I made a promise to my dad twenty years ago that one day I would do a charity event and raise money for multiple sclerosis (MS). My dad is 83 and had relapsing-remitting MS for 40 years and I have seen first-hand how this disease not only affects the person but also the family.
So, after twenty years of procrastinating, my partner Anne-Marie and I decided to finally hold true to my word. I was already in the RideLondon-100 so we looked at MS charities for Anne-Marie. Thankfully we spoke to Jenny at MS-UK who was enthusiastic and welcoming and that sealed our decision.
I know a lot of people use charity places as a way of getting into an event they wanted to do anyway but if there was one bit of advice I could ever give someone, it would be to pick a charity that means something to you.
For all those rainy days you don’t feel like training, for all the times your bum hurts (even with a litre of chamois cream slapped over it), for all those times you are halfway up a steep hill wondering why you aren’t slouched on the couch chowing down on popcorn, knowing why you are putting yourself through this makes such a difference to your resolve and dedication.
Training went well until one sunny May afternoon, I had a collision with a car whilst out cycling. The end result was a road closure, ambulance, two police cars, a suspected broken leg, injured back and hand, stitches in the chin and my bike was written off.
Subsequent x-rays and MRIs to my hand and leg miraculously showed nothing broken. By sheer chance, the angle of my knee prevented a far more serious long term knee injury occurring so I feel incredibly lucky.
Nevertheless, I was told I would be on crutches for up to 10 weeks and that all cycle events would be out until September.
This was devasting for both myself and Anne-Marie.
To put this into perspective, Anne-Marie is not a confident cyclist. She has never ridden on her own so the thought of her cycling 100 miles solo scared her to death.
She continued to train on an indoor bike in the gym but only for an hour at a time which wouldn’t be enough to get her in shape for a 100 mile ride outside.
She also suffered far more than me after my accident. My damage was physical but Anne-Marie’s was mental. From a lack of sleep due to nightmares leaving her exhausted, from having to be my carer for five weeks leaving little time for the bike, to seeing her partner in almost constant pain, her confidence plummeted.
But this is where choosing a charity that means something to you is so important. Despite all her fears, she knew she wouldn’t pull out. It was too important a promise to go back on.
After a few weeks of mental turmoil, she made a last-minute decision to try the Tour of Cambridge on her own. A massive feat for her and one I am so proud of her for.
In the meantime, I had been rehabbing for up to two hours a day. I developed a huge admiration for people like my dad who, because of their MS, have to ‘rehab’ every day just to keep mobile and functioning.
I remember the first day I managed to do a full revolution of a pedal stroke in the gym. It took me 10 minutes to get my leg over the top of the pedal stroke and it felt amazing. Within a week I managed five minutes on an indoor bike. A week later I double that time to 10 minutes and a week later I tried 20 minutes. Each time I felt exhausted and despite the Physio telling me there was no way I would get to the start line of the RideLondon, the prospect of being there with all the other MS-UK riders really made me want to give it a shot.
Despite everyone telling me not to overdo it, I cautiously overdid it and increased my longest ride from 20 miles to 25 to 35 to 53 to 70 miles on subsequent sessions with Anne-Marie always by my side.
At the end of each ride, I felt exhausted and would fall asleep in a sweaty mess.
So here we are today. My max longest ride will have been 70 miles. I don’t feel ready for the event, my hand still hurts but I’ll give it a jolly good bash. I can honestly say if it wasn’t for the importance of the charity, I wouldn’t have tried anyway near as hard on the rehab. Anne-Marie would have certainly dropped out of the event too but she feels a connection to the charity through me and my family.
Seeing the effort families put in to helping their loved ones, seeing the effort those suffering from MS put into daily life means that you can’t help but feel motivated and inspired to put that little bit more into your own daily life.
For those who are reading this who are doing the event, I look forward to seeing you on the start line. I also look forward to seeing you (hopefully) at the finish line.
It’s all for a great cause and the journey has been unexpectedly up and down but also an amazing growing experience for both of us.
Good luck everyone and go #TeamPurple!
David Bint and Anne–Marie Cannon
Mindfulness is a bit of a buzzword and that is for good reason. With practice, mindfulness can change the way our brains work and instill a sense of calm. Far from its roots in traditional Buddhist practice, mindfulness of today is about taking your focus out from the past which we can’t change and the future which is yet to happen and putting it firmly in the present. This can be done in a number of ways from focusing on the body to the external senses.
Forgive others and ourselves
Holding on to grudges and past hurts has been likened to ‘putting your hand into a fire but expecting it to burn the other person’. It might feel like the right thing to do, but what does it really accomplish? Forgiveness is surprisingly seldom about the other person but about the feelings and beliefs that we carry with us from the precipitating event. Forgiveness is a private decision and it is not necessary to tell the other person that we have forgiven them. Of course, forgiveness of the self is just as important, as feelings of shame can be overwhelming, we are human after all and everyone makes mistakes.
Use positive affirmations
It’s easy to fall into a rut of negative talk, but by changing the wording it can have a transformative effect on how we feel about ourselves. Remember that coach from school or any other supportive and encouraging role model you have had the joy of spending time with? Be your own cheerleader – ‘you can do it, you are worthy and you are loveable’.
Set small goals and complete them
By setting ourselves small achievable goals throughout the week we can begin to see that we can do the things we set our minds to. Whether it is finishing that book, learning to crochet, phoning an old friend or putting time aside for self-care, it shows ourselves and others that we care for and value ourselves.
Keep a gratefulness journal
Log three things you are grateful for every other day, they don’t have to be big things. A smile from the lady in the newsagents, a bird on the windowsill or simply an hour of your favourite TV show. By feeling and acknowledging the small moments in our life that we often take for granted, we can start to build a more accurate model of what our life is really like rather than focusing on the negative parts.
Last week, MS-UK Counsellor Louise Willis looked at what self-esteem is, this week she will look at how we can help to build a healthy level of self-esteem
Stop negative self-talk
We have all done this, whether it’s how we speak to ourselves when we make a mistake or our general internal narrative. When we talk to ourselves in a negative way we have no filter to say ‘hey, that is not true’ or even to question it as we may to a friend if they were to say it. Would you expect someone who is being spoken to negatively to have high self-esteem?
Step up the self-care
You are a valid and unique person like everyone else. Treat yourself with the respect you need and others will too. Spending time doing your favourite hobby, getting a massage, reading a good book, enjoying time outside or a long relaxing bath are all ways to show ourselves that we care.
Being assertive is not about taking control or being aggressive or forceful, but about kindly and calmly stating your needs or wants with respect to both yourself and others. Assertive communication uses ‘I’ statements as a way of owning thoughts and feelings and always calmly listening to and acknowledging the other person. Practicing saying ‘No’, planning conversations in advance and offering alternatives is also helpful in assertive communication.
Develop healthy boundaries
Having stable and reliable boundaries affords us and others the security to know where we stand in relationships. For those with low self-esteem, boundaries can often be weak and the more we allow others to cross them, the more out of control we can feel. Developing boundaries is not only healthy for us but is essential for healthy relationships.
Challenge negative beliefs
We can often adopt negative ‘core’ beliefs about ourselves. These can rear their ugly heads in times of hardship and illness. When challenged, these beliefs are rarely true but because they have been there since early life, we often don’t even realise we have them. When we view our life through the lens of a negative belief, we will see mostly negative outcomes. Happily, these beliefs can be challenged and changed for new, more helpful ones which in turn will begin to build self-esteem.
Check back on the MS-UK blog next Thursday to read the final instalment of this three-part blog series. Click here to read the first instalment if you missed it.
MS-UK Counsellor Louise Willis discusses how MS can affect your self-esteem and how you can make improvements in the first of three blogs
What is Self Esteem?
How we feel about and perceive ourselves is often termed as our ‘self-esteem’.
As the psychologist and once close friend of Sigmund Freud, Carl Jung once said; ‘the most terrifying thing is to accept oneself completely’. This is often at the heart of why some of us can find it incredibly difficult to hold ourselves in the same high regard that we do others.
Far from being a stable idea of a sense of self, our self-esteem can be fragile and mercurial by nature, a reaction to our perceived successes and failures. How we view ourselves is an often intangible feeling that has its roots firmly planted in our past experiences and early life.
For some, when self-esteem is unconsciously associated with a particular role that we play or physical or mental attribute, finding ourselves with a chronic illness which can affect this part of our identity can have a huge impact on our sense of self-worth. By putting a value on the part of our being which we believe to have been compromised while ignoring the rest of our attributes, our sense of self or self-esteem can be hugely rocked.
Self-esteem can be knocked or damaged at any point in our lives, from our first beliefs about who we are and what we mean to others and our place in the world to the loss of a partner or an illness in old age.
What can we do about it?
Understanding and accepting that we as humans are never going to be ‘perfect’ is always the first step, but there are some tips that can help us to understand the process of regaining a feeling of self-worth and to build some new strong and healthy self-esteem building habits. These tips are all backed by scientific studies centered on neuroplasticity which is the fancy term for our amazing brain's ability to adapt and change. It is now widely accepted that the brain’s capacity for regeneration and growth never stops no matter our age, so there really is no excuse!
In the next instalment of this three-part blog series we will look into helpful tips to start you on your way to feeling better about yourself.
Far from being a substitute for therapy, mental health apps have gained a place in today’s culture of wanting help here and now. They are often seen as an adjunct to counselling and an introduction or a ‘step in the right direction’. People with multiple sclerosis (MS) can experience a range of issues and may not be ready to engage with counselling, but still require a level of help, here is where apps can come into their own. We asked MS-UK Counsellor Louise Willis for some of the best tried and tested apps on the market.
Possibly one of the most popular apps for mindfulness. It offers 10 free sessions that you can use over and over. If you wish to continue and progress with your mindfulness practice there is a one-year membership for £70, giving you access to hundreds of themed, guided meditations and mindfulness exercises although they often have price reduction offers.
A great free app from Mind, the mental health charity. This app features a ‘news feed’ style interactive main page where you can comment, read, or share your own thoughts and feelings with other like-minded users. There is also a private message facility.
This free app is chock full of tools to enable you to manage anxiety and calm an anxious mind and body, as well as objective help and advice on subjects such as anger, depression, self-esteem and stress. There is also an area to keep track of moods and new habits as you make them.
‘Check in with yourself’ with this comprehensive app from Oz, which enables you to track your mood along with hundreds of targeted mindfulness practices for young and old alike. Oh yes, and it’s free!
If interacting with humans is not your thing, MyPossibleSelf might be for you. Bloopy the assistant bot guides you through a free, and rather in depth eight week cognitive behavioral therapy based course. MyPossibleSelf offers the potential to help you work through your issues in the format of a text conversation.
This AI driven app has the option to subscribe and unlock a wealth of personalised mindfulness exercises. From improving mood to lessening anxiety, Aura’s narrators have a dignified sense of calm and the app has an outstanding amount of choice in the paid version.
Another great mindfulness app which you can access both paid and unpaid. A vast amount of exercises and options to choose from for all levels of ability. There is also a handy sound setting option where you can adjust the background volume or turn it off if you prefer.
This app is aimed at Young adults, older teens or anyone new to managing their anxiety. Using a comprehensive mix of CBT tools and interventions to retrain the mind, there is also a space to log the new changes and to do behavioural and mind ‘experiments’.
Endorsed by the NHS, this free app promises to be a helpfully concise addition to the mental health app scene. It gives the user the opportunity to log their mood, check the mood and ultimately change their mood. There are options for depression, anxiety, anger, relaxation, confusion and happiness using CBT.
Action For Happiness
If you can’t commit to either the investment of time or cash, Action For Happiness may be for you. It offers a ‘newsfeed’ of positive affirmations, memes and scientifically proven small daily tasks to improve your mood and sense of well being. There is also a ‘comment’ section under each post to share your successes with other users!
A very gentle free app for everyone. The app focuses on a game in which you navigate a panda around a virtual world. The app uses your phone's camera to take your heart rate, and with both breathing and yoga stretching and gentle exercise, this simple app really does live up to its name.
This week, 13-19 May, is Mental Health Awareness week. People affected by MS can often experience associating effects on their mental health too. Sometimes it can be difficult to understand what somebody means when they talk about mental health issues, and this is why Mental Health Awareness week exists. They aim to make discussions of mental health clearer and a foundation stronger support networks. By supporting Mental Health Awareness week, we can pave the way for greater openness when it comes to mental health, and strive to help those that are further affected by other conditions too.
We can all experience guilt, like any other emotion within our daily lives. Some people experience it occasionally, whilst others may experience it more frequently. Guilt can be a difficult emotion to identify and can often be disguised by feelings of anger or resentment. The feeling can often rear its head when we identify and perceive we have caused ourselves or somebody else a wrongdoing or harm. Guilt can leave us feeling pretty rubbish!
People living with a long-term health condition can experience the grieving process, which is not linked to the death of a loved one. Guilt can be a part of the grieving process where the person is seeking to try and find the answers to their questions of why something is happening to them and the impact that has on others.
People living with MS may experience this feeling for a number of reasons, some of which are discussed below
Most people will experience feelings of guilt at some point in their life. However, if you notice that you are constantly apologising to yourself or others this could be a telling sign that you may be experiencing feelings of guilt. Communication is key to challenging these feelings. Communicating with somebody you trust such as a family member, friend, colleague or health professional can help you to start alleviating these feelings.
If we do not recognise and process feelings of guilt this can potentially affect our mental health and wellbeing. Sometimes people may want to talk with an experienced mental health professional about their feelings of guilt in a safe, supportive and non-judgemental setting. This could be through:
Counselling or Cognitive Behavioural Therapy (CBT)
This can provide space for the person to explore and examine their thoughts and feelings. Counselling can help the person identify new ways of thinking and behaving which can improve the way they feel.
Relationship or family therapy
The whole family may want to access counselling. This may help family members understand when it might be MS that they perceive to be the ‘problem’ or ‘worry’ and when it is something else.
Mindfulness and meditation
Can help the person to be aware of the present moment where they can calmly recognise and accept their thoughts, feelings and bodily sensations without judgement. This can be a very powerful tool in helping to alleviate feelings of guilt.
You may have read this article and relate to some of what was shared. Others may be thinking that it isn’t relevant at all. As individuals we respond differently to feelings of guilt but what is important to remember is that one of the best ways to cope with feelings of guilt is to try and be as compassionate towards yourself as you would be to somebody else.
This extract was taken from issue 113 of New Pathways magazine, the MS magazine for people with MS, by people with MS.
I wanted to invite you to complete our survey which launched today about loneliness and isolation.
Last year we consulted with the MS community to inform the development of our new strategy. The most talked about gap for people affected by multiple sclerosis (MS) across the UK was appropriate support to tackle loneliness and isolation. We were told that there was simply not enough support to overcome the barriers contributing toward their isolation and not enough available to help them feel a part of something, connected to the world and less lonely.
We are now beginning to look at this area and we would like to understand this issue a bit more. The voices of people affected by multiple sclerosis inform all our work and this insight is incredibly valuable as it brings us perspectives that no one else can give. I hope you will take five minutes to complete this short survey and help us stay on course to provide people affected by MS not only with what they want from us, but crucially, how they want it.
The topics of loneliness and isolation can be difficult to deal with at times, so if you would like any support at all please get in touch with our helpline. You can email the helpline, call us on 0800 783 0518 or connect with us online.
Thank you so much for your contribution,
Head of Services
Issue 114 of New Pathways magazine is out now. In this jam-packed edition, we take a look at the recent changes that could affect those of you who take CBD oil, on page 12. We also ask ourselves “Am I having a relapse?” Whether you’re newly diagnosed or have been living with MS for years, there will come a time when you will ask yourself this question, to find out more turn to page 39.
Page 21 offers some helpful advice to those who have found themselves caring for a friend or loved one and don’t know where to start when it comes to finding support.
Louise Willis MS-UK Counsellor talks about managing fatigue and how spoon theory can help you manage and explain it to others on page 28.
MSer and feature writer Ian Cook investigates if magnets can help multiple sclerosis in Cook’s Report Revisited on page 19.
Mary Wilson, #5 Para-Badminton player in the world, reveals her hopes of representing Team GB in Tokyo 2020 Paralympics on page 24, and discover how music therapy could help your MS on page 23.
In addition, don’t forget to read all the latest news and real life stories from MSers living life to the full and why not give our tasty free recipe a try!
About New Pathways
New Pathways magazine is a truly community led publication written by people with MS for people with MS. Each issue offers a variety of information on drugs, complementary therapies and symptom management, plus all the latest news and research and your amazing real life stories.
To subscribe, visit www.ms-uk.org/NewPathways, or call 0800 783 0518. Audio, plain text and digital versions of the magazine are available on request, simply call 01206 226500 and let us know your requirements.
In January 2016 I had a very frightening experience when my eyesight in one eye deteriorated quite quickly to the extent that I wasn't able to continue my work as a dentist. Over the next year and numerous tests I was no further forward and my eye made some recovery. Following a second episode with my other eye in 2017 I had further scans and a lumbar puncture which finally led to the diagnosis of RRMS or relapsing remitting multiple sclerosis.
I started to learn about treatments, being a medic I was sure I would follow the disease modifying therapies (DMTs) or daily injections of immunosuppressants, but I was encouraged to try another approach. My own GP put me in touch with a friend of hers who had been managing his own MS through diet and exercise, Alan Caldwell. Alan was a great inspiration to me and when I first met him he had just successfully completed the Virgin Money London Marathon running for MS-UK. This was exactly what I needed to hear at this time, I was in shock with an MS diagnosis and scared for the future. As we know no one can yet predict the outcome of your MS and indeed, it affects everyone differently, so to know that Alan was doing so well following the Best Bet Diet, an exercise regime and supplements meant I was going to look at all this first.
I embarked on the Best Bet Diet which I thought would be so difficult at first, particularly cutting out all dairy and gluten but I did it and haven’t looked back. My neurology team have also been supportive of my choices which again is encouraging.
During all the uncertainty with my health and before I had received an MS diagnosis I decided to start running. I joined local Five Star Active group based in Auchterarder and puffed and panted my way through 2 minute runs!! I was a complete beginner and whilst an outdoorsy type I had never run before. I remember the elation I felt when eventually running one dark Friday night we realised we had run for 12 minutes non-stop!!
From there I ran a 5k then a 10k. With news in December 2017 that I may be facing MS I decided to sign up for a Half Marathon as I was terrified if I didn't do it then it may never happen. So in May 2018 a month after my confirmed diagnosis I proudly completed Loch Leven Half in 2 hrs 17 minutes.
During the rest of 2018 I tried to keep my miles up and my fitness level as I started to come to terms with having this chronic disease. I was learning (and still am) when to push my body, and when to rest, how to fuel and which foods keep me healthy.
I had dark days and towards the end of 2018 my GP suggested I needed some counselling which I have received both privately and from MS-UK. The services MS-UK provide have been a source of great help for me so I am therefore delighted to be able to raise funds for MS-UK.
I was dubious about entering the Virgin Money London Marathon as I was concerned it may be too much for my MS but I have gone from strength to strength over the last year, I don't know what the future holds, none of us do, but I run and keep as healthy as possible and stay in the moment as much as possible.
In January several of my running club buddies were starting their training for the London Marathon, we have nine from our club heading south for the run, and I thought if I’m going to do it, it’s now or never. I sent a message to Jenny at MS-UK to find out if there was a chance my waiting list place would come up and after a very excitable phone call, she offered me a place.
If I had a doubt about the marathon it was dispelled that day with my overwhelming excitement about it and also how delighted my friends, family and running buddies were too.
The training is so far on track, we have a wonderful coach who has put a great programme together for me. She knows about my MS and together we monitor it, she insists on two days rest after my long run and I never run consecutive days. Having other running buddies makes it easier to motivate yourself and the MS-UK runners have also been great, we interact in a Facebook group and follow each other on Strava.
I have some fundraising events planned but most of my target has been met from my initial post on Facebook sharing my story and my JustGiving page. I was overwhelmed by the amount of support I received. Many people did not know what I was going through and the messages I received when I finally told the world gave me a huge boost.
I am excited for London and delighted to be part of Team Purple, see you at the finish!!
Find out all about fundraising and becoming part of #TeamPurple on our website today!
I am proud to let you know we have recently been accredited with the Workplace Wellbeing Charter, an award which recognises that we strive to make MS-UK a great place to work.
Completing the Workplace Wellbeing Charter is about more than just ticking boxes. It is making a real commitment to the health and wellbeing of our employees and the accreditation standard that is built on best practice, the latest research and business sense. As a national health charity, wellbeing is really important to us on so many levels and that includes the wellbeing of our staff and volunteers, so it means a lot to us to achieve this.
The Workplace Wellbeing Charter have made a short film about MS-UK, which you can now watch on our YouTube channel or below.
Thank you to all the MS-UK staff who make working here such a positive experience!