Golly, well it has been an incredibly long time since I have written a full blog post, in fact it was almost this time last year that I wrote one about EDS. 2019 has seen 6 operations, 2 on my spinal cord, 3 on my hips and 1 to reinsert the PEG-J tube, I also had more...

I think I ought to put a little warning on this blog, it is WAY outside my normal writing about my health conditions. This year I have been doing therapy, it initially started to try and help me deal with living in pain and having a condition that is only going to get...

Sorry for being so quiet over the last few months, I have been really struggling with the symptoms of malnutrition, which have left me completely drained.

In October I was admitted into hospital to be put on artificial feeding, which involved having a naso-jejunal tube...

If there is one thing you can count on this illness to do, it is to change. Every time you think you have it sussed and have worked out a way to carve some semblance of a life, it changes and knocks you on your ass again. Without fail, every single time I think I have...

A week ago I had spinal surgery, all went well and they removed the mass that was pushing against the nerve and cord. To do this they had to take out the metal work that had previously been put in to stabilise my spinal fractures. Instead of putting the metal work back...

I now have a port-a-cath fitted. This is a small device that sits under my skin and has a line that sits at the top of my heart. It is a form of central line that has slightly less infection risk as when it is not in use it is covered completely because it is inserted...

I promised an update of the goals that I set for last year, well first of all I should share those goals with you:

2017 Goals

1. PhD - Finish and write up all primary research and findings.

2. Learn to fly

3. Write and publish a book

4. Finish biomedical science a...

Wow, well I can’t believe this, but Christmas is over and we are rapidly heading into New Year.  The run up to Christmas was an interesting one.

If you remember in my last blog I said I’d had the gastric emptying test – well we got the results and it was not good news....

After all the excitement of the flying, I thought I would take the time to do a bit of a general update. The last couple of weeks has seen a lot of hospital appointments with various outcomes.

I saw my shoulder consultant, who is also my elbow consultant, but we will co...

I had a couple of shocks. One was when I was leaving the hotel after the FSDP scholarship and a lady asked if I wanted help with my case. I politely declined and she explained that her husband is disabled and she always tries to offer other disabled people help where s...