Living alone with MS
Annie was diagnosed with primary progressive MS (PPMS) in 2007. She lives alone with her dog Milly, a Jack Russell terrier, and enjoys practicing mindfulness. In this blog post, she writes about her experiences of living alone with MS.
We all know only too well that MS is a shapeshifting disease. It takes many forms, and your MS may be completely different to mine. People with MS can have different levels of ability and disability and may respond in different ways to their symptoms – but we all face challenges. Other people, professional and non-professional, can offer support, but in the end we all have to find our own way through the challenges we face. The realities of ‘self-management’ can mean that the professional support available is limited, and we may feel alone at times, whatever our situation.
For someone like me with MS, living alone presents its own challenges. Those challenges will vary according to personality, temperament and circumstances. For some people, living alone equals loneliness, so that additional mental distress has to be added into the mix we have to deal with.
I like living alone
At different stages in my life, when I’ve lived on my own, I’ve always relished the feeling of being able to close my door at the end of the day and relax in my own way in my own company. That ability to be comfortable and at ease in my own company isn’t an achievement on my part, because it comes quite naturally to me – but we can all find ways to help ourselves to live alone if necessary, whatever our feelings about it might be.
Finding ways to stay connected
Humans are social animals. We need to interact with others on some level, and we need to find our ways to meet that need. I have a dog, who gives me company, affection, exercise and fun. She provides a safety net, too, because my dog walkers would raise an alarm if I failed to open the door one morning. I walk her myself most afternoons, and this means I interact with my neighbours and other dog walkers and remain a part of my local community. We chat.
Living alone with MS makes it even more important to develop and maintain interests and activities and opportunities to socialise. As I’ve grown older, and my symptoms have progressed - ‘progressed’ always seems like the wrong word, suggesting forward movement and positivity. So start again – As my symptoms have worsened, I’m less able than I used to be to get out and about.
I’m fortunate to be able to drive and have a car. But even so, it’s harder than it used to be. This can increase isolation and loss of meaningful activities and social contacts, which can in turn lead to depression.
For me, that’s where Zoom comes in. It gives me a way to ‘visit’ family and friends without leaving my house. And helps me have contact with relatives as far away as Australia and Malaysia. I can visit them in their living rooms!
I’ve found a huge variety of Zoom groups - something for everyone! They've enabled me to learn new stuff, pursue my interests and meet like-minded others.
For me, that’s been reading groups, mindfulness groups and communities and a writing group. Others I know have joined online choirs, art groups, yoga groups – think of an activity, and there will be a Zoom group somewhere!
The challenges of living alone
It's all too easy to focus on the positive aspects of living alone, especially for someone like me who enjoys it. It’s important not to avoid the fact that there are also difficulties and challenges associated with living on your own if you have MS. I’ve already mentioned loneliness and isolation. There are practical challenges, too.
It’s important to have an ‘early warning system’, so that someone knows if you become incapacitated. For me, that’s my dog walkers. I also send a text message to two friends every morning. If they don’t receive it and can’t contact me, they'll raise an alarm.
Lack of resources and opportunities can make life more difficult than it needs to be, too. Even though I’m mostly content in my day-to-day life, it would be good, sometimes, to be able to ask someone else to walk the dog or make a cup of tea! But nothing is perfect, and it’s important to live the best life possible in the context of our individual circumstances.
I’ve accepted that I do need to arrange help with some tasks, and modify my expectations – more online shopping, ready meals and pre-prepared food, for example!
Maintaining a sense of humour and an interest in other people helps. And you’re never alone if you have a dog and books! One final thought – my ways to cope with living alone are my ways. It might be interesting and helpful if other people living alone shared their strategies, too?
We have various forms of support available for everyone living with MS, including those who live alone. These include our forum, our virtual support events and our befriending service.
Our helpline is also open Monday to Friday, 9am to 7pm on 0808 800 8000.
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