Sue did an excellent presentation at the Hampshire Pop Up, sharing her story, why she supports the charity and also why community and Circles are so important to her. Read on to find out more.
Hello, I’m Sue Collis and I’ve been Overcoming MS Ambassador for Hampshire for five years.
I have followed the Overcoming MS Program since 2013, starting with the diet, followed by meditation. My major symptom is fatigue which makes exercise challenging but I do what I can with the help of a physio.
I was diagnosed 35 years ago, in 1989, for context it was before the fall of the Berlin Wall. We had a baby less than a year old and I was scared I wouldn’t be there for him as he grew up. I had an MRI in the only scanner in the south of England in Queens Square, London. There were no drugs for MS and there was no distinction between Relapsing Remitting and Progressive disease. I had no information other than wheelchair leaflets from the MS Society. Eventually I was told mine is Primary Progressive as I had no relapses. There are still no drugs suitable for me. Every year, I experienced new and varying symptoms, accumulating some disability and eventually gave up working full-time mostly due to fatigue in 2010 when I was 50.
In 2012, searching for MS information online I discovered Overcoming MS. I had been following a low-fat diet, but still eating dairy. The big change for me came when I gave up dairy in January 2013 and very soon afterwards most of the pain and numbness left. Lots of niggling, weird, invisible symptoms disappeared never to return. I had my last new symptom, pain and numbness in my hands, in September 2013 about nine months after starting the diet. Since then, as part of a research project a few years ago I had two Research MRI scans 2.5 years apart which showed no changes, and normal brain volume for my age. In my experience the benefits of following Overcoming MS build up over time with less pain, more clarity of thought, better decisions, and being better able to stick to it as a lifestyle change, for life.
I have some tangible reasons for my adherence to the program and support for the charity. In particular, just before finding Overcoming MS, I was actively considering a stair lift or maybe having to move house. I only went up and down once a day and had strategies to manage my worsening mobility. I even went to see a stair lift fitted nearby to see if it might be a suitable design. We fitted a small additional banister at the top of our stairs.
Here I am, twelve years later, living in the same house with stairs, without a stair lift and the extra banister is long gone. I go up and down when I feel like it.
The baby is now a 36-year-old responsible adult, who this week accompanied 70 year 11s to Berlin on a school trip. I saw him through every stage of his childhood after all!
I have mobility issues, fatigue and some disability from the 20 odd years that I had MS with no intervention at all. I mostly use a stick outdoors after a fall last year, as I have a dodgy knee, but I averaged about 7,000 steps a day on holiday last week even with rest days. My life with MS isn’t perfect but it’s hugely better than I ever thought it might be. I am extremely grateful for the work done by George Jelinek and Linda Bloom. Members of the Hampshire Circle and the wider Overcoming MS community are terrifically supportive, to me and to each other.
Now, I would like to explain who we are, and what we do in Hampshire.
A group of four of us following Overcoming MS in Hampshire started meeting in September 2013 to share food and support each other. We advertised via the old Overcoming MS forum and over the years we have met people who have come for a short time then graduated to live their lives with less support though we do see some of them occasionally. Others have joined us and still come along to lunches today. We became a Circle when Overcoming MS introduced them worldwide and continued with our lunches. Of the original four of us, one stopped coming years ago, one moved to Germany, still involved with Overcoming MS as an Ambassador and two of us are still meeting!
We all meet at my house here in Kingsworthy, in Winchester, one Saturday lunchtime a month. Usually there are about six of us, we each bring a dish or two to share but we don’t arrange a menu in advance so that there’s no pressure. It’s fine to come along to enjoy food brought by others and not bring anything yourself – we all have days like that! The advantage of eating like this is the sheer variety of food that we share and the recipes we learn about, compared to a restaurant or pub where often there’s only one choice on the menu that can be modified for Overcoming MS and we’d all end up eating the same. We always have plenty and share it out at the end. It’s a very relaxed occasion. We do talk about MS and Overcoming MS but also about other things. We are very happy to meet new people and your partner, or a friend can come along, especially for the first few lunches.
Dates are announced in late November for the following year so that we can put them in our diaries, and they are set up as Events in the Live Well Hub. After lunches we share photos and recipes. Flexibility is important to enable everyone to be supported and we have also had zoom calls if that makes it easier to arrange a day or time for some people. We are happy to accommodate any suggestions from other Circle members for additional events or times that suit them but the monthly lunch is now a fixture.
Personally, I really benefit from meeting regularly with others who are following Overcoming MS and living well despite having MS. I feel much better, mentally, and physically, for days after each lunch.
I am reminded that when I was on a Zoom call a couple of years ago with George Jelinek, he was asked about the ‘next pillar’ if he were to recommend something to complement and build on the Overcoming MS program, he simply said ‘Community’, then said that there are real benefits to be had from meeting others with similar experience and outlook, and this is certainly how I feel about the Circle. One of our Circle members recently commented that she “really appreciates the sense of community and friendship.” She said that even when we aren’t talking about MS there is a sort of relaxed knowing and understanding that comes from spending time people who are living with MS and who have chosen to adopt Overcoming MS as part of their lifestyle.
If you would like more details about the Hampshire Circle, or to join us, you can contact me via the Overcoming MS Live Well Hub.
Further reading: