Sooo much sympathy for all of you with RA.
A friend of mine has suffered very badly with this since she was born to the point it’s led to her having “twisted” hands and feet and struggling to move her legs/arms.
She too has had lots of ignorant comments over the years like “are they (the EXPERTS in her condition!) sure that’s what it is I thought only old people got it”
“Have you tried...” and yes all the fish oil etc suggestions. She’s actually a hcp herself plus she’s been dealing with it all her life, pretty sure if there were some “miraculous” treatment or even cure out there she’d be right on it!
Idiots!
@rainbowstardrops dd and I both also naturally curly. Dd far more than me and yes we’ve had umpteen comments of “is it natural” and yes I’ve felt like yea right I’m gonna get up crack of dawn JUST to curl a toddlers hair! Took ages to just get it relatively tame anyway! And it never lasted as dd was a disaster for staying tidy!
I’ve mentioned on here before the school photo where I’d sent her in neat and tidy hair tied up in 2 plaits, by the time she got the photo taken she’d taken one side out and it was wild! But I love the photo as it perfectly sums her up at that age!
She straightens it herself now (she’s 19) but only for nights out. For work she tends to tie it back or even put in a bun, but she wore it natural for Halloween works night out (forget what she was dressed as now) and they were stunned! Lots of envy too (it is gorgeous as is she).
Hers is SO curly it’s almost Afro style. But my ex is the same so I think it comes more from him.
I’m more waves and ringlets and I can easily straighten just by fierce brushing while I dry mine.
“But you don’t look ill.” Omg yes! Dd and I HATE This one. We usually get it when we’re about to use disabled loos (both have invisible - for now - physical disabilities) dd is naturally quite shy/introverted but even she is now quite assertive when it comes to needing to use certain disabled facilities - she also uses disabled changing rooms if she’s bad as she needs the bars/handles to stand up again, hard to do in completely flat walled normal changing rooms.
“But don’t you WANT to work?
You need to get out more.
Why don’t you join a group?
What are you doing to get better?”
Ugh! Yes yes yes!
Even on here!
Yes I’d LOVE to be able to work.
I’m housebound by agoraphobia caused by ocd I wish I wasn’t I hate it
I have but haven’t found them very helpful
Quite a lot actually every single day is a battle against constant physical pain, exhaustion (I don’t sleep well at all), anxiety, depression, fear. It’s also filled with exhausting rituals and the difficulties of negotiating a world that seemingly even with all the modern tech that SHOULD make it easier, cannot seem to cope with the nature of being housebound and having no support network.
Eg today I’ve received a refund in the form of a cheque. I can’t get to the bank and I have nobody who can collect it and bank it for me.
Regarding the sleep alone EVEN on here on a thread about insomnia some smart arse came along thinking they were a genius by suggesting “sleep hygiene” to us! A whole thread full of people with serious insomnia...no we’d NEVER have thought of that! 🙄🙄🙄🙄
@JustForTheTasteOfIt - same! I’ve even tried fake tan a couple times mainly out of curiosity - I don’t look tanned I look weirdly jaundiced! Nothing wrong with my skin colour thanks.