Today marks the beginning of Expo, four days of fun-filled excitment at ExCeL in London where runners taking on the Virgin Money London Marathon will be registering this week!
Every year over 100 runners run 26.2 miles in aid of MS-UK, raising thousands of pounds for us. Over 100,000 people in the UK live with multiple sclerosis, and we want to be able to provide our vital services to everyone who needs them, so every single penny they raise goes towards helping MS-UK continue our work.
The MS-UK fundraising team is ready to welcome #TeamPurple to Expo this week, so if you're coming along please say hi to us on stand 583!
Wednesday 18 April 11:00-20:00
Thursday 19 April 10:00-20:00
Friday 20 April 10:00-20:00
Saturday 21 April 09:00-17:00
We'll be live tweeting all week from Expo (and of course on marathon day itself this Sunday) so follow us on Twitter to stay updated!
Jill Purcell, Fundraising Manager
This time next week MS-UK will be celebrating MS Awareness Week, and you can join us!
This year we are spreading the word about our newest national service, MS-UK Counselling. I would love you to get involved by downloading our Twitter and Facebook graphics...by adding them to your profiles you will be helping us reach even more people affected by multiple sclerosis who may benefit from counselling.
Right click on these images and select 'Save image as...' to download them to your computer:
Thank you for your help!
April is always an exciting month for us here at MS-UK as we mark MS Awareness Week, and 2018 is no different!
This year we are celebrating our newest national service, MS-UK Counselling. We launched the pilot of this service in October 2017 and since then have delivered over 150 telephone counselling sessions to people with a diagnosis of multiple sclerosis. But we want to help even more people!
At MS-UK, we believe that it’s good to talk. However, we know that there can still be a stigma around accessing counselling, and we want to break down these barriers so people diagnosed with multiple sclerosis can get the support they need.
So, this MS Awareness Week I ask you to help us spread the message that it’s good to talk! Throughout the week of 23 – 27 April we will be posting on Facebook and Twitter all about MS-UK Counselling, and it would be great if you could help us spread the word by retweeting or sharing our posts. Thank you!
Keep an eye on our blog for updates as we near the big week...
In her latest guest blog Joanne ponders on Christmas, multiple sclerosis (MS) and ‘me time’...
Like many of us, a #christmas #break was on my list but didn’t happen.
For the simple reason, there has been too much going on. The family has been battling bugs (which has made my #MS rubbish), many festivities with late nights, #travelling, #family politics and eating indulgent food. It has all had a toll. All adding up to putting my #writing on the back burner.
Many recent events can be put down to MS. My rubbish #walking (I’ve realised Prosecco doesn’t help, despite it tasting nice), #speech sounds like I’m drunk (I’m not but everyone assumes I’ve had a few!) #spilling drinks (more noticeable at this time of year when transporting from the kitchen to guests) breaking wine glasses which need clearing up (another sign that things aren’t right) and #forgetting important things like turning my Dad’s home upside down as I convinced myself that I’d lost my wedding rings (they were back at home). I’m also contending with lots of pain.
You can say I’m just a clumsy, forgetful cow and despite resting, I’ve probably pushed myself too much, resulting in the MonSter coming out.
Christmas has made me realise how real MS is. OK, so I knew MS was real. There has been lots of tears. Tears because I know this is my reality as I’m so frustrated. Like a well known sports brand “just do it” is what I want to be like, what I was previously to #multiplesclerosis but I can’t “just do it” because of this stupid disease. My body has given up. As that advert says, we are in that Christmas limbo period, when we’re probably having a break before new year. I’m sat in my pjs (it’s 4pm, hopefully no one is coming around), watching Christmas television on catch up and doing very little because I’m exhausted. I’m getting my break now.
So with a #newyear on the horizon, reflection in the air, what do I want differently for #2018:
MS is a daily battle but remember you only have one shot at being you. Tears have come and gone. I will have good and bad days but doing the best I can is the only option.
There’s no magic pill to pop for MS (I’ve been told take this or eat that). Nothing cures, it may help, who knows. Fatigue for me, feels like I’m swimming in thick chocolate (there is probably too much of it at this time of year!) Recharging doesn’t cure MS fatigue but helps. I wrote my tips for managing #fatigue as a mummy with MS for the #MSSociety. I said “MS is like having a battery that can’t be fully charged, so know your energy drainers, those things that just zap the life from you”. Christmas is an energy drainer. But I know next Christmas (or any big event) has to be different.
In my past #writing, I’ve talked about this. I feel guilty for having no energy. I will continue to remind myself to cut some slack, especially as next year comes with more of little man’s milestones. I live with MS, that’s pressure enough.
This links with the previous point. This year has been full of acceptance. I’ve had grab rails, a walking stick, Blue Badge and a EDSS scale of 6 ( I had to google too!) All physical reminders that I’m no superwoman (I probably wasn’t before MS although I thought I was!) Life might be tough but accept all help and adjustment. Anything for a better life.
This year, #stleonardsyork have been great giving me more “me time”. I’ve tried #arttherapy, #laughteryoga and various treatments like #reflexogy. With my weekly stint of #pilates, I will plan in more “me time” for next year. Everyone deserves it. This year, I’ve used writing as my therapy. I will continue to. Thank you to everyone who believes in me. All there is to say, is have a fab 2018. Let’s hope it’s full of love, health and happiness. And sod resolutions!
Today’s the day to do good stuff for charity!
Every year businesses and charities support the #givingtuesday campaign and it’s a day dedicated to doing good stuff for charity. Last year #givingtuesday broke a Guinness World Record for the most online donations in 24 hours, as people gave away $48 million to good causes globally. The UK was the second biggest contributor to this amount.
So, how can you get involved? A simple way to make a difference on #givingtuesday is to make a donation to MS-UK. We’re here to support anyone affected by multiple sclerosis, and your donation helps us ensure nobody faces this condition alone.
Another way to do good stuff is to sign up as a volunteer. We have lots of easy, fun ways to get involved with our work throughout the year, whether it’s supporting a bucket collection or cheering on runners at a national event. Just email me to find out more about volunteering!
Of course we couldn’t let today go by without doing good stuff ourselves, so we’re off to our local Waitrose store to help shoppers pack their bags. Keep an eye on our Twitter feed for photos!
Whatever you do today to celebrate #givingtuesday, I hope you have a wonderful day and enjoy being part of this global movement!
Jill Purcell, Fundraising Manager
Today's guest blog is from Chloe Baxter, who spent last week with MS-UK for work experience in the marketing department...
Hi everyone, my name is Chloe and last week I joined the MS-UK team to do a bit of work experience. I study Business and Globalisation at De Montfort University in Leicester, so naturally it would have made sense to take on a marketing role for the week.
Since leaving school, throughout my A levels and my first year of university, I’ve never had a job that requires me to get up any time before 12. And I was pretty lucky to have a timetable at uni with not too many early mornings. So the first struggle occurred before I even managed to lift my head off the pillow. Fortunately, as the week progressed, I would learn that this is the only struggle I would face.
The role was much more enjoyable than I would have imagined; after being somewhat put off marketing in my first year of uni. This was not down to the content nor my lecturers, but more so my terrible work group that left the majority of the work down to a couple of us. The week kicked off with terminology that I have been learning about since GCSE Business, for example, the trusty SWOT analysis. It was cool to see all of the things I’ve been learning about for so long in the real world of work (and to be reassured that indeed all of this stuff is actually used, it wasn’t all for nothing!).
For sure, I most enjoyed the creative side like designing social media posts and different documents for an upcoming campaign. Alongside writing many a blog, I felt like I was really improving upon my writing skills. Not only that, I felt like I had to write super professionally because it’s for a legitimate business (not that I don’t do that for university), which made me challenge myself and also check over things twice as well.
For the most part, I was introduced to new software that I had never heard of before. That made it interesting, and if I were to come across them for the rest of my uni career or indeed for any career in the future, I would know the general gist of it at least. Like they say – you can’t buy experience, and I’m grateful to the MS-UK team for that! Shout out to everyone I worked with – it was a super sweet week.
A big thank you to Chloe!
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.
This month sees World MS Day (Wednesday 31 May), and here at MS-UK we will be celebrating throughout the day on Twitterand Facebook, to raise awareness of multiple sclerosis and hopefully share some top tips from you!
Got some inspiration for how to handle incontinence? Know a great way to ease neuropathic pain? Whatever your top tip for living life with MS, we want to hear from you!
We will be using the hashtag #LifewithMS throughout the whole day, so do join in!
I look forward to sharing your tips on the day, and thanks for being part of the conversation,
Digital Officer, MS-UK