As World MS day is a week tomorrow, we’ve teamed up with Barbara Stensland, a published author and blogger at Stumbling In Flats, which details her day to day life living with Multiple Sclerosis and how it affects her life. In this blog contribution, she’s provided valuable tips and advice for others going through the same situation, as well as what it’s like to live with MS.
Could you tell us a bit about living with MS and your history with it?
I first experienced symptoms of MS in 2011 and was diagnosed in 2012. My symptoms appeared very suddenly, so adapting to a whole new life with MS was really difficult. I had problems with extreme fatigue, balance, foot-drop and cognitive issues.
As I was diagnosed with highly-active relapsing MS, I was offered a new treatment, Alemtuzumab, which has helped slow down the frequencies of my relapses. I have also been fortunate enough to have a fabulous MS team here in Cardiff. In particular, the MS nurses have been a lifeline.
Have you ever experienced any discrimination due to being a person with a disability?
Very shortly after my symptoms started, I began to be bullied at work, a job I loved. This had a devastating effect on my health and emotional state and I was shocked that this kind of discrimination could happen. The experience was brutal and it culminated in my dismissal. I was lucky enough to find an employment lawyer who happened to have MS and together we fought back. I won the case, found a new job and moved on with my life but I am still angry that the situation ever took place.
You mention that you’ve written a book and contributed to many different websites. What would you say is your greatest achievement whilst living with MS?
Every time I receive an email or comment on my blog about how my writing has helped someone come to terms with their own MS, I glow with pride! But I would have to say that my greatest achievement has been bringing up my son, Christopher, throughout everything MS could throw at us. We’ve had our dark days but I have always tried my hardest to keep his life as normal as possible. I’m pleased to say he is now heading to University and is a well-rounded, confident young man!
Do you use any mobility aids that you would definitely recommend?
Despite my balance being an issue for me and dealing with frequent foot-drop, I resisted using a walking stick for as long as possible. I guess I didn’t want to admit to myself how much of an impact MS was having on my health. However, the sheer relief I felt when I finally bought one was immense. Suddenly I could do so much more than usual and it gave me my confidence back. I would recommend anyone with similar symptoms to me should get one and keep it handy. I have a fold-up one so I can pop it in my bag and use it when I need to.
What are the biggest challenges for someone with MS?
I would have to say that the biggest challenge is society’s view of people with MS, and disabled people as a whole. There is a general lack of understanding about the illness and how it can impact someone’s life. Also, learning to live with the unpredictability of MS is an ongoing battle; trying to explain MS fatigue can be extremely difficult!
What advice would you give to readers who may experience depression whilst living with MS?
It is so important to reach out and talk to someone. Depression in MS is extremely common and is a recognised symptom. I suffered very badly for a couple of years after diagnosis and kept a lot of things to myself. However, I found that when I started my blog and wrote about how I was feeling, the comments and feedback I received helped me enormously. There is a wonderful support network out there, both on the internet and in real life. As a first step, if a person is living with depression, they could speak to their MS nurse who will be able to signpost them towards help and support.
If you have any tips you’d like to offer to other readers, or if you want to share an opinion or experience get in touch with us via Twitter or Facebook! You can also check out Barbara’s social media via her Twitter and her amazing blog.