I have dysautonomia, ask me (almost) anything :)

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At the moment not a lot. Making sure I drink enough and eat regularly is probably the main thing, and just making sure I'm not standing up for long (obviously), not too warm, stuff like that. I guess I'm technically still on meds for it but they don't do anything! I can normally tell when I'm going to pass out and feeling bad for a couple of minutes before, but if I do the main thing is just making sure I'm lying down as then it's faster for blood pressure etc to reset. Don't worry I'll try not to do it next weekend! :tongue:

Does that mean you can't walk very far either then? Kinda sucks the meds don't really help.
Please don't :tongue:

Reply 21

furryface12

Sorry for the late replies :redface:

Original post by Pathway

Oh no! That's kinda embarrassing. :colondollar:

Ahh, oh well. I've probably experienced more embarrassing things - fainting in public is pretty embarrassing, :lol:

No gowns, no problems. :rofl:

Oh, that's so interesting! I know the the medical alert charity that trains dogs can actually train already owned dogs - perhaps something to look into? Can get the link if you like? I dunno if I'll go through them though, there's a different charity that does assistance dogs for my primary disability, so I'm pretty sure that they know about comorbidities (they also do MH things too, but you need a physical disability to get approved). But yeah, I've been looking into it a lot, especially as my health is going down the toilet pretty quick. :redface:

They do medical alert necklaces as well? Would that be better than a bracelet? I carry a medical alert card in my purse, but haven't got any jewellery as of right now (too much going on lol, will get round to it in the future). I don't go out alone though, it's more like if there's an accident or whatever (catastrophic thinking, amirite?). I do sometimes give the card to new health care professionals though, because it explains things pretty well. :lol:

I'm lazy with explaining now. :rofl:

So perhaps a necklace with a small pendant and then a card in your purse could work? :dontknow:

I find heavy necklaces aggravating that's why I'm going for a bracelet instead. :redface:

That's so bad that they discharged you! :eek2:

That's what my GP was like when I first got diagnosed with my "primary" disability (idk how to explain this, but yeah). is he willing to learn from you or research it himself? My GP is great now, he knows so much and is really good when I ask about issues or need referrals. How is your GP with referring you? Definitely push for a referral back to cardiology!

I have discovered that. Also that sitting down in the middle of a supermarket/street/wherever I have to be is far less embarrassing than the alternative and less painful too. Now an expert at finding random things to sit on :tongue:

Ooh that sounds interesting. I can't have dogs here anyway and she'd probably be a bit old but it's something to bare in mind for the future. Yeah it sounds good to get one that can do multiple things for you, or as much as possible. Yeah, definitely. Hope you can get some help soon, in whatever form :hugs:

Necklace would be better for me, yeah. Don't particularly like them either but far better than bracelets. Yeah I'm with the same :colondollar:

the GP here seems alright with referring and stuff, wayyy better than my home one anyway and seems to genuinely want to help me. I think he will read up on stuff a bit too. Glad yours is good! But yeah, might ask for that. Thanks :redface:

Original post by Kindred

Does that mean you can't walk very far either then? Kinda sucks the meds don't really help.
Please don't :tongue:

Yeah it does. I'm way better with walking than I am standing I think cus blood is moving, but then other conditions with pain and stuff make walking difficult anyway. So it varies but yeah :redface:

hopefully one day i'll get it more under control, it could be worse at the moment but definitely could also be better.

Reply 22

Kindred

Original post by furryface12

Sorry for the late replies :redface:

Yeah it does. I'm way better with walking than I am standing I think cus blood is moving, but then other conditions with pain and stuff make walking difficult anyway. So it varies but yeah :redface:

hopefully one day i'll get it more under control, it could be worse at the moment but definitely could also be better.

I hope so too.

Oh! One last question... Is there anything that people do which annoys you or makes you feel supported?

Reply 23

Pathway

Original post by furryface12

Sorry for the late replies :redface:

Necklace would be better for me, yeah. Don't particularly like them either but far better than bracelets. Yeah I'm with the same :colondollar:

Yeah it does. I'm way better with walking than I am standing I think cus blood is moving, but then other conditions with pain and stuff make walking difficult anyway. So it varies but yeah :redface:

hopefully one day i'll get it more under control, it could be worse at the moment but definitely could also be better.

Same. I think having a wheelchair will be better for me, I usually hurt myself getting off the floor because my knees are unstable. :tongue:

Just actually getting over my issue of needing a wheelchair is difficult. :dontknow:

I think if they're trained under ADUK specifications then they are deemed a reasonable adjustment under the Equality Act so lawfully you're allowed to have them in halls/privately rented accommodation except in specific circumstances (like some hospital wards or whatever). I could've misinterpreted it though. :dontknow:

Glad to hear they're good with referrals! Do ask for the cardiology one when you see them next! :console:

Reply 24

furryface12

Original post by Kindred

I hope so too.

Oh! One last question... Is there anything that people do which annoys you or makes you feel supported?

Annoying me I think just for general invisible illness stuff- just because someone doesn't have a visible 'problem', doesn't mean there is one. I sit down on the bus because if I don't i'll pass out, yeah I might be young but that doesn't mean I can stand any more than whoever's asking me to move can! Feel supported, just when people remember I guess or take my word for it and work round me. I hate people having to do it as much as they do but yeah. I just need to sit down when they stand up, but if they can just let me quietly do that or find somewhere together then that's great :redface:

Original post by Pathway

Same. I think having a wheelchair will be better for me, I usually hurt myself getting off the floor because my knees are unstable. :tongue:

Just actually getting over my issue of needing a wheelchair is difficult. :dontknow:

Glad to hear they're good with referrals! Do ask for the cardiology one when you see them next! :console:

That sounds like me with so many things, classic multiple conditions problem :lol:

shouldn't laugh but yeah. Yeah, I can imagine that :s-smilie:

@chelseadagg3r and many others had/have the same dilemma (hope you don't mind me tagging you Chelsea!), it's a horrible thing to have to get your head round but hopefully once you do you'll start to have more freedom again. Even if you don't, if you're just in a bit less pain that has to be worth it :smile: