Amanda’s Story
Amanda is a recent member of the Chilterns Neuro Centre. The maths teacher and mother of two is a competitive swimmer working towards her dream of making finals in the National para-swimming championships.
Our occupational therapist suggested that she attended our fatigue management course which helped her to understand and manage her energy levels. Amanda said changing her mindset and accepting that she needs to sit down after a swim was like wearing glasses – if she wants to see where she is going she needs to wear them. The knowledge she has gained has helped her to continue to follow her dream of being a Paralympic swimmer. This is Amanda’s story.
I knew something was wrong when I was walking alone and about 2 miles from home my right leg forgot how to walk. It was the scariest moment of my life. I was diagnosed with Primary Progressive MS in the autumn of 2019. The diagnosis took place over a period of several months from my initial consultation with my GP and during this time little information was provided to support me but lots of things changed. I went from being able to run 5km to feeling that walking 2km was a huge achievement and would wipe me out for the day. Mentally this was one of the hardest things for me to take in. I now use two sticks when at school, mostly to visibly point out that if you bump into me I’ll fall over, but by the latter part of each week they are there to support me too.
After my diagnosis and before my first MS nurse appointment, I was talking to friends at my swimming club and they mentioned the Centre. So I contacted them, arranged for a referral from my GP and in early February came for an initial assessment. During my assessment Amy said “every single statement you made was `when I get tired this happens, when I get tired I find I can’t do…’ – so your biggest impact is actually fatigue. If the fatigue’s under control you’re coping with most things.” I agreed.
A week or so after my assessment lockdown happened, but at about the same time I was invited to take part in an online fatigue management course. I had nothing to lose so I decided to give it a go, even though I thought most of the information would be advice I already knew.
I was pleasantly surprised by what the course taught me. Importantly I learned how significant it was to give myself permission to rest and to allow others to do things so I could make the most effective use of my time and energy.
The kids can’t drive, but I can only drive if I’m with it enough to do so. They can cook a meal and they can tidy up and if they can do those two jobs I can take them to swimming training. I think the fatigue management course helped me switch my mindset about thinking how best I can manage my energy levels. I’m far more disciplined now and the course was a really big eye-opener in how to structure my time and manage my days.
Apart from when I’m teaching or with my family, I spend most of my time swimming. I’ve been swimming since I was 8 years old and it’s very important to me to be able to compete. But I need to be able to clear the end of the pool quickly after each race. It was becoming increasingly hard to do so, as having used all my energy in the pool I needed to sit poolside at the end of a race to recover.
After attending the fatigue management course, I invested in a lightweight wheelchair that I now use to move away from the pool. Mentally it was a very big thing to take on board that I needed a wheelchair, but following the course, I now see it like wearing my glasses. If I wish to be able to see where I’m going, I need to put on my glasses. If I wish to be able to compete in a race and move away quickly at the end of it, then I need to use a wheelchair. Without making use of an aid I couldn’t do it. It’s a nice feeling to be able to continue racing.
Thanks to the Centre I am able to keep up with my competitive swimming.
If you would like to help many people with MS, like Amanda, to continue to do things they love and remain as independent as possible, please make a donation this MS Awareness Week.