In my last post I felt disappointed and alone again after my follow-up appointment. After waiting 5 months since being tested at UCLH in London, my follow up finally came round. But it was very brief, felt generic, and didn’t discuss what could be underlying my dysautonomia. There’s no treatment available for at least for […]
Unraveling Autoimmune and Gut Links to Dysautonomia Read More »
I had some autonomic testing done at UCLH at Queens Square London in August 2024. The aim of the testing was to work out what kind of dysautonomia I have. It’s been 7 years since I was diagnosed with dysautonomia, and I’ve been without any care for 5 of those years. So I was really
Dysautonomia Test Results: What They Mean for Me Read More »
After years of being told her distressing symptoms could only be psychological as her dysautonomia was believed to be controlled via her BP and heart rate, manylemons has found some emerging research suggesting that she may still have reduced cerebral blood flow. New diagnostic tools like Lumia’s device offer hope for better understanding and management of conditions that include POTS, M.E/CFS and Long Covid.
Dysautonomia, POTS, and the brain blood flow test – is this what we’ve been missing? Read More »
Learn how to use the Long COVID pacing app with the Garmin Vivoactive 5 watch, which helps manage energy for those with conditions like M.E/CFS and Long COVID. The post includes instructions for installing and configuring the app, focusing on tracking heart rate to prevent overexertion, and emphasizes the importance of pacing for better health management.
How to use a pacing app on a Garmin watch Read More »
As I got up this morning, my brain was on its High Curiosity setting. This is part and parcel of being me – my thoughts are overwhelmed by possibilities. But for 10 years, chronic illness research has been in the cross-hairs, a target that ebbs and flows for weeks at a time. It’s been 10
Chronic illness treatments – are we on our own? Read More »
What does homeworking mean to those of us with chronic illness or a disability? Before COVID, we couldn’t get a job. Now, we can.
COVID, Homeworking, and Ableism Read More »
In my last blog post, I introduced you to the MS Hampshire Collaborative Working Group and our survey. We wanted to know what level of care people with MS are getting from their local MS healthcare team. Does it depend on where you live? and what happens if you don’t have good access, or any
The Hampshire MS survey results Read More »
Some of you may have wondered where on earth I’ve been for the past year and a half! Well, apart from getting a new diagnosis and learning ways to manage the condition (a future blog post), I’ve been heavily involved in a group called the MS Hampshire Collaborative Working Group and a survey of MS
What is the Hampshire MS Services survey? Read More »
I have chatted to so many people about the mountain that is the PIP Application Form, otherwise known as the PIP2 form. I totally concur with this metaphor – it would be a mission to get through it if you were well, let alone if you have a disability or chronic health condition! So far,
Introduction to the PIP Online Bootcamp that tackles your PIP Application Read More »
If your disability or chronic illness means that you can’t work, you need to make sure you get enough national insurance (NI) credits. If you don’t, you might not qualify for a full state pension. How do you get them? Employment Support Allowance (ESA) or ‘new-style’ ESA. To get the full basic State Pension you
Are you sure your future state pension is protected? Read More »
