THE M.S. IN THE ROOM

I think I started realising that I had a bit of a problem roughly 6 months after my father passed away (March 2013)

Being a very enthusiastic mountain biker, I really battled to focus my eyes while out on the mountain as I realised that my right eye went cloudy as soon as my heart rate became elevated...and my 3D perception disappeared. This did result in a nasty fall on the mountain, which made me realise that I needed to find out what the issue with my eye was...

I went from optometrist to ophthalmologist and eventually ended up being sent for an MRI as nobody found any issue with my right eye. When the results were clear enough on the scan, I was sent to a neurologist who said that he would like to confirm the MS diagnosis via a LUMBAR PUNCTURE.

The largest kneedle ever manufactured for insertion into the human body was actually not very painful...the pain came in the form of migraines for a week after the injection...but when the results from the spinal fluid came back, it was confirmed - the right eye issue was called OPTIC NEURITIS -  swelling (inflammation) resulting in optic nerve damage. Apparantely a very classic / common symptom indicating the precence of hte auto immune disease MULTIPLE SCLEROSIS. 

The first two years I think the best way for me to explain my feelings was that I was, quite simply - IN DENIAL. I felt fine, albeit tired quite often, I was able to still keep doing a full days work at the office - still cycled and travelled the globe if and when I could. I really was not sure what the fuss was really about !

It must be pointed out right now that, thanks to a top medical aid that I had, I did receive exactly what I needed to keep on with my daily life, without risking  any progression of the disease. The daily injections were tough but I did not miss one from the very first injection on 26 October 2014 - that was 784  consecutive days  before I missed one while travelling in China in early in 2017.. The most regrettable incident occured in March 2018. having just arrived in Bareclona on my way to a trade fair with my sister Kitty, I was the victim of a very impressive thief who managed to take my camera case off my wheelie travel bag in a crowd just oustide my hotel, without me have the faintest idea that I had been robbed. An expensive camera being stolen would have been difficult to process, but insurance would have assisted me through this financial pain. 

 

The real problem of the theft was only just unfolding....the camera case actually contained my very rare and difficult to acquire injections, which need to be transported in a secure and temperature friendly way - hence the use of the camera case. ( I keep wondering how disappoined the thief must have been when he opened the case to see the injections and not a Nikon camera ! )

Long story short here, after much contemplation and attempts to get more medication in Spain or Italy...I abandoned my trip after a week as I had been advised that no injections for a period of 10 days or more could prove very detrimental to my health. So, I did not make it to Italy, but am very grateful for the assistance provided by KItty in Italy - she had no idea what I wanted to achieve in all the meetings I had set up, but she still managed to help me get answers I desperately needed - even with me sitting back home while all the meetings took place.

The years from 2014 till 2020 were relatively uneventful, which is a good thing considering I am talking about a life changing (fortunately not life threatening...) auto-immune disease.

That said, after opting  to resign from DOUGLAS JONES MOSAICS in SEP 2019 (due to my inability to get through more than 4 to 5 hours of work daily) I have started to business' and as the disease has progressed unfortunately over the past 18 months, I am at least now able to do what I can while working from home.