This year’s first Overcoming MS Retreat took place in March at the Ammerdown Centre in Somerset, UK. One of the attendees, Maryanne, told us about her experience.
My goal for the Retreat was to find my tribe and get motivated for the physical activity pillar of the Overcoming MS Program. I went in with the intention to meet, talk to and spend time with as many people as possible. Straight away it seemed easy to talk to everyone, they immediately felt like my people. Whereas usually, I feel aware of my differences, not as energetic, not able to participate in everything and feel somehow not enough. Here I felt like I was enough, my normal was normal.
I think we were all a bit nervous upon arrival, any social events are usually fraught with little difficulties and challenges for people with MS, but everyone seemed to be looking for connection, faces open, smiling and welcoming.
We didn’t start with name, job, location etc, in fact, I’m not sure we ever even got to the usual basic introductory information. We went straight to the heart of ourselves explaining our experiences of life, difficulties and challenges including the sort of information we usually only share with very close people and sometimes not even with them. This just bonded us all straight away. There was no judgement, just understanding as we bared our souls to each other a bit. It was liberating, thoroughly cathartic and mutually therapeutic.
I’ve been following the Overcoming MS Program for about a decade. My initial symptoms occurred in the early 2000s when I was 22, starting with double vision which I ignored. At the age of 26, I lost the surface feeling in my leg which I also ignored. At age 33, my legs started running without my permission and then sometimes when I stood up, I couldn’t step forward. Sometimes I practically fell forward, and I still ignored it. As I lived in Spain (which I still do) I didn’t have health coverage.
Although I was officially diagnosed in 2015, the year prior I had already begun seeking self-help methods, as I had a clear understanding of my condition. Finally in 2015, whilst still having problems with my legs, my eyes stopped moving in time with my head and my vision was so blurry that I could barely see myself in the mirror. I went to the doctor, rang my parents and told them I might need them to pay a big medical bill. After having MRIs, a lumber puncture and a chat, the diagnosis came. I wasn’t surprised, in some ways it was a relief. I already knew in 2014 and I had already found the Overcoming MS Program.
Since 2014, I’ve been consistent with following the Overcoming MS diet. After having a relapse in 2019 caused by stress, I got really involved with the stress management and meditation side of the Program. Formal exercise was what I need a real kick up the butt with so when the opportunity to attend the Retreat came up, I snapped it up and I’m incredibly glad I did. I felt like I needed to re-commit myself to the Program and with living in Spain, I didn’t know other people with the same goals to keep me motivated. I found everything I needed and more than I could even have imagined at the Retreat.
Hearing about the science and research data again, while it’s not lovely to hear what MS can do (I think a lot of us like to bury our heads in the sand), was the reality check I needed. This was swiftly followed by everything we can do to help ourselves and improve our outcome. Compelling, research-based information, not just one person’s experience but thousands.
Listening to Dr Jonathan White, who was one of the Overcoming MS Facilitators at the Retreat as well as a medical doctor, not only lent credibility to the already convincing information but also showcased his depth of knowledge. He, as well as all of the Facilitators, was readily available to answer any questions we had and was proactive in finding answers if he didn’t have them immediately.
We did mindfulness and stress management sessions to the hypnotic voice of Dr Phil Statin and came away a little dazed and deeply relaxed. I think we’ll all be trying to find his voice to follow for at-home sessions.
Dr Véronique Gauthier-Simmons led us in a lovely (not stressful, which is how I usually find yoga) yoga class and inspired me to join her online classes. Sam Josephs, a Nutritional Therapist passionate about Overcoming MS, helped everyone to understand that the diet pillar of the Overcoming MS Program in no way limits our ability to socialise and eat out with friends, which I know a lot of people feel when they first start the Program.
Last but by no means least, Dr Rachael Hunter led us through an exercise called ‘Dynamic Contemplation’ which involved a set of questions and intense active listening with a partner who we didn’t know well. All I will say is that I don’t think any of us will forget it and at the end, there was a lot of hugging.
All of the Facilitators were not only knowledgeable but passionate about the information they presented. They didn’t seem apart from the group at all but absolutely a part of the group and we all ate, socialised and chatted together as part of the same group.
On the note of eating, an account of the Retreat wouldn’t possibly be complete without mentioning the food! The bliss of walking into a restaurant where you can eat absolutely everything available, and there was a lot of beautiful and really tasty food, was like a personal heaven.
There was delicious buttery flaxseed oil from Flax Farm on the tables to pour as you wish over your food and there were desserts! A choice of desserts!! Wow, just wow and I haven’t even got to the cake breaks. In the mornings and afternoons, there was a cake break (and tea, but we cared more about the cake I’m sure), with a choice of cakes: coffee cake, chocolate brownie and some delicious mint chocolate slices. The first time I saw them, I looked around and said “Are these for us? Can we eat these?” They were so delicious, what an incredible treat and a lovely way to show that we don’t need to go without treats and delicious food following the Overcoming MS Program.
The Ammerdown Centre is set in the middle of typical and beautiful green English countryside, with fields of sheep next to a huge stone manor. It had everything: a restaurant, bar, a TV and chill room, a room for yoga, a bigger room for all the learning and group discussion that we did and bedrooms. I don’t know how many but enough for everyone to have their own and their own bathroom (those of us with MS will appreciate how important that is). So, we all had our place to escape to if we needed and I thought I would, but in the end, I didn’t ever feel the need. I just flitted between rooms, sitting and chatting with people in different places at different times.
In the evenings there were some social activities, the first night we watched a film called ‘Connection’ which was totally relevant and inspirational just like everything else on the Retreat. It was nice to have a bit of quiet time and just sit and watch something together. I took a glass of wine from the bar in with me and sat on a seat and others sat in the middle on the bean bags that were ever present throughout. On the second night, Claire and Nev came along and shared their story of Claire’s diagnosis, their meeting and their journey with Overcoming MS. Nev played guitar and they both sang original songs before we moved to the bar where they continued playing and we sang along. It felt so comfortable, personal and inclusive just like every other part of the experience.
My message to the other attendees after coming away from the Retreat was:
“Thank you for this profoundly soul-enriching experience. Meeting you all and sharing what felt like a deeply personal and special experience has made my heart smile.’
The people were by far what made the Retreat so special. My heart just swells with love now when I think about everyone I met there and the experience we shared. To be surrounded by people who inherently understand something so personal as the experience of not just having MS but following Overcoming MS, to share deeply embarrassing experiences and be able to laugh (maybe a little hysterically) and to learn for the first time or re-enforce this life-changing Program together linked us all in a deep and meaningful way.
It feels like we forged a network that will support us all in health and happiness for a long time, I hope. Somehow we turned having MS from being a bad thing to being something I’m grateful for, without it I wouldn’t be a part of this group.
My biggest and unexpected takeaway from being a part of this tribe has been its effect on my sense of self-worth. I came away feeling like a more capable and valuable person.
