Fundraiser of the month: Mel’s story!

Our fundraiser of the month for August is Mel Foyle. She got in touch with us in April to tell us about a fundraising day that she was planning with raffles, games for the kids and food and drink. The event took place on the 01 July and was a great success!


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My name is Mel Foyle and I have recently done a fundraising event for MS-UK.

A little bit about myself, I am 27 and I have a little girl called Millie who is 3 🙂

I was diagnosed with relapsing-remitting MS in 2015, but symptoms first started in 2011. At the start of the year, I made a resolution that I would raise some money and awareness for MS-UK. I wanted to do this because I’ve seen my friends’ mum and her friend raise so much money for them and I wanted to do my bit as well. I also know how much this charity does and I wanted to do a UK based one, I never know when I will need their help.

I wanted to do my own fundraiser and I chose a family fun day! It took me a few months of organising, with help of family and friends of course – especially my 2 best friends and my mum.

The day started at 4.30pm at Thatcham Football Club. We charged people to get in and inside had stalls for cakes and sweets, a bar, a tombola and some games. We also had a DJ, and decorated the hall with balloons in purple, green, orange and white.

Outside we had a bouncy castle, an ice cream van, some more games and a big penalty shootout. I also held a raffle later on, with nearly 60 prizes ranging from evenings in London to meals out, family days, haircuts and beauty products. These sold very well! The plan was to also have a burger van, but after it was half an hour late we soon realised it wasn’t going to turn up! I had to try and stay calm, and luckily my best friend and brother in law took it on themselves and went and got loads of food and a BBQ, so none of the worry was on me. My dad and father in law cooked away and managed to have it all under control, I’m lucky to have them all!

Overall we had around 100 plus people there and the weather was hot and sunny. It had been rubbish weather all week so I was happy when the sun decided to come out! Other than the burger van fiasco, the day went so smoothly!

I feel really proud of myself that I managed to pull off such a good event and I will be doing it again for sure, just not for a while haha. But I will continue to try and raise money and awareness wherever I possibly can.

My final total, from the event and my JustGiving page, was a massive £1,790, which was way more than I ever expected! I couldn’t have done it without my wonderful partner Chris, he has supported me through absolutely everything.

Big thanks to Nick at MS-UK for all his support, help and advice from start to finish!

Mel

Posted in cake, Charity, Do your own thing, Donations, family and MS, Fundraiser of the month, Fundraising, Guest blog, Love, MS, MS-UK, Multiple Sclerosis, supporters, Uncategorized | Tagged , , , , , , , , , , | Leave a comment

Bank holiday – garden party time!

Garden Party.JPGWant something to do on the bank holiday weekend?

Hold a garden party for MS-UK!

So the August 28 bank holiday is coming up and we had a little brainstorm about how you, our lovely supporters, could use the break to have a little get together in your own back garden in aid of MS-UK!

Below we’ve put together a checklist of what you’ll need to host a garden party for MS-UK to help you organise your very own!

  • A garden – Very handy for a garden party! If you don’t have your own then you could see if a friend would be willing to host or if you could hold it in a public park?
  • A theme – You could theme your garden party and have guests dress up. For example ‘British summer time’, where you could serve strawberries and cream and wear straw bowler hats. Don’t forget the Pimms!
  • Invitations – Invite as many people as you like. A garden party is all about seeing old friends and introducing new ones
  • Fundraising goodies – Some MS-UK tops, a collection tin, a few stickers and balloons all make for great decorations at your garden party and help people know what they are raising funds for
  • Seating and tables – You could use some garden furniture or bring some indoor chairs outside. You could even lay out picnic blankets!
  • Food – Always a winner at a garden party. You could have sandwiches, cakes and some fruit. If you wanted to go big you could also think BBQ!
  • Drink – Tea and coffee are a classic garden party drink. Wine never goes unnoticed too…
  • Entertainment – You could see if a friend would be willing to play some music for you, or if you wanted to go old school you could play a game of croquet!
  • Donations – Asking for a donation for the garden party is the best way to raise funds but you could also ask for donations if you have some entertainment. Get some MS-UK collection tins to collect the funds!
  • Sending thanks – sending out a thank you to everyone that attended is a great way to thank everyone for their contribution to MS-UK

We hope this will help if you want to plan a garden party!

Let us know if you’re putting something together and we can send out the fundraising goodies and collection tins that you need to make it a fundraising success!

You can get in touch with me at Nicholas@ms-uk.org or call on 01206 226500!

Good luck…and I have my fingers crossed the weather holds!

Nick

Nick Adams

Fundraising Assistant

Posted in Bank Holidays, Do your own thing, Donations, Fundraising, Garden Party, MS, MS-UK, Multiple Sclerosis, Uncategorized | Tagged , , , , , | Leave a comment

Foot drop? Find out more about a free trial of the Bioness FES

Hello,

Do you experience foot drop? FES Hire are a new company who are offering the Bioness FES, which is a walking device.

The Bioness FES consists of

  • A battery-powered control box, about the size of a pack of cards, worn on a lanyard or carried
  • A sensor worn in the shoe (heel switch) which detects pressure changes as the foot starts to move
  • A band wrapped around the leg, with battery-powered electrodes touching the skin

FES Hire are a new company providing this device on a hire lease purchase basis.

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They would like you to invite you to attend a free trial event at Moulton, Northampton on 20 September 2017 where you would get a free fitting and calibration from a neuro physio. Please visit www.feshire.com for further information and to register for the event.

Best wishes,

Diana

Diana Baxter, Head of Services

Posted in Bioness FES, Chronic illness, disability, Disabled living, MS, MS symptoms, MS-UK, Multiple Sclerosis, Uncategorized, wellbeing, Wellness | Tagged , , , , , , , | Leave a comment

Guest Blog: The day after, the day after, the night before…

In her second guest blog for us Jo discusses MS fatigue and how it can creep up on you unexpectedly…


Jo smallFor those of us with MS, planning becomes second nature. As we only have a limited amount of energy available we know there is only so much we can do before symptoms flare up or we run out of batteries. So if there is a particularly big event approaching I
try to plan a rest day either side to compensate. Simple.

However, I have now discovered a new phenomenon which I like to call ‘the day after, the day after, the night before’. It appears that often the day after a big event or a busy day I actually don’t feel too bad. (Just to clarify a ‘big event’ or ‘busy day’ could be a football match or night out, but equally could be ‘did some housework’ or ‘went to the shops’!) However the day after that? I often feel dreadful! I’m exhausted, the pain is back or my legs are wobbly and I struggle to function.

A recent example of this, was I went to see a band I had always wanted to see. It was ambitious I admit. I rested the day before and on the day itself, got a lift to and from the concert and had an amazing time (it made a change to have my ears ringing for another reason rather than the usual tinnitus!) And the next day? I didn’t feel too bad. Tired from the late night and the extra standing and walking, but pretty OK. ‘Got away with that’ I thought. I was pleasantly surprised and as it turns out lulled into a completely false sense of security, because the day after? I felt awful! Pain, nausea, crippling fatigue…all the usual suspects.

So why is this happening? I have absolutely no idea, but it’s really annoying and makes that whole planning thing a whole lot harder! I now have to try and allow two days rest after a particularly busy day, which isn’t always practical. And if I have a run of a few days with commitments and appointments it means I have to cut everything else right back to have any chance of doing them. It means no washing will be done, meals will be chosen by their ease of preparation (hello egg and chips) and socialising will be cut right back, because these mundane daily activities use valuable energy that isn’t going spare.

And that’s OK. If that’s what it takes to ensure I have the best chance of doing the things I have to and want to do, then so be it. Sadly my hangover days are long behind me (hard enough to stay on my feet and find my words sober!) so the traditional day after the night before is not a problem…but the day after, the day after, the night before? That’s a whole different kind of challenge that hair of the dog or a fry up just won’t fix!

Jo


You can download our Choices leaflets on fatigue, and MS symptoms from the MS-UK website.

Posted in Choices Leaflets, disability, Disabled living, family and MS, Guest blog, MS, MS symptoms, MS-UK, Multiple Sclerosis, Pain, Uncategorized, wellbeing | Tagged , , , , , , , , | 1 Comment

Last chance to take our helpline survey…

Hi everyone,win icon.png

Tomorrow is the last chance to take our survey all about the MS-UK Helpline, and let us know your opinions if you have used the helpline at all in 2017.

We would like to know why you chose the MS-UK Helpline, whether or not you found the information and support from our team useful and your opinions about our opening hours and accessibility.

This survey is for people who have used the MS-UK Helpline this year (2017). By completing this survey, you are helping us to improve the MS-UK Helpline in the future, so your feedback is invaluable!

As a thank you for sharing your thoughts, one lucky person will be selected at random to win a £50 Love2Shop voucher!

The closing date for this survey is tomorrow (09 August 2017), so don’t delay!

Take the survey now online

Thank you – and good luck!

Best wishes,

Diana

Diana Baxter, Head of Services

Posted in Diagnosis, disability, Disability Rights, Disabled living, Helpline, Helpline Live Web Chat Service, MS, MS community, MS drugs, MS exercises, MS symptoms, MS-UK, Multiple Sclerosis, neurology, Survey, Uncategorized, wellbeing, Wellness | Tagged , , , , , , , , , | Leave a comment

Colchester M&S choose MS-UK as charity of the year!

MS-UK were over the moon to receive a phone call back in March from Marks & Spencer Colchester saying that we had been selected as their charity of the year for 2017/18. Each year the store raises approximately £4,000 for good causes!

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Staff nominate local good causes and a vote is cast to decide which charity the store is set to support. Staff picked MS-UK to show support for one of their store managers who is living with multiple sclerosis (MS) and coupled with the fact that MS-UK is local to Colchester – it was a clear winner!

Patrick Ablett and Zowie Guymer came to visit MS-UK to see first hand the services we provide to anyone affected by multiple sclerosis.

Patrick said, ‘I wish I had known about MS-UK when I had first been diagnosed, I had so many questions going through my mind. Seeing the centre for the first time gave me some light at the end of the tunnel, what a great team.’

MS-UK is a small national charity who supports anyone affected by MS. Locally Josephs Court, our wellness centre, offers specialised equipment which enables people living with MS to benefit from a tailored exercise programme which focuses on individual’s specific needs. The centre is much more than a gym, it provides a supportive environment for people living with MS who are facing similar challenges as well as being a great social hub too.

MS-UK also provides a helpline and publishes a magazine called New Pathways, both of which are available to anyone affected by MS. We support people emotionally and provide our clients with the information they need to make choices that are right for them so they can live life to the full.

Marks & Spencer Colchester will be raising money for MS-UK by having collection tins at the till points throughout the year as well as hosting a range of events and they have already raised over £500!

This Saturday there was a sponsored cycle in store, and a team of Marks & Spencer staff cycled their hearts out to raise awareness for the charity and raised over £560!

Staff and volunteers from MS-UK also joined in by offering shoppers a bag packing service in return for a small donation.

Jill Purcell, Fundraising Manager at MS-UK says ‘We are delighted to be working with Marks & Spencer Colchester. It’s fantastic to raise awareness of our brilliant charity locally as well as raising vital funds. MS-UK does not receive any government or pharmaceutical funding and we rely solely on our supporters to deliver our vital services to anyone affected by MS.’

Posted in Bag packing, Charity, Charity of the year, Colchester, Cycling, Do your own thing, Essex, Fundraising, Marks and Spencer, MS, MS-UK, Multiple Sclerosis, Uncategorized, Volunteering | Tagged , , , , , , , , , , , | Leave a comment

Guest blog : The Gorilla In Your House

Our Guest Blogger today is Mary of This Is My Blog after a fashion, anyway, and we thank her for her permission in publishing it on our blog. Mary talks of acquiring a disability and how it is bit like getting home to find there’s a gorilla in your house…


Mary - guest bloggerWith thanks to everyone over at Ouch.

Acquiring a disability is a bit like getting home to find there’s a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to ‘what you’ve got ‘ere, mate, is a gorilla, and there ain’t really a lot what we can do about them, see…’ before sending you back home to the gorilla’s waiting arms.

The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can’t deal with the gorilla, and leave. Your boss may get upset that you’ve brought the gorilla to work with you and it’s disrupting your colleagues, who don’t know how to deal with gorillas. You’re arriving for work wearing a suit the gorilla has slept on. Some days you don’t turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can’t get out of bed. Your friends will get cheesed off because when you see them – which isn’t often, because they don’t want to come to your house for fear of the gorilla and the gorilla won’t always let you out – your only topic of conversation is this darn gorilla and the devastation it is causing.

There are three major approaches to the gorilla in your house.

One is to ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that’s on top of you, it will have an effect on you.

Another is to try and force the gorilla out, wrestling constantly with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle. However, every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim victory, and tell the media that it’s a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers just aren’t doing it right due to sloppy thinking or lack of committment. The 99 other gorilla-wrestlers won’t have the time or energy to argue.

I have known people spend the best years of their life and tens of thousands of pounds trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won’t get their pre-gorilla lives back. They’ll be older, skint, exhausted, and constantly afraid that the gorilla may well come back.

The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss about ways to accomodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.

People get really upset about this and throw around accusations of ‘giving up’ and ‘not even trying’. They even suggest that you enjoy having a gorilla around because of the attention it gets you (while ignoring the massive pile of steaming gorilla-turds in your bedroom every morning and night, not to mention your weekly bill for bananas). The best way to deal with these people is to smile and remind yourself that one day, they too will have a gorilla in their house.

Mary

Posted in blogging, Chronic illness, Diagnosis, disability, GPs, Guest blog, MS, MS-UK, Multiple Sclerosis, neurology, Uncategorized, wellbeing | Tagged , , , , , , , | 1 Comment