MS Awareness Week is taking place this week (25 April – 1 May) and this year the theme is focusing on the uncertainty around living with multiple sclerosis
MS is an unpredictable condition that affects each individual differently, and can have varying symptoms for everyone. This makes living with MS very uncertain. The MS Society has recently conducted a survey on this very topic and they will use the responses from this to raise awareness of MS and what it means to live with such an unpredictable illness.
They are also encouraging people who live with MS to share their stories, they want to collect as many real-life stories as possible to help share experiences through the MS community. Opening up about your personal experiences of living with MS can be difficult, but it can make such a difference to other people’s lives. Whether you are a parent, a student, a grandparent, an athlete, a lawyer, a teacher, it doesn’t matter what your life circumstances are, your story will most likely be relatable in some way to someone else living with MS, and sometimes that is all someone needs to feel supported and understood.
The MS Society website has plenty of “coming out” stories to help give you the confidence to write your own, so check them out on mssociety.org.uk and consider sharing your story, you never know who it might help.
Finding your people
Belonging to a community can give you a feeling of support and strength. Knowing that other people out there are encountering the same challenges that you are and being able to relate to similar situations can be reassuring and uplifting. Over the last few years online communities for disabled people have developed across the board, from Twitter, Facebook and Instagram, to blogs, forums and dedicated websites. These online communities can provide support, humour and comfort, alongside helpful advice and useful information, from recommendations on accessible venues to advice on sharing your diagnosis with others. With this in mind, we are showcasing some great online personalities to follow, all of whom are living with MS and sharing their experiences online.
It’s a Sh*t Business
Steve Domino started his blog It’s a Sh*t Business, back in 2009, so tosay there is a lot of content there would be a bit of an understatement. Steve was diagnosed with relapsing and remitting MS (RRMS) in 2005, which he describes as putting a bit of a “dampner” on his musical career, alongside growing up and getting older. His posts are wide and varied, but his writing style is humourous and he is open and honest about the topics he discusses around MS. Scrolling back through his blog posts you will find musings on Access to Work, PIP, planning for kids, having conversations with work colleagues about MS and of course the last two years have seen COVID-19 and vaccines crop up quite a lot.
Check out Steve’s blog at itsashitbusiness.blogspot.com to enjoy his clever and witty writings.
Dinosaurs, Donkeys and MS
Heather started her blog in 2016 when she was recovering from a relapse of MS. She is a teacher, actor and MS Society support volunteer. As you can tell from the title of her blog, she likes dinosaurs and donkeys and you will find Dizzy the Donkey featured in most posts, retelling their adventures together and giving tips and advice. Heather shares her experiences of living with MS and covers topics around CBD, teletherapy, life insurance, health anxiety and much more. You can also buy cute merchandise that features Dizzy the Donkey.
Check out dinosaursdonkeysandms.com for tips on living with MS and cute knitted donkey photos.
A 30 Minute Life
Robert Joyce was diagnosed with MS when he was 23, now in his 50s he lives in Ireland has two wonderful children and has run several of his own businesses. In 2014, Robert’s life was changed by a minor car crash that resulted in a return of his MS following 10 years of remission and the added challenge of a consistent headache. His life is now conducted in 30-minute blocks to manage his symptoms. He has been blogging since 2017 and he also has a podcast where he introduces some posts and discusses comments, and interviews various people from the chronic illness community and healthcare arena. Well worth checking out.
Visit a30minutelife.com to read more from Robert Joyce.
Tripping Through Treacle
Jen is a single mum to two wonderful daughters, and she has been living with MS since she was 15 years old. Now in her 40s, Jen discusses how her life has changed and what her new life looks like now, where she rocks a mobility scooter which increases her independence. She openly discusses the benefits she finds from healthy eating, meditation and yoga, while recognising that this may not be right for everyone. Jen also keeps a blog about her HSCT (haemopoietic stem cell transplant) journey, which may be of interest to some MSers. Her blog is enjoyable and relatable, and it covers everything from disability and mental health, to travel and cocktails.
You can red more at trippingthroughtreacle.com.
This is an online community created by people living with MS for people living with MS. It is a social network specifically designed to support thousands of people living with MS by connecting them to fellow MSers. The site provides a platform for people to ask questions, seek advice, share experiences and gain support. They also produce films, by, for and about people living with MS, which tell compelling stories, share real-life experiences and feature world -leading experts. They have a community of over 40,000 people living with MS, so you are bound to find some advice, help, tips and support from this community.
Join the Shift.ms community at shift.ms.
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