Raynauds Scleroderma Global Patients: ‘AH, Great- Another Day To Spend In Bed’, Raynaud's, Scleroderma, Auotimmune Rare Disease, Nicola Whitehill

‘AH, Great- Another Day To Spend In Bed’

Scleroderma, Raynaud's, Autoimmune Rare Disease.

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‘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 wrote about my initial diagnosis in 1997, here

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

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.

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

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.

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!

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

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.

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.

I wrote about the full time job of managing my symptoms, here

‘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.

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.

An edited version of this article was published here, in my Column with Scleroderma News. May 2017.

Scleroderma Family Day 2020

25^th 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: NIHR 'Research gives hope to Rare Disease patients', Click here

Rare Disease Day 2019: Leaving a Legacy Gift, Click 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

2017 Rare Disease Day Medical Research

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

2016 Rare Disease Day Patient Voice

2016 Rare Disease UK Parliamentary Reception

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.

To read about medical research at the scleroderma unit, Click here

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:

Early diagnosis

Expert specialist centers

Access to innovative medicines

supported by a medical ‘dream team’

(expert specialist as the clinical lead).

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

2018 Scleroderma Awareness Raising and Medical Research, Click here

SCLERODERMA:

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- How to Diagnose, Click here

'All you need to know', 2016 Awareness Video, Click here

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

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.

Read more, here.

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.

1^st 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 2018, Click here

World Scleroderma Day 2017, 29th June, Click here

World Scleroderma Day 2016, 29th June. Origins of the date, Click 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

To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here

To view the EULAR treatment guidelines, Click here

To view Thermograph Video, Click here

To view Thermograph image, Click here

My Raynaud’s reality, Click here

The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here

50 Shades of Blue, Click here

For latest updates follow / subscribe:

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@RaynaudsRf

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Raynauds Scleroderma Awareness Global Patients

#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