Humans of Scotland

Lorraine’s story – what ‘MS’ means to me

"But I am not my MS. There is more to me than that. I have tenacity and continuously adapt."

Lorraine
This story is about: Multiple Sclerosis

Multiple Sclerosis – My Story

My name is Lorraine Johnston. In 1988, I was in The Royal Air Force, however an injury during a training exercise resulted in a medical discharge. I later joined the Reserves and became an Under Officer in the Royal Engineers, teaching in the Army Cadet Force.

I had careers working with children and adults in a social care setting, who had a wide range of challenges including physical and mental disabilities, addictions, homelessness and repeat offending.

Then, because health, safety and well-being are at the heart of everything I do, I studied and became a H&S advisor for an engineering company.

Latterly, I became a trainer/assessor in Social Care, Health and Safety and First Aid.

I organised many fund-raising projects for charities and volunteered with St Andrews Ambulance Corp, The Red Cross, Habitat for Humanity, and was a civilian instructor for the Air Cadet Force.

As I write this now, with sadness and reflection, it’s clear that I loved to work and was happily juggling being a mum, working, and doing some voluntary projects too.

That was all going very well, until I had a frightening 40th birthday.

I woke up early and noticed that I had a strong eye twitch. This progressed throughout the day and by the time I was having a special birthday dinner at a nice restaurant, the twitch had spread from my eye to my lip and my cheek felt like it had a warm, damp facecloth on it. This, I was to learn later, was ‘Facial Myokymia’ – my first symptom of what was soon diagnosed as Multiple Sclerosis.

That was in 2008. Today, you would notice my awkward gait and my mobility challenges, but that’s just the visible part.

Chronic pain, paraesthesia, incontinence, fatigue, and a body that feels abnormal and dysfunctional; these are the invisible parts.

But I am not my MS. There is more to me than that. I have tenacity and continuously adapt.

Now I write children’s stories. MS no longer stands for Multiple Sclerosis for me; it now stands for Manuscript – This is My Story.

You can read more about Lorraine’s writing on her website (this link will take you away from our website)