Mobility
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
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!
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| 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 excruciating, 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.
Scleroderma Family Day
2020
25th
Anniversary Meeting
The Atrium, Royal Free
Hospital, London, NW3 2QG
Chair: Professor Chris
Denton
PROVISIONAL PROGRAMME
09.30 – 10.00 Registration
and Coffee
10.00 – 10.20 Welcome Dame
Carol Black
Prof Chris Denton &
David Abraham
10.20 – 10.40 What
is a Biopsy? Dr Kristina Clark
10.40 – 11.05 Dental
aspects of Scleroderma Prof Stephen Porter
11.05 – 11.25 Gastrointestinal
problems – Dr Fiza
Ahmed
shedding
new light on old problems
11.25 – 11.50 Pulmonary
hypertension and the heart Dr Gerry
Coghlan
11.50 – 12.15 Scleroderma
cohort studies – Dr
Francesco
‘Learning
from our patients’ del Galdo
12.15 – 14.15 LUNCH
BREAK – see below
14.15 – 14.45 25
years of progress – Prof
Chris Denton
from
‘black box’ to ‘positive trials’
14.45 – 15.15 International
speaker – Dr
Madelon Vonk
Scleroderma
Management in Netherlands
15.30 Raffle
Lunchtime Discussions Groups /
Demonstrations include:
Clinical Trials Rachel
Ochiel and team
National Institute of Health Research Christine Menzies
Drug Information / monitoring Pharmacy
Massage Keith Hunt MBE
Pulmonary Hypertension Education / nursing Sally
Reddecliffe/Adele Dawson
Rheumatology Laboratory Research
Laboratory Staff
Scleroderma Education / Nursing Louise
Parker/ Joseph Cainap
Thermography Dr Kevin Howell
SRUK Ollie Scott
Sjogren’s syndrome British
Sjogren’s Society
To Read My Articles:
Gift in My Will, Click here
Planning for the Future, Click here
Rare Disease Day:
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
Read more, here.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
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.
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.
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
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 overall.
For optimum
patient care, 3 hallmarks preside: 
INVESTMENT in MEDICAL RESEARCH is CRUCIAL.
To read my articles:
Celebrating 20 years of being a patient at the Scleroderma Unit, Click here
2019 New Challenges, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
SCLERODERMA:
Global Patient Profiles 2018 Video, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, Sept 2017 |
 |
| June 2019 |
 |
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
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. Along with the
Raynaud's world trail blazer, Dr Kevin Howell.
I am truly humbled and inspired by their work ethic and commitment to
their patients.
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 original diagnosing doctor, that I
was looking at a 15month prognosis.
 |
| Chat Magazine May 2019 |
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. Read more, here
World Scleroderma Day
2015, 29th June.
 |
| James Carver, myself, Prof Chris Denton |
I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015.
I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view the presentation, Click here
Raynaud's:
October:
Raynaud's, Click here
 |
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
@SclerodermaRF
@RaynaudsRf
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
Mobility
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
You are so impressive.
ReplyDeleteI 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.
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
Deletehttp://raynaudsscleroderma.blogspot.co.uk/2018/01/2018-key-event-dates-for-rare.html