With both of us having parents who are sufferers of multiple sclerosis (MS), we both believed it would be important to try and raise money to help them as best we can. At first, we looked at participating in a triathlon, but on second thought believed we should do something more extravagant, and so turned to the idea of a skydive. We knew this would put us both outside our comfort zones and looked forward to the challenge. We collected donations for around three months prior to the jump, both setting a target of £500, with an overall goal of £1,000.
As you can imagine, at first both of us made a lot of money but after a while the donations began to dry up. Therefore, we took to advertising our JustGiving page on social media, sending it to friends and family. We also asked around our schools for donations, which contributed significantly. Our jump took place on 03 November at Hinton Skydiving Centre in Brackley.
Family and friends came along to support which was a big confidence boost due to a high level of nerves. We had our briefing, met our tandem jumpers, and set off on the fifteen-minute journey up to 13,000 ft. The journey up was the worst part because it came into perspective just how high we were jumping from. On the way up, we took in the view of Silverstone racetrack and had one final briefing before the long fall back to ground. Alex jumped first, and Dan went second.
Both of us thoroughly enjoyed the experience and both genuinely believed it was the best of our lives. The feeling of falling is very hard to explain, but it's an amazing sensation like no other that fills you with high levels of adrenaline and excitement. We would thoroughly recommend a skydive to anyone thinking about doing one, the experience is so unique, and you will not regret it.
Overall, we are delighted to say to that both met out targets and ended with a total of £1,497. Once again, we would like to thank MS-UK for their unconditional support and we hope our money goes to a good cause.
Dan Wood and Alex Greene
My name is Laura and I am delighted to have been given a spot in the London Marathon in aid of MS-UK. I decided to run for MS-UK to raise awareness and funds for all those that are affected by multiple sclerosis (MS), including myself.
Since being diagnosed earlier this year, it has really motivated me to challenge myself and I thought that the London Marathon was the perfect way to do this. I must admit, the thought of raising a minimum of £2,000 was very daunting at first however with the help of my family and friends, I was able to come up with some great ideas in order to raise as much money for the charity as possible.
Even though I still have plenty of time before the marathon, I am the type of person who cannot relax until I am meeting targets or seeing results so I wanted to begin my fundraising as soon as possible so that I had less pressure on myself close to the run and so that I had enough time to enjoy every minute of raising money and also training.
I have recently hosted a coffee morning at my house which initially I thought would hopefully raise about £300. I got together with my family and friends who all pulled together to create a raffle, lucky dip, a treasure hunt and not forgetting the most important part...making cakes!
I managed to create some leaflets which I posted through neighbors doors and spread the word to as many people as possible.
When the day came, I was astonished with the amount of people who attended to support me and help me raise donations. It was a very enjoyable and successful day which left me feeling very humbled by everyones generosity.
I managed to raise an amazing £1,200 with donations still flooding in even after the event!
It has left me feeling very excited to come up with even more fundraising ideas and I am so pleased that I have been able to raise that amount of money just a few months after I was given my sport with the MS-UK team.
You can find out more about fundraising in aid of MS-UK by getting in touch with our team today using our online form!
I was diagnosed with multiple sclerosis (MS) 19 years ago and would love to have been able to stay as I was then. But as is the nature of the beast it progresses and my walking has deteriorated. But I don’t let that stop me as I have 2 work from home businesses with Forever Living Products and Tessellate CBD oil which keeps me busy. Also 2 sons in the late teens, early 20’s!
I have great friends that I love to socialise with and a great network of MS friends that are my MS family. We socialise quite a bit with breakfasts, afternoon teas, dinners out – life is for living and although I’m not as mobile as I used to be I still like to get out with my friends.
My husband and I like to holiday and for the last two years we have been back to the same accessible villa in Hisaronu, Turkey. We have seen The Glamour Girls perform twice now whilst we’ve been there. After seeing them this year we chatted about asking them if they’d do something for us in the UK. They spend their winter months back here in the UK touring but didn’t have much availability left. We then needed to find a suitable venue, which was harder than we thought. But when we went to view Colchester United’s large function room we agreed it would be perfect, big but perfect. So then we got to work.
I love having something I can get my teeth into. This is by far and away the biggest fundraiser I have ever organised. The maximum this room holds is 300 and I would love to be able to fill it, we’re almost half way so far! The more people in there buying raffle tickets the more money we make for charity and this is what excites me more. I’ve designed the tickets and posters using photos the glamour girls sent me and have been busy leaving posters with lots of businesses in our local town to display on their staff noticeboards. Some of my friends have also done the same. I’ve advertised it lots on Facebook, Instagram and Nextdoor and even contacted the local paper. I’ve also written to lots of businesses to see if they could donate a raffle prize for us. So there’s lots to do and I won’t rest until the night..! Actually I probably won’t rest then!
It’ll be a great night, a feast for the eyes. With great costumes and songs, just a fun evening of entertainment for guys and girls.
To find out more about the event happening in Colchester, call Sharon on 0778 2240034!
We're here to help! Just email Lucy or call us on 01206 226500.
Adjusting to being diagnosed with an invisible illness can be really tough. I have bad days, but with the help of amazing family and friends it’s a whole lot easier. If you know someone with an invisible illness, you can help. The problem is, sometimes it’s difficult to know what to say or do. So here are my top tips!
If someone confides in you that they have a condition, they’re giving you a licence to talk about it. Thank them for being open and then ask them how it affects them. It means a lot when someone asks questions to understand the condition more, rather than just trying to avoid the subject. Find out from them what they need from you to help them day to day. Chances are they don’t want to be treated any differently, but there might be something that you can do to make their day easier.
2. Check in!
I go totally off grid when I’m struggling to cope with my condition. I become withdrawn and you won’t hear from me for days. At some point, someone will notice that this is a bit out of character for me and check in. I’ll admit that I’ve not been ok and they’ll tell me that they are always there for me if I need to have a moan or sound off. Thing is, when you’re in that space, it doesn’t always occur to you to do that. Make sure you drop your friend a regular text to let them know you’re thinking of them.
3. Cut some slack
It’s typical that someone with a chronic condition suffers with some degree of fatigue. That means that even the best laid plans can go wrong if they’re just too tired to function. Be forgiving if they’ve cancelled that night out for the third time in a row.
4. Don’t assume
Every day with a chronic condition is different. Some days you can take on the world and on others you can’t get out of bed. Avoid making assumptions about what your friend or family member can do. Don’t stop letting them make their own choices and keep on inviting them to social occasions. Sometimes they will accept and other times they might politely decline. But they will always be grateful that you have let them make their own choices.
5. You don’t have to find a solution
With all the best intention in the world, we want to solve people’s problems. But if the top doctors can’t find a cure for the condition, it’s unlikely that you’ll be able to provide a solution yourself. If they want you to give a solution, they’ll ask for your opinion.
Ultimately, the best thing you can do is make sure that person feels loved and cared for. They need to still feel like a person, and sometimes the best way of doing that is by doing absolutely nothing differently. Nobody with a chronic condition will manage day to day in the same way. The only way to find out, is to ask.
If you would like more information about living with multiple sclerosis (MS) you can download our Choices leaflets for free.
GFM ClearComms is getting into the festive spirit this year by launching a ‘12 Days Till Christmas’ charity campaign, whereby every day from 13 December up until Christmas Day we will be holding a charitable event in aid of a different UK based charity.
To kick start this campaign the company has decided that rather than sending out Christmas cards, as they always have done in the past, this year they will be sending out ecards and then donating the money saved from not sending out actual cards to the Essex & Herts Air Ambulance.
Bringing the campaign to an astounding conclusion on Christmas day, Justin Stone, Contact Centre Manager at GFM ClearComms, will be walking a staggering 55 miles from Colchester to London to fundraise for mental health charity Mind. The other charities that were chosen by members of staff to receive donations include MS-UK!
“We are proud to provide a variety of UK charities with our contact centre, marketing and fulfilment services; however, our interest in the charities we support goes beyond just working with them and we have and will continue to hold events like this to help these great causes. Everyone at the company is really excited for this campaign to start and looking forward to 12 days of fun activities and festive fundraising leading up to Christmas,” says Rachael Willis, CFO at GFM.
To find out exactly what the company will be doing each day of our ’12 Days Till Christmas’ charity campaign check out our website and social media channels where we will be revealing the full details of each event daily in an advent calendar style fashion!
‘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