These words of ‘advice’ were recently given to me by a non scleroderma patient friend. I am sure that this friend was meaning well, in their approach.
However, on the cusp of my 20 year anniversary since my initial diagnosis, I know that I am the best judge to determine what I should be doing, to minimise my daily symptom severity, and assist my body with its return to well being.
Even though, my current reality for my optimum symptom management, is my full time job.
I am a lucky scleroderma patient by way of having only minimal internal organ damage, keeping my medical appointments to the most minimum that I can.
Since the effort which goes into moving my 'tin man' body, has to prepared and planned for, days in advance – the Scleroderma Olympian.
|World Scleroderma Day 2015, The European Parliament, Brussels|
Upon waking it takes me 3 hours to be physically ready to be able to leave my front door.
This fluctuation being exacerbated by the weather temperature / time of year.
My Raynaud’s symptoms are so severe that the 'Magic of Summer' brings only marginal improvements.
These include feeling warmer, and not having to wear as many layers of clothes.
Sadly, my inner ‘Bond Girl’ is still suppressed by the ‘all year round’ Ugg boots and gloves, essential accessories.
|Hottest Day of 2013 - I have to wear Ugg boots and gloves|
Although, I continue to remain in a state of elation that 'my skin is cured from scleroderma'.
My skin is very sensitive to clothing materials, making my chosen preferred outfit to be my pyjamas or sweat pants. This is not because I am lazy, this is because, these items of clothing are the most comfortable against my skin.
These include the UK Aortic Dissection Awareness Day on the 19th September.
As well as, my well being monitoring appointment with Prof Denton at the expert centre, Scleroderma Unit, The Royal Free Hospital.
So that is a BIG day out, with the following 2 weeks blocked out in my diary, in preparation for my body’s protest at the BIG day out.
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An edited version of this article was published here, in my Column with Scleroderma News.
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.