Last year I went along to the Swim Serpentine to cheer on our amazing supporters as they took part - I was blown away. The festival atmosphere and the fantastic efforts of all the swimmers really inspired me.
As a rule, I'm not one for sporting activities. Last time I did some fundraising for MS-UK I sat in a bath of baked beans - it didn't exactly need high levels of fitness! But that was some years ago and I felt it was time for a new challenge so I decided to take on the Swim Serpentine this year. As I work at MS-UK, I know that every penny makes a real difference to people affected by multiple sclerosis (MS). I also get to meet people affected by this condition in lots of different ways and I am always so in awe of people who live life to the full with MS. It feels great to give something back by fundraising, but also it feels great personally to take on something new.
However, it's not all plain sailing when you take the plunge, so here are my top tips for new open water swimmers...
There are so many more tips that other swimmers could share, but here's my top five. For everyone taking on the Swim Serpentine this year, good luck and I will see you there.
Just keep swimming!
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
Myself and two close friends completed the Action Peak District Challenge, a run covering 100 Kilometres (62.5 miles) 2450 metres of elevation (Ben Nevis is 1,354m). The route took us through a tough and varied figure of eight loop around Peak District National Park. With none of us having attempted a challenge anywhere near this distance, we were entering completely uncharted territory. However,18 hours 17 minutes and 41 seconds after departing Bakewell showground we crossed the finish line. Out of a field of over 600 runners, 508 completed the continuous challenge, we ended up finishing 68th.
My Mum and Uncle were diagnosed over 10 years ago and over this time I have watched how horrible multiple sclerosis (MS) can be. Over that time the treatments have got much better however the unpredictably of symptoms occurring has remained. When deciding to use this challenge to fundraise my first thought was to find a charity that helps people with MS.
Before this challenge I had never ran more than 15 miles. I had no idea how to train to run over 4 times that, and working away from home made training difficult at times. Before the challenge started I knew it was going to be more of a mental battle than a physical one, to mute that little voice telling you to give up.
Having completed the first 52Km with no major problems and feeling confident we headed off after grabbing some lunch feeling really optimistic. Almost immediately after setting off I hit my biggest obstacle. At the 54Km mark whilst descending a steep hill, I started to feel a shooting pain in my left knee, which as the miles went on got worse and worse. The pain and discomfort escalated and became a gruelling mental battle to carry on and at a prolonged slower pace. Dealing with the frustration of not being able to run and watching as people we had overtaken hours ago now overtaking us was hard to take, we had out worked them and a freak injury meant they were now in front. At the time it seemed very unfair. At that point I also felt a massive burden to the other two guys who could of carried on running. However later they too came up against their own injuries which together we worked through.
This was my first time fundraising. I have learnt a lot of lessons. Everything revolves around social media, get posts out often, start fundraising well in advance, Have information for how to donate on you at all times to give people, lots of times in conversation people expressed an interest in donating but I didn’t have the link at hand to give them.
I attempted this challenge predominantly for selfish reasons – I wanted to know if I could do it, if I could raise some money for a good cause at the same time that was a bonus. However the lessons I have learnt from the experience are far more than that of physical endurance.
The key take away lesson from this experience for me was that we always have more in the tank than we think, and it is often the support given from others which allowed us to see it. Me, Louis and Ryan were able to achieve as a collective something that would of been beyond us as individuals. And I think that really underpins the importance of the work done by charities like MS-UK, because that support really does make a monumental difference in what we can all achieve.
Get in touch! Call Lucy on 01206 226500 or email Lucy today.
Longstanding volunteer Nigel Watts has been recognised for his contribution volunteering for MS-UK.
Room to Reward, a unique charity created to give something back to those volunteers who do so much for so many, selected Nigel as the recipient of an overnight hotel stay of his choice.
Room to Reward enables registered charities to give something back to inspirational individuals with a well-earned break at no cost to themselves.
The charity partners with hotels across the UK who donate their anticipated unsold rooms to the scheme. Charities are then invited to nominate their Hidden Heroes for a one or two night, bed and breakfast, complimentary break to enjoy with a friend or loved one.
MS-UK General Manager, Sarah Wright, said: “On behalf of MS-UK I would like to thank Nigel for volunteering with us. He has volunteered in multiple departments across the charity, completed set tasks to a high standard and is always willing to help. He really has helped us make a real difference to people affected by multiple sclerosis.”
At a presentation, which took place at MS-UK’s wellness centre Josephs Court, Nigel said: “I’m surprised and pleased that an exterior body had recognised my volunteering efforts. The reward will come in useful when my wife, son and I go visiting my daughter and grandsons, as I have to stay in a hotel nearby for accessibility reasons.”
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.
Hi, my name is Nicky Sawyer I am 53 years old. I became aware of multiple sclerosis (MS) when I was a carer in my community as several of my service-users had MS. Each service user was completely different and they all had different stages of MS.
In 2013, my daughter Sam was diagnosed with MS and she had been having symptoms since 2011, obviously we were all devastated! Sam had her son in 2012 and although has her difficult days, she does everything for him.
Four years ago when ‘brave the shave’ was starting to really take off for women, I decided to take the plunge and shave my head, and I raised £2,500 for the MS Society!
I’ve said on many occasions that it was time I did something to raise money for MS again, and even suggested Sam and I did a skydive, but Sam wasn’t so keen on this idea! Instead, Sam asked if I fancied doing the walk over the O2. ‘Why not?’ Was my reply, but let’s raise some money! And this time we chose to raise money for MS-UK.
So with only two and a half weeks to go, I asked my friends and the customers at work to help me raise some money. Soon enough the total started to mount up! I had been sponsored for £285.50 by the time we did the walk. However whilst doing it we were approached by a lovely lady and said she would like to donate to MS-UK, she gave me £10! So I donated £5 myself to round up the figure.
Sam still doesn’t want to do the sky-dive, but I will be next year with my son, so watch this space!
I would like to thank Lucy from MS-UK for all her support and I look forward to working with her on my skydive challenge next year, and to everyone that supported me and Sam on this journey!
If you want to do something different like Nicky and Sam did, email Lucy at MS-UK or give us a call on 01206 226500 to get some information and support along your journey!
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.
With MS-UK being CBW’s Charity of the Year, we got a team together to do a 100 mile bike ride on Saturday 29 June (the hottest day of the year).
The ride was completed (by most) on Saturday.
After months of hard training (or days in my case!) the day was finally upon us. Turned out to be the hottest June day since the 70s. Temperatures predicted to be about 33°C. We had a team of seven colleagues and were joined by two clients as well.
Everyone had arrived by 7:00 ready for their bacon sandwich from Leman Café who kindly opened up just for us. Nine clueless individuals set off at 7:40am heading west in the general direction of Reading. Taking the cycle superhighway from the office to our first landmark, the Houses of Parliament. I looked at my watch tracking the distance and time and we had clocked up the first three miles. I thought to myself, this is easy. In jovial spirits we started to head out of the city passing Craven Cottage (the home of Fulham FC), through Chelsea and eventually crossing Putney Bridge. Seven miles down and no issues.
First Stop – Richmond Park (8:45am). First toilet and refreshment break. After the short stop we set off, with our sights set on the next part of the trip. The tunes went on. Listening to some classics such as Ebeneezer Goode, Rhythm is a Dancer etc. the team got in their Rhythm until the sat nav took us off road. We went wrong somehow, somewhere.
We followed the Thames path towards Hounslow. Things were going nice and smoothly setting a good pace along flat roads passing Heathrow, through Staines (we saw some great towns!) and on to Runnymede, our second stop. 22 miles down and the heat was increasing. It was 31°C and refreshments were needed.
Final Stop - The George pub, in the suburbs of Reading. The clock had clicked over 50 miles, we had finished the outward bound journey, completing it in 4:43 (riding time 4 hours) and it was time to stop for a well earned lunch. We dived straight in the pub asking for menus and it was quite an easy choice. Seven Ham, Egg and Chips, a Chicken Burger and the vegetarian option with nine cokes. Checking the thermometer in the pub garden, it was showing 38°C!!!
The finish line ended up being Westminster after a few wrong turns throughout the day had meant that 100 miles was clocked up before getting back to the office.
During the journey back we sadly had three people that had to drop out due to the heat and dehydration.
MS-UK has been very supportive during the build up to the ride and gave plenty of tips which really helped organising. At the end we raised just over £2,500. It was a great day with a great team. We are looking at our next ride soon (hopefully on a cooler day).
Every penny raised by Tijmen and his team at CBW helps us support even more people affected by multiple sclerosis (MS). Get in touch with the fundraising team today to find out more about getting involved!
Professor Dawn Langdon asks for your help to tackle MS cognition
Many people with multiple sclerosis (MS) experience cognitive difficulties; poor concentration, trouble remembering, some call it “cog fog”. We know quite a bit about how these difficulties play out on formal tests that psychologists use. But we are less good at understanding the experience of people with MS with cognitive difficulties.
There are a number of questionnaires that report cognitive difficulties that have been designed for people with MS, and others which have been suggested that might be useful for people with MS. The point is that it will probably never be possible for every person with MS to be offered a cognitive assessment. Some of us are working towards making this happen (researchoutreach.org/articles/bicams-cognition-multiple-sclerosis). But we have to be realistic about the current situation.
We are trying to find a questionnaire that a person with MS could fill in, which could tell any health professional something useful about that person’s experience of their cognition. This could help the nurse or doctor present health information in a helpful way. It could flag up cognitive difficulties to health professionals and trigger them to monitor the additional risks that cognitive difficulties bring (poor disease management, including medication adherence; increased risk of falls and driving accidents; decreased involvement in life generally, including employment difficulties). I don’t want to sound too gloomy here. But if we are to make progress we have to have information. This is our ammunition in the fight for better services.
Take the survey
If you would like to help, are a person with MS and can spare 30 minutes, please fill in our online survey.
Also please pass this on to anyone else that you think might be interested.
This study is the MSc Clinical Psychology thesis project for two students at Royal Holloway, University of London, where I work. Their names are Tabby Mahoney and Nathalia Bosoko.
If you would like more information about cognition and MS, you could visit the MS Trust’s website www.stayingsmart.org.uk.
You could also look at the books by Jeffrey Gingold, who is an expert MS patient advocate:
These are available on Amazon and some of the profits go to MS charities.
Jeffrey has also recently done a Webinar, “Facing and Manging the Cognitive Challenges of MS”, which you can watch on YouTube.
How to get involved
If you have any questions about the survey or would like to help us with our work on cognition in MS, please get in touch (firstname.lastname@example.org). I have to ask for your understanding, because this is a busy few weeks in the university, and it might take me a week to get back to you.
So just a bit about me, my name is Maddy, I’m 16 years old and decided to do a 13,000 feet skydive for MS-UK! I completed this on 24 June 2019 and it was one of the most amazing experiences of my life (even if it was very scary).
The reason I chose to do this was because back in October 2015 my mum was diagnosed with multiple sclerosis (MS) and therefore I have witnessed how cruel the condition can be and wanted to support those living with the same thing. I have also been volunteering for the charity for a while and have seen how caring the MS-UK staff are and after being given the skydive as a birthday present I saw it as a perfect way to give back to MS-UK.
Before, I would have never have dreamed of doing a skydive but I'm so pleased that I did. Not only did the skydive raise £600 for MS-UK, it was also an amazing opportunity to face my fears because life is too short!!
Get in touch with Lucy at MS-UK on 01206 226500 or email Lucy today to find out more about skydiving in aid of MS-UK!