Chronically Jenni
Spreading Awareness & Helping Others with EDS & POTS
Tag: eds
A Trip To Norwich
The thought of heading back to uni in September has been extremely daunting for me. I struggle every day with my EDS & POTS whilst not doing very much and with so much help from my amazing mum! How will I cope on my… Continue Reading “A Trip To Norwich”
24 Hours of EDS || a day in my life
Living with a chronic illness is a 24/7 job where you never get a day off. This video shows you a fairly typical day in my life. Ehlers Danlos Syndrome is different for everyone so I wanted to share with you what EDS is… Continue Reading “24 Hours of EDS || a day in my life”
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”
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”