Summer 2016 saw the Olympic games held in Rio de Janeiro with 206 nations participating. I have often likened my diffuse scleroderma experience / existence to being similar to that of an Olympian athlete, but without the athleticism and without any competition with anyone else.
Along with a winner’s attitude where I want to feel good, and one day, be able to say ‘I used to have scleroderma’.
At the height of my disease activity, this was impossible for me to do and was excrutiatingly painful.
In 1999, I had a most unpleasant experience at a friend’s wedding reception when dancing in a circle whereby everyone was linking arms, and my tight skin made me unable to take part.
|Tri-colour change in my fingers during a Raynaud's episode - VERY PAINFUL, PREVENTION as there is no cure|
Now, my daily routine is dedicated to addressing my symptoms to make my day as easy as possible. My mermaid bathing routine not only helps my skin, but also, my swollen joints and circulation.
Due to me having little success with the medications used to treat Raynaud’s, I am always mindful to prevent a Raynaud’s attack in the first place.
For me, this is helped by a warm bath within an hour upon waking, otherwise it is likely that getting undressed to get into the bath will prompt a Raynaud’s attack.
I am no longer able to wear jeans as the denim is too harsh- even my soft Armani jeans, which have remained in the bottom of my wardrobe for too long….
I discussed more about the absconsion of my inner Bond Girl in my article 'The Magic of Summer'.
Buttons and zippers can bring along levels of frustration way disproportionate to their actual size.
I now remove this anger / patience trigger by buying and wearing clothes which are easy to put on and wear, with my fashionista pride pushed to the wayside.
I have tried to hone a quicker routine but my body dictates the pace, and usually feels as though it has been covered in barbed wire and dipped in concrete.
The ‘rest’ days must be interpreted as that- ‘rest days’ and not ‘being lazy days’, as ‘rest days’ are extremely important for the body to recover.
To read my article on 'Mobility', Click here
Especially whereby an observing person may think that they are trying to be helpful with their comments of ‘you have to push yourself’, when in actual fact, they have not got a clue and are in no place to be offering such judgements, since they are not living with my diagnosis.
Sadly, I have experienced this from fellow patients also. This is an important reminder that there are no two scleroderma patients who present with the exact same set of symptoms.
Along with attitude, which is everything, so pick a good one. I want to feel good.
An edited version of this article was published here, in my Column with Scleroderma News.
To read my articles:
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