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.”
The countries with the highest population of people affected by multiple sclerosis (MS) are located in the northern hemisphere, where sunlight levels can be very low in winter, for example, Scotland. This is often associated with the body not producing enough vitamin D. So, today’s blog is going to look into some facts that you might not have known about ‘the sunshine vitamin’…
1. Sunscreen can reduce vitamin D intake
Although it is important to protect your skin in the sun, sunscreen can block out the suns ultra-violet (UVB) rays, which can lower your potential intake of vitamin D. This means that it may take you longer to reach your daily intake.
It's not known exactly how much time is needed in the sun to make enough vitamin D to meet the body's requirements. This is because there are a number of factors that can affect how vitamin D is made, such as your skin colour or how much skin you have exposed.
But according to the NHS website you should be careful not to burn in the sun and take care to cover up or protect your skin with sunscreen before your skin starts to turn red or burn.
2. We don’t get enough of it
It has been widely reported that approximately 1 billion people worldwide are vitamin D deficient or insufficient, that’s around 15% of the world’s population. However, when we compare this to reports of UK vitamin D levels, it’s much higher here. According to this data, 74% of UK adults over 25 have lower levels than they should. That’s quite a difference! So next time the sun is shining, make sure you’re heading outside for some vitamin D!
3. It helps build strong bones
Vitamin D is vital for our calcium intake, which of course is paramount for strong bones. Lack of vitamin D can lead to rickets in children or osteoporosis in adults, which is essentially the weakening of bones.
4. Intake is affected by skin tone
Strangely, pale skin tones absorb more vitamin D from less sunlight than other skin tones. The natural pigment melanin in darker skin tones means it requires more exposure to the sun in order to get the right intake. It has been said that those with darker skin tones need up to 3-6 times more exposure than those with pale skin.
5. You don’t have to get it from the sun
It’s widely believed that you can only get vitamin D from the sun, but you can get it in your diet as well. For Inuit’s who practically live with next to no sunlight, they eat food such as oily fish which is very rich in the sunshine vitamin. So you don’t necessarily need the sun to get your levels up!
Want more information about Vitamin D or other supplements?
Order a free copy of our Diet and Supplement’s Choices booklet today using our quick online order form.
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!
Last year, MS-UK launched its first ever corporate fundraising challenge. Dubbed the 925 Challenge (only very slightly inspired by the Dolly Parton hit, ‘9 to 5’), we invited local businesses to try and raise at least £925 in nine weeks, two days and five hours.
It proved to be a huge success. Teams from Ellisons Solicitors, Charles Derby Financial Services, Harp Commercial Interiors, Whitehall Electrical, Team Pivotal, Push Energy, The White Hart, OPM Response and Direct Solutions, all entered into the spirit of healthy competition and let their creative side run wild on their quest to beat the countdown clock!
The 925 Challenge returns in September and this time it’s going national! We are on the hunt for ambitious companies from every corner of the country who want to gather work colleagues together for the ultimate test of teamwork and outside the box thinking.
There’s no right or wrong way in which teams can raise the golden £925. Plan to raise funds by sponsoring the construction of a giant pyramid of cards? Go for it. Fancy hosting a slinky race? A little strange, but be our guest. Whatever shape the masterplan takes, your fundraising efforts will inspire camaraderie, raise the public profile of your company and potentially bring your local community together.
The challenge is set to launch on Thursday 12 September 2019. Then, nine weeks, two days and five hours after the first second ticks over – Saturday 16 November to be precise - the countdown clocks will be stopped!
Which team will prove to be the most innovative or imaginative? Who can showcase what it means to be a true team? Prizes to answer these questions and more will be handed out at an awards evening held on Thursday 28 November.
On Sunday we had 30 people take on the ASICS London 10k in the bright and sunny London for MS-UK. Congratulations and thank you to all those that ran and came along to cheer and support, it goes so far in helping those affected by multiple sclerosis (MS) to live happier and healthier lives.
Part of our 30 racers was a running group from Berkshire, who was organised by a cherished long-term fundraiser who is affected by MS herself. Alongside many people who have taken part in the Asics London 10k previously, as they enjoyed it so much before!
Our team have been hosting their own events to help fundraise for this day, ranging from a gin tasting night, to a boot camp and even a rock and roll bingo night!
We had a very enthusiastic cheer point of volunteers who came along to support #TeamPurple at this event in London, most of who had either volunteered before or had taken part in our other events. We are so immensely grateful for this support and just can’t do these events without you, so we wanted to give a massive thank you!
Here is what Chris and Fran Setterfield, two of our amazing volunteers, had to say about the day…
'We love supporting our runners at the cheer points. Seeing the unexpected smiles on their faces when they suddenly hear their names being called out means so much to them! We know how important this is, having been at the receiving end!'
Deb Wald, who ran the race itself, said 'I’m so happy to have taken part and done it again for MS-UK, there’s a continuity with them that’s very motivating.'
Places are still available in the Royal Parks Half Marathon!
Email Jenny today to find out more or call us on 01206 226500!
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 (email@example.com). 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.