Daily life with Ehlers Danlos Syndrome - EDS Awareness Month
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- Опубліковано 27 тра 2018
- For EDS Awareness Month, I wanted to make a video about what it's like to live with Ehlers-Danlos Syndrome. It's a bit of a long one I'm afraid, but I wanted to try and convey the ups and downs and how some days I'm well enough to go out, whereas other days I'm not. There are smiles, tears and everything in between!
If you have any questions about anything you see in this video, please don't hesitate to ask me, as I'm happy to talk about pretty much anything! I have included a link to EDS UK in case you need further information or support.
EDS UK - www.ehlers-danlos.org
Where you can find me:
Blog - www.jaffacat.co.uk
Facebook - Ramblingsofa...
Twitter - @Jennycole04
Instagram - @Jennycole1988
Pinterest - Jennycole44
Google+ - plus.google.com/+JennyColeJaf...
Snapchat - Jennycole44
Anything marked with a * has been sent to me for review purposes, but all opinions are my own and I will only talk about products that I feel fit in with my channel/blog.
Music by Epidemic Sound (www.epidemicsound.com)
I'd love to hear your comments and will reply to as many as I can :)
I thank you for posting about your life with EDS. I have EDS too, along with a lot of its extras and I feel like a failure a lot because of not being able to do the things I want too or need too. It is so hard lately to get out of bed, especially since having covid in November. I'm still suffering long haul Covid.
Hang in there, you're not alone.
Oh girl I am so so sorry I understand completely what you’re going through you are not weak you are so so strong and don’t forget that! Thank you for sharing what it’s really truly like to live with a chronic illness💗
5:00 I hear you. This time last year I was a self employed decorator who loved jogging swimming etc and even though I’m a female I really enjoyed being on site socialising. Half way through the first lockdown I noticed I couldn’t get out of bed in the morning. My joints hurts so bad so I went to the dr and they confirmed that I have rheumatoid arthritis and not just any type I have the most aggressive. So here I am having to come to terms that I will never climb a ladder again or be as productive as I once was.
I have EDS and I completely get what u mean with the washing your hair issue I can also only manage once or twice a week
I have hEDS so I really sympathise. Keep going girl your not alone ❤️ xx
Thank you for your comment. Sorry this reply is so late - I've been struggling to keep on top of things with my health, but am getting there slowly! Thank you for such a supportive comment - it means a lot xx
Ali I know what it’s like to miss the mornings! 😴🥺your post sounds so familiar X
Thank you for your comment Andrew. I'm so sorry it's taken me so long to reply. My health hasn't been brilliant, so it's taking me a lot longer than I'd like to get things done, but I really appreciate you taking the time to leave a comment.
Sorry to hear you can relate to missing the mornings too. So frustrating when your brain wants to be up and doing things but your body just needs to sleep. I hope you're as well as possible at the moment xx
I watched this video because I have hEDS and I'm only 16, I was diagnosed when I was 12 after my Beighton score was 7/8 out of 9. I'm currently get a lot of bone and joint pain in my legs but because of my exams I have to force myself through it.
Right now (18:05, 18th June 2022) I have pain in my hips right through my legs
Sorry for not replying sooner - I’ve been struggling with my health. Sorry to hear you have hEDS too and are in a lot of pain. It must have been really difficult having to push yourself through your exams. I hope that, now they’re over, you’re managing to pace yourself a bit more and that your pain has settled a bit xx
I've just watched this whole vlog. I feel so frustrated for you especially with the doctors not taking things seriously. Xx
Thank you so much for watching and for sharing my frustrations. It's horrible not to be listened to. I hope you're doing as well as possible at the moment xx
I have eds and I have sprained my left ankle so many times that when I sprain my right ankle it's hard to walk
I used to constantly sprain my right but sometime I sprained both and I walked like a 'penguin' because the hospital refused to give me crutches when I couldn't walk properly
would be interested to see what medicines and tablets you have to take, especially the vitamins. as would help to know what is best as i also have EDS and struggle with vitamins and nutrients
Me too
Thank you for your comment - I really appreciate you taking the time to leave one . Sorry it's taken me so long to reply - I've been struggling to keep on top of things with my health, but getting there slowly! I'll add that suggestion to my list of things to film, thank you. Obviously we're all different and it's important to get advice from your Doctor on anything you should/shouldn't take, but I know how helpful it is to just hear what other people do for their condition so I'll get that filmed at some point xx
2:00 minutes i wanna to know of what is that medication and for what it is please
Me too.
Same