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!
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.
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 Chorlton 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.
Blogger Martin Baum was invited to an event at the House of Commons recently to launch a campaign. Here is his story of his experience...
In an age where blogging is a symbol of 21st century communication, the aim is as much for a blog to be read as it is to be written. As a multiple sclerosis (MS) blogger for various MS-related organisations I am no exception as I continue to try to engage with a loyal and growing readership.
As a writer I enjoy what I do very much but just like having MS it’s a lonely existence. However, sometimes, the unexpected does happen. I recently received an invitation from a charity called Overcoming MS (OMS) to attend a reception they were hosting at the House of Commons.
It was to launch a new campaign video giving everyone living with MS hope of recovery and it was not something I was going to pass up. The reception was sponsored by Stephen Lloyd MP and held in the Strangers Dining Room.
The person behind the promise of living a life free from MS was Professor George Jelinek, an Australian who devised the OMS seven-step recovery program which has enabled him to remain symptom free for 20 years. In truth, however, I was sceptical. Ever since beta interferons failed to sustain the promise of being the cure, I have become naturally wary of anything being promoted as such.
On reading more about Professor Jelinek’s regime prior to my trip to Westminster, it occurred to me my own lifestyle was already accommodating much of what he was advocating. The seven-step program is about following a strict curriculum of diet, sun, vitamin D, exercise, meditation, mindfulness, approved modifying medication, helping to prevent family members from getting MS, and changing a lifestyle for a healthier one.
Whilst I am not vegan I eat very little meat, preferring fish instead. I meditate regularly for ten minutes a day, I exercise as much as I am able to and enjoy the benefits of mindfulness. Most of all, I’ve been changing my lifestyle for a healthier one for several years which means, should I ever want to fully engage with the program, I’m only a couple of steps shy.
That afternoon I met many MSers sharing a happy disposition to be living with the condition because their symptoms were no longer an issue. Many claimed their lesions had been repelled and that they were now leading happier MS-free lives as a result of following OMS.
Throughout the afternoon I mingled with many inspirational people. Just like any of us, neither MPs nor nobility are immune from being touched by MS because they have family and friends affected by it. Stephen Lloyd’s reason for being there was because he had a constituent who had MS who also follows the OMS approach. That was reason enough for him to sponsor the event.
As the afternoon ended and I parted from some truly inspiring people, I was left feeling that the OMS seven-step recovery program had already succeeded in helping many people. But then my thoughts turned to those who weren’t but might have benefited if they had.
Having MS is a game of patience. We bide our time in what often feels like an isolated existence, waiting for a more traditional breakthrough in the quest to find a cure for the condition. I’m left feeling that more MSers should at least try something like the OMS approach that’s as near to organic as it gets.
I was first diagnosed with multiple sclerosis (MS) in 2010 and was pretty much directed to use the services of the MS Society by the NHS Neurology department. Their help was very much appreciated at the time as MS was all new for me.
Now, although I still have a lot of respect for the work and the people of the MS Society, I find that I want a more active life than their local members seemed to have. I wanted ‘To live life to the full’, which is pretty much MS-UK’s slogan - as I was about to find out.
I discovered MS-UK by chance while searching the web for more information on MS and as luck would have it, their head office just happened to be down the road at the Hythe in Colchester - another big plus in their favour from my point of view as transport could become a problem in the future.
The MS-UK premises boasts a fully-equipped wellness centre for people with MS and other neurological conditions, and I began using the specialist facilities (mainly exercise bikes) under the guidance of their wellness coach, Allan Pearson. The exercise helps prevent muscle problems that would otherwise occur with lack of use, as well as helping my brain to keep active.
Another benefit of attending the MS-UK gym is that it also promotes friendship with fellow MSers, although each person’s symptoms are unique to them.
The camaraderie with other MSers is further enhanced with regular events, coffee mornings, 10-pin bowling and other get-togethers, as well as with special opportunities, such as marathons, sponsored skydiving and aeroplane wing-walking!
There always seems to be something happening somewhere with an MS-UK logo on it as a way to raise money for the charity.
Additionally, MS-UK has a helpline staffed by fully qualified people, with direct experience of MS, offering strictly confidential on any subject over the phone.
MS-UK also hosts information sessions on different topics and invites companies and charities offering specific help on that topic, recently Age Concern and Mobility came in to offer information.
Fundraising for MS-UK’
With all this wealth of MS-related help practically on my doorstep, what’s not going to make me want to raise a few pounds to help MS-UK, which also gives me some purpose in life and is very important to me.
Up until my diagnosis with MS, I was an active bass guitarist in a few bands playing anything from Jazz to Blues to Pop. None of these bands you’ll have heard of but it was a passion of mine for over 25 years. This is what started the making of Virtuosity in aid of MS-UK.
Although I can no longer play the guitar myself, the one thing that MS will never take away from me is my passion for quality music. Promoting live music events wouldn’t be too time-constrained either, so I could take my time to set up live performances and make use of my experience and contacts in the industry.
Could this be the fundraising opportunity that I was looking for? I had to try it to find out.
In 2017, I decided to set about organising my first live music event and called it ‘Virtuosity in aid of MS-UK’ as it featured three of the best musicians that I’d ever played with: Chris Allard, Ramon Goose and Daryl Kellie. It took place at Colchester Arts Centre, whose director has a disabled daughter and therefore some empathy with the MS-UK cause. I donated all the profits to MS-UK as a thank you for their services to me in the past.
The following year, I discovered an Australian musician on social media called Geoff Achison and was pleased to find out that he had a tour of the UK lined up with some session musicians from West London that I had been fortunate enough to jam with in the past. I had no hesitation in booking Geoff Achison and the Souldiggers, with support from the very talented and once local solo blues guitarist Martin McNeill. As this was likely to be a major gig, I also got the audio-visual department at Colchester Institute involved to come and make a video of the performance, which they were pleased to do as part of their project work.
While keeping my eyes open for exciting new acts, at the beginning of 2019, I came across the incredible voice of a young lady named Helen Connelly.
‘That’s someone I’ve got to promote in another Virtuosity event’ - I thought!
The only problem was that Helen’s regular guitarist wasn’t available for the date I had in mind at Wivenhoe Bowls Club (a new local venue that I also wanted to promote) but, not to be put off, I asked my old friend and jazz guitarist Chris Allard if he would step in to help out. To complete the evening’s entertainment, I enlisted the services of Polly Haynes, a local singer/songwriter and a fantastic performer in her own right.
Lessons learned and overall satisfaction
It would be fair to say that I ran into a few problems along the way that I’ve needed help from MS-UK and others with. Everyone has to learn from their experience though, and each day with MS is a new experience to learn from.
The overall satisfaction that I’ve had from putting on these events and finally accepting the MS-UK certificate of fundraising for all my hard work has made it all well worth the effort.
Unfortunately, one of my MS symptoms was paraesthesia of the lower arms and hands, taking away the use of my fingers for manual work and stopping me playing the guitar completely. This was accompanied by other MS symptoms of chronic fatigue, poor memory and cognitive problems, which meant that whatever I did would take a lot longer to achieve than for a normal person, but I did it!
Andy raised £158.32 from his latest Virtuosity event for MS-UK – Thank you, Andy!
Danny Holland, one of our clients at our wellness centre, Josephs Court, has helped MS-UK year on year since 2016 with a sponsored head and beard shave to raise money to help people affected by multiple sclerosis (MS).
‘This is something simple I can do to, at the very least, to help raise money for my charity.’
‘I myself have MS so I can understand how much pain and discomfort others are going through. That's why I want to help them by raising money for MS-UK and by doing so, it gives me a great feeling of happiness.’
‘I participate in the hair and beard shaving challenge to raise money and I also have a very close friend of mine who helps in collecting the money.’
Danny raised £112.38 this year, bringing his grand total raised so far up to £396.72! This money helps us to run Josephs Court, which supports people with MS to maintain their wellbeing and live independently.
If you would like to raise money for MS-UK our dedicated fundraising team are always on hand to help. We have had people raise money in lots of different ways, from sitting in a tub of baked beans to skydiving! Simply call Lucy on 01206 226500 or email firstname.lastname@example.org.