Hey Jenni, I live in Romford. I don’t have EDS but do have HSD and Scoliosis. I would love to meet up with some day. Whenever I go to Lakeside I look out for you 😉❤️ I’m also in a pain and fatigue flare at the moment - I feel for you x
Hey Karen! That's so close. Bless you, you'll usually find us in Bella Italia if we are there :P I know quite a few locals now I tried to ask EDS UK if I could lead a group since essex groups were such a mess but I think someone else has taken over now but essex is such a big place. Maybe I'll try and hold a meeting anyways! x Spoons & Love x
I really do understand, sweetie. I’m just starting to come out of a 20 (so far) day flare caused by a dental hygienist who wouldn’t listen to my pleas for good neck and jaw care back on January 10th. I saw the GP twice and ended up in A & E once because we couldn’t control the pain at home, even with morphine syrup. I’m now on the size 10 morphine patches instead of the 5’s, I’ve used up 200mls of morphine syrup (usually 6 months’ worth) in 2 weeks, tool Tramadol for 4 days and spent most of the time lying with my head on a frozen “Comfort-U” Pillow to try and reduce the inflammation around my trigeminal nerve root. It’s been horrible. Please reach out to me over on Instagram on the bad days. We can support each other and maybe even swap ideas for our respective Guide units too! Sending you so much love and as many spoons as I can possibly spare xxxxxxxxxxxxxx
Oh Penny that sounds so so awful I'm so sorry I hope it calms down soon! You shouldve messaged me! Definitely in need of some ideas for Guides at the moment too :P speak soon spoons & love x
Haha I'm not sure what accent I have exactly. Your english seems pretty good to me but always happy to teach. What's your first language I love to learn too.
Jenni I hope you don’t mind me asking but can’t you medically retire? You’re obviously really struggling but to what end. You are brave but you need to look after yourself 🥰
I'm not going to lie it's not something I've looked into but I do think you have to have worked at least a certain number of years before you can do that anyway. I think it's just about trying to do what I'm doing in a different way when I was at uni I feel like I was achieving a lot more so I feel like I shouldn't be struggling as much as I am right now. I am going to talk to my GP and maybe Citizens advice and I have another OT appointment soon to see what they think and go from there. Thank you so much lovely x
Hey Jenni, I live in Romford. I don’t have EDS but do have HSD and Scoliosis. I would love to meet up with some day. Whenever I go to Lakeside I look out for you 😉❤️ I’m also in a pain and fatigue flare at the moment - I feel for you x
Hey Karen! That's so close. Bless you, you'll usually find us in Bella Italia if we are there :P I know quite a few locals now I tried to ask EDS UK if I could lead a group since essex groups were such a mess but I think someone else has taken over now but essex is such a big place. Maybe I'll try and hold a meeting anyways! x Spoons & Love x
I really do understand, sweetie. I’m just starting to come out of a 20 (so far) day flare caused by a dental hygienist who wouldn’t listen to my pleas for good neck and jaw care back on January 10th. I saw the GP twice and ended up in A & E once because we couldn’t control the pain at home, even with morphine syrup. I’m now on the size 10 morphine patches instead of the 5’s, I’ve used up 200mls of morphine syrup (usually 6 months’ worth) in 2 weeks, tool Tramadol for 4 days and spent most of the time lying with my head on a frozen “Comfort-U” Pillow to try and reduce the inflammation around my trigeminal nerve root. It’s been horrible.
Please reach out to me over on Instagram on the bad days. We can support each other and maybe even swap ideas for our respective Guide units too! Sending you so much love and as many spoons as I can possibly spare xxxxxxxxxxxxxx
Oh Penny that sounds so so awful I'm so sorry I hope it calms down soon! You shouldve messaged me! Definitely in need of some ideas for Guides at the moment too :P speak soon spoons & love x
How can I get your accent ? Could you be my English teacher by any chance ?
Haha I'm not sure what accent I have exactly. Your english seems pretty good to me but always happy to teach. What's your first language I love to learn too.
Jenni I hope you don’t mind me asking but can’t you medically retire? You’re obviously really struggling but to what end. You are brave but you need to look after yourself 🥰
I'm not going to lie it's not something I've looked into but I do think you have to have worked at least a certain number of years before you can do that anyway. I think it's just about trying to do what I'm doing in a different way when I was at uni I feel like I was achieving a lot more so I feel like I shouldn't be struggling as much as I am right now. I am going to talk to my GP and maybe Citizens advice and I have another OT appointment soon to see what they think and go from there. Thank you so much lovely x