Strength through song: Sally's MS journey and mission to support the MS Trust

Diagnosis journey

At the time of diagnosis, I had just been appointed to a new position at work.  I had just completed my final surgery for breast cancer but was experiencing a multitude of symptoms that I couldn't really explain. These symptoms impacted on my cognitive ability, my mood and sleep, and caused headaches, fatigue, bladder and bowel issues, as well as pain and discomfort in my legs. In January 2019 I was diagnosed with RRMS.

Invisible symptoms

I know I look well, but MS is like an iceberg you may only see what is above the water. Many of my issues are below the surface and are invisible… This is my new normal. Deep down, I have felt that as an individual, I was gradually disappearing or fading... no longer the old me.

Support of the MS Trust

This was an incredibly frightening time for myself and my immediate family. Whilst I was still coming to terms with a new second diagnosis of RRMS my husband was already one step ahead. He had started to investigate online and came across the MS Trust... I eventually plucked up the courage and made my first call to the MS Trust. 

During that first call, I was made to feel immediately at ease by the person on the end of the phone. They were friendly, caring and very knowledgeable and able to answer my random questions. I was offered an introductory information pack which was sent out instantly in the post. This pack was impressive. It contained practical reliable evidence-based information which helped both myself and my immediate family make sense of MS... The website and leaflets really helped us understand more about the disease as a family and helped me personally manage specific symptoms and consider lifestyle tips. 

As I was keen to be treated, I was particularly grateful for the very comprehensive information regarding disease modifying drugs. This was brilliant and outlined the common drugs used including the side effects.  As a result of receiving this information, I felt fully informed in advance of the discussion with my consultant.  This enabled me to be actively involved in the decision making regarding my care so I could start to live my best life despite MS.

Early retirement

I had had a long career as a midwife, which I loved, but had to step away from 18 months post-diagnosis. 

I recognised early on that I was having issues with my cognitive ability, thinking and processing skills, which were all critical in my new role as a Maternity Investigator.  

With the help and support of my family, I reluctantly took the decision to retire. I loved my job and had no plans to retire anytime soon even though I often felt extremely tired. Being suddenly thrown into retirement without planning was hard to navigate. I was painfully aware of the possibility of becoming mentally unwell due to lack of sense of purpose and self-esteem. It felt like a creeping darkness coming forever closer.

I joined a group online, which focussed on self-improvement. I threw myself into volunteering in community activities such as the “Wellbeing Café” associated with my local church. Although I was no longer a church goer, I felt very welcome. I started a small walking group which has since mushroomed in size. I began visiting a 93-year-old lady who had been suddenly widowed during lock down and I have also been able to help my elderly mother more in North Devon." Combined these activities really helped me renew this sense of meaning and purpose.

I have now created a small business teaching antenatal classes with my daughter which has been hugely enjoyable and has helped me use my midwifery brain more.

I have MS but it doesn't have me.

Rock Choir and Fundraising

I really wanted to give back to the MS Trust as it helped me so much during my time of need. Getting fit enough to run a marathon or complete a long walk or jump out a plane to raise money were unsurprisingly my least favourite options. Focussing on something I was already naturally really enjoying such as singing with my Rock Choir made much more sense.

It was a particularly appealing choice as I wanted to raise money as well as awareness of the condition. As over 120 Rock Choir members showed up, we sold out every seat in the hall and it was an amazing opportunity to spread the word whilst have fun at the same time.

Sharing my story alongside my consultant with so many friends and family present was a hugely cathartic and healing experience. I felt hugely proud and privileged to wear my MS Trust T-Shirt and represent the MS Trust and other MS patients. In one night - with the help of a raffle - we raised £4,500!

Continuing to sing with Rock Choir has been critically important over the last few years. It's been a constant amidst all the chaos. Singing uplifting and empowering anthems has unfailingly helped to lift my mood and reduced feelings of chronic pain and reduces stress. I have also made some great friendships which I particularly value.  This has been particularly important to me in the absence of my work family.

Finally, hanging on to the concept of HOPE was the one thing that helped me get through the darkest of times.  As a result of choosing and focussing on HOPE now anything and everything now feels possible. 

If you would like to turn your passion into a change for good and raise vital funds to support people with MS, please get in touch with our fundraising team or download your fundraising pack today!