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!
HR Specialist and MSer, Rebecca Armstrong offers her advice...
Rebecca Armstrong has a background in HR and Leadership Development at a Senior Level. She was diagnosed with multiple sclerosis (MS) in 2013 and she now focuses on helping organisations embrace Equality and Diversity in their management practice. She established the Facebook group MS & Work in order to use her knowledge to support people with MS facing challenges in the workplace. Here are her top tips for those who are feeling discriminated against.
You can read more advice from Rebecca regarding disability and work in issue 106 of New Pathways magazine. Subscribe today and get your copy. Contact the MS-UK Helpline for further support or join Rebecca’s MS & Work Facebook group to continue the conversation.
In her second guest blog, Joanne, tells us how her multiple sclerosis (MS) started and how it is being a Mummy with MS...
It all started with eyeliner. I was trying to put some on before going to work. I thought ‘crikey I can’t see very well, maybe I have overdone it.’ So off I trotted to the opticians, who then referred me to the hospital.
My journey began. I was told I’ve got Fuch’s disease, more prominent in people who have different colour eyes like me (I still need to be monitored for this, no, I’m not related to the late David Bowie!)
I started with daily fatigue and weakness in my arms. Googling symptoms, I convinced myself of all sorts including a brain tumour. My eyesight was getting worse. My kindle was my best friend as I could zoom in and read (like all three books of 50 Shades!) I was off work and eventually the hospital told me I had optic neuritis.
The first mention of MS started. Lots of procedures including an MRI (wear socks so you feet don’t get cold is one of my tips) and my spinal fluid was taken twice. A never ending journey of hospital appointments. I didn’t want to believe it because I hadn’t been diagnosed, which came a year and a half later so I spent a lot of time in limbo land. It was frustrating. I didn’t really have a clue about MS. I’m still learning.
As you know, there are many symptoms of MS. Mine have included daily chronic fatigue, pain, weakness ( I haven’t properly written in over two years), numbness, poor balance (falling off my bike was fun, not!) rubbish walking (I now have a stick) slurred speech (no, I’m not drunk, but probably sound it!) swallowing problems, bladder issues (what joy!) smelling of smoke (apparently this is an unusual symptom) and various other things. I was on Copaxone injections before I fell pregnant. I had a really bad reaction and ended up in hospital. I was also on Tecfidera tablets for ten months but came off recently, am waiting for a neurology appointment and debating my options.
My main thing has been trying to deal with being a mummy with MS. I found there isn’t anything that addresses how you look after yourself and a little one at the same time, so I started to write. I’ve been writing for the MS Society, other MS charities like MS Trust and Shift MS and my blog, poorlyparents.wordpress.com.
I’m no expert on mummy or MS stuff. The biggest thing I found helpful is gaining an understanding from others who are in the same boat. I’ve not met anybody like me. Maybe social media will help. Thank you for listening. Here’s to more blogs.
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!
Guests included people who support our work at Josephs Court, fundraising volunteers as well as some of our Trustees! It was a great afternoon, with plenty of cake - all supplied by the Colchester branch of Marks & Spencer, who have nominated us as charity of the year - thank you!
It always amazes us how many people contribute to our work...we simply couldn't be the charity we are today without the hard work and dedication of our volunteers. You can view our afternoon tea party photos on Facebook now.
Best wishes, Jill and Sarah Fundraising Manager and General Manager
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