Dr Stephanie Kilinc
Dr Stephanie Kilinc is a Health Psychologist and Senior Lecturer in Psychology at Teesside University. For the last three years she has been working with members of Neuro Key (the Tees Valley, Durham and North Yorkshire Neurological Alliance) to develop a self-management tool for people with long-term conditions. We spoke to Dr Kilinc about MyLifeTool, launched in October 2019, and currently offering online sessions.
MyLifeTool is designed to be a tool that people can use as little or as often, as and when they need to. It is filled with different ideas and tasks to encourage people to reflect on what does and does not work for them and to learn about their own particular experience of their condition. The tool is designed for people with any long-term condition, so if someone lives with more than one condition, the tool can be used to support the self-management of their combination of conditions. To support reflection, part of the tool is a scrapbook, where people can engage with creative activities to help them think about their experiences and identify things that give them purpose in life.
We included people with MS in the research projects that helped to develop and evaluate MyLifeTool. Feedback from the evaluation was very positive and led us to develop a face-to-face creative programme where people with a range of long-term conditions can come together to try out different creative activities that can go in their personal scrapbook. The sessions are also a chance for people to share ideas and experiences with other people who live with long-term conditions. Each session is based on a creative activity that focuses on a specific part of self-management, like planning and pacing or resilience. Doing these creative activities together can help people to reflect on their own self-management strategies and get support and ideas from others in the group.
Of course, these face-to-face sessions cannot take place at the moment, so we have set up some online creative sessions that anyone with a long-term condition (including their carers and family members) can join.
There are three sessions initially but we have plans to develop more. The sessions are focused on the ways that lockdown might be having an affect on people’s wellbeing, stress and anxiety and how they manage their condition. For example, in week two we will think about goal setting because it is helpful to set yourself plans for each day but important that you don’t overstretch yourself. We will make a vision board that can include magazine cuttings, words or phrases, song lyrics, drawings and photographs that represent what you want to achieve the next day. We will also think about your strengths and challenges you have overcome in the past, to help you plan ways to give you the best chance of achieving your goals.
You don’t have to be a brilliant artist to take part and you won’t need anything more than a paper and pencil if that is all you have available. The sessions are designed to be very simple and templates to illustrate what you can create are available on the website. The sessions are live and the idea is that we can start conversations about the things each session focuses on and ways to cope during lockdown. Joining the sessions are some peer supporters who live with different long-term conditions. They will keep the conversations going, share with you how they are coping with lockdown and be there to offer support and ideas.
Being diagnosed with MS during lockdown
Receiving a diagnosis of MS is never easy. Getting your head around the news that you’ve got a lifelong condition can leave you feeling a whole range of powerful emotions and it will take time for you to work through these feelings in your own time, and in your own way. But being told you have MS in these extraordinary times could mean a whole new level of uncertainty and worry to deal with. We hear the experiences of people who have been diagnosed with MS during lockdown, and share some tips to help.
MS doesn’t need to mean giving up the things that make you who you are. Whether it’s picking up a paintbrush or baking a cake; digging out your old sewing machine or playing an instrument, taking up a new hobby, or rediscovering an old one, can help you retain a sense of self following an MS diagnosis. Here, five people with MS tell us about their respective passions.
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