Wednesday, 11 April 2018

‘You should get out more’ - Scleroderma, Raynaud's, Autoimmune Rare Disease

‘You should get out more’  

These words of ‘advice’ were recently given to me by a non scleroderma patient friend. I am sure that this friend was meaning well in their approach. 

However, on the cusp of my 20 year anniversary since my initial diagnosis, I know that I am the best judge to determine what I should be doing, to minimise my daily symptom severity, and assist my body with its return to well being.  
 
I am eternally grateful to my medical care dream team, and the world expert Prof Chris Denton who is my clinical lead doctor. 

Even though, my current reality for my optimum symptom management, is my full time job

Living with a rare disease which is multi complex in its approach, makes for a busy diary filled with medical appointments. 

I am a lucky scleroderma patient by way of having only minimal internal organ damage, keeping my medical appointments to the most minimum that I can. 

Since the effort which goes into moving my 'tin man' body, has to prepared and planned for, days in advance – the Scleroderma Olympian.   

 

Having had an adventure out, whether it to be to attend a medical appointment or grocery shopping, my body will be in protest for a few days after. Accompanied by an overwhelmingly level of fatigue, which must be respected to minimise my pain severity and mobility.  

'Ah great another day to spend in bed' is certainly not one of my favourite mantras. However, I know that this will be inevitable, following any major physical exertion of ‘getting out more’, including ‘Living the dream being your own Raynaud’s scleroderma, rare disease advocate’.   

World Scleroderma Day 2015, The European Parliament, Brussels


I also have to remind myself that 'my job today is to simply get better'.  

I have a strict daily regime to assist with my return to well being, including my skin care routine and my diet

Upon waking it takes me 3 hours to be physically ready to be able to leave my front door.  

Following a 'big day out' to London, it takes me 10 days of intense rest to return my body to my daily routine regime. All of this makes for a time manager connoisseur. 
 
However, sadly, as all scleroderma patients, I am sure, will be able to relate, there is no precise science to predicting which symptoms will flare or appear on a day to day level. 

This fluctuation being exacerbated by the weather temperature / time of year. 

Here in the UK we are approaching the end of summer. I am trying to not wail at the thought of my house arrest daily reality, as a result of the forthcoming seasons. 

My Raynaud’s symptoms are so severe that the 'Magic of Summer' brings only marginal improvements. 

These include feeling warmer, and not having to wear as many layers of clothes. 

Sadly, my inner ‘Bond Girl’ is still suppressed by the ‘all year round’ Ugg boots and gloves, essential accessories.   


Hottest Day of 2013 - I have to wear Ugg boots and gloves


For me, the seasonal change, brings along a different set of symptoms, including my skin does not feel as soft. 

Although, I continue to remain in a state of elation that 'my skin is cured from scleroderma'. 

My skin is very sensitive to clothing materials, making my chosen preferred outfit to be my pyjamas or sweat pants. This is not because I am lazy, this is because, these items of clothing are the most comfortable against my skin.  

The actual process of getting dressed becomes a whole new feat with a scleroderma body, made worse with depleted energy levels. All of this must be accounted for in preparation for ‘getting out more’. 
 
This month I have several ‘dates’ which I am fine tuning my body for. 

These include the UK Aortic Dissection Awareness Day on the 19th September. 

As well as, my well being monitoring appointment with Prof Denton at the expert centre, Scleroderma Unit, The Royal Free Hospital. 

So that is a BIG day out, with the following 2 weeks blocked out in my diary, in preparation for my body’s protest at the BIG day out.   


December 2016

And then, October is Raynaud’s awareness month.   





Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates  




And, as for being told to get out more – I remain independent of the good opinion of others, CosmicFairy444.   

   



Living the dream, scleroderma style.

Please DONATE to help fund medical research at The Scleroderma Unit, The Royal Free Hospital, London where 100% of all of your monies will be used for medical research purposes only. Thank You.

#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief
 



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

More unmet clinical needs  

Rare Disease Day 2016



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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