Sarah is a loving grandmother who loves to paint and has recently taken up gardening again. She has always led a busy life helping others and didn’t realise that her MS was the reason she started feeling exhausted.
When Sarah first came to the Centre she had a granddaughter on the way, but she was worried that MS would affect her ability to play and engage with her. It was incredibly important to Sarah to be able to get down and play with her. This is her story.
I had a lovely job working in administration for a local charity and loved doing something for a good cause. But I was getting really tired, and when my elderly parents needed looking after I couldn’t manage both – it was too exhausting so I gave up my job. The following year I was clearing out their house and my legs wouldn’t hold me up and my nerves were fizzing. After a several tests and an MRI scan I was diagnosed with Primary Progressive MS and left to it.
After diagnosis I felt shocked and alone. I was told to come back in a year by my neurologist with no signposting to any help or support. I was very lucky that my GP knew about the Centre and referred me straight away. I went with a friend and I honestly don’t know what I would have done without the support of the Centre. It’s not just the physical support it’s the emotional support that is important to me too.
I was diagnosed late in life, and looking back I’m sure I have had MS for many years and it now explains a few incidents. On holiday once I nearly capsized a boat full of people in Gozo. As I was getting off after a lovely trip I had my foot on the seat and my leg buckled. I nearly fell back and capsized the boat but was saved by burly fishermen! I felt very embarrassed but it’s obvious now that it was MS making my leg give way.
Diagnosis has explained so much and helped me stop blaming myself for being unfit and pathetic. There was a reason for being weaker than I should be.When I started physio at the Centre I had a grandchild on the way and couldn’t bear the thought of not being able to get down on the floor to play and have the connection with the baby. My physio showed me how to lower myself down and what to use to get back up again safely. This is also great to know if I ever fall too. It is such a joy to be able to indulge them with my time and energy. It was really important to me to participate in their lives. I get so much pleasure from spending time with them. My granddaughter loves riding my mobility scooter with me off-road. I love being able to get down and play with them – as long as nobody watches me get up!
I also attended exercise classes at the Centre. There is something wonderful about being with people who understand how difficult it is. The support you get from other members is wonderful because they absolutely get it. We are very frank with each other but our humour keeps us going.
My life has changed a lot but try not to dwell too much on what I can’t manage. My mother was a great example of finding ways to cope and accepting things. I always try to focus on the positive and the things I can still do. Life is limited by the fatigue but I have learned, with the Centre’s help, to pace myself and to delegate. I want to spend time in a garden full of colour but can’t manage digging and weeding. I can plant seeds and grow them on, so that’s what I’m doing instead and I leave my husband to do the heavy stuff.
Accepting that I had MS was hard, and admitting the impact it had on my life was too. I am a bit of a control freak and it took a lot for me to accept help and understand that it was ok if people didn’t do things the same way as me. It took a while for me to realise I could focus my energy on things I enjoyed and delegate things I don’t like.
I also don’t think about what others think anymore. I loved being in the countryside but couldn’t go out for walks easily. Then I got a mobility scooter and it opened up a whole world again for me that I had missed so much. Getting out is very important for my wellbeing. We should all grab what we can to be able to make us able to do things rather than limiting ourselves.
It has been harder during lockdown to maintain my exercise but that’s the nature of lockdown. But the support from the Centre has been there all the way through. I know if I had aproblem I could get in touch. It’s like a safety blanket knowing that you have somewhere to turn. The Centre is fundamental to the wellbeing of people with MS. I can’t imagine being without it. That’s why I do everything I can to fundraise – even shaving my head!
If you would like to help many people with MS, like Sarah, to continue to do some of life’s simple things and enjoy family life as much as possible, please make a donation this MS Awareness Week.