My
Job Today Is To Simply Get Better
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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
On the 1st March 2004, I had started to decrease the
2g Mycophenolate daily dose of the previous five years, 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
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.
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 my desire to 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.
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.
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.
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), and, NHS England.
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.
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 'Living the dream - Being your own Scleroderma Raynaud's, Autoimmune Rare Disease 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
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.
#SclerodermaFreeWorld
#RaynaudsFreeWorld
An edited version of this article was published here, in my Column with Scleroderma News.
April 2017.
Scleroderma Family Day
2020
25th
Anniversary Meeting
The Atrium, Royal Free
Hospital, London, NW3 2QG
Chair: Professor Chris
Denton
PROVISIONAL PROGRAMME
09.30 – 10.00 Registration
and Coffee
10.00 – 10.20 Welcome Dame
Carol Black
Prof Chris Denton &
David Abraham
10.20 – 10.40 What
is a Biopsy? Dr Kristina Clark
10.40 – 11.05 Dental
aspects of Scleroderma Prof Stephen Porter
11.05 – 11.25 Gastrointestinal
problems – Dr Fiza
Ahmed
shedding
new light on old problems
11.25 – 11.50 Pulmonary
hypertension and the heart Dr Gerry
Coghlan
11.50 – 12.15 Scleroderma
cohort studies – Dr
Francesco
‘Learning
from our patients’ del Galdo
12.15 – 14.15 LUNCH
BREAK – see below
14.15 – 14.45 25
years of progress – Prof
Chris Denton
from
‘black box’ to ‘positive trials’
14.45 – 15.15 International
speaker – Dr
Madelon Vonk
Scleroderma
Management in Netherlands
15.30 Raffle
Lunchtime Discussions Groups /
Demonstrations include:
Clinical Trials Rachel
Ochiel and team
National Institute of Health Research Christine Menzies
Drug Information / monitoring Pharmacy
Massage Keith Hunt MBE
Pulmonary Hypertension Education / nursing Sally
Reddecliffe/Adele Dawson
Rheumatology Laboratory Research
Laboratory Staff
Scleroderma Education / Nursing Louise
Parker/ Joseph Cainap
Thermography Dr Kevin Howell
SRUK Ollie Scott
Sjogren’s syndrome British
Sjogren’s Society
To Read My Articles:
Gift in My Will, Click here
Planning for the Future, Click here
Rare Disease Day:
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
Read more, here.
I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.
I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Rare
Disease Day is a fantastic opportunity for the entire rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides –
Medical
Research
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same overall.
For optimum
patient care, 3 hallmarks preside: 
INVESTMENT in MEDICAL RESEARCH is CRUCIAL.
To read my articles:
Celebrating 20 years of being a patient at the Scleroderma Unit, Click here
2019 New Challenges, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
SCLERODERMA:
Global Patient Profiles 2018 Video, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, Sept 2017 |
 |
| June 2019 |
 |
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell.
I am truly humbled and inspired by their work ethic and commitment to
their patients.
I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004.
1st March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis.
 |
| Chat Magazine May 2019 |
I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, here
World Scleroderma Day
2015, 29th June.
 |
| James Carver, myself, Prof Chris Denton |
I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.
I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view the presentation, Click here
Raynaud's:
October:
Raynaud's, Click here
 |
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
@SclerodermaRF
@RaynaudsRf
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
My
Job Today Is To Simply Get Better
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
No comments:
Post a Comment