Sarah’s Advice: Be Kind to Yourself and Live in the Moment.
When Sarah’s husband Adrian was diagnosed with Primary Progressive Multiple Sclerosis, their lives changed forever. Over the years, Sarah has adapted with strength, compassion, and a determination to find joy in the everyday. From quiet mornings with the birds to championing other Carers as a Carer Ambassador, her story is a heartfelt reminder to be kind to yourself and live in the moment.
My name is Sarah and I’m a full-time Carer for my husband, Adrian, who has Primary Progressive Multiple Sclerosis (MS).
We’ve been fortunate to enjoy good health for most of our lives. We worked, raised a family, travelled, and had a wonderful circle of friends. Then, in 2011, Adrian began having investigations for symptoms he was experiencing. In 2012, we received the MS diagnosis.
At first, fatigue was Adrian’s biggest challenge and he had to leave work. Thankfully, ill health retirement meant we could manage financially. Over time, his mobility declined and, by 2020, he needed to use a wheelchair full-time. Now, his nippy electric chair is part of our everyday life.
Adapting to Change
As Adrian’s needs increased, my caring responsibilities grew. I’m naturally a planner and list-maker, so structure helps me cope. Early retirement from my part-time job gave me the time to focus both on caring and on activities I enjoy.
Our days have a steady rhythm. I’m up first, enjoying a peaceful breakfast while watching the birds on the feeder. Then I make Adrian’s breakfast, check if he needs help getting up, wrap his legs to treat lymphoedema, and organise his medication. I always tidy our bedroom and make the bed, I love the feeling that the bedroom is a sanctuary or comforting space
Mornings often include baking, shopping, or gardening, while Adrian rests. Our adapted bathroom means I can help him shower safely, and in the afternoons we might read, listen to the radio, or catch up with family via video calls. We try to eat dinner together at the table, making space for conversation.
I have a lovely group of friends, but I don’t tend to share much about my caring role with them because I think they’ll find it boring and to be honest, when we’re together, I enjoy switching off from it all.
I guess people see me as very capable and I suppose I am, most of the time but that doesn’t mean I don’t want someone to look after me for a change. I love a day out where someone else has done all the planning and all I have to do is turn up. Although, I’ve still had to do a lot before I turn up, as leaving Adrian for a whole day takes organising and contingency planning.
Finding Joy in the Everyday
My garden is my happy place – planning changes and growing vegetables. Escaping outside and getting my hands in the soil makes me feel connected to nature and the mindfulness of it pushes any worries away.
I also love cooking and there’s always cake in the freezer for Adrian’s mid-afternoon medication break. We enjoy films, detective series, and spending time with friends.
Weekly, we meet up with a group of friends who also have neurological conditions. I often help them with practical matters like benefits or adaptations – earning the nickname “Solutions with Sarah”. Volunteering has always been part of my life, and I’m proud to be a Carer Ambassador for Forward Carers.
Coping with My Own Health Challenges
In 2015, I was diagnosed with kidney cancer. After surgery, I made a good recovery and I’m currently living free from cancer, but the experience changed my perspective. Mindfulness, Tai Chi, yoga, swimming, and Pilates have all helped me maintain my physical and mental strength to cope.
It’s not always easy – I still worry about the future and what would happen to Adrian if I wasn’t here and I have to constantly work on this so that my mind doesn’t defeat me. I’ve learned that time spent worrying about the future is time wasted and no amount of worry will change whatever the future holds. Worrying won’t change the future, but living in the present makes life more manageable. I’ve learned to focus on today, this week, or at most, this month.
Words for New Carers
If I could give one piece of advice to someone starting their caring journey, it would be:
Be kind to yourself and live in the moment.
Writing this story of my caring experience has been very empowering and has helped me focus on the many positives in my life.
I’m proud of who I am and the values that guide me. I’m proud of who I am and of the values that make me the person I am. I’m a good Carer and I find joy and contentment in what I do. I’m not living the life I planned for retirement but I’m living the life that’s mine and was meant to be.
Share Your Story
If you’d like to share your Carer journey and inspire others, please contact info@forwardcarers.org.uk.
