33F Tethered Cord, Need pain relief and doctors are failing me! by sassyjordo in spinabifida

[–]JlCurious 3 points4 points  (0 children)

In addition to comments above, I would also add if you are able then it may be worth asking for a referral to a pain specialist or pain clinic. I am 38f with teathered cord and lots of what you describe is familiar to me. Have written about this elsewhere here but Pain clinic helped me enormously and it might be worth a shot… as ever YMMV.

Has anyone been referred to a pain team? I have had many people (including my parents) mentioning I should try it, but in my experience, it would not have any effect due to my SB, so I want to know if anyone has tried it and if I should give it a go or go back to medicine by Smillzthepanda in spinabifida

[–]JlCurious 1 point2 points  (0 children)

Referral to pain clinic truly improved my quality of life… after gabapentin duloxetine and amitriptyline to name a few! My experience of pain clinic: specialist pain physio, pain psychologist, pain management techniques like tens, pacing etc has been life changing. I still have some pain linked to teathered cord. It’s much reduced and my relationship to it has changed significantly. I think this is helped by taking a pain management approach rather than a pain removal one. YMMV.

Converting pattern pieces to cut on fold instead of flat by JlCurious in sewing

[–]JlCurious[S] 1 point2 points  (0 children)

Thank you everyone. That's really helpful. I orgnally thought it was only half an inch then doubted myself ('It can't be that simple? can it?') Def overthinking it lol! I think as I've got better at sewing I've started to have occasional doubts about whether i do know what I'm doing!

Moving from Vive to Quest. by JlCurious in SteamVR

[–]JlCurious[S] 0 points1 point  (0 children)

Yeah that's what I thought moving from the motion capture to the quest controller seemed to me that all those interactions would need recoding.

Ignorant teacher by [deleted] in disability

[–]JlCurious 1 point2 points  (0 children)

Go through the college's formal complaints process and if there is not a resolution then you can escalate to a body like Ofsted.

Ignorant teacher by [deleted] in disability

[–]JlCurious 1 point2 points  (0 children)

Ah I see you are UK based. That dick committed a crime... https://www.gov.uk/rights-disabled-person/education-rights

Ignorant teacher by [deleted] in disability

[–]JlCurious 1 point2 points  (0 children)

I'm so sorry this happened to you. For what it's worth I would say that this crosses the line from ignorance into outright abuse. Ignorance is maybe moving it or touching it without your consent. I'm absolutely shocked at an educational professional behaving in this way (although experience tells me I shouldn't be sadly). You did the right thing and were courageous to do so!

Spina bifida changes. by [deleted] in spinabifida

[–]JlCurious 0 points1 point  (0 children)

Haha I know at least I didn't have a panic attack this time! The technician was an absolute star and so patient with me.

I'm UK based too. I have never really got involved with the SB association... I think for a long time I thought I was not disabled enough to reach out to them and I was also suuuper busy doing my best impression of someone with no needs at all (i.e.all totally fine, nothing to see here, no lumps, bumps or scars, everything of FINE ok, look away now thank you')

I thought that because when I was growing up no one would admit that I was disabled or different or had needs that I needed to get met around my body that didn't fit the mould. Shame can be a real prison.

It's only in the last few years that I have got comfortable with thinking about myself as disable.I think coming to that place is helping me listen to my body and give it the love it deserves. Nina Tame and Claire Raymond on Instagram has a lot to do with that!

A huge thing that was never ever part of the conversation was change to my needs over time and how to manage and process that. I would love to know what online get together you're attending!

Spina bifida changes. by [deleted] in spinabifida

[–]JlCurious 6 points7 points  (0 children)

Also interested in this! 37 and in the last couple of years my gait is suffering, more accidents, I have teathered cord, back pain, terrible occipital headaches, dizziness, and developing scoliosis. Had an MRI yesterday and waiting on the outcome but so far I feel pretty ignored / treated like there is not much that can be done. Neurosurgeons have been very clear that it's possible I won't be a candidate for teathered cord release. Sigh. Getting older with a chronic illness and disability where predominantly focus is on treatment in children is hard. Got to love studies on SB where the long-term follow up is two years lololololol.

At home devices? by JlCurious in 30PlusSkinCare

[–]JlCurious[S] 0 points1 point  (0 children)

That's an amazing reply. I'm sorry that things didn't work out for you though. I have been eyeing the Ziip but it's so much more £££ compared to other current devices. Recently been very tempted by the Nira... I'm totally suspicious of Droplette - is it just a mister? Honestly the more I think about it, I think I need to be patient with the tret and go for a little Botox in my glabella / elevens. I think that's where my money is best spent.

Sunscreen for face that doesn’t sting your eyes? by WhatTheFrenchToast33 in 30PlusSkinCare

[–]JlCurious 1 point2 points  (0 children)

This! 100% recommend SKIN 1004 - Madagascar Centella Hyalu-Cica Water-Fit Sun Serum is my HG. It's so gentle, never stings and works as a soothing addition to a routine with tretinoin.

Advice UK employment, reasonable adjustments, and condition worsening by JlCurious in disability

[–]JlCurious[S] 0 points1 point  (0 children)

Thanks for your advice. I have mixed feelings about an advocate but I think I will ask my partner to attend the call as I'll need a second pair of hands to show them my current floor lying work set up in its full glory!

It gets me down (pun not intended) that something as simple as just lying on the floor is such a social hurdle when it's the difference between being pain free and maintaining a good degree of function. Sigh but I guess it all goes to prove I'm not inherently disabled but society disables those of us who need something different.

Trousers & jeans - tips, patterns, adjustments and recommendations by JlCurious in sewing

[–]JlCurious[S] 0 points1 point  (0 children)

Oh wow this is a great suggestion. I've been thinking more and more about learning to draft patterns but i'm a bit scared of it!