For MPS Awareness Week we wanted to share the importance of mental health support for our community and why it's vital to provide specialist support like this for anyone living with, or affected by, MPS, Fabry or a related condition.
I was used to working in high gear for long hours
The birth of my first child at the age of 33 was on the heels of a busy and demanding career. I was used to working in high gear for long hours, often over weekends and overseas. Functioning fast and furious was my normal. The decision to take a career break to start our family would be blissful I thought. I was more than ready to become a mother and as my pregnancy progressed my nurturing hormones lulled me into a beautiful state of calm and I downshifted into the lowest oxytocin-filled gear as we prepared for the birth of our first child. All was wonderfully well in our world.
Wasn’t it all just about meditation and breathing?
Fast forward 20 years to January 2021. I was tempted into registering for a wellbeing course provided by the MPS Society. This is something I would never normally have considered. Wasn’t it all just about meditation and breathing? I’d never been into that kind of thing before, and, maybe it was boredom, but I was curious enough to give it a go. What did I have to lose, right? Also, I felt great. I didn’t have any mental health issues or depression. The course would be fun, a great way to connect with others in the wake of covid restrictions. It was a win/win.
I couldn’t have been more wrong. About all of it. My preconceived notions were shattered on the first day of the 8 week long, online course. I can’t believe how naive I had been. How blinded I had become to my mental health reality.
My brain had developed a whole new stratospheric gear as a response to MPS
Twenty years prior, our baby girl arrived and from the off, our little family would be challenged in ways we couldn’t have imagined. Born with MPS I, my calm oxytocin-filled body was launched, like a grenade into a living nightmare that all of my fellow MPS parents know all too well. Our story is shared by every parent whose child is diagnosed with any form of MPS. The next twenty years passed in a haze of near-death experiences, medical dramas, treatments, surgeries, problems and hurdles of every conceivable type. MPS had launched me unceremoniously into fight or flight mode. This wasn’t functioning on any high gear I had ever known before. My brain had developed a whole new stratospheric gear as a response to MPS and I remained, unknowingly in that gear for over 20 years.
The biggest barrier was actually me
The online wellbeing course I attended in 2021 under the impeccable management of Claire would not only dispel my ignorance and myths regarding wellbeing, it would also highlight the invisible damage I had sustained from 20 years of living in a state of perpetual impending doom and expectant catastrophe.
Identifying positive aspects of my life, together with recognising the barriers that were preventing access to that positivity was a very real skill that I learned from Claire. I discovered that family commitments, medical issues and never finding time were all barriers. But the biggest barrier was actually me. Myself. Functioning in a perpetual state of urgent response was my normal and was preventing my ability to access vital calm, inner peace and good mental health. I learned it really is not possible to pour from an empty jug.
Functioning in a perpetual state of urgent response was my normal and was preventing my ability to access vital calm, inner peace and good mental health. I learned it really is not possible to pour from an empty jug.
I don’t always get it right
Claire taught me to be mindful of everything I do, from having a cup of coffee each morning, in a quiet room looking out upon my garden, stretching and breathing, being mindful of movement through walking and yoga and remembering most of all, when faced with a hurdle that I have no control over, to pause, to anchor and to let it be.
Thanks to the amazing wellbeing course provided collaboratively with Claire and the MPS Society, I strive daily to pay full attention to my present, my thoughts and my surroundings. It's not always easy. And I don’t always get it right, but our mental health is with us forever and needs constant nurturing and kindness. As we all celebrate International MPS Awareness Day on 15 May, remember to make wellbeing your priority and be kind to your mind.
Our mental health service costs more than £30,000 every year and we need your help to continue to provide this essential support. During MPS Awareness Week you can help by donating via the Big Give website between 13 May and 19 May. The great news is that your donation will be doubled for FREE as long as matched funding lasts!
