In this guest blog, for World MS Day, Joanne shares her tips for dealing with multiple sclerosis (MS) and being a parent…
Everyone has challenges, mine is juggling MS and parenthood. With no control over either of them, I read to be prepared (girl guide in me!) but I couldn’t find anything that addresses being a good Mum (whatever that is!) whilst juggling a chronic condition. So I started to write.
With today being World MS Day, it’s all about awareness. My MS journey (I sound sooo talent show!) is like many who experience MS. Various symptoms to contend with (optic neuritis, chronic fatigue, balance, walking, slurred speech, brain fog, sense of smell, poor writing, bladder problems, very low immunity) and a fair share of MRIs, spinal fluid taps, side effects and health appointments. But my main challenge is being little man’s mummy whilst trying to juggle me.
My latest blog “Kiss Goodbye” has my tips to get a grip of any MonSter…
1. It’s personal. I haven’t been able to write well for over a year. I don’t like asking my husband to write for me. I recently got a stair rail fitted and my speech isn’t great. Like parenting, MS is a moving feast. You have to deal with every personal challenge. I know it’s not the end of the world.
2. Don’t be strong, just be yourself. I stole this from my MS friend. Whatever works for you, just do it. You read about being a warrior. Fighting. Throw it all out of the window if you want to. Be yourself whenever you got your diagnosis. Be kind to yourself. Apply your lippy if it makes you feel great.
3. The drugs don’t work. My last blog was about drugs. Like the previous point, do what works for you. Drugs. Attitudes. Whatever. Read, get opinions, but go with your gut.
4. Adapt. I got a stair rail fitted and it really helps. I don’t know why I struggled for so long. You may not wish to admit but adapt.
5. Shout! Shout for help and support. I didn’t for ages. Probably due to pride and stupidity. You realise who really counts.
Today is World MS Day, and you can join in with the global conversation by sharing your top tips on social media.
Don’t forget to use the hashtag #LifewithMS to join in!
Happy World MS Day!
The MS-UK team
We wanted to let you all know about an opportunity for MS-UK that we didn’t want to miss!
We are hoping to be TSB Colchester’s charity of the year, and this is where we need your help. Selections will be made on how many nominations the charity gets from the public. Please take a moment for vote for us and ask friends and family to vote too!
Some information that may be useful for the form:
The nominations close at 5pm on Tuesday 30 May.
Thank you for your help!
The fundraising team at MS-UK
There is still time to take part in our latest survey…we would like to know your thoughts about our Helpline opening hours.
We are reviewing whether there is demand for us to extend our hours to provide a service through existing and maybe new channels.
Please take the time to complete our survey to help us to make plans for the future.
Thank you so much for sharing your opinions, they will help us shape this service for the future!
Kim, Ryan and Laura
The MS-UK Helpline team
As this Thursday is the deadline to join team MS-UK for the Prudential RideLondon-Surrey 100, I thought I would share this video from my family to make you smile!
Cycling can be a lot of fun when you are joined by a friend. So, my brother Lawrence and my Dad, Andrew, paired up to cycle around the rural lanes of Tendring in Essex when they were preparing for their own RideLondon challenge in aid of MS-UK.
Little did they know they would be taken over by a peacock, who simply didn’t want to get out of the road!
If you think you’re up for RideLondon and taking on the Olympic route (hopefully without any peacocks in the way!) get in touch with Jenny or call 01206 226500!
In this guest blog, Keith Clayton tells us about his latest challenge fundraising for MS-UK – climbing up Mount Snowdon!
Seven of us, ranging in ages from eleven to seventy three, met at the Peny-y-Pass car park to begin our ascent of Mount Snowdon. We first checked at the Ranger Station to establish weather conditions, which said low cloud, mainly dry, and with the temperature at the summit of one degree centigrade.
We set off up the Pyg Track at 10.00am, with enthusiasm, lots of energy and occasional glimpses of the top of the mountain, which was some five miles and three thousand feet in the distance!
After having stopped for a couple of short breaks we reached the summit at 1.00pm, where we were told the temperature, with the wind chill, was minus seven (it was very cold, we did not stay long !!!)
We began our descent down the Llanberis Pass, where we were able to find some shelter and stopped for a well earned lunch break. With renewed energy we continued down, now able to enjoy the dramatic scenery.
We reached our destination of the Penceunant Isaf (Snowdon Café), just above the village of Llanberis, famous for its coffee and homemade barra brith (Welsh tea cake) and a very warm Welsh welcome at 4.00pm.
It had taken us six hours, with a distance of approximately eleven miles covered and an ascent and descent of three thousand five hundred feet.
A good day, made even better having raised a total of £755.50 for MS-UK!
Want to start your own adventure? Check out our website today to find out more, and help us continue our vital work supporting people affected by multiple sclerosis.
Trishna Bharadia, who you may recall set the stage alight in the first ever ‘People’s Strictly for Comic Relief’ on BBC1 in a four-part Strictly Come Dancing spin-off, has been shortlisted for the We Are The City Rising Star Awards 2017 for the charity category!
Trishna was diagnosed with multiple sclerosis in 2008, and since then has become an award-winning advocate. Trishna, who has appeared in our New Pathways magazine, regularly shares her experiences through charity work, showing people that living a positive life with MS is possible.
Visit the We Are The City website to find out more about the awards and vote for Trishna if you would like to! Voting closes on 09 June!
Everyone at MS-UK wishes Trishna lots of luck!
Laura May, Marketing Manager
Friday 19 May is ‘bike to work day’ in the United States!
Will you be joining our overseas cousins and taking part?
A few of us at the MS-UK office are planning on doing our bit and cycling in from home, leaving our cars behind and reducing down our carbon emissions!
For those of you that cycle in every day and are keen on their wheels, we have an excellent event that is both a challenge and a great way to fundraise for our cause, providing information and support for those affected by MS.
The Prudential RideLondon-Surrey 100 event on the 30 July is a 100 mile race that starts in the Queen Elizabeth Olympic Park, and incorporates the Surrey hills including Box Hill and Leith Hill before finishing on the Mall.
It’s sure to be an amazing event, with cyclists travelling in from all corners of the country and even the globe to take part (hence the American connection!)
The ballot for this event is now closed, but MS-UK has a few guaranteed entries which are still up for grabs if you’d like to bag a place!
This event requires high levels of fitness and participants must be able to complete the route in less than 8.5 hours, so if you’re up for the challenge, do it for MS-UK!
For more information get in touch or give me a call on 01206 226500!
Now – on yer bike!
Events Fundraiser, MS-UK
Friday 19 May is ‘bike to work day’ in the United States! Will you be joining our overseas cousins and taking part? A few of us at the MS-UK office are planning on doing our bit and cycling in from home, leaving our cars behind and reducing down our carbon emissions! For those of you that cycle in every day and are keen on their wheels, we have an excellent event that is both a challenge and a great way to fundraise for our cause, providing information and support for those affected by MS. The Prudential RideLondon-Surrey 100 event on the 30 July is a 100 mile race that starts in the Queen Elizabeth Olympic Park, and incorporates the Surrey hills including Box Hill and Leith Hill before finishing on the Mall. It’s sure to be an amazing event, with cyclists travelling in from all corners of the country and even the globe to take part (hence the American connection!) The ballot for this event is now closed, but MS-UK has a few guaranteed entries which are still up for grabs if you’d like to bag a place! This event requires high levels of fitness and participants must be able to complete the route in less than 8.5 hours, so if you’re up for the challenge, do it for MS-UK! For more information get in touch or give me a call on 01206 226500! Now - on yer bike! Best wishes, Jenny Jenny Poulter Events Fundraiser, MS-UK
This month we’ve got a special fundraiser of the month blog post!
We’d like to honour everyone that has run the Virgin Money London Marathon for us in 2017, you’re all stars and you’ve all earned the title of fundraisers of the month!
This year’s Virgin Money London Marathon team has had some really great fundraising moments, here’s a few that the team would like to share!
‘The 3 Bolands (father and two daughters) combined efforts to reach their £6,000 goal. Our sponsors were therefore all the more willing to give to MS-UK – our goal was exceeded!’ – Giles Boland
‘On the 01 May we did a 5k “Champagne Run” with 30 runners and raised £300 , each runner received a medal , a glass of fizz and cake , it became a truly inspirational run! ’ – Sue Bennett
‘Fran and I were thrilled to make a large sum when Fran organised a Fish & Chips quiz night! We have also been in awe of the many kind donations we have received through collections in town or through the Virgin Money Giving website. Friends, family and to all the kind people…thank you!’ – Chris and Fran Setterfield
‘We raised £4,700 by holding a Horse Race night, which was great fun for all the family. We also held a Thai buffet and wine ladies evening. Everyones generosity was overwhelming.’ – Denise and Brian Matthews
‘I have done several quiz nights in the past for Dumbarton Football Club’s Supporters Trust, so this was an excellent method of raising money for MS-UK ahead of the London Marathon. I was delighted with the turnout of 17 teams, and the eventual sum of £844 which was raised from the night. The fact that Dumbarton won 4-0 at the stadium that day helped as well!’ – Andrew Galloway
‘On Sunday 09 April 2017, we organised a fundraising day at Smudge Hair Salon. We had professional hair stylists and qualified nail beauticians in for the day and offered blow dries and gel nails. We arranged a raffle with prizes such as tickets to Loose Women, a bungee jump and afternoon tea at Harrods. We also had a cake sale and sold cakes at £2 a cake. We made £1,500.50 from selling raffle tickets and the day itself! It was such a success!’ – Victoria Brady
‘The aim of the JAM for MS-UK series of music events was to celebrate Jones & Mar’s friendship and raise awareness of MS amongst younger people. I have toppled my target – putting the fun into fundraising!’ – Marie Martin
‘I raised £185 from a work bake sale and used social media as an opportunity to also raise awareness of MS with facts in the 10 days leading to VLM.’ – Loraine Solanilla
‘Some mates helped organise a charity pub quiz. There were prizes for the winners and we raffled things that were donated too. Was a really fun night raising over £400!’ – James Arnall
And finally we have a few top fundraising tips from Sue Foley for reaching her marathon target:
‘#1 Get social on Facebook, Twitter and Instagram
#2 Share your passion for your cause
#3 Update your online page regularly/write a blog and keep sharing success
#4 Recruit friends to assist at an event, then repay the favour in giving your time
#5 Bag packing in a supermarket for a few hours was fun and rewarding
#6 Always take time to thank your donors and sponsors
#7 Wear your MS-UK vest proudly. The Marathon IS tough but the training is TOUGHER.
#8 Respect the distance
#9 Finish lines not finish times
#10 I had a 26.2 mile party with my purple balloon, raising just over £2200’
Congratulations to all of the MS-UK team who have put so much effort into their fundraising! We’ve said it before but we’ll say it again – you’re all stars!
Inspired to run in 2018? Apply for a MS-UK place now!
Hi everyone, Next week we will be sending out our fundraising e-newsletter, and we wanted to let you know you can subscribe today just by visiting our website. Packed full of events news, top tips and fundraising ideas and inspiration, we send out this e-newsletter once a month. Subscribe today and stay up to date with all of our team news! Best wishes, Nick Nicholas Adams, Fundraising Assistant
Next week we will be sending out our fundraising e-newsletter, and we wanted to let you know you can subscribe today just by visiting our website.
Packed full of events news, top tips and fundraising ideas and inspiration, we send out this e-newsletter once a month.
Nicholas Adams, Fundraising Assistant