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My First Post-An Introduction

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  • My First Post-An Introduction
Coping with the Bad Days
3rd January 2018

In 2008 I was diagnosed with complex mixed connective tissue disease (Scleroderma, Raynauds Phenomenon/Systemic Sclerosis /Myositis/ with inflammatory Rheumatoid Arthritis overlap).

This disease came as a bolt out of the blue. One day I was fine, the next I was unable to move, my joints were swollen and I struggled to stand.

Here began my long, painful and frustrating journey into the autoimmune disease abyss………

My local GP ran blood tests which were inconclusive. He put me on a high dose of Prednisolone and NSIDs and referred me to a Consultant Rheumatologist at a local hospital. I was extremely fortunate to have private medical insurance at the onset of my disease. My consultant ran every test imaginable and I was diagnosed in a short space of time. I was referred onto the Royal Free London Hospital under Professor Chris Denton and his team.

With that initial diagnosis, I believed that my life was over and that I had been given a death sentence.

I fell into depression. I felt very sorry for myself, my health deteriorated rapidly. I lost two stone (12.7 kg) breathing became difficult as my lung function deteriorated and my hands started to tighten and retract into claws.

My emotional health mirrored my physical health and I withdrew into myself. Life was a struggle and I contemplated suicide on numerous occasions.

The single motivating factor that prevented me from taking my life, are my beloved sons. In my head, I bargained with myself to just keep going until the boys are old enough to take care of themselves.

I have a ‘be strong driver’ (roughly translated it is an internal pressure in the things we must do) inherited from my mother this pulled me through my darkest days (which I will share later on).

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