Chronically Jenni
Spreading Awareness & Helping Others with EDS & POTS
Tag: ehlers-danlos syndrome
Living With Ehlers Danlos Syndrome #EDSAwarenessMonth
Happy May Everyone! You know what that means? It’s EDS Awareness Month! I was diagnosed with Ehlers Danlos Syndrome last February and it’s been a long battle ever since. I started off by fighting the comorbities that come with EDS, for me that’s POTS… Continue Reading “Living With Ehlers Danlos Syndrome #EDSAwarenessMonth”
#EDSAwarenessMonth Project
Hi guys! It has been a super busy week for me with a wedding, Easter, working & a neurology appointment plus I’ve been struck down with an awful cold so, unfortunately, I’m not feeling great and haven’t been able to put out a proper… Continue Reading “#EDSAwarenessMonth Project”
What is Ehlers Danlos Syndrome?
Today has been a bit of a stressful one. I’ve had to call lots of different medical people and am waiting to here back from my GP. I’ve had to sort authorisation for a follow up with my Neurologist, my referral for an ultrasound… Continue Reading “What is Ehlers Danlos Syndrome?”
CSF Leak: My Blood Patch Experience
New video which shows the recovery from my most recent blood patch. Every Blood Patch experience is different and trying to manage having one every month whilst trying to fight my other chronic illnesses has been pretty difficult for me. It’s been 2 weeks… Continue Reading “CSF Leak: My Blood Patch Experience”
CSF Leak: Blood Patch Surgery
I have realised that I talk quite a lot about my Postural Orthostatic Tachycardia Syndrome (POTS) & Ehlers Danlos Syndrome (EDS) but I tend to leave out my Cerebrospinal Fluid Leak (CSF leak), which is funny because it was my bad headaches that started… Continue Reading “CSF Leak: Blood Patch Surgery”
To The Customer Who Judged Me For Sitting Down On The Job.
This is another piece I’ve just had published on the Mighty which I wanted to share with you. After working in the retail sector for as long as I have, I’ve learned that customers are inquisitive and tend to point out when something is different. In my… Continue Reading “To The Customer Who Judged Me For Sitting Down On The Job.”
7 Things I only do because I have POTS/EDS! #Rarediseaseday
Here’s a video I did for Rare Disease Day (28/02). Sorry I’m a little late putting it up on here but it’s still worth a watch 🙂 Please Subscribe to my Youtube Channel 🙂 [youtube https://www.youtube.com/watch?v=HdlsFdsahFE]
The Most Difficult Parts of Receiving Treatment for Chronic Illness
The night before my first Blood Patch surgery, I wrote a piece for the Mighty which has just been published so I wanted to share it with you too. It’s all about the difficulties people with chronic illnesses go though when getting any sort… Continue Reading “The Most Difficult Parts of Receiving Treatment for Chronic Illness”
New Experiences & Meeting a Fellow Zebra
Is it too late to say Happy New Year? It’s still just about January so I think it’s okay 😛 I’m allowed to say it because this is my first blog post of 2017! Hope everyone is having a good year so far. I’ve… Continue Reading “New Experiences & Meeting a Fellow Zebra”