Wednesday, 29 March 2017

Living the dream as the real-life 'tin man', Scleroderma and Raynauds style

I am The Real Life Tin Man

For today’s article and to tie in with Autoimmune Disease Awareness Month of March, I am going to focus on the overlap symptom of Musculoskeletal involvement. This symptom of stiff, inflamed, painful joints and muscles can be seen across a range of the autoimmune diseases, with arthritis being the most prevalent and commonly known, and diffuse scleroderma mimicking it. Along with Fatigue adding to the mix.

My diffuse scleroderma diagnosis has quite literally turned my body into me being the ‘real life tin man’. 

I experience continual muscle and joint stiffness which increases in severity if I expect too much of my body or push my body to do too many tasks in one day.  Similar to the joint swelling seen in rheumatoid arthritis, all of my joints are painful, stiff and swollen, with analgesic / steroid medication providing marginal, borderline relief. 

I will start my day by bathing with liquid paraffin to ease my skin symptoms, which, after 19 years since diagnosis, my skin is cured from scleroderma.
Bathing provides a circulatory boost which settles my Raynauds symptoms and also provides some easing of the continual musculoskeletal pain. Sadly, I am no longer able to jump in and out of the bath, similar to Daisy from the 1970s TV programme ‘Dukes of Hazard’ jumping in and out of her car.

Since my diffuse scleroderma diagnosis in 1997, I can not remember a day whereby I have been pain free. Living in constant chronic pain is a mission within itself, without the added extra scleroderma symptom specialities (GI, ulcers, calcinosis etc) sprinkled into the mix. I focussed on several of the current unmet clinical needs here.

I have to be super organised with planning my time in relation to managing this highly demanding ‘tin man’ like symptom. Medical appointments clearly take priority in my diary, and should a trip to see one of the world’s leading scleroderma experts, Prof Chris Denton, at the Royal Free Hospital in London be due, weeks of advance preparation will have been started. 

As well as, I know that for the 10 days following a ‘BIG’ day out, I will be unable to function even less than usual, with an elevated level of pain and tiredness which words can not justify. I detailed more of my time management style here.
Since coming out of the scleroderma closet to the world in 2013, to raise awareness of this rare, extremely challenging disease, I have made several headlines including: 

To read the full article click here 

To read the full article click here

To read the full article click here

To read the full article click here

Although headline grabbing, this symptom of Scleroderma is most debilitating and still remains clinically inadequately managed in terms of quality of life for patient management. It certainly does feel as though my body has been ‘wrapped in barbed wire and then dipped in concrete’ as by the Daily Mail headline of last year for June Scleroderma Awareness Month.
Having been a regular gym frequenter, up to, and during the first few years of my diffuse scleroderma diagnosis, sadly, this activity is now a long distant memory of the last 18 years. The most basic of tasks such as getting dressed, on some days, can feel similar to a Mount Everest expedition, with the energy of a cardboard cut-out having been left out in the rain overnight.

It is now nearly 12 months since I purchased an electric scooter which I use for dog walking. I wrote about this here.
Over the years I have attended several physiotherapy sessions with little gain and lots of pain, and sheer exhaustion from trying. However, it still remains a personal goal of mine, to return to the gym, one day. In the meantime, I am working on my sofa surfing skills, allowing my tin man body to rest and heal- reminding myself that, my job for today is to simply ‘get better’. 

I discussed more of the autoimmune rare disease similarities here.
Our next big awareness date as a global community is June for Scleroderma Awareness Month, and of course, June 29th is World Scleroderma Day

Living the dream, scleroderma style.

Please make a donation to my Just Giving page where 100% of your donation will fund medical research led by Prof Chris Denton at the Royal Free Hospital in London, to whom I am forever grateful to for making sure that I have far exceeded my initial prognosis estimate
#SclerodermaFreeWorld #RaynaudsFreeWorld

No comments:

Post a Comment