Wellness coach and Director of Work.Live.Thrive Zoe Flint, discusses what you can do to boost relaxation which can help boost your immune and central nervous systems
The first thing to do is to prioritise relaxation as an essential part of your health. My experience of delivering mindfulness courses for MS-UK, has shown me that very few clients typically think of themselves first. The vast majority are far more concerned about their family and friends than their own wellbeing. Whilst this is a lovely quality, “you can’t pour from an empty cup”, as they say. In order to be there for friends and family, we must prioritise our own wellbeing. There are many practices you can try, and below are my top recommendations for beginning to develop your relaxation practice. Give each a try and see which you enjoy most, set yourself some time daily to practice (like learning a musical instrument, learning a relaxation practice takes motivation, determination and regular practice, enabling your brain to physically rewire itself and prime your mind and body to be able to habitually slip into states of relaxation).
Probably the most important and effective way to induce the relaxation response, setting time aside to breathe slowly, deeply, and extending the out breath has remarkable effects at reducing stress, anxiety and panic
Try it - Breathe in slowly, filling the lungs completely to a count of 5. Breathe out, slowly and completely, to a count of 7. Repeat until you feel a noticeable sense of relaxation. Struggling? Download ‘Breath2Relax’ at the App store.
2. Learn Mindfulness
Mindfulness is a brain training meditation practice that originated in Buddhism 2,000 years ago. There is a wealth of research into its effectiveness at reducing stress and anxiety, increasing focus, reducing pain, boosting the immune system, reducing fatigue and increasing a sense of acceptance. There are also studies specific to MS that show a decrease in symptoms.
Try it - Sit comfortably, in an upright position. The aim is to be relaxed but alert. Start by taking a few slow, deep breaths, letting go of any thoughts of worry, lamenting or busyness. Spend a few moments focusing on the sensations of breathing. Feel the air as it enters your nose; the temperature, the quality. Focus on its journey down into the lungs. The movement of the body and rib cage as you inhale and exhale. Notice the change in temperature of the breathe as you exhale. Struggling? Download the Apps ‘Calm’ or ‘Insight Timer’.
3. Progressive Muscle Relaxation
In addition to producing a feeling of calmness and relaxation, this technique helps you to notice areas of the body where tension is held and can ease headaches, muscle stiffness and bring a fresh supply of blood to important muscles.
Try it - Start with your feet and work up towards your head. Scrunch up your toes, hold, and release. Flex your feet, hold, point your toes, hold, and relax. Squeeze your calf muscles, release. Squeeze your thighs, relax. Attempt to pull your tummy button towards your back. Hold, and release. Squeeze your shoulders up to your ears, hold. Let go. Make fists with your hands, tense them tightly, hold, release. Clench your jaw, hold and relax. Sit for a few moments, absorbing the benefits of the practice. Struggling? Search ‘Progressive Muscle Relaxation’ on YouTube.
4. Visualisation Techniques
Where’s the place you find the most relaxing? A beach, a walled garden, a meadow, a lagoon? Wherever it is, you can go there in your mind.
Try it – Imagine the most relaxing place you can, using all your senses – what would you smell, hear, see and feel? Warm sun on your face, birdsong, cool, soothing water or soft grass under your feet? Let your imagination go wild and spend some time each day in your relaxing place. Struggling? Search YouTube for ‘guided relaxations’.
5. Fun and Laughter
So good for our immune systems and wellbeing in general, fun and laughter are often little prioritised in our busy lives. What makes you laugh? Can you make a list of films, podcasts, friends, activities and books that make you laugh out loud? Laughter released pain relieving endorphins and helps us bond with others.
Try it – Use your list to do something daily that you find fun and induces laughter. Struggling? Try a laughter yoga class!
As soon as I found out I had a place on #TeamPurple in the Virgin Money London Marathon 2020, I started telling everyone, and I mean everyone!
Setting up a JustGiving page makes sharing your fundraising story so easy. As soon as I had mine set up, I shared the link with friends, family, work colleagues, clients and suppliers at work, even the WhatsApp group that all the neighbours in my building are part of.
Spreading the excitement
Being passionate and truly caring about the cause you are running for is infectious. People feel it and get behind you because of it. Don’t worry about boring people, or get wrapped up in what they think about what you’re doing, as that’s not a productive use of your time and energy.
As well as donations from friends and family, I sold teams on a football scratch card. If you search ‘football scratch card’ on Amazon you can buy a pack of 10 for £3. I sold each team for £10, with £200 to go to the winner and £200 for MS-UK. I timed it to be drawn just before Christmas which I think helped get the squares sold. I’ll definitely be doing another card pre-race day.
I have also been in touch with my local community manager at Tesco to organise bag packing. I’ll be pushing for Easter weekend so that the shop will be a bit busier, and it’s not long before the race itself! I have linked up with a couple of other runners near me so that we can take this on together and have more of a presence in-store.
Running for my mum
My mum had secondary progressive multiple sclerosis. Her left leg was worst affected, making walking a daily struggle.
She would often fall in public and be left humiliated and, of course, in pain.
In September 2013, she was admitted to hospital for an unrelated skin infection. On discharge she was largely bed bound as her MS became increasingly aggressive, spurred on by a weakened immune system. A combination of all of the above led to her suffering a pulmonary embolism and passing away on 26/09/13. I don’t need to tell anyone how hard losing a parent is. I am completely and utterly lost without my mum and, even six years on, it’s as rubbish as it was then!
I was too young, selfish and naïve to take control of the situation for mum. I want to run the London 2020 Marathon in memory of her and to raise funds for MS UK to be able to help others with MS because of this. MS is misunderstood, it affects everyone differently and is completely unpredictable. I want to play my part in changing this.
My top tips
If you’re training for a big run, get started on your fundraising as soon as you can so you can smash it out of the park early and focus on training
Talk to everyone about it. It will connect you with people in a way you would never have imagined.
Use social media. I’m documenting my training on Instagram (@healthylivinglisa_). It’s an amazing tool to get chatting to other runners and widen your network even further.
Get yourself into the Facebook group and connect with other MS-UK runners. There are also a few London Marathon Facebook groups with thousands of people to chat to and get tips from.
Not everyone has this opportunity, certainly not those that are badly affected with MS, so it’s important to recognise how much of a privilege we all have to be part of #TeamPurple and what an honour it is to spread awareness and take this challenge on.
Whether you’re newly diagnosed or not, there will be more than one occasion when you ask yourself this question. So how do you tell if you’re having a relapse?
If you have multiple sclerosis (MS) relapses are a big part of your condition. Typically relapsing remitting multiple sclerosis is characterised by relapses. However, even if you have secondary progressive or primary progressive MS you could still experience them, but perhaps less frequently.
A relapse can be defined as a sudden episode of new or worsening symptoms over a period of days, weeks or months.
What constitutes as a relapse?
Everyone is different and it can be difficult to recognise a relapse. Symptoms associated with a relapse can include: fatigue; pain; muscle stiffness or spasms; balance problems; weakness; numbness and tingling; bladder and bowel problems; changes to vision, thinking and memory and coordination issues. You may experience one or many of these symptoms at any one time.
New symptoms can develop, or those that you have previously experienced can worsen during a relapse and they can appear slowly or suddenly. To qualify as a relapse, symptoms must last for more than 24 hours and last for at least 30 days from the start of your last relapse. It is important to inform your doctor or MS nurse about your symptoms, so they can offer advice and treatment if necessary.
It is also important to rule out any other reasons for the symptoms you are experiencing. Infections, heat and stress are all common factors that are known to make MS symptoms worse and once treated symptoms may subside.
Write it down
It can be helpful to keep a symptom diary. Documenting the symptom, how long it lasts and how it affected you, for example, can help you define whether it is a relapse or not, and will also give your neurologist and MS nurse a clearer overview of how you experience MS and what they can do to help. Track your symptoms using the MS-UK symptom diary. Click here to download your free symptoms diary.
A relapse is a result of inflammation in the immune system damage to the myelin, otherwise known as demyelination. Demyelination can slow or block the messages sent via the central nervous system, which as a result can cause the number of symptoms listed previously. However, inflammation doesn’t always cause a relapse. It can occur on other parts of the brain that aren’t associated with symptoms and the brain may be able to reroute around inflammation, this type of inflammation is known as silent lesions.
What should I do if I am having a relapse?
Relapses can be a sign that your MS is more active so it is important to report each one, even if you don't think you need medical treatment. Report it to your GP, MS nurse, or neurologist, who will then advise you on the best cause of action.
Multiple sclerosis blogger and influencer Martin Baum reflects on life with MS
There’s little doubt that much has changed since I was first diagnosed with multiple sclerosis (MS) back in the 80s. Today there’s more information, recognition and understanding but what does that really mean to any newly diagnosed young person? Well, if my journey through an illness with more twists and turns than the Hampton Court maze is anything to go by, not a lot.
What I still remember at the inception of diagnosis was how my mother, with the best of intentions, inadvertently began the process of putting my life on hold. She was always concerned about what might happen. My aunt, her sister, had MS. She was in a wheelchair which only added to the fear of an uncertain future for her son.
A negative ‘what if’ mindset was being formed and it was scary. Yet despite all her worst-case scenarios it took over thirty years for me to reach the secondary progressive stage of MS and writing this blog, has given me pause for thought all these years on.
A fundamental issue I have with MS is that it’s easy to forget what we can still ‘do’ and what we are able to achieve. The older we get the harder it can be to get on with life because sometimes MS makes simple tasks more difficult. But as far as it goes, the newly diagnosed youngster needs to be reminded that they are still essentially the same person as they were before being labelled.
There’s a line from Tashauna, a song by the Rossington Collins Band that goes ‘if you believe that you are weak, then weak you'll surely be’. A friend played me the song years ago at a time I was struggling with my diagnosis – it wasn’t the first time and it wasn’t to be the last where I felt I was out of my depth - but that lyric has stayed with me almost as long MS has.
Just because the worst-case could happen, it doesn’t necessarily mean that it will. Having MS is like climbing Mount Everest. Not everyone reaches the summit. For others who are at relapsing remitting, secondary progressive and primary progressive base camps it’s anyone’s guess how far up the mountain they’ll ascend. But until then, until you get there or if you get there, the only advice I would offer to any young person is this – it’s better to live a life, not MS.
Wow, I have been dedicated to my swim challenge for 10 weeks already, which has gone quick. That equals 600 lengths, which means I have swum 15,000m. Phew, that makes me feel quite exhausted thinking about it. Of my 80km target, I have now swum 15k.
The hardest part now we are in the midst of winter is leaving my nice warm house to go out in the dark cold evenings. I am trying to get to the pool a bit earlier in the evening to help with that. I haven’t missed a week and once I am there it’s become quite easy to get in the pool and churn out the lengths.
One week I wasn’t that well and didn’t manage the distance. I made up for it the following week though by going twice. I am so determined! I can get bored and distracted very easily so I feel proud of myself for sticking to it. For some reason, this feels different to anything else I’ve ever done and the reason I’m doing it is by far the biggest factor in keeping me going.
One week I did really struggle to get into any kind of flow and I couldn’t focus my mind no matter how hard I tried. Every length was tough and I was really frustrated. I kept going but it was a very slow swim. I put it behind me and realised it was likely because I’d had a busy weekend, (and possibly a few too many drinks with friends!). It made me realise the importance of looking after my body if I want to achieve the distance.
My Dad was a very determined person, with everything he did in his life. He didn’t let anything get in his way, including his multiple sclerosis (MS). I remind myself of this at various points when I’m swimming. If he could be that determined then surely I must have a bit of that in me too! It is him that drives me forward. This challenge has made me feel closer to him than I have felt for some time. Maybe as I am allowing myself the headspace each week rather than constantly being lost in the busyness that life brings.
As we approach our tenth Christmas without him, we will remember with smiles and celebrate the memories. Merry Christmas Dad!
If you would like to donate to Laura's fundraising please visit her Just Giving page. Thank you!
Every year at MS-UK we get into the Christmas spirit with a team lunch and Secret Santa. It's a great time to come together and reflect on the past year.
This year we decided at MS-UK to do something in our local community too - so we organised a food bank donation. Over the weeks tins and essentials kept piling up beside my desk and I kept thinking, this must be it? But no, our lovely staff kept giving and I was absolutely thrilled to be able to deliver 36.2 kilograms of items to our local foodbank in Colchester earlier this week!
Over 90% of the food distributed by foodbanks in The Trussell Trust network is donated by the public – everyone referred to them is offered a balanced and nutritious three day supply of food.
You can find out more about them on their website. When I went along to drop off our donation the staff were really helpful and were thrilled we had pulled together to do something in our area!
A big thank you to all the staff at MS-UK for getting involved - hopefully we have begun a new tradition!
MS-UK Counsellor Rachel Murray reflects on the uncertainty of living with multiple sclerosis
We travel through life with varying degrees of and awareness of uncertainty. We like it when we feel certain - it feels safe - and we don’t like the anxiety and fear that uncertainty can bring – for many of us it feels scary and unsafe.
A diagnosis of multiple sclerosis (MS) and living with MS increases the uncertainty experience! Symptoms can be unpredictable and may or may not be connected to MS. Never knowing when a relapse may come along can be daunting, uncertainty about treatment options and their uncertain long and short term effects, uncertainty about MS in workplaces, MS in family life, and MS in the future. All of these are thought about through the lens of uncertainty and may frighten and worry us.
Living with uncertainty as a constant companion can be exhausting and frightening but what if the lens is changed so that uncertainty is viewed as an adventure, as a path we did not expect to be on but as we are… then let’s see what’s around the next corner and make the most of the journey anyway. What if uncertainty becomes openness with curiosity and a willingness to see what unfolds. What if we start to welcome and embrace uncertainty because it opens up a different experience and viewpoint?
What if you meet the challenge of processing and experiencing the journey with MS by choosing the lens of adventure and curiosity over the lens of uncertainty? You may find yourself being surprised along the way.
“Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious ambiguity.” — Gilda Radner
To find out more about MS-UK Counselling or sign up, visit www.ms-uk.org/counselling.
My name is Heather and I have been a Community Champion for MS-UK since April 2019.
I initially got involved with MS-UK when I volunteered at the Virgin Money London Marathon in 2018. I found it incredibly rewarding to be part of something that made such a difference to MS-UK and, I was so inspired by what the runners achieved, that I even took on the British 10k myself in March - and raised £300!
Since then I have gone on to complete the Colchester Half Marathon for MS-UK (raising a further £470) and volunteered at several fundraising events. When the opportunity arose to become a MS-UK Community Champion, I jumped at the chance.
I lead a very busy life and really don’t have as much time to give to charity as I’d like, but being a Community Champion means that I can help to raise money for MS-UK in my own time without too much of a commitment; it is completely flexible around my busy lifestyle.
I have seven collection pots placed at various shops in my local area, and I change them every 2-3 months when I am passing by. I find it so rewarding when I empty the collection pots and find out how much has been raised, the pennies really do add up! It’s also lovely to speak to the different shops about MS-UK and how they support people affected by multiple sclerosis (MS), it’s surprising how many people have a connection to MS when you get talking, and I know by having these conversations I am helping to raise awareness for the charity.
If somebody is considering becoming a Community Champion for MS-UK, I would definitely recommend it. I always feel so valued and really feel that I am part of the MS-UK family. I know what I am doing is making a positive difference to those affected by MS and I’m proud to be out there with my MS-UK ID badge on!
If you would like to be part of something special and become a Community Champion like Heather, get in touch with Lucy on 01206 226500 or Lucy@MS-UK.org to find out more!
I began fundraising for MS-UK back in 2017. It was an obvious choice of charity as my grandad was diagnosed with multiple sclerosis (MS) when he was younger and lived with it for many years.
Pretty much all of my memories of my grandad, minus any earlier photos are of him living with MS. Really you know no different when you are younger, and for my brother and me, this was normal. A more vivid and charming memory is how he would always have a tin of humbug sweets which we would help ourselves to whenever we visited him.
I have always wanted to run a half marathon. Saying that I have always wanted to say I have completed a full marathon, but expectation and reality are worlds apart. A good, or not so good starting point was to sign up to a half marathon when on a sun lounger, with a cocktail, in Mexico and forced myself into training upon my return. I thought if I’m signed up, I’m committed, and I really was committed to raising as much money as possible in honour of my grandad and for such an amazing charity.
The training was going well, it was hard and I was often faced with the mentality of “I’ll do it tomorrow”, but I was gradually getting my runs in and my miles up. Ultimately I wasn’t too fussed about hitting a certain time or pace, for me it was about the finish line, not finish time. My goal was to post as much as I could on social media, text as many people as I knew and keep sharing the event with as many people as possible.
In October 2017, I ran, completed, and surprisingly didn’t pass out after my first half marathon. It was hard work! The atmosphere was amazing, and the supporters throughout the race were incredible, especially those handing out Jelly Babies! I hit a wall on the ninth mile but continued with some kind of walk/run. I thought of how proud my grandad would have been to have seen me, and to have known I was running for the charity. Not only that, but some people don’t have a choice in their abilities and limitations because of their health. I should be ecstatic that I have the ability to finish a race and for such a good cause!
After the race, I said I wasn’t going to run another half marathon, but I would raise money for MS-UK in other ways.
May 2019, I signed up for my second half marathon....!
Same thoughts, same struggles, but through amazing friends and family and sponsorship I have been able to raise over £1,200 across both runs. I said I wouldn’t run another half marathon, but I guess I’ll be at the start line in 2020. Wish me luck!
If you would like to donate to Lauren's amazing efforts, please visit www.justgiving.com/fundraising/lauren-chrimes2. Thank you! If you, like Lauren, want to take on a new challenge, call Lucy on 01206 226500 or email firstname.lastname@example.org.
Diana Crowe, MS-UK's Head of Services, met locally with H Goodwin, Suzanne Howe and Amy Melton from United in Kind, an organisation which is aiming to put an end to loneliness in our communities. It was great to share with each other about the work we have been doing.
There are eleven United in Kind coaches in total whose roles are to connect communities through kindness to reduce loneliness and social isolation.
It was interesting to hear how the coaches are building relationships across Essex with hundreds of community, charity and voluntary groups to reconnect communities.
The organisation needs everyone in the community to come together, so if you know of any community activities that might be of interest to others in your area, please share by sending an email to email@example.com. Local coaches can also help set up activities in your area. To find out more about your local coach go to www.unitedinkind.org.
You can follow United in Kind’s activity on social media using the hashtag #UnitedinKind and by visiting www.facebook.com/unitedinkind, www.twitter.com/unitedinkind and www.instagram.com/unitedinkind.
I just wanted to let you know our opening hours for the festive period as we get closer to the mince pies!
Tuesday 24 December - Open 9am to 1pm
Wednesday 25 December to Wednesday 01 January - Closed
Thursday 02 January - Open from 9am
If you attend our wellness centre in Essex, Josephs Court, we will also be opening for a couple of days so you can continue your exercises throughout the festive period. Josephs Court will be open from 9am to 1pm on Friday 27 December and Monday 30 December.
During the holidays, you can always contact our helpline team and we will respond in the New Year when we return.
If you would like to speak to someone before then, the Samaritans are open 24/7 and you can contact them in a variety of ways. You can visit the Samaritans website or call them on 116 123.
Wishing you a merry time if you are celebrating Christmas and a very happy New Year from all the teams here at MS-UK!
Head of Services
HSCT stands for hematopoietic stem cell transplantation. It was first used to treat cancer, but is now used as a therapy for autoimmune diseases such as multiple sclerosis (MS).
The aim of HSCT treatment in MS is to ‘reset’ the immune system to stop it attacking the body.
You may have seen it in the news because some high profile celebrities with MS have had the treatment, including Hollywood actress Selma Blair.
What happens in HSCT treatment?
First, chemotherapy is given to the patient via an infusion in the vein to stimulate the production of stem cells in the body. This usually takes up to 10 days. The extra stem cells are then harvested from the blood and stored.
The patient then spends some time in hospital while they are given powerful chemotherapy which kills off much of their immune system. The stored stem cells are then reintroduced to the patient’s body. At this point, due to having a much weakened immune system, they are at very high risk of infection and cannot leave the hospital, are kept in isolation, and are often given antibiotics.
The hospital stay can last for a long time while the immune system is rebuilding itself – anywhere from between 10 to 160 days. Within three to six months, the immune system should gradually rebuild itself.
Who is eligible?
You can get HSCT on the NHS, but only if you meet very specific criteria.
Generally, current evidence says that the treatment works best for those who are under 45 and have relapsing MS, have had it less than 10 years, and have an Expanded Disability Status Scale of 5.5 or less.
There must be signs that the condition is active, meaning there must have been two relapses within the last 12 months, despite the person having taken disease-modifying treatment.
If you are looking for more information or support surrounding HSCT, there are plenty of Facebook communities that may be able to help...
Alternatively, you can call the MS-UK Helpline free on 0800 783 0518.
Sarah Creed shares some of her fundraising experiences from the last few months and a few tips in the lead up to Christmas
Guess the time!
I was lucky enough to get a place in the New York Marathon and I decided to run a ‘guess my time’ competition, which required people to make a £2 donation and their guess. The prize was a £50 John Lewis voucher and the person who guessed the closest to my finishing time won the voucher. We managed to raise more than £260 and a lot of people donated more than the £2 minimum. It created more of a buzz and I had lots of people tracking me on the way. If you are doing any races before London marathon you could do the same thing. I've had another £50 restaurant voucher donated too so I will do the same for my Virgin Money London Marathon time.
We also ran a charity pub quiz. The pub gave us their function room for free and my husband wrote the quiz for me. We charged £2 per person and had a raffle on the night. I sent off hundreds of emails to companies using the MS-UK letter and my own one I wrote using the London marathon letter template and had reasonable success. The most generous companies are the local ones so definitely get out there and ask and give them good press in return. It was a really fun night and we raised over £300 too.
Name the bear
Currently, we are running a name the Teddy bear contest in time for Christmas. I have a beautiful hand made Bear that I am giving people the chance to name. For £1 they can pick a name from the list of 50, for £2 they can pick add a name of their choosing to be added to the draw. The latter has had a fantastic response with people trying to outdo each other on who can come up with the funniest name.
Lastly, we are organising a charity ball for March with a sit-down meal, DJ and raffle. I have found the best way to get donations is to really get a buzz about what you are doing and promote constantly with deadlines as people always think 'I'll do that later'. I try to make everything I write engaging, humorous and relevant so those donating feel involved in the process and share in celebrating the successes.
A final tip
I have also found that having a slightly lower minimum donation has increased the amount of interest I get and often people donate more than I am asking anyway.
I hope these ideas help with everyone's fundraising and you all have a lovely Christmas!
If you would like to donate to Sarah’s Just Giving page, visit www.justgiving.com/fundraising/Sarah-Creed4.
Chris Rayner turned his life around in his mid-30s and competed beyond his wildest dreams
Watching athletics with my Dad when Seb Coe, Steve Ovett and Steve Cram flew the flag for our country is one of my earliest sporting memories. However, if you had told me back in 1983 that I would one day pull on my country’s colours in competition, I would have found that hard to believe. Skip forward to October 2019 and I found myself proudly slipping into my England vest ahead of the Yorkshire Marathon!
During my early 30s, as is often the case, I’d put on a bit of weight and didn’t really exercise. I was stuck all day behind the wheel of a car as a sales rep, and my eating habits weren’t the best.
The big change happened when my marriage failed. I began jogging to try and do something positive. It’s well known that running can really boost mental health, and I was feeling a bit lonely. A friend suggested I go along with her to an event organised by Chiltern Runners. I became a regular.
I was adamant I would never enter a race, but one night, after several post-run beers, I was persuaded to enter the 2013 Leeds Abbey Dash 10k and, during the same beer session, declared I’d be able to do it in under 40 minutes. I didn’t even have a running watch back then so decided I’d better train hard, and crossed the finish line in 39 minutes 22 seconds. I was hooked!
The excitement of Leeds was short lived, however. A few days later I was in an awful car accident near Aberdeen which saw me upside down in a field. A week later my spleen ruptured, which resulted in major abdominal surgery to save my life. I felt lucky and so thankful to be alive and was desperate to get back to running to put events behind me. Six weeks after surgery and now minus my spleen, I cautiously took part in the South Manchester parkrun and it felt great to be back.
My first marathon
The next huge event in my running story was, again, after a few beers when I was persuaded to enter the 2016 Manchester Marathon. I woke the following morning thinking I’d made a terrible mistake, but then I promised myself I would dedicate the next three months to doing every single run on the plan, come rain, sun, snow or sleet.
I stood on the start line that sunny April morning knowing that I could not have done any more and that, whatever happened in the race, I had already achieved the real value the marathon. The icing on the cake was that after a rather frantic sprint to the finish line, my watch said 2 hours, 59 minutes and 57 seconds!
After that, there was no stopping me and I competed in the prestigious Boston Marathon, then Venice, then London, and then the Chester Marathon. I managed to finish in under 2 hours 45 minutes and, a week later, I received an email to say I’d qualified to represent England Masters in the 2019 Yorkshire Marathon!
My first charity marathon
It was going to be a proud day for me pulling on an England vest in my home county with my parents watching. I decided to use the occasion to do some good and considered running for charity, something I had not done previously. My grandfather Thomas Rayner had multiple sclerosis (MS) and died before I was born. I knew my father and uncle would be very delighted if I ran to support an MS charity and I chose MS-UK because of the fabulous support they provide to people living with the illness, including friends and work colleagues. Having set up a Just Giving page, I was amazed when £1,000 was donated in just 48 hours and £1,500 in total was pledged. I am fortunate to have some very generous friends and family.
The big day
The day itself was amazing. Lining up with my England colleagues for the team photo made it suddenly seem very real, but I quickly got my race head on as I had a job to do. I had my girlfriend and friends cheering me at the start and knew my parents would be at mile 14/15. Despite having had a few issues in training was determined to give it my all.
Standing alongside my Chorlton team mate Matt in the start pen, we wished each other luck and waited for the off. The conditions were pretty good – dry, cool, but a bit windy in places. I went out hard in the early stages and waited for the wheels to fall off, but got to halfway feeling good.
The shout of “Go on England!” from my mum gave me a boost at 15 miles, but a mile later, I started cramping a bit in my left hamstring. Fortunately, I managed to get rid of the cramp but lost touch with the group I had been running in, which meant running into the wind on my own, which is hard both physically and mentally.
The marathon is a massive mental game – you have so much time out there where you need to maintain form and focus and also remain hard in the head. Fortunately, Yorkshire folk are famed for this! The last six miles are always a battle in every marathon – they often say it’s a 20 mile warm up for a six mile race. I kept thinking of the finish line, all the people who I knew would be tracking my progress, the people who had sponsored me, and I shut out the message from my body that was saying Stop!
Two miles to go and my pace had just dipped a touch between 20 and 24 miles, but I rallied myself and knew I had this race and another personal best was within my grasp. With half a mile to go, the organisers kindly put a short but sharp hill in your way, but you know when you crest it you have a 400 meter downhill run to the finish. My cheer squad was placed on that hill and I flew up it, then belted it down to the finish line as the commentator called my name over the public address. I crossed the line, arm aloft, in a new best of 2 hours, 40 minutes and 51 seconds.
It is only when you finish a marathon that you realise how much pain you are in and you go from sprinting to the line to suddenly finding it hard to walk! However, I am so lucky to be able to enjoy my sport and it serves as a great reminder that things I sometimes take for granted are not so easy for others. Whilst I am very proud of my progress from taking up running in my late 30s to running for England in my mid-40s, the amazing donations I raised for MS-UK was the something that meant the day was truly special.
MS Clinical Nurse Practitioner Miranda Olding reveals the different treatment options for this common MS symptom
Spasticity, otherwise known as a tightening or stiffness of the muscle, is due to increased muscle tone and exaggerated response to muscle stretch. It is a common multiple sclerosis (MS) symptom and can affect the way we function, such as walking and posture. In addition, it can increase fatigue and cause pain. Unmanaged, it can lead to permanently shortened muscles called contractures and can affect daily living.
Spasticity also refers to involuntary muscle contractions or sudden movements, which range from a mild feeling of tightness, to severe, painful spasms, often of the legs. Here we focus on the problem of constant stiffness.
Treatment of spasticity is ideally done with the person with MS at the centre of a multidisciplinary team, with neuro physiotherapist, occupational therapist (OT), MS nurse, any relevant consultant, and possibly wheelchair services all liaising with each other.
The first thing to be aware of is that anything that is bothering the body can trigger or exacerbate spasticity in MS, so before medication, these 'trigger factors' need to be dealt with. They include, but are not limited to, infection, constipation, urinary retention, sore skin or pressure areas, anything that pinches, rubs or chafes, increased emotional stress and pain.
Muscle relaxant medication
The key with all muscle relaxants is to start low and go slow. You can even cut tablets in half with a tablet cutter from a pharmacy and start with a smaller dose. The idea is that by gradually increasing it every few days, you find a dose which reduces the problem, without causing too many side effects. The first people usually try is baclofen, and the most common side effects are drowsiness, or feeling weak. Because MS involves both stiffness and weakness in the muscles, you can find that a degree of stiffness is needed to maintain the strength needed for standing, so it can be a fine balance.
NICE guidelines recommend gabapentin as the next treatment to try if baclofen is not right for you. This is often used for nerve pain in MS, but also has a muscle relaxant effect. However, some people find the sedating side effects, or the fact that they are putting on weight, too difficult.
Another muscle relaxant that can be tried, which is less sedating, is tizanidine. But you will need a blood test before and for the first three months of treatment to check that your liver is coping and is not being harmed.
Occasionally, an older muscle relaxant, dantrolene, is tried. Diazepam (valium) is also effective as a short term muscle relaxant, but it is easy to become dependent on this. Clonazepam can also be tried.
When just a couple of defined muscles are causing the problems, botulinum toxin (botox) can be very effective when injected to paralyze these muscles. This needs to be repeated around every three months.
There has been evidence for some time that components of the cannabis plant can help some people with MS spasticity and pain. Sativex, the cannabis-derived medicine, is licensed to treat spasticity in people with MS, and is now available on NHS prescription from a specialist doctor, so speak to your neurologist or MS nurse to find out more. It is still illegal to possess this drug if you do not have a prescription.
CBD oil is a cannabis-based product that contains none of the psychoactive component, TCH, and so is legal for anyone to use. In studies where there was evidence of effectiveness, doses ranged from 0.8 to 1.8mg, taken between 2-4 times per day. The easiest way to control the dose is to take it in liquid form, and start with one drop under the tongue, then increase as necessary.
If other medications aren’t proving effective, a referral can be made to be seen in a specialist spasticity clinic, where a baclofen pump can be considered. This involves a tiny dose of baclofen being delivered straight to the spinal column via a small plastic tube, fitted to a pump, about the size of a shoe polish tin, which is inserted just under the skin in the abdomen. As the dose is so small, people have a lot less side effects than with tablets.
The way that you sit and lie in bed is important to break up the pattern of tight muscles with MS spasticity. However, this is something a physio or occupational therapists (OTs) can help with. OTs can also assist with night time splints to stretch out hands that have become very tight and to help ensure that all seating and equipment is supportive.
Keeping a full range of motion is important. Start by seeing a neuro-physio, and then keep things going with exercise. Everybody should be able to do some exercise or stretching, whether this is attending a regular exercise or yoga class, using regular or assisted gym equipment, including from a wheelchair, or even just passive stretching with a helper. A resource for this, 'Stretching with a helper' can be downloaded here https://bit.ly/2rrqHFu
Exercise not only helps to stretch out tight muscles, but also to reduce spasticity and spasm, boost fitness and lift mood.