Living Like the Real-life Tin Man, Scleroderma-style

Living Like the Real-life Tin Man, Scleroderma-style

Today, to tie in with Autoimmune Disease Awareness Month in March, I am going to focus on musculoskeletal symptoms of the condition. Stiff, inflamed, painful joints and muscles are hallmarks of a range of autoimmune diseases, with arthritis the most prevalent and commonly known, and diffuse scleroderma mimicking it. Fatigue adds to the mix.

My diffuse scleroderma has turned me into the real-life Tin Man. Watch the video here.

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

I start my day bathing with liquid paraffin to ease my skin symptoms. I still need to bathe even though, 19 years after my diagnosis, my skin has been cured of scleroderma. Bathing provides a circulatory boost, which settles my Raynauds symptoms and eases some of my continual musculoskeletal pain. Sadly, I can no longer jump in and out of the bath the way Daisy jumped in her car in the 1970s TV program “Dukes of Hazard.” Colder temperatures and damp weather make my symptoms much worse.

Since my diffuse scleroderma diagnosis in 1997, I cannot remember a day I have been pain-free. Living in constant chronic pain is a challenge by itself, without such extra scleroderma symptom specialties as GI, ulcers, and calcinosis. I focused on several unmet clinical needs here.

I have to be super organized to plan my time so I can manage my demanding tin-man-like symptoms. Medical appointments take priority in my diary. I prepare for weeks for a trip to one of the world’s leading scleroderma experts, Professor Chris Denton, at the Royal Free Hospital in London.

I also must take into account that in the 10 days following a big day out, I will function even worse than normal. I’ll have an elevated level of pain and fatigue that words can’t describe. I offered details about my time management style here.

Since coming out of the scleroderma closet in 2013, so I could raise awareness of this rare, extremely challenging disease, I have made several headlines, including:

read the full article here,

 

 

 

 

read the full article here.

 

 

 

 

read the full article here

Although headline grabbing, the Tin-Man-like symptoms of scleroderma are debilitating, and doctors don’t know how to manage it in way that offers patients quality of life. It does feel as though my body has been “wrapped in barbed wire and then dipped in concrete,” as the Daily Mail headlined a story last year about Scleroderma Awareness Month.

I was a regular at the gym before and during the first few years of my diagnosis, but sadly, this is a distant memory. The most basic of tasks, such as getting dressed, can feel like a Mount Everest expedition. And your energy level like that of a cardboard cut-out left out in the rain overnight.

It has been nearly 12 months since I purchased an electric scooter for dog walking. It helps. Read more here.

Over the years I have attended several physiotherapy sessions, with little gain and lots of pain, and sheer exhaustion from trying. Returning to the gym one day remains a personal goal, however. 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 simply to get better.

I discussed similarities of rare autoimmune diseases here.

The next big awareness date is June, Scleroderma Awareness Month. And, of course, June 29 is World Scleroderma Day.

 

Living the dream, scleroderma-style.

Please make a donation to my Just Giving page. All of the money goes toward medical research led by Denton, to whom I am forever grateful for ensuring that I have far exceeded my initial prognosis of 15 months.

https://www.justgiving.com/fundraising/sclerodermaunit-royalfree

#SclerodermaFreeWorld #RaynaudsFreeWorld

Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.
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Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.

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