‘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
To read more about my ‘Tin man’ like symptoms, Click here
That is why human beings do not have night vision – because we are meant to be asleep during the night.
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
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 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 wrote about this more in my last article ‘My job today is to simply get better’, Click here
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.
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 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, 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.
Planning for the Future, Click 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 2020: NIHR 'Research gives hope to Rare Disease patients', Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
2017 Rare Disease Day Medical Research
2016 Rare Disease Day Patient Voice
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
To read about medical research at the scleroderma unit, 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
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
|Prof Chris Denton and I, Sept 2017|
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.
|Chat Magazine May 2019|
|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.
|The global Raynaud's trailblazer - Dr Howell and I, Sept 2017|
#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.