Wednesday, 10 May 2017

MOBILITY: Scleroderma, Raynaud's, Autoimmune Rare Disease, Nicola Whitehill


Mobility 
Scleroderma, Raynaud's, Autoimmune Rare Disease 



In Sept 1997, I was diagnosed with diffuse Systemic Sclerosis (scleroderma) and told by my medical consultant at that time, that, I would have to use a wheelchair by Christmas. 9 months later I changed my medical consultant to the super human-beings who are Prof Dame Black and Prof Denton.

To read my article 'Initial Diagnosis', Click here   

Fast forward to April 2016, and I have reluctantly bought an electric scooter to help me walk my dogs. 

Although, as you can see from photo, my white dog, Mitzy, prefers to be in the driving seat!  

Living the dream with the dream team at Birkdale Golf Course, UK


The decision to buy the scooter was preceded by years of me pushing myself through the day, to perform what I needed to, for that day, to then come home and collapse on my sofa / bed, counting the hours until I had to be mobile again.  

The pain would force me to be unable to do anything else for the rest of the day, other than be horizontal in my bed with tears rolling down my face.  


Although, I have minimal internal organ involvement, thankfully, and my heart goes out to my fellow patients who have internal organ involvement, my musculoskeletal system has taken a huge hit.

I can not remember the last day that I did not have any pain all over my body, with only the hardcore opiates being effective for some momentary relief, and of course the mind dense fog which accompanies them, makes them an emergency option, only, for me.

This has led to making my day to day reality that I live through the pain by staying at home and avoiding physical exertion unless wholly necessary eg. medical appointments, weekly BIG shop….

A walk in the park for me, as for most other patients, I am sure, is a huge effort- similar to a mountaineering expedition! I give a whole new description to the phrase ‘a walk in the park’ since Ssc appeared in my body!

The preparation for which, does not take a casual 10minutes to get ready and out of the door, as seen in pre-diagnosis days, but hours of preparation by attending to my other symptoms (bathing routine, diet, steadying internal temperature etc), before the mammoth task of getting dressed! 

This brings along added extra challenges- to make sure that the correct clothing and layers are worn, which can be easily removed in the event of a no pre-warning ‘burn up’.

And of course, items of clothing are another challenge! 

The material is very important to avoid any skin irritations, as well as clothing must be loose- underwear is most uncomfortable!

My preferred daily outfits, (measured by ease of symptoms), are my fleece pyjamas, dressing gown and Ugg boots with Heatsaver socks to keep my feet warm. 

I wear gloves for most tasks and use a microwaveable heat warmer to keep my hands warm.

There is certainly no danger of me being caught for speeding with my new wheels. I am only able to manage the slowest pace, which is represented by a tortoise on the speed dial. 

As, the bouncing around vibration against my back makes the slow pace the least painful option – much to Mitzy’s delight as she struggles to keep up on the fast speed, which is represented by a hare on the speed dial!

Although, I feel disappointed that I am not currently able to tear around the park with my dogs like a hare, I am so happy that I have finally stopped dragging myself around, and can return home without collapsing in total agony!

As well as, it is a great feeling for me, seeing my little dream team companions out and about in nature, loving life! I need to be more dog haha  

April 2016. 


2017 Update

Well it is now over 12months that I have been using my electric scooter to scoot around paradise (the block) with the dream team (my dogs). I really wish that I had given into my stubborn pride years ago, and saved myself days of extra agony from having forced my ‘tin man’ body to perform.

To read my article ‘Living the dream as the real life tin man’, Click here 

Although my symptoms still demand a disciplined daily routine, by not forcing and dragging my body to exercise if I really do not feel up to it, and thereby causing extra pain, I have been able to find a few more hours in my day where I can feel more productive, instead of being immobilized in excrutiating, brain hijacking pain.

I wrote about:

The full time job of managing the symptoms, Click here 

‘Ah great, another day to spend in bed’ said no Raynaud’s Scleroderma Patient, Click here 

My Job today is to simply get better, Click here 

Sadly, I still have some work to do, to improve my stamina before I can return to the gym. 

However, a return to the gym remains my goal. 

I have resigned myself to being a ‘home bird’ for most of 2017, giving my body a rest from extra physical exertions of travelling to attend meetings, usually in London, by way of my expert patient roles.

The personal frustration which arises from my scleroderma, as well as my Raynaud’s symptoms, still remains a challenge, when being forced into continual hibernation and lockdown in an attempt to minimize symptom severity. 

I have shared some of my coping mechanisms on my alter ego personal blog:  www.cosmicfairy444.blogspot.co.uk

I am eternally grateful for access to the internet as this is my lifeline to the world.

I was delighted to have been quoted by abilitynet.org.uk on 2016 International Day of Persons with Disabilities #idpd : 

‘the internet is a lifeline for me. I’m under house arrest with Raynaud’s, 
but I still run a global community in my pyjamas’. 

Read more, here 
 
All in all, I am grateful for the internet for enabling me to share my personal experience of living with this life changing and potential life threatening disease, in the hope to help other patients and to be a source of education and reference. 

A much needed financial investment in research commitment from global centers, will most certainly improve the scientific understanding to cause and cure, with a #SclerodermaFreeWorld #RaynaudsFreeWorld becoming a reality.  




An edited version of this article was published here, in my Column with Scleroderma News April 2016. 

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




2 comments:

  1. You are so impressive.
    I hate this condition and how it traps bright vivacious vital people in pain
    I hope for huge strides this year in research and for you to heal and get back to the gym this year.

    ReplyDelete
    Replies
    1. HI there Posy, THANK YOU so much for your kind comments. Did you see that the theme for this years Rare Disease Day is Research? #SclerodermaFreeWorld
      http://raynaudsscleroderma.blogspot.co.uk/2018/01/2018-key-event-dates-for-rare.html

      Delete