DAY 25 Scleroderma Awareness Month:
PAIN and HAIR LOSS
I know other patients with the diffuse subset diagnosis who experience little pain.
I focussed on fatigue in DAY 14 Scleroderma Awareness Month 2016.
Along with, time management by way of, being horizontal for the days leading up to a ‘big’ day out.
For example, travelling to London (three hour car / train journey each way) is a ‘big’ day out for me, which will be followed with ten days of feeling even more fragile than ‘normal’ scleroderma-like fragile.
I am no longer able to participate in many activities which the ‘pre-diagnosis me’ enjoyed. And, sadly, this list includes alcohol.
I would never have believed ‘back in the day’ that I would be ‘booze free’ of a weekend! I think that the last time I had alcohol was on my fortieth birthday, 3 years ago.
Although the alcohol numbed my bodily pain momentarily, the after effects of when the toxins were being expleted from my body were severe, and it took days / weeks to feel marginally better.
So I chose to stop the drink, as I want to feel good, and after all, alcohol is a natural depressant, which I certainly do not need, given, a scleroderma diagnosis.
However, I am grateful that I still have my hair, even though hair loss remains a daily occurrence, as can be seen by my scleroderma teal hairbrush, in the above image.
My hair loss has slowed since I no longer take any chemotherapy or immunosuppressants to manage my scleroderma symptoms.
Eight weeks later, I had to accept that I had to change my lifestyle to respect my symptoms, forcing me to relocate to my family home town of Southport in the UK.
My full time job is managing my symptoms to a tolerable level.
I choose to focus on the things which I can do and make me feel good, even when my tin man body which feels as though it has been wrapped in barbed wire and dipped in concrete, has other plans for day.
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
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