Hi, my name is Ronnie and I was diagnosed with MS in 2015. This year I signed up for one of the MS Society's Living Well with MS sessions, because I want to know how to best manage my MS, and to get a support network around me. Here’s some things I’ve learnt help me live well with MS.
1. Sharing with others
The sessions were a chance to share experiences with others and know we’re not in this alone. It felt like being in a group of friends who care for each other and help each other out the best we can.
I find that if I’m willing to share my experience it helps others be open and share theirs. But it’s OK if you don’t feel like sharing on the sessions – you can just listen and take things on board.
I’ve also joined an MS support group in Kirkcaldy. We understand what each other is going through - MS might affect us differently but we can still empathise with each other and have a laugh.
2. Pacing myself
The sessions help you think about how to take things at a pace that suits you.
When I’m trying to do something I used to be able to do and MS is making it difficult, I can get frustrated. So I’ve learnt not to put too much pressure on myself. Instead, I try and take a balanced approach, managing step-by-step and day-by-day.
3. Setting myself goals
We looked at goal setting on the sessions and how it can help to break your goal down into little chunks. For example, if your goal is to cook a meal you can plan ahead and think about the steps you need to take to get there, like buying the ingredients, etc.
This year I set myself a big goal: to do an Open University course. I’m now retired and I’ve found the course a useful way to structure my time. If I don’t feel up for it on one day then I’ll do extra study on the days I’m feeling fresher.
4. Learning communication skills
We looked at the kind of support you can get when you have MS – from family and friends to the wider MS community, and people like MS nurses, doctors, psychologists and physiotherapists.
For me, communications skills are about gaining the confidence to tell people what you need. For example, when you’re tired and need to go to bed you might need to explain to others that it’s nothing personal, it’s fatigue.
Communication can help you get the best out of the help that’s out there. In the past there were some things I was embarrassed about talking about. But I’ve come to realise that being open and expressing what I need is the only way I can find out what help is available. You’re not alone: there are people out there who are helpful and supportive.
5. Understanding my own MS
On the sessions we looked at how to understand what’s happening to you, how to support yourself and when to get support from others.
Each day can bring a different challenge - even without health issues. Sometimes things are easy, sometimes it’s a struggle. Life doesn’t come without stress but we can find ways to manage it.
For me, living well with my MS is all about keeping a balance and keeping stress levels down.
About the Living Well with MS sessions
The sessions were for two half days, over two weeks. There were about ten of us in the group and the atmosphere was friendly, unpressured and relaxed.
At the end of the sessions we were invited to join a private online group if we wanted to, so we can keep it touch and have discussions online. I’ve found this easy to use and a very positive experience.