![\"Susie](\"https:\/\/sheffieldwire.co.uk\/wp-content\/uploads\/2025\/04\/Susie-Evans-Treatment-pic.jpeg\")
This week as part of MS Awareness Week 2025, Susie is talking out about the condition and how it affects her everyday life. <\/p>\n\n\n\n
MS is a neurological condition that one in every 450 people<\/a> in England will be diagnosed with in their lifetime.<\/p>\n\n\n\n Susie, 45, a civil servant from Chapeltown, Sheffield wants people to understand how difficult daily life is for people living with MS.<\/p>\n\n\n\n \u201cThere\u2019s this thing called \u2018spoon theory\u2019,\u201d she says. \u201cThe premise is that anybody with a chronic disease might wake up in the morning and have 12 spoons of energy for that day. And then getting dressed might take a spoon, getting showered might take a spoon. Then getting to work might take two spoons and quickly, spoons disappear. If you get up in the morning and you\u2019ve had a really bad night\u2019s sleep, because one of the joys of MS is sleep disturbance, you might wake up and instead of having 12 spoons that day you\u2019ve got eight. Then if you\u2019ve got a cold, you can take another couple of spoons out of your day. So suddenly you might have only six spoons of energy for that day.\u201d<\/p>\n\n\n\n Susie was diagnosed with MS seven years ago. Her particular condition, relapse remitting MS, means she can get worse periods of intense symptoms and then they lessen or stop.<\/a><\/p>\n\n\n\n \u201cMy first symptom was numbness in my big toe, which spread over a few days all over my left side,\u201d says Susie, who has been left with scarring on her brain. \u201cTo touch it was like having an electric shock.\u201d<\/p>\n\n\n\n Susie went to see her GP, who made a call to a neurologist at the Hallamshire Hospital and asked them to see her that day.<\/p>\n\n\n\n \u201cThey did an MRI scan that showed a lesion on my spinal cord and I was diagnosed with Clinically Isolated Syndrome (CIS) and told that it could progress to MS,\u201d says Susie.<\/p>\n\n\n\n She was sent for a follow-up MRI after a period of difficulty walking, which felt like\u00a0Susie \u2018was wading through treacle and was exhausting\u2019 showed further lesions on Susie\u2019s brain. It was at this point she was diagnosed with MS.\u00a0<\/p>\n\n\n\n Although it didn\u2019t come as a shock, \u2018it was still unpleasant to get that diagnosis,\u201d says Susie. <\/p>\n\n\n\n She explained living with MS is unpredictable and Susie constantly suffers from a varying range of fatigue.<\/p>\n\n\n\n \u201cThere’ll be days where it gets worse,\u201d she says. \u201cI also have cognitive issues so I can get confused and tired. But I\u2019m a mum, so I have to function. It\u2019s exhausting and the unpredictability is frustrating.\u201d<\/p>\n\n\n\n <\/p>\n\n\n\n Susie uses a TurboMed, a specialist brace, to help her manage the impact MS has had on her mobility. She also has an electronic stimulator which sends messages to her muscles when she is walking to help her lift her foot. <\/p>\n\n\n\n \u201cIt can be a bit complicated to try and get dressed in the morning.\u201d She says.\u00a0<\/p>\n\n\n\n Susie, who works from home, praised her employers for how supportive they have been, allowing her to dictate her own travel arrangements or any breaks she needs. <\/p>\n\n\n\n \u201cI\u2019m also in an MS support group at work,\u201d she says. \u201cIt\u2019s a really supportive group, full of people who have MS and for people who care for people with the condition too. When it\u2019s a really hard day and you can\u2019t function, they can help with advice. They also help with things like applying for benefits. I\u2019m glad it exists.\u201d<\/p>\n\n\n\n Susie says her MS nurses have been invaluable. They encouraged her to apply for a blue badge to help Susie conserve her energy and to start cognitive behavioural therapy (CBT) to help her come to terms with her condition.<\/p>\n\n\n\n \u201cEven though I\u2019ve had MS for seven years, it\u2019s still a learning curve,\u201d she says. \u201cI\u2019m still learning to pace myself in terms of what I can do and what I can\u2019t do. I kick myself if I do too much. It\u2019s an acceptance thing. The acceptance that I have is that I know I\u2019ve got it [MS] and I\u2019m not ok about it. <\/p>\n\n\n\n \u201cYou often get comments from people like \u201cBut you look ok\u201d. I might look ok. But it could be ten o\u2019clock in the morning and if you see me at three o\u2019clock it might be a different story.\u201d<\/p>\n\n\n\n MS Society announced<\/a> in February that they had reached the threshold for 200 people to take part in the ChariotMS trial for advanced progressive MS. The study hopes to find whether cladribine can help people with more advanced MS to use their arms and hands. The first results of this study are expected in 2027. <\/p>\n\n\n\n Also, later this year results are expected for the myelin repair trial. Myelin is the protective coating around nerve fibres which is damaged in MS and lab research so far has shown a combination of two drugs helped myelin repair in rats. <\/a><\/p>\n\n\n\n <\/p>\n\n\n\n Another MS sufferer, Joanna Mason, 43, from Rotherham, is a social media influencer, with 103,000 followers on TikTok, under the name \u2018The Yorkshire Wife<\/a>\u2019. She is also a comedian and a volunteer group coordinator for the MS Society Sheffield and Rotherham group.<\/p>\n\n\n\n As well as MS, Joanna has functional neurological disorder (FND), causing a range of debilitating symptoms. They include fatigue, vertigo, tinnitus, facial spasms, short-circuiting (FND physical and vocal tics), dysphonia (when the voice involuntarily sounds raspy, strained or changes in volume or pitch), swallowing problems, tremors and difficulty controlling body temperature. <\/p>\n\n\n\n \u201cSome of my symptoms are permanent due to the damage in my brain and spine and then some come and go,\u201d says Joanna. \u201cEveryday can be different with MS and sometimes hour to hour is different. You never know what you\u2019re going to be able to do and when.\u201d<\/p>\n\n\n\n Joanna has been volunteering with the MS Society since she was diagnosed in 2021.<\/p>\n\n\n\n \u201cWe have three volunteers and between us we have set up two seated exercise classes which run weekly in Rotherham and Sheffield and a weekly gym-based circuit training session,\u201d says Joanna. \u201cWe have specialist trainers from CWS Community Wellness Services that run our sessions.<\/p>\n\n\n\n \u201cThe sessions help us with functional physical exercises, strength training and building new neural pathways. We also run a monthly social group at the MS Therapy Centre in Catcliffe where we have guest speakers and workshops all with the aim of learning to live as well as we can with our MS. We don\u2019t want anyone to feel alone.\u201d<\/p>\n\n\n\n Joanna explained MS often gets referred to as the \u2018snowflake disease\u2019 as every individual with MS experiences it differently and there are so many factors that can cause symptoms to flare.<\/p>\n\n\n\n The MS Society support groups constantly receive positive feedback. \u201cI\u2019ve created friends for life through the group,\u201d says Joanna. \u201cWe support each other through the ups and downs of our illness.\u201d <\/p>\n\n\n\n Joanna said MS Awareness Week,which runs from Monday 28 April to Sunday 4 May, with the aim of encouraging people to join in the online dialogue using the hashtag #MSConversations<\/a> to share their personal stories about MS, is important because it\u2019s vital other people understand what life is like for people with MS.<\/p>\n\n\n\n She says: \u201cWe only have medications that aim to slow down progression or help manage symptoms. We need a cure.\u201d<\/p>\n\n\n\n To anyone who\u2019s recently been diagnosed with MS Joanna says: \u201cMS might be affecting you from the inside out but there are so many things you can do from the outside in to help you live as well as you can. Reach out to support groups and ask questions.\u201d<\/p>\n\n\n\n You can find out more information about the MS Society Sheffield and Rotherham group and contact them through their Facebook <\/a>and website<\/a>. You can also contact the MS Trust helpline <\/a>and MS UK<\/a>. <\/p>\n\n\n\n <\/p>\n\n\n\n![\"Susie](\"https:\/\/sheffieldwire.co.uk\/wp-content\/uploads\/2025\/04\/Susie-Evans-pic.jpeg\")
![\"Joanna](\"https:\/\/sheffieldwire.co.uk\/wp-content\/uploads\/2025\/04\/Joanna-1024x1024.jpeg\")