Tuesday, 9 May 2017

‘AH, Great- Another Day To Spend In Bed’, Raynaud's, Scleroderma, Auotimmune Rare Disease, Nicola Whitehill

‘AH, Great- Another Day To Spend In Bed’ 
Raynaud's, Scleroderma, Auotimmune Rare Disease 
 


‘AH, great, another day to spend in bed’ – said by no chronically ill patient, ever. 

Living with the currently incurable, autoimmune Rare Disease, Scleroderma and Raynaud’s, for me, has certainly meant that I have had to spend more time in my bed over the duration of the last 19 years, than I have, anywhere else.  
Upon my enforced career change to repairing my body, my full attention is dedicated to minimising my symptoms to a tolerable manageable level. 

This has taken extreme self discipline and devotion on my part, which has been driven by the desire to get better. 

In particular, constant chronic pain and sleep are an unlikely combination, and can cause immense disruption to the body’s natural, inbuilt clock, if not kept in check. 


I wrote about my initial diagnosis in 1997, here 

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. 

To read more about my ‘Tin man’ like symptoms, Click here  

I learnt the hard way, that a sleepless night followed by a day in bed, in an attempt to ease the exhaustion, was not a good mix, since our natural body rhythms are to be awake in daylight and asleep at night. 

That is why human beings do not have night vision – because we are meant to be asleep during the night. 

Sleep is extremely important to allow the body to naturally repair and heal itself. 

Just to turn over in bed would be sufficient, and still is, sufficient to wake me, due to the pain involved in trying to move my body to turn over. 

I am no longer able to sleep on my right hand side as this induces acid to the back of my throat, even if I have not eaten for 5 hours beforehand. 

I wrote about my Diet changes, here 

I am extremely disciplined with myself when it comes to sleep. 

As I know, that if I want to try and minimise the severity of my symptoms for getting through the following day, I need to have been horizontal in my bed for at least 8 hours. 

I cannot remember the last time that I was able to sleep for this duration, however, I will make sure that my body has had, this length of time to rest each night.

I have mentioned in previous articles, that, in my view, scleroderma takes the most vibrant of personalities and morphs them into a shadow of their former selves due to the devastating harmful effects it causes. 

I am no longer able to be the social butterfly who was the last to leave any bar / nightclub / party, opting to now stay at home in my pyjamas, with my own personal party. 

The advantages of this being, that I get to choose the music, there is never a queue for the bathroom, and I minimise my Raynaud’s attacks by keeping cosy. 

When living with scleroderma and Raynaud’s, 'silver linings' for what has now become a reality, are few and far between!

Over the course of the last few years, my return to wellbeing routine has included several adventures where I could assess the level of the actual reality of my return to work. 

I wrote about this more in my last article ‘My job today is to simply get better’, Click here 

My most recent outing to test my 'return to work' capability, was to Preston Crown Court appearing in the Family Court, only a few weeks ago. 

I - my body, had been in training for this event, weeks prior. 

For the days leading up to it, I made sure that my body was horizontal as much as possible. 

On the actual morning, I set my alarm to ensure I had sufficient time to carry out my 3 hour routine required, before I can set out of my front door. 

It sure did feel good to be back wearing my suit and utilising my professional skills. 

However, the aftermath of my body protesting to such physical exertion just for that one day, lasted a week. 

The day after, I was unable to do anything, other than sit in a chair with my legs up, feeling as though I had run to the moon and back. 

I wrote about the full time job of managing my symptoms, here  

‘It is ok for you – you can spend the day in bed’ is something which was said to me recently. 

I only smiled in response, as I am pleased for the person who said it, that they do not live with a chronic illness, where spending another day in bed is a necessity, not a luxury or a personal preferential lifestyle choice. 

For, it is on these days, that I remind myself - 'my job for today is to simply, get better', Click here, as well as, to be independent of the good opinion of others. 

For, I am the best judge for what is best for me, other than the scleroderma world expert Prof Chris Denton.




An edited version of this article was published here, in my Column with Scleroderma News. May 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




   




No comments:

Post a Comment