Wow - it's been more than 2.5 years I think since my last post and what a crazy few years it has been. I spent 9.5 months of 2014 in hospital and have spent less than a month at home in 2015 (only a month to go and I'm writing this from hospital).
I saw the UK's leading consultant for Gastroparesis (diagnosed in 2012, when the nerves don't work so your stomach paralyses). He had no available appointments at all on the NHS as he was doing so much lecturing and handing over as he was/is due to retire. He suggested Lorazepam to sedate me during the episodes and whilst we had no answers as to the real cause of the problem, this got me through the horrific days. He also suggested knocking me out for a month, apparently an old school method of resettng the nerves but we opted against this.
This year, I had a doctor supposedly in charge of my care who refused to follow this plan of relief and told me that I would just have to 'suffer and work through it'. So, after much deliberation, I changed hospitals. After a few visits, I was put under the care of a doctor who was determined that he could solve all of my problems with 'more insulin'. He refused to let anyone cannulate me so I had no fluids and would end up extremely dehydrated and vomiting blood. I would then be in a really bad state and the emergency doctors would have to stuggle to treat me. He also told me that the Gastro Consultant at the hospital refused to see me. Despite having vomited for more than 2 years, it was only a month ago that I actually met this very gastro doctor - fortunately I'd managed to transfer to a new Diabetes consultant who helped me in A&E and realised that something just had to be done. The Gastro consultant I thought was draconian was in fact charming, helpful and lovely, he told me he'd do anything to help and didn't refuse to see me at all. There's a lesson to be learnt from this.
After much jiggery pokery (and a lot of badgering) we have now found another tip top Gastroparesis consultant who is convinced that my problem isn't solely gastroparesis and that further investigations and tests are needed. So here I am at 'Europe's leading gastro centre'. It has taken so long to get to this point and we (myself, mummy and UKPIPS) have had a real fight on our hands. I don't know how long I'll be here for and I have no idea what tests are planned but I will probably find out soon. Fingers crossed they can find a way to fix me. I have also almost lost my sight - I am officially categorised as 'Blind/severely sight impaired'. However, I managed to see a white polo ball on the green grass albeit in close proximity so for nw that is good news.
I have managed to escape a few times this year...a charity polo day and riding my amazing old polo pony (Fizz), a rugby world cup game, a West End Musical, events at the O2, a day filming for a biopharmaceutical company etc. Now I'm just imagining an amazing holiday in the Maldives, Seychelles or the Caribbean! As Churchill famously said, 'Never give up!'
