EDS & HSD Top Tips & Hacks || EDS & HSD Awareness Month 2021
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- Опубліковано 11 тра 2021
- It's that time of year again! EDS & HSD awareness month comes around quick! I'm back for my 5th annual series of Ehlers Danlos Syndrome & Hypermobility Spectrum Disorder Awareness Month videos with my dazzle of zebras from across the world. This year we have 27 zebras with 4 different types of EDS and HSD from 8 different countries sharing their experiences of what it's like to live with these rarely understood conditions on a daily basis.
In this video we are sharing some of our top tips, tricks and hacks for living with HSD, hEDS, cEDS & vEDS. Having shared some of my eds hacks on my instagram in my #hacksforspoonies series I thought I should ask my fellow zebras what their favourite hacks and best tips. I really hope you find some of these ideas helpful.
Products similar to those featured in the video are below, if there are any questions or something is missing please drop me a comment:
Ayesha & Jenni's Knee Pillow: amzn.to/3tKMMsO
Jenni's hairdryer stand: amzn.to/2QdaeBp
Georgia's Tape: amzn.to/3tLa95n
Emma's Heat & Ice Packs: amzn.to/3hicHW7
Amber's Phone holder: amzn.to/3eDCOFd
Jill's Ring Splints: www.ringsplints.com/
Alexis' Speech to text software: amzn.to/3eHJaDu (there is also one built into word which is pretty good)
If you'd like more advice or have questions on using mobility aids with EDS check out my mobility aids videos: • Mobility Aids for Chro...
For many of the things included in this video & more plus USA links visit my chronic illness survival kit page: chronicallyjenni.com/chronic-...
I am fundraising for @TheEhlersDanlosSociety throughout May please head to / chronicallyjenni to donate
If you liked this video please subscribe to my channel :)
You can also find me on other social media:
Instagram: / chronicallyjenni
Facebook: / chronicallyjenni
Twitter: / chronicjenni
My Support Group: / 785786465114178
Email: chronicallyjenni@gmail.com
Blog: www.chronicallyjenni.com
Amazon Store: www.amazon.co.uk/shop/chronic...
Huge Thanks to Everyone who was involved in this video:
Adriana, North California, USA,18, hEDS, IG: @adrianaedswarrior
Alexis, Alberta, Canada, 20 , hEDS, She/They, IG: @therarewanderer & @ggalexis12 Blog: therarewanderer.travel.blog/
Alyssa Maryland, USA, hEDS, IG: @spoonfullygraceful
Amber, Gloucester, UK, 18, HSD, They/Them, IG: @_prisma_art_
Amy Mckee, Yorkshire, UK, 22, HSD, She/her, IG: @voldycat7 YT: / @voldycat
Ayesha, Brighton, 33, hEDS, She/her, IG: @ayeshashasha777 YT: @AyeshaShaSha
Bradley, Victoria, Australia, 29, vEDS, he/him, IG: @veds_zebra
Caroline, Essex, UK, 35, hEDS, IG: @lilcaz10
Catie, Pennsylvania, USA, 25, hEDS, She/her, IG: @lifeasazebra & @sunflower.catie
Clara, Texas, USA, 21, hEDS, IG: @clara_and_arlo
Eleanor, Scotland, 22, hEDS
Eliza, London, UK, 24, hEDS, They/them, IG: @disabled_eliza
Emma, Kent, UK, 27, hEDS, She/her, IG:@ehoughton24601
Georgia, Cardiff, 22, heds, she/her
Jasper, Newcastle, UK, 26, hEDS, He/him Twitter: @queercanthear
Jeannie Di Bon, London, UK, hEDS IG: @jeannie_di
Jenni, Essex, UK, 25, hEDS, She/her, @chronicallyjenni
Jenny, Hampshire. UK, 32, hEDS, IG: @jennycole1998 YT: @JennyCole1988 Blog: jaffacat.co.uk/
Jill, The Netherlands, 27, hEDS IG: @jillhubersmooren
Kate, Northumberland, UK, 26, hEDS, IG: @katestanforth
Katya, London, UK, 26, hEDS, IG: @positivelychronictravels
Luca, Ferrara, Italy, 35, cEDS, he/him, IG: @tre8bre FB:@tre8bre.1985 YT: @tre8bre
Marisol, Mexico City, Mexico, 28, hEDS, She/her, IG:@solprni
Rachel, Essex, UK, 25, hEDS, IG: @racheleanneblog
Robin , Vancover, Canada, 29, hEDS, IG: @robinhahnsopran YT: / @robinhahnsopran
Simon, Devon, UK, 42, hEDS & cEDS, He/him, IG: @the_bodyboarding_eds_pilot
Special Thanks to my amazing boyfriend Ian for helping with editing!
You can support my content by:
Buying me a virtual Coffee at www.buymeacoffee.com/chronicj...
You can also get a membership for extra Chronically Jenni content
Taking a free trial of audible audiobookswww.amazon.co.uk/Audible-Memb...
Heading to my Amazon Store & purchasing from my POTS & EDS survival kits -
www.amazon.co.uk/shop/chronic...
Hack: Squish mellows so cute and also helps you to have your body surrounded by something super soft when pain is being awful!
Oh my! That hair dryer stand! Thanks so very very much
I'm so amazed how we all prioritize different things! The best part about that is how varied these tips are - what a useful vid! Thanks everyone for sharing what's important to them in their day-to-day life! 💙💙
I loved how much variety there is, I think it's so important! And thank you for getting involved and being so brilliant, what you said was something I really needed to hear!
Another great video Jenni. So happy to be part of it with so many other amazing zebras xx
Thank you so much Jenny! great to have you involved!
Im fully taking notes while watching this thank you haha
Literally 😅
Same!
Haha I love this! x
THIS HELPED ME SO MUCH Thank you thank you I definitely need to take more care of my body and I am not weak when I ask for help/ let people know how much pain I really am in
It’s so wild to hear people talking about exercising and how it helps. I wish. I’m lucky if I have the energy to go for a walk and if I walk too long I’m in pain for days and exhausted.
I have hEDS and Cranialcervical Instability. What’s helped me the most for joint/muscle pain is the cream called, Penetrex. Also, I’m taking a non-opioid medication called, Low Dose Naltrexone at 3.5mg. It helps significantly with inflammation, pain and autoimmune symptoms. I highly, highly recommend you talking to your doctor about this medication.
Also, a pregnancy pillow is essential! My ribs sublux a lot! Like 3-6 times a day. What has helped me put them back into place is a dense foam roller. I roll my back on it and my ribs go back into place with far less pain. For on the go sublux’s, my PT taped together 2 tennis balls 🎾 to look like a figure 8. I keep this in my car and put it on my back where needed and press against the car seat and my ribs are popped back in!
Thank you for this! It was awesome. I took notes. 🦓
Really hope it helped x
Jenny thank you so much it was wonderful love the hacks and we'll try some of them everybody looks great thanks again have a great weekend Miss model.!!!🦓🦓🦓🦓🦓🦓🦓🦓🦓🦽🦼🌞⛱♿💐🎈🎈🎈🎈😇😇😇😇😇👗
Thank you so much and to you!
Yall im feeling hella bummed rn about all my diagnosis’ ngl
Is it not “normal” for your arms and stuff to hurt when doing your hair? (For reference I’ve been doing my hair for about 10 years…)
Everyone's always really shocked when they see how I can French braid my own hair.