Saturday, 29 April 2017

My Job Today Is To Simply Get Better From My Raynaud's, Scleroderma, Autoimmune Rare Disease Diagnosis - Nicola Whitehill

My Job Today Is To Simply Get Better 
From My Raynaud's, Scleroderma, 
Autoimmune Rare Disease Diagnosis
 


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

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 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.

To view my presentation, Click here

For more details and to register for Rheumatology 2018 May 1st - 3rd, Liverpool, Click here

To read a synopsis of the Scleroderma sessions presented at the 2016 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), 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

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. 

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   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here


Key Event Dates 2018, Click here     

Importance of an Early Diagnosis, Click here     

Taking Part in Clinical Research Trials, Click here    


The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here 

Expert Specialist Centres, Click here      

My Skin is Cured from Scleroderma, Click here      

UK Guidelines for Managing and Treating Scleroderma, Click here      

Fatigue, Click here      

Mobility, Click here    


Diet and nutrition, Click here     


Raynaud's, 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      



RARE DISEASE DAY:
The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception   


2017 Rare Disease Day Flashback  
  





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. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

VIDEO



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: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - here



The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

Sept 2017


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.
I am truly humbled and inspired by their work ethic. 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 diagnosing doctor, that I was looking at a 15month prognosis. 

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.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

Living the dream, scleroderma style.  


Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  



100% of your monies will be used for medical research purposes only. No wages or admin costs. Thank You.
#HOPE 


 

Last Update: April 2018





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