‘Our sister and cousin, Nicola, 48 year old mother of three, was diagnosed with multiple sclerosis (MS) in 2017.
‘Obviously such a diagnosis came as a shock to us all. From the beginning the support she has received from MS-UK has been tremendous. It gave her a forum to discuss her fears and engage with people who also have MS. In turn, it continues to give her strength and courage and is empowering her to live her life to the fullest.
‘Through Nicola we heard about the MS-UK sponsored places at the Royal Parks Half Marathon and as runners, it was an obvious way for us to give back, do an activity that we love, make a difference...all in all, a win-win situation.
‘Out the outset, as busy people, we wanted to keep our fundraising efforts simple to achieve our target of £800.
‘We canvassed family for their suggestions on how best to raise the money and the consensus was very much in favour of fundraising activities rather than just donations. This enabled us to bring our family and friends together and the desire to have some fun along the way!
‘We agreed our two events would be a garden tea party and a quiz to make the most of the lovely summer we had this year. Both activities exceeded our expectations – you can see we raised an amazing amount on our fundraising page!
‘The key challenge for us was to ensure that our guests at both events went away feeling they had an enjoyable experience and the £10 fee was good value. Feedback from both events exceeded our expectations, with suggestions we should set up our own afternoon tea business and turn the quiz into an annual event.
‘We smashed our target and raised approximately £1,200, which enabled us to spend the latter two months focusing on training for the race.
‘Both of us came away from this experience feeling a sense of pride in achieving some personal physical targets (we both set a new personal best) and in our own small way we have made a difference.
‘So what’s next? We are delighted to be volunteer stewards for the upcoming Colchester Half Marathon and looking to engage as many family members. Maybe we will see you there!
Karen and Maxine
A year, wow, how time flies. At the time of writing this it’s exactly a year since I was diagnosed with multiple sclerosis (MS). Before that day I had no idea what MS was. Now all I think about is MS. Instead of thinking about what I want to do in 3 years time I’m now planning what I can do in 3 hours time. Every day is a different day. On a Saturday night I’m looking forward to my run in the morning and pumped up ready to go…then the morning comes. It’s Sunday. I’m struggling. Time to change my plans.
That is one of the things I’ve learnt most about MS. I’ve always made plans months in advance let alone weeks, but now I look at this in a new light. At first if I missed a plan I would sink to a new level, I felt like MS was controlling my life, I felt that it was the end of the world. Now I look at it and even though I’m still upset, I remember it’s only one day, they’ll be others I can attend. If you have amazing friends like I do then they’ll understand, as long as you let them. This brings me on nicely to what else I’ve learnt.
Talking. Talking about my MS, my depression, my everything is possibly the best thing I’ve learnt since being diagnosed. You shouldn’t have to bottle up what’s inside, it’s scary telling people but how else can someone help you? I’m not afraid to say that I had counselling. I’m not afraid to say I went home and cried after some sessions. I’m not afraid to say it is one of the things that’s helped me the most. It gave me the confidence to speak to my family, my friends, my girlfriend. It’s why I’m happy to be so public about everything I’ve been and am going through! Because of this they all understand what’s happening with me. MS doesn’t just affect the sufferer. I know that people have cried over my diagnosis and the affect it’s had on me, but I also know that being open and approachable about it has helped them. If I had to give one piece of advice to anyone suffering with something it would be to talk about it.
Do you have something you love to do? Love to see? For me fitness is the one thing I love to do. I may complain about running on a cold Tuesday night in Swindon, or a rainy Colchester morning, but once I’m out there I love it. Ok I lie (don’t judge me) but I love to read too. This year I’ve read over 30 books and they’re not just tiny books either! Escaping in to another world, furthering my knowledge in something, allowing myself to become fully immersed in a book has helped me through this year. Find something you love to do. Find something you want to love to do. Hobbies, interests, whatever it is, give it your all and you’ll appreciate it afterwards.
A year on and I still don’t really know what MS is. Does anyone?! I ask numerous silly questions multiple times and I will carry on doing this for as long as I live! One year down and hopefully many, many more to come. I’ll get there one day, maybe come back and ask again next year?!
MS-UK Counselling is a confidential service open to anyone living with MS. You can talk about your thoughts and feelings with a qualified professional that also has an understanding of MS.
It’s been a good while since I wrote. I’ve wanted on many occasions but life has been against me. When you live with a chronic illness, it's a constant uphill battle but when life chucks in more challenges, you just want to scream!
It’s that time of year when bugs bounce around. You do things to help to escape illness. I’ve chucked orange juice down me for the hope of that extra vitamin C prevents any illness but I’ve still sounded like Darth Vader. Little man’s nursery has been a hive of germs. You want him to go but battling against bugs is a neverending game. Me, then little man, me again. I think it was tennis germs. My immune system is even more shot to pieces since MS.
My symptoms flare up when I’m sick, especially my fatigue. The MonSter comes back with a vengeance. Big effort! You just want a break. Last weekend, I woke up to not being able to walk. I bought a rollator/wheelchair combo as my scooter broke recently (another story). I needed a back up plan. Good job I did have one. Little man’s daddy wheeled me into church as I didn’t want to miss Remembrance Sunday service. I’ve got a poster used in the war “Keep calm and carry on”. You just remember what others have done to make you, your family and friends safe, and it all blends into perspective.
MS is a pig of a disease. When people ask, 'How are you?' and you reply 'OK', it’s because in the past replying with the truth doesn’t help many and it is easier, less effort to say 'OK'. Everyone has their challenges. You don’t know what they are. That’s the biggest lesson I’ve learnt from having MS. Simply be kind to others. You don’t know what sh*t they are dealing with.
I was recently given some drugs for my MS bladder as an interim solution as I’m waiting for Botox. I had a bad reaction to them, so no longer taking. I should have known as every drug I’ve taken has caused me medical grief. To add insult to injury, we’ve had home leaks to contend with. As the phrase goes, 'It never rains, only pours'. Little man’s daddy asked, 'Is that a joke?'
As you can read it’s been pretty interesting. Maybe I should rename my blog to “ poorly pi**ed off parent”. When I’m feeling rubbish, I think of that war poster “ keep calm and carry on”. That is my option, she says coughing again.
You can read more from Joanne on her blog, Poorly parents.
‘After missing the chance to run the Virgin Money London Marathon through the ballot, I decided that for 2019 I would fundraise for a charity close to my heart, MS-UK. I'm pushing hard, taking on multiple challenges and races between now and the marathon. So far, fundraising is going ok.
‘My Dad was diagnosed with MS when I was a child. I still remember the day he sat me down and told me. I had no idea how bad MS was or how it was going to change our lives and yet it still tore me apart.
‘Sitting here now typing this still breaks my heart and brings a tear to my eye.
‘For the past 20+ years, I've seen MS take my father away from me. At first, it was only really fatigue that was noticeable and a few days where he wasn't great on his legs.
‘As time went on, he lost the ability to drive and eventually couldn't even walk or feed himself.
‘MS has also damaged his brain, wiping out his short term memory and his ability to talk. This has been the biggest impact on me, not being able to speak to him, ask him questions and all the things a son should be able to ask his father.
‘I regret not making the most of the last good years with him while I still had the chance.
My Mum cares for my Dad 24/7 which really takes its toll on her, she's stubborn though and does everything she can for him.
I chose MS-UK and the London Marathon to show my support for my family and to raise as many funds for such a supportive MS charity that gets much of its funding through the London Marathon charity places.’
You can find out more and make a donation on Gavin's JustGiving page.
In her latest blog, MSer Joanna talks about her first round of Lemtrada and reveals what made recovery easier for her.
Back in June 2018, I had my first round of Lemtrada. Here’s all the things I wish I’d been told beforehand!
Drink as much water as possible, and I'm talking in excess of 3 litres a day. Take cordial to make it easier to drink. Especially as when that awful steroid taste gets in your mouth, water is almost unbearable. Keep asking the nurses for top ups. It helped keep my body temperature and blood pressure down, and held any headaches at bay.
2. Mint imperials are your friend!
That steroid taste is awful during the infusion, but does go afterwards. Mint imperials helped a lot. Take a couple of bags with you. You won't regret it.
3. Get outside
I found it helped if I could get out in the fresh air. You're not bedbound during your stay. Stick around during your infusion, but it helps to get outside even just for half an hour at some point that's convenient.
4. Keep busy
Some days go quicker than others but there's only so much of the comings and goings on the ward that you can watch before you need something else. Watch that series you've been meaning to watch on Netflix, write someone a letter, or do a crossword.
5. Try and retain normality
Every morning I had a shower and did my hair and make-up. Having a bit of a routine made me feel normal. Keep this up during your recovery too. It really does help your mental health.
6. Steroid crash
I only took steroids on day 1 to 3 of my infusion. Because I hadn't had steroids before the Lemtrada, my body had a hissy fit. You might have some kind of emotional crash. Just to add insult to injury, you'll probably break out in what looks like hives. Don't touch them. It's not that itchy unless you make that fatal, first scratch.
7. Don't suffer in silence
Us MSers are used to putting on a brave face. We rarely feel 100% but for the most part we shrug it off. But you do not need to be superman or woman when you're in hospital. Have a rash? Accept the IV piriton. Have a tight chest? Take the nebuliser. Nobody's going to call you a hero for soldiering through. They'll probably say you're stupid if you do that!
Ask all the questions. Continue to do so when you come out. Use the #Lemtrada hashtag on social media to find other people in your shoes. If you're in the UK, join the Lemtrada group on Facebook. Keep on learning and talking to other people that "get it".
9. Plan ahead
The last thing you'll want to do when you get out is go to the supermarket. You'll think you can, but after 20 minutes you'll probably realise it's the worst idea of your life. Whilst in hospital, get ahead of the game and schedule a home delivery.
Rest. You're going to have good and bad days. You might feel like you're having a "pseudo relapse" with every symptom you've ever had flaring to it's worst. You'll have a good day then pay for it the following day. Be gentle on yourself. It's not a miracle cure, you won't suddenly be OK overnight. Things might take a while. But it'll be worth it.
You can read more from Joanna on her blog ms-understood.com
In our latest guest blog, Joanna Livermore shares her top 5 exercise tips for those with multiple sclerosis (MS).
Since being diagnosed, in an attempt to restore normality to my life, I’ve been making tentative steps back into the gym. It feels good to be back! Here are my top 5 tips for exercising with MS.
1. Be honest
If you have a personal trainer let them know how your MS impacts you in general, but also how it's impacting you that day. They can't be an expert in MS, but with your honesty, they can tailor your training to fit how you feel on that day.
Get to know your body and what it's trying to tell you. If your body is telling you that you can't train today, listen to it. It's ok to skip a session if you've not got much fuel in the tank. Some days you might just need to change the way you train. If your leg is causing you a bit of pain, train your upper body instead. Maybe you need to reduce your weight and go for higher reps. You might need to take longer breaks between sets. Do what you need to do, and don’t beat yourself up!
We all know that with MS, controlling your body temperature can be a nightmare. I've literally overheated in the gym before and seen stars because I've got that hot. Drinking lots of water while you're training will help keep your body temperature down.
4. Change the time you train
I used to go to the gym straight from work, but I find this really tough now. Many people don't have the motivation to go back out to the gym at 8pm at night but it means that I get to have a bit of a break after work which helps to recharge my batteries. You might find changing the time you train means you can have a better session.
5. Don't waste time worrying what other people might be thinking
The other day, I was finishing my workout with a 3.5km/h walk on the treadmill. And the guy running next to me was looking at me as if what I was doing was kind of pointless. Before that I'd been deadlifting a 16kg kettle bell next to a girl lifting 75kg. I couldn't help but think she thought I was pathetic. Firstly, it was unlikely that either of them were thinking those things, and secondly even if they are they don't know that I have MS and if they did they’d probably think I was awesome!
We aren't MS warriors for nothing. We grin through pain, fatigue and everything else. It doesn't matter if you're running 1k or 10k, lifting 5kg or 50kg. You are amazing for even being there. As long as you can be honest that you've tried as hard as you can on that day, you're an absolute rock star.
You can read more from Joanna on her blog ms-understood.com
Sue Bowles recently completed the West Highland Way in aid of MS-UK - a gargantuan 95-mile Scottish trek from Milingavie to Fort William! Sue tells us all about the challenge in her Fundraiser of the Month blog!
I decided to do this walk for MS-UK due to the inspiring way an ex pupil of mine has dealt with her diagnosis of multiple sclerosis (MS).
Kadeena Cox was a pupil of Wetherby High School and I had the privilege to teach her PE and coach her hockey. Kadeena was a very talented PE student and went on to be captain of the school hockey team. However her main talent was her speed and she became very involved in the Leeds Athletic Club where she would go most nights to train.
Kadeena's dedication to her training paid off and she earned herself a place in the elite Olympic camp. It was then, while training, that Kadeena was diagnosed with MS.
However she decided that she would not let it get it in the way of her ambition to become an Olympic competitor and she continued with her training, earning herself a place in the GB Paralympic team in 2016 in Rio, Brazil. Not only did she compete in cycling and sprinting events but she brought home gold, silver and bronze medals. She followed this up with many more achievements in the World Championships in 2015 and 2017. Kadeena is now focused on the 2020 Paralympics, and I am sure she will be as successful as ever.
She is a great role model showing that whatever obstacles come into your life you can adapt and still achieve many of your goals. Her attitude to MS mirrors the ethos of MS-UK whereby you can cope with challenges and still live your life to the full. That is why I chose to fundraise for MS-UK and to raise awareness of MS and the support that is available.
After completing the West Highland Way, which is set in stunning countryside, I decided it should be named the West Highland Challenge! I loved the whole experienc - all the blisters, rain, wind, and glorious rainbows! Whenever I was finding it tough I kept thinking about why I was doing it and I knew it was just for the moment. If I could just help a little bit for people who have to cope with an added challenge everyday then it was nothing.
I hope in some way my story might help to inspire someone else to promote awareness of MS and support MS-UK with all the work that they do.
In our latest guest blog, Rossia Mockett tells us how she's turned a love of sewing into a 'stich-perfect' way of supporting MS-UK!
My eldest son was diagnosed with multiple sclerosis (MS) in 2015, it came as a shock for him and for us as a family, then came the emotions and dealing with the diagnosis which wasn’t easy for any of us. As time went on we searched on the official MS charity websites (including MS-UK) which were helpful to us in gaining a better understanding of MS and some of the difficulties that come alongside living with MS. We found it helpful to be able to read the stories of others and to be able to know that our son was not alone in what he was going through.
This year I decided that I wanted to raise money for three main multiple sclerosis charities, one of them being MS-UK. I love sewing, so earlier this year I launched my business, New Barn Crafts on Etsy. I then applied to craft fairs and took my handmade items along to them, taking with me my MS-UK collecting boxes and literature. This has been successful because people could purchase an item from my stall or donate to one of the three MS charities of their choice. On some occasions they do both! I’ve really enjoyed doing the craft fairs as I’ve met some wonderful people and had some great conversations about their loved ones, family members, or friends who are living with MS. I have so far raised enough money for a Pin for Pounds badge which I am thrilled with!
Where possible I think that it’s important that others try to get involved and help raise money for such a great cause! It’s given me great pleasure that, even doing something as small as this, you can make a difference. If I can do it anyone can do their bit to raise money for an amazing charity such as MS-UK. As we come to the end of the summer, and the craft fairs are finishing up, I look forward to developing my Etsy shop and New Barn Crafts Facebook page further and get some sewing completed for next year’s forthcoming events.
Want to get your hands on a limited edition, 25th Anniversary MS-UK pin badge?
With the recent announcement that the government and a number of major high street brands are backing the UK’s first ever inclusive shopping day aimed at supporting the disabled and immobile, accessibility in our cities and towns will be vastly improved for those with multiple sclerosis (MS).
Called ‘Purple Tuesday’, the innovative scheme will take place on 13 November and will see retailers including Argos, Asda, Sainsbury's and Marks & Spencer introduce new measures to make shopping a more comfortable experience, especially for those in mobility chairs.
But whilst this is much-needed progression, many people are unaware of the experiences that approximately 10,000 MSers deal with before they can even enjoy the luxuries of shopping and eating out – things we often take for granted.
For instance, someone who has the condition may have to rely on a wheelchair or mobility chair as a means of getting around. Unfortunately, this can involve a lot of hoisting, such as from a bed to a chair, which can put a considerable amount of pressure and strain on loved ones.
Once in the chairs, accessibility can still be an issue. If the chair can’t be modified, for example, simple tasks such as going out into the garden, or even entering the lounge or living room from the bedroom to spend time with family and friends can become an unnecessary challenge.
If an immobile person is deprived of accessibility for a prolonged period of time, isolation and loneliness can become a daily issue. In the worst-case scenario, a lack of accessibility can have a detrimental effect on the person’s mental health, with illnesses such as depression arising from feeling as if they have no freedom or independence.
So, it is important to remember that mobility is about more than just making places accessible. Yes, chairs the immobile use must be inclusive to utilise accessibility, but ultimately, they need to ensure the user is kept comfortable and safe.
A bespoke mobility chair, for instance, can be adapted to cater to an individual’s specific needs. Adjusting a specialist lounge chair to suit the user’s environment or varying physical needs, will make spending quality time with family and friends a more comfortable and accessible experience.
As well as being portable, multi-adjustable, with tilt in space capabilities and light in weight, bespoke chairs can provide those with MS with a greater sense of independence and freedom, while offering the highest level of security, safety and stability.
Overall, as a nation striving for more inclusivity, we must make mobility more comfortable for those with MS. Yes, retailers recognising the need to better improve accessibility for mobility chair users is fundamental in reaching our ultimate goal of creating a fully inclusive society, but we must also endeavour to make the user’s quality of life as comfortable as possible both in and outside of the home.
Let’s continue to talk about accessible shopping to raise awareness. Why not share your good and bad shopping experiences, or what mobility aids make shopping possible for you. Visit out Facebook page to add your comments.
My name is Charlie Stebbings and, along with a 14 strong team, I cycled from London to Paris between 04 - 06 May.
Myself, Mortimer McKechnie, Paris Baker, Millie Bampfylde, Tom Sater, Alicia Hanmer, Rob Gibson, Occy Cobb, Paddy Rogers, Lucy Munday, Robin Butler and Tom Everard decided to commit to this challenge in aid of three fantastic causes - MS-UK, Cancer Research, and SUDEP Action. Along with our amazing and indispensable support drivers Jack Smail and Helen Callaghan, not to forget our two broken bone casualties Katie Barton and Minty Naylor, we made a formidable fundraising team intent on giving as much support as we could to these fantastic causes.
MS-UK has been a fantastic support to our family over the last eight years since my mother was diagnosed. The work they do for suffers and their families is integral to all those affected by multiple sclerosis (MS) and therefore it is always a privilege to fundraise for them. Having said that, the pain you experience near the top of the mountain on day two at mile 95 was accompanied by a ‘what are we doing’ moment, but that is part of the fun! We organized this challenge to test ourselves and push us so that everyone felt that sense of achievement and success.
The 300 mile trip over three days was a brilliant way to do just that, and apart from Tom Sater Cycling into the back of Lucy Munday as he was being sprayed by a very friendly Frenchman watering his plants, and my exploding tire in Paris, we made it without a hitch. The 30 degree weather was both a blessing and a hinderance, but there is no doubt it kept moral high and helped those of us often void of a tan suitably rosy.
The fundraising experience is one that we can all approach in different ways, but we liked to get people engaged with the trip and run fundraisers instead of solely distributing letters or emails etc. I think there is nothing more enjoyable and motivating than hosting an event which shows you how much support you have for the charities and how many people genuinely care for your cause. I recommend it to anyone who haven’t involved people tangibly in their fundraising to try it. It adds that extra dimension and can remind you why you are doing this often crazy challenge!
Gift aid included, we raised £20,600 and am delighted to be able to give MS-UK some of that money. I must thank my team for supporting this charity with such enthusiasm. It means a huge amount to me, my family, and hopefully everyone in this community.
On to the next one!