Being or feeling misunderstood is an inevitable part of life. For those of us with conditions, there are many ways to be misunderstood. Being part of the chronic illness community can be fantastic; we have many shared experiences.
Tag Archives: hEDS
# Diary – 12 February 2026; Home
I felt very EDS-y, so I am having a home day. I am staying home and the making the most of it; I stayed in bed for almost all of the morning, then had a slow day, watching good tv, reading and slowly making some tasty food!
Medical Journey – Full Summary
A chronological summary of my medical journey to diagnoses of EDS, POTS, visceroptosis and mesenteric ischemia. The summary is kept updated.
EDS &… Plans
One of the most signigicant life-impcting things I have found very tricky and frustrating is the difficulty in planning, with a condition which is unpredictable. At times it can feel like damned if you do (make plans), damned if you don’t (make plans).
EDS &… Food
EDS can impact the GI system and effect food intake. I have a number of symptomatic structural issues. Despite this, I remain a ‘foodie’, though GI symptoms can be significant.
Accessing Your Records; Subject Access Requests
The EDS Lass writes about life with EDS, articles on relevant topics including human rights, and blogs about lifestyle and her medical journey. RECENT POSTS TheEDSLass Categories Tags This is holding text to show text. Writing about a world of limitless possibilities, where the journey is as exhilarating as the destination, and where every momentContinue reading “Accessing Your Records; Subject Access Requests”
Human Rights in Healthcare
The EDS Lass writes about life with EDS, articles on relevant topics including human rights, and blogs about lifestyle and her medical journey. RECENT POSTS TheEDSLass Categories Tags This is holding text to show text. Writing about a world of limitless possibilities, where the journey is as exhilarating as the destination, and where every momentContinue reading “Human Rights in Healthcare”
Seeking an Ileostomy…
I am seeking surgery to resolve the effects of structural and vascular issues (visceroptosis and mesenteric ischemia) which causes ‘loaded’ colon and significant symptoms.
# Diary – 27 August 2024; Paris
I am in Paris, enjoying exploring in the city in the sun. I have visited different areas of Paris, enjoying the artistic market and visiting the Two Windmills cafe in Amélie (which was incredible!). Today, I had bunch at the Eiffel Tower.
# Diary – 16 August 2024; Helsinki
I am in Helsinki, the beautiful captial of Finland.I am enjoying exploring Helsinki so much. Today, I enjoyed a light lunch and swim at Allas Pools, then a boat ride. I love water and boats, as well as exploring new places.
Visceroptosis (Internal Collapse)
The EDS Lass writes about life with EDS, articles on relevant topics including human rights, and blogs about lifestyle and her medical journey. RECENT POSTS TheEDSLass Categories Tags This is holding text to show text. Writing about a world of limitless possibilities, where the journey is as exhilarating as the destination, and where every momentContinue reading “Visceroptosis (Internal Collapse)”
EDS &… Movement
Movement is generally good for health, while EDS can cause discomfort, pain and fatigue. This can feel counterintuative to movement. Like many, I have tried to work out how to approach movement.
Informed Consent
The EDS Lass writes about life with EDS, articles on relevant topics including human rights, and blogs about lifestyle and her medical journey. RECENT POSTS TheEDSLass Categories Tags This is holding text to show text. Writing about a world of limitless possibilities, where the journey is as exhilarating as the destination, and where every momentContinue reading “Informed Consent”
Ehlers Danlos Syndrome (EDS)
The EDS Lass writes about life with EDS, articles on relevant topics including human rights, and blogs about lifestyle and her medical journey. RECENT POSTS TheEDSLass Categories Tags This is holding text to show text. Writing about a world of limitless possibilities, where the journey is as exhilarating as the destination, and where every momentContinue reading “Ehlers Danlos Syndrome (EDS)”
Colon & Stomach Surgery (2022)
In 2022 I had GI surgery; part of my right large colon was removed with the remainder stitched (pexied) up, and my stomach was stitched up (gastopexys).
The EDS Lass 