Hiding in plain sight

Hiding in plain sight

I have read a lot of MS diagnosis stories. I even learned to shorten ‘diagnosis’ to ‘dx’ on social media (how cool am I?). Every one of those dx stories has touched me in one way or another. It’s that familiar but aching story of a young, vibrant person (it’s a prerequisite to be beautiful and intelligent to have MS), starting to experience the wheels loosening and threatening to come off in the midst of a busy career, family life, intimate relationship, and busy lifestyle.

Those dx stories helped keep me afloat during an extraordinarily difficult time. As well as reading experiences from other MS’ers, I became a DMT anorak and could bore any friends or family members for hours with the contrasting theories of escalating therapy strategies versus hit, hard and fast.

But after the dx and the dx stories, there was a gulf starting to form for me.

Sensing this on some level, I decided to become ‘bounce back MS Queen’. I threw myself mercilessly into work and family life, never turning down meetings, projects, work trips or social events.

3 years later, the inevitable crash came. Physically I was doing really well. I knew that my EDSS score was very close to normal which seems to be the holy grail of Neurology and clinical trials etc. But mentally and therefore emotionally I was doing really badly.

I took a career break that became sick leave and spaced out on daytime TV until I had to pull myself together in the afternoon and collect the kids from school. My career was over, my mental health was deteriorating and I was suffering from social isolation and loneliness.

After many months, I finally woke up one day and summoned the motivation to ask ‘How did I get here?’. I started by trying to understand ‘here’. Luckily I had a checkup scheduled with Neurology. I was able to start articulating that my MS was more cognitive than physical, which led me to seek out a NeuroPsychology assessment. This was going to be a challenge, considering that my brain training consisted of ‘This Morning’ and ‘Homes Under the Hammer’ for the previous 9 months. But I was able to objectively look at my MS for the first time. A lot of my cognitive function was completely intact. But I was struggling with information processing and visual cognition. Gaining this understanding of my MS meant that I could stop the cycle of self-analysis eg. worrying all day because I had forgotten the name of a pop song from the 80’s - Ken Bruce, why? Instead, life was going to be about what I could do!

But it was only half the story. The NeuroPsychologist mentioned that work/activity could have a positive rehab effect if done at the right level. But I could drive anxiety and depression if I pushed myself too hard.

It took a while to digest but I realised that I had been punishing and pushing myself for a very long time. My whole life really. By the time MS came along, the way I mistreated myself was making me anxious and depressed.

I reached out to friends who recommended a fantastic Psychologist. I worked with her over several months to unlock aspects of my life and start to piece the journey from the past to my new ‘here’. She introduced me to the brilliant work and teachings of Gabor Mate and especially his book: ‘When the Body Says No: the Hidden Cost of Stress’.

Piecing the journey together is only the start. My tendency will always lead to going rogue again. Overdoing things. Overthinking everything. A family member pushed me towards health coaching that helped me look at aspects of my life that I wanted to change and that led me to Mindfulness. This has been a game-changer for me.

Every day I try to build mindfulness into my daily practice.

The inner person must integrate with the light-hearted, laid-back outward appearance.

The road ahead is uncertain and I may need more treatment physically and mentally. But I am no longer hiding in plain sight.