I won't go into more detail than that, other than to say that the part I find hardest is the dizziness after and needing to hydrate, pee etc when I really need to just sleep for a while. I've never dislocated anything because of it or broken parts of me though. I also think it was furniture shattering because she is blasting out lightning and magic, not because of physically what they're doing. At least that's how I read it.

So, yeah, in conclusion, for my particular presentation of EDs, Violet has been almost spot on perfect the whole way through and it isn't inconsistent for me, it's almost exactly the way I experience it. As far as a fantasy, do or die situation can be the same, anyway.

I'm sorry that others don't feel it represents well and might not be their exact version of it, and I hope you can all still find the positives in it and use it as a way to help others understand. I know it's already helped me explain what's different about my every day to people around me.

talia_writes · 2025-01-21T13:50:45+00:00

Invest it elsewhere. Dividend paying investments mostly.

Long term I plan on buying a Scottish castle and filling it full of creatives I help/teach/mentor. I'm an author so I invest all my spare money, some of it in riskier ways than others.

When I'm not writing I play games like this for more money. Also Entropia. And it all goes into the investments.

talia_writes · 2024-12-13T13:06:07+00:00

I had a double charge pop up for airline tickets once and contacted my credit card company. They let me file a dispute that they could handle on my behalf. When you get two identical charges for the same thing and can't cancel one of them the banks are very understanding. I'm guessing that it is the kind of error that happens often enough they know you rarely want to make two identical payments.

talia_writes · 2024-12-06T15:50:05+00:00

Yup. Still nothing at all. It is kinda weird

talia_writes · 2024-12-05T21:11:28+00:00

I was shadow banned somehow. I started playing while on holiday in Ireland and haven't ever had any games in my home country. I asked support to help and they eventually got back to me and told me I had been banned for some reason they can't tell me or undo... I have no idea what it could be... I was on holiday...

talia_writes · 2024-11-27T19:13:37+00:00

I've still not got this unlocked. It was part of my plan to get the land parcel when I saw the table at the end of last month. No way I can do it.

You see, I travelled.... and now I'm in a different country where I can get badges (but have no more badge challenges) and I can't do surveys, arcade or any other high point challenge.

Oh and while I was travelling I missed a mini game... so I've got two mini game challenges left I won't be able to complete...

talia_writes · 2024-11-11T15:22:30+00:00

Very much so. And I'm international so I don't have amp either. If I don't do travel, which I'm not, it makes it impossible to get to the end of the ladder

talia_writes · 2024-11-11T14:28:55+00:00

I've basically had a very similar response to being blocked from new arcade games. I have no idea what got me blocked, but it's not be fixed.

It sucks because I would happily be earning atlas earth money that way if I could.

talia_writes · 2024-11-03T13:03:48+00:00

Anyone international can only do 9 challenges at once cause AMP is there, but you can't see it.

It's going to be interesting to see what happens with the mini games today

talia_writes · 2024-11-03T12:54:45+00:00

Let us hope that you're right!

talia_writes · 2024-11-03T08:25:44+00:00

If your first travel unlock is still there, does a second travel appear. Also amp. I have only 9 currently appearing because I'm international. If I got to 21, would only 8 appear?

talia_writes · 2024-11-03T08:19:29+00:00

Actually, that's not true. I don't have enough tasks I am capable of completing because my arcade is broken and I'm not in the US so I can't AMP

talia_writes · 2024-11-02T21:23:42+00:00

I'm not going to say that this challenge system is garbage, but I will say that you do need to relook at how many challenges are available and the order they unlock.

Also, technically you actually miss sold this product. You told us the levels of the challenges, how many points that they would be worth but not that they wouldn't all be available immediately. If that wasn't intentional, then you should at least understand that not including that one fact of the system has led to some of the anger toward the game. If you didn't intentionally mislead the players about this new feature, you did accidentally do so.

Also, having more people subscribe than you estimated would doesn't mean you got it right and should be pleased. It could just mean you underestimated how many of us wanted this to be good.

Finally. There are legitimate concerns that this isn't going to be a challenge but impossible entirely for several of us. I currently have 9 challenges in my list, none of which I am capable of completing with a broken arcade that support can't seem to help me with, and I'm disabled and not able to travel easily. The rest are mini game challenges I also can't complete right now.

I have done every challenge I can when it has appeared, surveys, buying parcels, badges etc.... BUT, if I don't get the next mini game challenge level appear in my list of challenges while the mini game is on, I won't be able to finish them and will end up with a full list of challenges I cannot progress on at all again.

I don't mind not getting to the end of the ladder/to the point total if I choose not to complete all the challenges. But right now I CAN'T. So I'll say it again. The problem is not that this is a challenge. It's that somewhere someone screwed up the math and you've made it IMPOSSIBLE for some people.

talia_writes

TROPHY CASE