‘AH,
Great- Another Day To Spend In Bed’
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
‘AH, great, another day to spend in bed’ – said by no chronically ill patient, ever.
Living with the currently incurable, autoimmune Rare Disease, Scleroderma and Raynaud’s, for me, has certainly meant that I have had to spend more time in my bed over the duration of the last 19 years, than I have, anywhere else.
Upon my enforced career change to repairing my body, my full attention is dedicated to minimising my symptoms to a tolerable manageable level.
This has taken extreme self discipline and devotion on my part, which has been driven by the desire to get better.
In particular, constant chronic pain and sleep are an unlikely combination, and can cause immense disruption to the body’s natural, inbuilt clock, if not kept in check.
I
would spend days which turned into weeks and then months and years, in agony,
barely able to do the most simplest of tasks, whilst the pain of my entire body
and lack of sleep as a consequence, dictated what had become my reality.
To read more about my ‘Tin man’ like symptoms, Click here
To read more about my ‘Tin man’ like symptoms, Click here
I
learnt the hard way, that a sleepless night followed by a day in bed, in an
attempt to ease the exhaustion, was not a good mix, since our natural body
rhythms are to be awake in daylight and asleep at night.
That is why human beings do not have night vision – because we are meant to be asleep during the night.
That is why human beings do not have night vision – because we are meant to be asleep during the night.
Sleep
is extremely important to allow the body to naturally repair and heal itself.
Just to turn over in bed would be sufficient, and still is, sufficient to wake me, due to the pain involved in trying to move my body to turn over.
I am no longer able to sleep on my right hand side as this induces acid to the back of my throat, even if I have not eaten for 5 hours beforehand.
I wrote about my Diet changes, here
Just to turn over in bed would be sufficient, and still is, sufficient to wake me, due to the pain involved in trying to move my body to turn over.
I am no longer able to sleep on my right hand side as this induces acid to the back of my throat, even if I have not eaten for 5 hours beforehand.
I wrote about my Diet changes, here
I am
extremely disciplined with myself when it comes to sleep.
As I know, that if I want to try and minimise the severity of my symptoms for getting through the following day, I need to have been horizontal in my bed for at least 8 hours.
I cannot remember the last time that I was able to sleep for this duration, however, I will make sure that my body has had, this length of time to rest each night.
As I know, that if I want to try and minimise the severity of my symptoms for getting through the following day, I need to have been horizontal in my bed for at least 8 hours.
I cannot remember the last time that I was able to sleep for this duration, however, I will make sure that my body has had, this length of time to rest each night.
I
have mentioned in previous articles, that, in my view, scleroderma takes the most
vibrant of personalities and morphs them into a shadow of their former selves
due to the devastating harmful effects it causes.
I am no longer able to be the social butterfly who was the last to leave any bar / nightclub / party, opting to now stay at home in my pyjamas, with my own personal party.
The advantages of this being, that I get to choose the music, there is never a queue for the bathroom, and I minimise my Raynaud’s attacks by keeping cosy.
When living with scleroderma and Raynaud’s, 'silver linings' for what has now become a reality, are few and far between!
I am no longer able to be the social butterfly who was the last to leave any bar / nightclub / party, opting to now stay at home in my pyjamas, with my own personal party.
The advantages of this being, that I get to choose the music, there is never a queue for the bathroom, and I minimise my Raynaud’s attacks by keeping cosy.
When living with scleroderma and Raynaud’s, 'silver linings' for what has now become a reality, are few and far between!
Over
the course of the last few years, my return to wellbeing routine has included
several adventures where I could assess the level of the actual reality of my
return to work.
I wrote about this more in my last article ‘My job today is to simply get better’, Click here
I wrote about this more in my last article ‘My job today is to simply get better’, Click here
My
most recent outing to test my 'return to work' capability, was to Preston Crown
Court appearing in the Family Court, only a few weeks ago.
I - my body, had been in training for this event, weeks prior.
For the days leading up to it, I made sure that my body was horizontal as much as possible.
I - my body, had been in training for this event, weeks prior.
For the days leading up to it, I made sure that my body was horizontal as much as possible.
On
the actual morning, I set my alarm to ensure I had sufficient time to carry out
my 3 hour routine required, before I can set out of my front door.
It sure did feel good to be back wearing my suit and utilising my professional skills.
However, the aftermath of my body protesting to such physical exertion just for that one day, lasted a week.
The day after, I was unable to do anything, other than sit in a chair with my legs up, feeling as though I had run to the moon and back.
It sure did feel good to be back wearing my suit and utilising my professional skills.
However, the aftermath of my body protesting to such physical exertion just for that one day, lasted a week.
The day after, I was unable to do anything, other than sit in a chair with my legs up, feeling as though I had run to the moon and back.
‘It is ok for you – you can
spend the day in bed’ is something which was said to me recently.
I only smiled in response, as I am pleased for the person who said it, that they do not live with a chronic illness, where spending another day in bed is a necessity, not a luxury or a personal preferential lifestyle choice.
I only smiled in response, as I am pleased for the person who said it, that they do not live with a chronic illness, where spending another day in bed is a necessity, not a luxury or a personal preferential lifestyle choice.
For, it is on these days,
that I remind myself - 'my job for today is to simply, get better', Click here, as well as,
to be independent of the good opinion of others.
For, I am the best judge for what is best for me, other than the scleroderma world expert Prof Chris Denton.
For, I am the best judge for what is best for me, other than the scleroderma world expert Prof Chris Denton.
An edited version of this article was published here, in my Column with Scleroderma News. May 2017.
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.
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.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
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.
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
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
‘AH,
Great- Another Day To Spend In Bed’
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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