After suffering for a year with unexplained numbness and odd tingling sensations, Sally Upfield was told she had multiple sclerosis.
At 21 and mum to a baby daughter, the diagnosis came as a huge shock and it took almost another year for the reality of Sally’s condition to sink in.
Her initial fears centred around her daughter, Millie. But Sally, now 23, has completely changed perspective on her condition, which attacks the nerves and can be debilitating.
She has overhauled her diet and, despite getting very tired, she dances and cycles to keep in shape to fight the illness.
Now she is planning to cycle from her home in Mole Hill, Waterlooville, all the way to Brighton to help others with MS.
Sally, a support worker, says: ‘For about a year I had been getting a numbness down the side of my head. When I did my hair I couldn’t feel anything.
‘Then the numbness would go to the right side of my body and I felt a tingling sensation.
‘My hands became numb too and the feeling has never really come back in them. I also had vibrations in the bottom of my spine. It was as if a mobile phone was going off.’
She adds: ‘Originally my doctor thought that it was being caused by a trapped nerve, but referred me for an MRI and I got the diagnosis in January 2013 that it was multiple sclerosis.
‘When I got home I started researching it on the internet and my first thought was ‘‘what about Millie? What will happen if I deteriorate really quickly? How will she cope with it?’’’
Fortunately, in the two years since Sally was diagnosed, she has kept her MS in check with diet and exercise.
Daily injections minimise the relapses, but she still gets a strong tingling sensation in her legs if she walks short distances.
Other symptoms are twitching, jerking and being unable to regulate her temperature. At night she gets very hot and the medication causes nightmares.
But the biggest problem with the condition is chronic fatigue. She says: ‘Getting up in the morning is the worst. I struggle to wake and come round.
‘I’m very groggy. Sometimes I hit a wall between 4pm and 5pm where I just have to sit down and rest. And that’s it for the night.
‘Millie is very good. She doesn’t understand exactly what is wrong but knows that mummy is a little bit poorly. She’ll sit quietly with me and we’ll read a book or do colouring-in.’
The fatigue has not stopped Sally planning her 44-mile Brighton cycling challenge.
And it has had positive effects. She says: ‘The training to get fit for the ride has actually made me better. I danced from when I was a little girl until just before I had Millie.
‘I’ve taken it up again and that, combined with the cycling, has made me feel so much fresher. The tingling I suffer from has subsided a lot.
‘When I started all this even the thought of going on a bike ride tired me out. I did a long practice cycle last week and realised half way “I’m almost there”. It was a great feeling.’
Sally has cut out sugar and carbohydrates from her diet. Known as the paleo diet, it is based on only eating natural food such as fruit, vegetables and meat. In America doctors recomment all MS patients go on it as soon as they are diagnosed.
She says: ‘I feel totally different. On the third day of the diet I started to get the sweats because my body started to miss the carbs – it’s what’s called carb flu.
‘But by the fifth or sixth day I was full of energy and wide awake. In the first week I lost eight pounds. Being lighter makes it easier when you have mobility problems. I can’t recommend it enough.’
Sally’s partner, Shane Buckland, 35, said: ‘Sally started promoting the paleo diet to others with MS and it made her realise that actually she could help others with advice on things that have worked for her.
‘I was a bit surprised when she came up with the idea of a bike ride, but that’s exactly why I like Sally. She is not a victim.
‘Sometimes I forget she has MS because she never reminds me. She never uses it as an excuse to not do anything. She just gets on with it.’
Looking back, Sally says she cannot remember an incident in her childhood which would point to her developing the condition in later life. There is also evidence that major stress, such as pregnancy and childbirth, can trigger it.
She says: ‘When you talk about MS, people associate it with being in a wheelchair. But to look at me you wouldn’t know I even had it.
‘There is no way to tell if it will get worse or better. I just have to keep my body strong enough to fight it.
‘I know people who found out they had it the same time as me and they are in and out of hospital all the time. I’ve never had that.’
‘For the first eight months I had my head in the clouds. I wouldn’t accept it and didn’t want to think about it. But now I know it’s not a life sentence. I don’t think of myself as a victim. I just carry on as normal. My positivity helps me stay well.’
Sally’s cycling challenge
Sally Upfield is raising money for the MS Society with a 44-mile bike ride from her home in Waterlooville to Brighton.
The charity funds research, give grants, campaigns, provides information and support, invests in MS specialists and lends a listening ear to those who need it.
Sally says: ‘As soon as I was diagnosed my consultant put me through to the MS Society. I was assigned a nurse who walked alongside me during the first difficult months of my MS journey.
‘She continues to be a huge source of support for me and my family. I see her every four months and she is brilliant.
‘When I first found out they arranged for me and other newly-diagnosed people to get together and find out about it.
‘When I need to talk to someone I can speak to my nurse. They helped me get a ground floor flat without stairs and with a wet room. They also supported me when I went back to work. The MS Society is an amazing charity.’
The bike ride is on May 1. To sponsor Sally go to justgiving.com/sally-upfield