'Before I was diagnosed with multiple sclerosis (MS), I was very keen on sport and was always very active participating in sports teams, such as when I joined Colchester Ladies Hockey Club and later on, a Colchester badminton team. I also started playing golf in my mid-thirties and was a very active gardener as I got older.
'However, pre-diagnosis, I had an unexplained ‘attack’ which left me very fatigued with a tendency to quickly hit a ‘fatigue wall’ during any physical exercise, even just walking to the shop. This meant that my very active lifestyle came to something of an abrupt end, even though my mind still thought of myself as fit and active. Suddenly, I just couldn’t do the things that I used to do. Despite my mind telling my legs to run, jump or whatever, my muscles just weren’t able to comply. The messages from my brain just weren’t getting through. It was a very scary time and I began to get scared of trying to carry on doing any physical activity.
'I remember one time when I was still just able to trot a bit and I was walking across a field to our campervan, and it began to rain. I started to ‘run’ towards the van for shelter and took a big tumble which twisted my ankle, wrenched my back and gave me big bruises and muddy clothes. Luckily, I’d fallen on grass but as I’d not fallen over since I was a toddler according to my Mum, it gave me a big shock! This episode really dented my confidence and my physical activity reduced considerably after that.
'Once I received my MS diagnosis, I was overwhelmed by so many fears, worries and confusion. I found it difficult to take in and understand all the advice and information I was given. I didn’t ask about physical exercise or about many other things related to MS because I didn’t know enough to know what to ask, my mind was in a spin. All I remember was being told that ‘overdoing it’ could bring on a relapse, and to rest and pace myself or I would ‘pay for it’. This made me very worried about doing any physical exercise in case it brought on a relapse.
'After my diagnosis, I now exercise twice a week at MS-UK’s wellness centre Josephs Court on a Therabike and on the Vibeplate. I joined Josephs Court two years ago and have been aiming to strengthen my arm and leg muscles to help compensate for my severe fatigue and to reduce the risk of falls. I’m really pleased with my progress and I’m now able to do a lot more than I was able to do before I hit my ‘fatigue wall’. I’ve also learned how to pace myself better through the excellent coaching at Josephs Court and the MS-UK Mindfulness training.
'I now appreciate doing the exercise as it enables me to garden regularly, as long as I’m strict with my pacing! Now I have four grandchildren under the age of four and another on the way, and I have begun to feel that I would be missing out on enjoying family time together, but my increasing fitness and activity has meant that while I still find it very tiring to play with the three year olds, alongside looking after the one year old twins, I’ve been able to find ways to cope with them all and enjoy them without exhausting myself.
'I also have advice to those who are affected by MS and are nervous about exercising. I would say that I feel that good information is the key to living positively with MS. When I was first diagnosed 13 years ago, I didn’t ask questions. I was in denial for about 10 years before I finally plucked up the courage to go to Josephs Court. By then my fitness and strength had deteriorated massively impacting negatively on my general health and wellbeing, so I wish I had been able to ask the questions I needed to earlier in my diagnosis. I have found in the last two years that mental and physical wellbeing, with keeping yourself as fit and healthy as possible, are so important if you’re living with MS, or a similar chronic condition. When I started exercising at Josephs Court, I hit my fatigue wall almost immediately but with the help and encouragement of my Wellness Coach, Jay, I was able to slowly improve.
'Another benefit that I found with exercising is the social part of it. I loved meeting other clients, something I was very nervous about to start with. But chatting with other clients, comparing notes and encouraging others has been a lovely but unexpected bonus, and has really helped me look much more positively on myself with MS. Also, joining the social group and attending social events such as the regular coffee mornings, has been a very enjoyable revelation for me, and helps me to think so much more positively about MS.
'Finally, I find the exercising therapeutic, I feel really well after an exercise session – I am more relaxed and subsequently sleep better; and by the next morning my back and leg pain and spasticity are very much reduced. It improves my strength and stamina and increases my sense of wellbeing. Now, I can also enjoy time with my family and friends without constantly feeling exhausted. “I don’t feel ‘ill’ anymore!"'
I have been living with multiple sclerosis (MS) for thirty-five years. In 2014 I noticed that walking was becoming more difficult and my MS nurse recommended that I contacted Josephs Court, MS-UK’s wellness centre in Colchester, Essex. I attended twice a week to exercise and became a founding member of their Steering Group. Before I was diagnosed with MS, I exercised every weekday walking for 10-15 minutes to the office where I worked in London. At lunchtime I would occasionally go for a 30 minute walk if the weather was kind, and this felt like it was a sufficient form of exercise. However I was unfortunately diagnosed with MS, but nevertheless I continued exercising in the same way for another 13 years until I eventually changed jobs in 1996. By then I commuted to Basildon by car – therefore my exercise regime came to an end.
But now, I visit Josephs Court two mornings a week, for 2-3 hours each time, and use most of the equipment available. I’ve also increased my exercise since the arrival of the latest university students, as one of them has given me some rigorous exercises using the parallel bars.
Now I feel that doing gentle exercise gives me a feeling of “getting one over on my MS” – it isn’t going to stop me from doing something that I enjoy, and there is a social aspect too. We are all suffering with the same disease label yet we don’t talk about it, we just enjoy one another’s company. The social aspect means I now have someone else to talk to, and shows that I needed something to relieve the boredom of not working, as I spent three years applying for jobs with no luck.
Finally, I thoroughly enjoying working with the student physiotherapist Becca, as she has brought new ways of exercising to me. I also find volunteering for MS-UK therapeutic – it is another reason for existing and gives me purpose.
'In 2016, I was diagnosed with progressive multiple sclerosis (MS) and decided to find out more about MS-UK’s wellness centre, Josephs Court, especially when it really began to affect my balance. I visited weekly and have found the welcoming atmosphere really helpful to me, especially with things such as discussing treatments, and getting ideas and tips for coping.
'Before my diagnosis, I played table tennis to county level as an under 17 and took qualifications to become a swimming teacher. In my youth, I even became a lifeguard with the Guildford Lifeguards. Many years later I joined a gym with my middle daughter Naomi, and we used to go several times a week.
'Alongside this, we also used to cycle to the school I was teaching in and where Naomi was also a teaching assistant. It really was downhill all the way to school, but uphill all the way back. Naomi was able to cycle all the way home, but I had to walk and push my bike for some of the way. Then in 2007, I moved to Great Totham so cycling to work was no longer an option, just an 80 mile round trip to school and back.
'After diagnosis however, my exercise regime was affected, and I didn’t think that exercise would work for me as it used to. My balance was going and I could no longer ride my bike as a result. I even tried stabilisers, but I continued falling off. Subsequently, I started going to Josephs Court and at first, I couldn’t really see the point of it. I could still walk even though my balance was shaky. However, I kept going and then soon realised just how much I needed what Josephs Court could offer and help me with.
'Following this, I ordered an adult tricycle, and was amazed when I was able to get on and ride it straight away, albeit not very far to begin with. But now two and a half years later, I’m able to ride 4.5 miles most days around my home village of Roxwell. I sometimes book myself in for a six week course of hydrotherapy. I think the feeling of being able to walk across the pool with no sticks or rollator is amazing.
'Because of what services there are for those diagnosed with MS, I can’t value exercise highly enough. I have always been competitive, so Josephs Court and tricycling gave me this challenge.'
'I was inspired to run for MS-UK by my Aunt Karen who was diagnosed with relapsing remitting multiple sclerosis (RRMS) in 2012. Despite how much of a change her diagnosis has brought to her life and the daily challenges it now presents to her, I find myself in awe with how she hasn’t let it hold her back. I was drawn to MS-UK in particular due to the great services they offer to those affected, such as the helpline, counselling service and wellness centre facility. Services like these were so valuable and essential to helping my aunt, so raising money to ensure they are provided to others who need them means a lot.
'The main challenge I faced when I found out I had a charity place last June was that I had never run before and it didn’t come very naturally to me. My main support came through joining a local running group, which has really helped me through the winter training runs and longer runs recently.
'To fundraise for MS-UK I utilised my job as a Makeup Artist in order to hold a luxury beauty raffle. I was very lucky to be gifted items after asking various colleagues for contributions to the prizes. I managed to gather together enough items for three large prizes and decided to sell tickets for £5 each. I posted about the raffle on social media, as well as my local running group’s Facebook page. I sold 109 tickets and raised a total of £545. After the success and popularity of the first raffle I’m looking to hold a second one!
'Make sure to put yourself out there, whether it be on social media or in your work place. I’ve posted regular updates of my training onto Facebook and Instagram to let people know about my progression and to let them know about why I’m running for MS-UK. Also not being afraid to reach out to local businesses or friends to see if they would be willing to donate items as prizes, if you decide to do a raffle. I was really overwhelmed by people’s generosity, so it’s always worth asking!
'I feel extremely lucky and proud to be able to run the London Marathon for my aunt and to be able to raise money for MS-UK. I’ve recently completed my longest training run (20 miles), which I never could have imagined myself doing! Knowing I’m running for such a great cause has really helped to motivate and keep me going with my training, and although I’m nervous, I can’t wait for start-line of the marathon!'
Next week will mark MS Awareness Week 2019. This year we’re very excited to be working alongside the MS Trust and the National MS Therapy Centres to raise awareness of the benefits of exercise.
We have developed a free booklet all about exercise which includes some seated exercises to help you get started. We hope you find this useful and it includes first-hand quotes from other people who have been in your position - people who can truly understand and empathise with your feelings about exercise.
The MS-UK Helpline team
Meet the Physiotherapy students Julian Chamberlain-Carter and Rebecca Wilson who are currently completing their placement and supporting the team at MS-UK’s wellness centre Josephs Court, Colchester. They are both studying their Masters in Physiotherapy at the University of Essex. Over the course of their two-year degree they must complete six placements made up of five-week increments. They were specially selected to partake in this new emerging role which is a first of its kind both at the University, within Essex, and with ourselves at MS-UK.
Julian was born and bred in Colchester, England, he comes from a sporting background and has completed a degree in Rugby Coaching and Performance. His own personal experience and use of physiotherapy sparked his interest and aspiration to train to become a qualified physiotherapist. He wants to use his skills to help others with the care and rehabilitation they require. Julian has a keen interest in neurorehabilitation, particularly in Parkinson’s Disease and is currently completing his thesis in this specific area.
Rebecca is from Londonderry in Northern Ireland, she comes from a similar sporting background after completing a degree in Sports Therapy. Her interest of the human body and her personal experience with physiotherapy inspired her to carry out work experience and work with a local rugby club, which further affirmed her interest in pursuing physiotherapy as a career. Rebecca has previously supported MS-UK three years in a row at the Virgin Money London Marathon providing massage for those competing for the charity. Rebecca’s interest varies from physiotherapy to paediatrics, pelvic health and neurology.
Together they are both at Josephs Court using their physiotherapy skills and knowledge to develop an emerging role for physiotherapy in the future with MS-UK. Currently they are evaluating the service provision and developing new pathways for greater exercise, health and wellbeing benefits. These new pathways include treatment for foot-drop, gait training, upper limb function and balance. Alongside the physiotherapy specific exercise, advise and education, the students are learning about the various services that the charity has to offer and will be attending social events, such as coffee mornings, while undertaking their placement.
Through the placement the students are hoping to leave their mark by providing a sustainable service that clients can make use of. Through the development of this placement both MS-UK and the University of Essex are looking to create a strong link to allow future physiotherapy students to complete placements with us at Josephs Court to further allow the current users to get the best possible services that we can provide.
Way back in 2016 MS-UK hosted a team from the School of Sport Rehabilitation and Exercise Sciences from the University of Essex here at our headquarters.
The team were running a trial testing the use of an Xbox game specifically designed to support people living with multiple sclerosis (MS). Since then, they have been working hard to continue exploring possibilities in this area, and yesterday I had the privilege of being invited to the MS Olympix at the University of Essex.
The day included taking part in three different games that could be played standing up or sitting down.
Sarah, who was first diagnosed with relapsing-remitting MS in 2007, attended the event...
‘After hearing about the day at a Josephs Court social coffee morning, it sounded really interesting. It is really good fun and some of the games – especially the ones that involve lifting my feet up – really helps my balance and coordination. It’s like playing the Wii at home but more fun!’
Sarah added, ‘the system comes from a background of rehabilitation, so I’d love to see it developed so people like me, living with MS, can use it at home’.
A big thank you to the team for inviting me to join in and we will keep everyone posted on future studies in exergaming!
Laura May, Communications Manager
Today we have launched a new video all about our plans for the next three years. At MS-UK, we want to be truly community-led and we have developed our next strategy with this in mind.
Way back in February 2018 the whole charity agreed that we wanted to involve people affected by multiple sclerosis (MS) in a meaningful way. We were really keen to make sure we didn't just tick boxes, we wanted people affected by MS to share their insights and experiences with us and help us develop a way forward that makes a difference where it's needed most.
We asked the MS community 'what is the biggest difference we could make for you today?' And you answered...through attending focus groups, joining our Virtual Insight Panel, completing surveys and sending emails, you let us know what matters to you.
So, what are our priorities for the next three years? Watch or listen to our film today to find out!
You can also read our Strategic Plan for more information.
I am very excited about planning for a healthier and happier future, a future where we can improve understanding of MS and provide the support that is needed most. Thank you so much for all of your feedback over the past year, you have made this possible,
Mandy Bunn climbed Kilimanjaro and raised a huge amount of money for MS-UK
I decided I wanted to do something big for my 50th birthday in January 2019. I wanted to see how far I could push myself both mentally and physically whilst raising money for a great cause. My partner, who has multiple sclerosis, uses MS-UK’s wellness centre Josephs Court in Essex regularly. I booked to climb Mount Kilimanjaro through Discovery Adventure. Located in Tanzania and standing at 5,895 meters above sea level, Mount Kilimanjaro is the tallest freestanding mountain in the world. It has always been on my bucket list and my father inspired me to do it!
The climb would take four and a half days, plus one and a half days to descent. The steep unpredictable terrain coupled with the altitude would certainly be the challenge I was looking for and very much a change from my day job. After roping in my friend Sue to join me I began fundraising for MS-UK. It is a national charity that is close to my heart and does great work. It is dedicated to empowering people with multiple sclerosis to make the most of today, and live life to the full.
After flying from Heathrow to Nairobi and then catching an internal flight to Kilimanjaro airport, we finally arrived at our hotel ready for the start of our adventure. After meeting with the commander Helen from Discover Adventure and the other group members we set off from Machame Gate at 10am, which is already at an elevation of 1,800 metres.
At this point we were all full of enthusiasm for the next seven hours of walking which lay ahead. We set off through the rainforest, the terrain was incredibly steep and therefore we had to go very slowly.
We carried four litres of water each and every day which we were advised to drink throughout the day in order to prevent altitude sickness – as you can imagine, there were toilet breaks aplenty! With an elevation of 2,835 metres, we arrived at Machame Camp at 5pm for some hot food and an early night.
The next day we were woken at 5.30am, the temperature had dropped to -5 degrees and I found myself trying to get dressed in my sleeping bag!
We started walking and spent six hours walking up boulders – the rainforest was beginning to end, the trees had disappeared and we started to walk on a path through ferns before we arrived above the clouds at Shira Cave Camp – with an elevation of 3,750 meters above sea level.
The porters were absolute troopers in carrying our kit along with their own and endeavoured to keep our spirits high by singing local songs. Unfortunately, the first member of our group dropped out due to altitude sickness. We enjoyed another cooked meal and another early night.
We were woken up at 5.30am again after a disturbed night’s sleep – although I was sleeping, the sleep quality wasn’t good.
Sue put the group through the usual morning warm up session which was entertainment in itself, more so for the locals!
Today was going to be a big test on altitude – we were climbing up as high as 4,600 metres above sea level to Lava Tour before dropping down to 3,900 meters to sleep. The reason we climb high and sleep low is purely to adapt the change in oxygen levels.
The terrain was “Mars-like”, very rocky and unsteady under foot. I really enjoyed that day and was still feeling good, however some of the group were showing the first signs of altitude sickness and really struggling.
After being woken up at the unearthly hour of 4.45am we started off by climbing the Barraco Wall, which was huge. It took two hours to climb up it before spending the rest of the day walking up and down hills in very hot weather. We had lunch at 10.30am and arrived at Base Camp at 4pm which stands at 4,900 meters above sea level. Unfortunately that day, two other team members left the trip, one pulled out, but the other was advised by the doctor he couldn’t continue. He had high-altitude pulmonary edema which is a life-threatening condition where fluid was on his lungs, so to continue the trip would have been deadly.
After six hours of terrible sleep, we were woken at 11pm to start the summit. I was given porridge (which is more like gruel). Just as we were about to go, another team member dropped out. Head torches on we started walking in absolute darkness, uphill and very slowly.
During the seven-hour uphill walk, people were being very sick, suffering from dizziness and becoming delusional, luckily for me, the only thing that remained was the slight upset stomach which I had on day two. The lack of air was hard, and everything became a big effort and I was really struggling with the cold.
We arrived at Stella Point just as the sun rose, but we still had 45 minutes to get to Uhuru Peak which at the summit stands 5,985 metres above sea level. As we walked to the peak, we were surrounded by other zombie-like walkers – some were being carried either to the peak or back down the mountain, and people were still vomiting, but I made it!
The overall relief of making it to Uhuru Peak gave me a second wind and after some photographs, I quickly got myself back down to base camp. The downhill walk was a killer on the feet. When we got back to basecamp, we had a quick lunchbreak and then another two hour walk to Millennium Camp (just because we hadn’t walked enough that day!) for a well-deserved sleep.
I was absolutely exhausted to the point I couldn’t unzip my bag to get my sleeping bag out. Everything seemed to require so much energy, which I just didn’t have. I just fell in the tent!
More force feeding and the final Kilimanjaro sing song and dance with the 50 strong crew who had supported and looked after us all the way. It was so infectious we were all singing and dancing in our exhausted state, it so lifted the mood.
Overall, my trip was varied with huge ups and downs and lots of laughter and camaraderie. This is undoubtedly up there with my best and most rewarding challenges. I’ll always a grateful to be able to have had the experience.
So thanks Pops for planting the seed!
What’s next you might ask? Well watch this space…
Always dream big and chase those goals because you never know when you will not have the luxury to be able to do it again.
I am extremely grateful for my family’s support and the generosity of everyone who has donated. There is still time to sponsor me and if you would like to, please click here.
I just wanted to wish you, on behalf of myself and the whole team here at MS-UK, a very Merry Christmas and a Happy New Year.
This year we have been proud to commemorate our 25th anniversary of supporting people affected by multiple sclerosis.
We have seen our newest service, MS-UK Counselling, grow rapidly as more and more people seek confidential counselling that is grounded in a knowledge of living life with MS.
Our helpline has answered thousands of enquiries and our Choices leaflets have been downloaded over 70,000 times from our website. We now have over 20 different titles, encompassing a wide range of topics, from diet and nutrition through to complementary therapies.
Our magazine, New Pathways, landed on doormats every other month, connecting thousands of people with the wider MS community. And our wellness centre, Josephs Court, has extended its range of complementary therapies and social activities to better support people affected by MS in our local community.
Next year, we will be launching our new strategy. Until then, thank you for your support in 2018. We couldn’t have done it without you.
Amy Woolf, CEO