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.
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice