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.
To read me article ‘29th June World Scleroderma Day’ Click here
I had started to decrease the 2g Mycophenolate daily dose of the previous five years, at the start of March 2004, and by the end of June, I was physically exhausted from pushing my body to perform a 60hour week whilst taking such a high dose of immunosuppressants / chemotherapy.
I had to accept that my body needed a rest and a change in my lifestyle, if I was to have any chance of getting remotely better. 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
Sunday nights used to be my worst night, whilst in the abyss of accepting my ‘non-working’ reality. 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.
I would spend days which turned into weeks and then months and years, in agony, barely able to do the most simplest of tasks, whilst the pain of my entire body and lack of sleep as a consequence, dictated what had become my reality.
Upon my enforced career change to repairing my body, my full attention is dedicated to minimising my symptoms to a tolerable manageable level. This is driven by the 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.
In 2015, I was honoured to present ‘Systemic Sclerosis – a patient’s perspective’ at the annual British Society for Rheumatology (BSR) conference which was held in Manchester that year. 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.
To view my presentation click here
For more details and to register for Rheumatology 2017 25 - 27 April ICC Birmingham,
To read a synopsis of the Scleroderma sessions held at last year’s conference click here
Although I very much enjoyed the day and its contents, the entire physical exertion forced me to return to my bed for the next ten days. 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), or NHS England.
In 2015 I was honoured to have been a member of the group to present at the European Parliament for World Scleroderma Day, in Brussels.
To view the presentation Click here
However, the six week bed rest needed, following the physical exertion of this trip, was a harsh reminder as to why I had not been abroad for over a decade.
To read more of being your own scleroderma Raynaud's advocate, click here
All in all, I have to remind myself that having a job role or status does not define who I am. I have shared more of my coping strategies in relation to this, on my personal blog, cosmicfairy444
And, for the days when my body is in protest for having pushed myself too much, forcing me back to my bed, I must remember that ‘My Job Today Is To Simply Get Better’.
Living the dream, scleroderma style.
An edited version of this article was published in my Column with Scleroderma News Click
The importance of an early diagnosis click here
the role of medical research click here
the importance of expert specialist centres click here
diet and nutrition click here
taking part in research trials click here
the UK guidelines for management and treatment of Scleroderma click here
my skin is cured from scleroderma click here
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Living the dream, scleroderma style, hoping for a cure
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