One of my biggest challenges of living with the chronic, incurable rare disease, scleroderma and Raynaud’s, is that I am no longer physically able to maintain my professional career as a practising barrister.
The last time that I wore my court robes, wig and gown, was 29th June 2004 at Leicester Crown Court.
This date, randomly, some years later, was set as World Scleroderma Day.
|Thanks to USA patient, Sharon, for this wonderful image|
To read my article ‘29th June, World Scleroderma Day 2016’, where I detail the origins of the date, Click here
I sold my house and re-located to my birth town of Southport, on the north west coast of England, where maintaining my symptoms to a manageable level became, and still remain, my full time job. I wrote about this, here
Which, is quite ironic really, since when at work, I would sometimes have the ‘Sunday night, pre - Monday blues’, and here I was, wishing for that to be my reality again, missing the ‘old me’.
It never occurred to me that, one day I would wake up and never get better.
This is driven by my desire to get better.
Over the course of the last few years, my ‘return to wellbeing’ routine has allowed me to ‘test out’ several adventures, to assess the level of the actual reality of my return to work.
This was a huge physical feat for me, even though Manchester is only 40miles from Southport.
Weeks of advance preparation were put into place, along with the three hour routine required to allow me out of the front door.
Whilst sitting at Southport train station at 6.30am, I thought to myself what a miracle it was that I was sat there!
Sadly, the experience of the train journey confirmed why public transport is not an option for my tin man body and Raynaud’s sensitivity. Accompanied by several sets of stairs, which are a ‘no-go’ for me.
Unfortunately, the ‘ten day’ recovery period still remains a precedent following any ‘big day’ out. I have to be super-organised with managing my time and in particular, any meetings in London, via my roles with the European Medicines Agency (EMA), and, NHS England.
To view the presentation, Click here
I have shared more of my coping strategies in relation to this, on my personal blog, cosmicfairy444
An edited version of this article was published here, in my Column with Scleroderma News.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice