Only just seen this! So sorry! Thank you so much Helen
means a lot!
Awww good vibes goat is cute! Thanks Lee!
On recent news, I've had my ESA assesment which was awful, I felt like i was being interrogated and as if she was taking my first answer and then not listening to my reasons why if that makes sense? Like she'd just got "mm mm mm" and you could tell she wasn't listening and wanted to get onto the next question and her tick box! Anyway, I find out in 6 probably 5 weeks now if I'm eligible!
Also, had my first and second physiotherapy appointment, first one was good! We sat and chatted about my Elhers Danlos Syndrome and what it is and what I've been doing (light Pilate's and bike) and she sounded really like, in the know about it or atleast like she would go away and look at it more and do some research etc! Anyway she said to make an appointment for the following week (last week) and she would do a joint assessment which she said would hurt but would allowed her to see what state my joints were in. Anyway, appointment came and although I knew it would be painful I was feeling positive. Had my joint assessment and she says my hips are very bad and my joints crack a lot (which I knew, every joint cracked when she tried it) anyway, she then goes on to say that "there's nothing I can do for you, all I can suggest is that if you want physio and help with your condition you should find a phsio that specialises in EDS" and she bascially had no idea what she was doing... She said that I should go back to my rheumatologists again and she referred me for talking pain therapy... But for physio there with her, she discharged me. So now..I'm waiting for up to 6 weeks for a rheumy appointment and also talking therapy..in the mean time everything is getting worse, I'm having mostly bad days, so much so I actually say "oh I'm having a good day".
Thankfully my family are boyf and helping me get by really, keeping my mind off things and doing things when I can, making a Christmas cake with my grandma and planning different things for Christmas etc. So its okay at the movement, sometimes I get really down...but its mostly only at night when the boyf is at work.
Hope everyone else is okay, sorry again I haven't been on much! Just thought I'd come on and give you guys an update an let you all know I really appreciate all your support and kind words
Oh oh and before I go, Amber is doing great still her same old self! Taking her back to the Vets soon as its been a few months since the diagnosis and the time span was given so want to know whags happning and stuff, but at the moment I'm so happy she's still herself and as far as I can see healthy!
