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« on: 20 December 2015, 18:03:52 »
Spent the last 3 months ill with it and now fingers crossed, hoping my immune system has finally defeated it. Doctors could see with my symptoms and blood tests what was happening and called it a 'slow virus', where my immune system ran out of reserves every time it tried to defeat it. The virus would then say 'happy days' and multiply like mad, with my immune system recovering and repeating the cycle. I've lost 10kg in weight and it's party trick was to infect both my eyes, which the 4 GPs on numerous and frequent visits as my eyesight deteriorated and got more painful insisted and treated it as conjunctivitis until I went blind in my left eye, with my right eye rapidly following it and ended up as an emergency case at the local hospital eye clinic. On looking at my left eye the eye doctor's comment was "unbelievably bad" followed by a more senior doctor's second opinion off "very bad", which was not the confidence boosting answers I was hoping for! They then measured my eye internal pressures which were 46 in left eye and 41 in right instead of a normal 12, which could have made me permanently blind at any instant. 5 hours of treatment later I was told my left eye should recover. Another 5 hours of treatment the following day I was given the good news that it would definitely recover. I was on anti-glaucoma tablets and eye drops twice a day, and two lots of anti-inflammatory drops, one at 2 hourly intervals, 5 time a day and the other at 1 hourly intervals 10 times a day.
My right eye has made an almost full recovery, but my left eye is not there yet and although it will never be as good as it was, I won't know for a few more weeks how close it will get to how it was. Both eyes still suffer from low level light rapid loss of detail, but this apparently takes the longest to recover.
I've also now lost partial use of my right-hand, GP thinks it is a trapped nerve due to rapid weight loss, I'm concerned it is one of the plethora of Guillain-Barry syndrome subtypes where my immune system has mistakenly attacked my nervous system. I'm keeping a close eye on this as after 2 weeks there is no expected improvement in my's hand's function, but fortunately it is not getting any worse as could happen with a Guillain-Barry type syndrome, as if that progresses it can be fatal.
Watching my eyesight disappear before my eyes is the most scary thing I've ever experienced and not an experience for the faint hearted! Both my eye problems and the partial disability of my right hand (fortunately, I'm left handed), make you realise how much more difficult even the most basic things are with these sorts of disabilities.
Losing 10kg every 3 months was not sustainable, which mean't I had to defeat the virus, so with a combination of immune system boosting foods of fruit, nuts, vegetables and red-meat and liver, plenty of sleep where it made me very tired, especially when my immune system was having a good go at the virus and the last thing I felt like, exercising to improve my fitness. My appetite and wellbeing is now improving.
These problems have highlighted to me the very best and very-worst of the NHS with my local GPs' complacency and masterly-inaction (where from what I can see they want all patient problems fixed as fast as possible in an appointment with a prescription, or any easy cop-out answer if you don't conform to this, I now being much more assertive on the outcome and follow-up I'm expecting from any appointment, with their standard lets leave it for a month to see what happen to my now lets not, lets discuss a plan of action!) to the eye-specialists at the hospital who were absolutely brilliant. It also highlighted the complete incompatibility and communications barrier of the hospital and GP systems, including hospital notes being paper and GP's electronic.
