HelloJenni23 yeh come to Britain it’s bloody freezing here 😂

Keep your head up, honey! It is definitely difficult to look at the bright side of life when you are sick (especially if your health is getting worse), but always remember that there is light even in the darkest moments! Plus we're all here for you if you need a little reminder on how amazing life is now and then! We all could use one, and that's why we chronically ill people need to stick together! To be each other's hype-men! 😅😅

@@isthisnametaken6618 thank you ^^ I usually try to.. pretend I'm normal :P not tell many ppl and deny it to myself.. did work the past 11 years *^^* but.. when it gets worse there's this moment where it cannot be hidden or.. pretended not to exist lol I couldnt walk more than 3 min back then.. needed wheelchair to leave the house and walk further than the entrance door.. I had no power to walk up even 1 stair.. my dad did carry me.. my mom did buy food and try to cook for me even tho all did mostly leave me pretty quick after eating so I just slept to keep the food in XD and... now I dont have someone who will carry me up the one stair and cook for me.. this scares me more than sickness itself.. irgnorance of the ppl.. ok and the whole phisical shit too I cannot deny :P ow and how to pay bills.. the pension I can get is... not enough for anything.. when I did cry asking if there will be any help at the city hall.. they said me.. excuse me, theres nothing, you need 3 more years working to get more.. you should find a rich husband... GREAT thanks what a good advice! pffffffffffff radiculous.. as if I chose to be sick and not be able to go to work... even lately when I did end up in hospital... many times... no one woudl visit me coz... the timing wasnt right... they had holiday.. tired after work.. had to care for children etc...

@@lolaaaKa Lol I hear you! It is easier to just push the disease to the back of your head, and just try to deny it's existence! Except when you can't deny it anymore and are forced to face it! 😅 And that comment about you needing to find a rich husband is just the upmost of helpful isn't it? 😆

@@isthisnametaken6618 ow yea.. I'm very glad I did go ther and ask.. it changed my life.. best advice ever.. even better than the ppl who advice to stop taking medicine coz pharma companies only wanna money and make us sick to get our money.. if I did fast, God would heal me.. but I'm negative and refuse :P wonderful world.. always tries to make us smile XD entertaining!

Winter sucks

@@bmoreblondie6301 I miss Baltimore. moved from towson to KS 2 years ago

I'm sure Amy has done a video on dressings before you might be able to find it I cant remember what it was called though!.x

Erika Pinková - try using a Flovent asthma inhaler on your skin before putting any dressing/patch/bandage on your skin! I am allergic to adhesive but need pain patch so my pain doc suggested it and ordered it for me and it is miraculous!!!

Erika Pinková Amy posted some videos on her other channel about stuff like that! 💕

What do you need to know? I have some experience with them, and maybe I could help? ❤

What do you wanna know?

@@isthisnametaken6618 on how to minimise the dislocations

@@disneymad7957 I can help with that! Though take whatever I say with a grain of salt because the things that work for me may not work for you. You dont have to listen to these, or do what I suggest, I'm only trying to give you some suggestions that MAY help. ❤ Braces are a great way to keep your most unstable joints supported. Though you don't want to wear them 24/7 because it may cause your body to depend on that brace just to keep your joints in place. They are only a sporadic thing for when your joints are very unstable. If you're interested in braces, talk to your doctor. They can usually get you whatever braces need. Though if you are not able to get braces, or can't afford them (because they can be expensive) then there are a few other things that I've found to really help with pain as well as dislocations. Ice is your best friend! It will relieve pain in your joints as well as take down the swelling in them, sometimes preventing dislocations. A heating pad or heat pack is also good for this as it relaxes stiff muscles, usually preventing them from dislocating. Lastly light exercise. Doing light exercises that focus on specific parts of the body (eg. wrist curls with a light weight in your hand), can help to strengthen your muscles and ligaments to help keep your joints in place. Yoga is a very good exercise to do this with as it's not high intensity, and it's also a very relaxing exercise, so it helps relieve stress at the same time! Just try simple stretchs at first, and when you feel you are ready, you could move onto some more complicated stuff. But also don't do it if it causes you pain, or it causes your joints to pop out. We're trying to keep them in place here! That would just be counterintuitive! :P Sorry this got so long! I didn't mean to write a whole novel about preventing joint dislocations! 😅 I hope I helped you in some way, and i hope these suggestions help keep those darn joints where they should be! :P And don't let the EDS drag you down too much! There is always fun and laughter even through the hardest of times. ❤😚

@@isthisnametaken6618 its ok thanks