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600 length milestone!

Posted on: December 23 2019

Laura's swimming blog -Dad_0.jpgBack in October 2019 Laura launched her swimming challenge. She decided to swim 80km in memory of her dad. Now having reached the 10-week mark she has written this blog to update us on her progress 

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!

 

Supporting our local foodbank

Posted on: December 20 2019

Photo of Laura May from MS-UKHello,

Every year at MS-UK we get into the Christmas spirit with a team lunch and Secret Santa. It's a great time to come together and reflect on the past year. 

This year we decided at MS-UK to do something in our local community too - so we organised a food bank donation. Over the weeks tins and essentials kept piling up beside my desk and I kept thinking, this must be it? But no, our lovely staff kept giving and I was absolutely thrilled to be able to deliver 36.2 kilograms of items to our local foodbank in Colchester earlier this week!

Over 90% of the food distributed by foodbanks in The Trussell Trust network is donated by the public – everyone referred to them is offered a balanced and nutritious three day supply of food.

Image of food at the foodbank

You can find out more about them on their website. When I went along to drop off our donation the staff were really helpful and were thrilled we had pulled together to do something in our area!

You can find out more about the Colchester Foodbank on their website.

A big thank you to all the staff at MS-UK for getting involved - hopefully we have begun a new tradition!

Laura

Communications Manager

Uncertainty and MS

Posted on: December 16 2019

Uncertainty post.pngMS-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.

 

Why I am a MS-UK Community Champion!

Posted on: December 16 2019

Heather Swan.jpgMy 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!

Fundraiser of the Month: “I said I wouldn’t run another half marathon…”

Posted on: December 16 2019

Grandad.jpgWhen you think you won't get the fundraising bug and you do... Lauren Chrimes does it for grandad!

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 lucy@ms-uk.org

Uniting to beat loneliness

Posted on: December 13 2019

Image_0.jpgDiana 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 provide.unitedinkind@nhs.net. 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.

Christmas opening hours

Posted on: December 13 2019

Christmas opening times graphic Hi everyone,

I just wanted to let you know our opening hours for the festive period as we get closer to the mince pies! 

Tuesday 24 December - Open 9am to 1pm

Wednesday 25 December to Wednesday 01 January - Closed

Thursday 02 January - Open from 9am

If you attend our wellness centre in Essex, Josephs Court, we will also be opening for a couple of days so you can continue your exercises throughout the festive period. Josephs Court will be open from 9am to 1pm on Friday 27 December and Monday 30 December. 

During the holidays, you can always contact our helpline team and we will respond in the New Year when we return.

If you would like to speak to someone before then, the Samaritans are open 24/7 and you can contact them in a variety of ways. You can visit the Samaritans website or call them on 116 123. 

Wishing you a merry time if you are celebrating Christmas and a very happy New Year from all the teams here at MS-UK!

Best wishes,

Diana

Head of Services

What is HSCT?

Posted on: December 12 2019

HSCT stands for hematopoietic stem cell transplantation. It was first used to treat cancer, but is now used as a therapy for autoimmune diseases such as multiple sclerosis (MS).

The aim of HSCT treatment in MS is to ‘reset’ the immune system to stop it attacking the body.

You may have seen it in the news because some high profile celebrities with MS have had the treatment, including Hollywood actress Selma Blair.

What happens in HSCT treatment?

First, chemotherapy is given to the patient via an infusion in the vein to stimulate the production of stem cells in the body. This usually takes up to 10 days. The extra stem cells are then harvested from the blood and stored.

The patient then spends some time in hospital while they are given powerful chemotherapy which kills off much of their immune system. The stored stem cells are then reintroduced to the patient’s body. At this point, due to having a much weakened immune system, they are at very high risk of infection and cannot leave the hospital, are kept in isolation, and are often given antibiotics.

The hospital stay can last for a long time while the immune system is rebuilding itself – anywhere from between 10 to 160 days. Within three to six months, the immune system should gradually rebuild itself.

Who is eligible?

You can get HSCT on the NHS, but only if you meet very specific criteria.

Generally, current evidence says that the treatment works best for those who are under 45 and have relapsing MS, have had it less than 10 years, and have an Expanded Disability Status Scale of 5.5 or less.

There must be signs that the condition is active, meaning there must have been two relapses within the last 12 months, despite the person having taken disease-modifying treatment.

HSCT support

If you are looking for more information or support surrounding HSCT, there are plenty of Facebook communities that may be able to help...

Alternatively, you can call the MS-UK Helpline free on 0800 783 0518.

MS-UK fundraiser shares her creative ideas for raising funds

Posted on: December 12 2019

IMG_20191117_091339_343.jpgSarah 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.
 

Pub quiz
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.

Party!

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.

How I ran a marathon for MS-UK and my country

Posted on: December 10 2019

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 Chris Rayner - England.jpgproudly slipping into my England vest ahead of the Yorkshire Marathon!

The beginnings

During my early 30s, as is often the case, I’d put on a bit of weight and didn’t really exercise. I was stuck all day behind the wheel of a car as a sales rep, and my eating habits weren’t the best.

The big change happened when my marriage failed. I began jogging to try and do something positive. It’s well known that running can really boost mental health, and I was feeling a bit lonely. A friend suggested I go along with her to an event organised by Chiltern Runners. I became a regular.

I was adamant I would never enter a race, but one night, after several post-run beers, I was persuaded to enter the 2013 Leeds Abbey Dash 10k and, during the same beer session, declared I’d be able to do it in under 40 minutes. I didn’t even have a running watch back then so decided I’d better train hard, and crossed the finish line in 39 minutes 22 seconds. I was hooked!

The accident

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!

Going international

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.

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