Wednesday, 10 May 2017

Mobility - Scleroderma, Raynaud's, Rare Disease, Nicola Whitehill


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

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

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

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.

The importance of an early diagnosis click here 
the role of medical research click here
the importance of expert specialist centres click here
diet and nutrition click here
taking part in research trials click here
the UK guidelines for management and treatment of Scleroderma click here
my skin is cured from scleroderma click here 
BSR and BHPR guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs, Raynaud's, Scleroderma, Rare Disease click here  

EULAR guidelines for treatment of systemic sclerosis scleroderma, click here  

Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.


Living the dream, scleroderma style, hoping for a cure



#SclerodermaFreeWorld #RaynaudsFreeWorld

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29th June World Scleroderma Day. Read more here  

Scleroderma Awareness flashback 2016. Read more here  
Thanks to Sharon Esposito for her wonderful creativity



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