Welcome to my blog - I was diagnosed in 1997, and given a 15month prognosis. In 1998 I became a patient at the Scleroderma Unit, The Royal Free Hospital. The cause and cure to both Scleroderma and Raynaud's remain unknown. Please donate to help fund medical research where 100% of your donation will be used for research purposes only.
#SclerodermaFreeWorld #RaynaudsFreeWorld #RareDisease
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
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
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
edited version of this article was published in my Columnwith Scleroderma News here
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
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
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.