Nineteen years ago, at the age of fifteen, I was diagnosed with Multiple Sclerosis following episodes of numbness and double vision. When I was given the news I had no idea what MS was and how it could affect my life. After reading up on MS I was scared and found my diagnosis very hard to accept. I recently wrote at length about my diagnosis experience here : (https://stu1989.wordpress.com/2021/05/19/that-day/)

Multiple Sclerosis is the most common progressive neurological condition affecting young adults, with diagnosis generally between the ages of 20 and 40. MS is the result of damage to 'myelin' - a protective sheath surrounding nerve fibres in the central nervous system. When myelin is damaged this interferes with messages from the brain and other parts of the body causing a wide range of symptoms including fatigue, mobility issues and problems with co-ordination. In Scotland, there are around 17,500 people with MS - more people per capita than anywhere else in the world.

There is currently no cure for MS. For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern. For everyone, it makes life unpredictable.

I decided during January 2011 that I wanted to set myself a difficult and meaningful personal challenge. I was very keen to test myself and to raise money for the MS Society in the process so I decided to take up distance running. I became determined to try and create my own positive story.

To begin my fundraising journey I completed five running events to raise money for the MS Society. They were :

1) Inverness half-marathon (13th March 2011) (2 hours, 22 minutes)

2) Loch Ness marathon (2nd October 2011) (4 hours, 58 minutes)

3) Inverness half-marathon (11th March 2012) (2 hours, 6 minutes)

In September 2012, I attended the MS Society Awards in London as a finalist for MS Young Person of the Year. I did not win the award but had a fantastic day and it was a great honour to be part of.

Unfortunately due to health issues I had to take a period of time out from running while I awaited an operation. I had an operation in May 2013 which helped me get back into running during that summer.

After resuming running during summer 2013, I trained hard to be fit to run in the 'Great Scottish Run' which, despite a late injury to my foot I ran in a new personal best time for the half-marathon distance.

4) Great Scottish Run (half-marathon) (6th October 2013) (1 hour, 58 minutes)

In October 2013, I was again invited to the MS Society Awards after being shortlisted in the MS Fundraiser of the Year and MS Young Person of the Year categories. I won the category of 'MS Young Person of the Year 2013' which was a fantastic honour.

A few weeks after the half-marathon I completed my fifth event for MS Society - the Culloden 17.46k around the hilly perimeter roads of the historic Culloden Battlefield, near Inverness.

5) Culloden 17.46km (27th October 2013) (1 hour, 39 minutes)

Unfortunately, during November 2013, whilst training for a marathon, I suffered a significant health setback. I had another operation in January 2014 which did not go as planned and resulted in a very difficult recovery period which to this day I have never recovered from. My health during 2014 and into 2015 was not good due to ongoing health issues (not all of which are related to MS). While I had this forced break from running I worked hard to continue to raise awareness of MS and also raise funds in different ways including holding raffles, coffee mornings and auctioning signed items donated by celebrities and sports men and women which proved very successful.

In July 2014, I was selected to carry the 'Queen's Baton' as part of the Commonwealth Games Baton Relay in the lead up to the Glasgow 2014 Commonwealth Games. An amazing experience.

In October 2014, I was again shortlisted as a finalist in the MS Society Awards in the MS Fundraiser of the Year category.My health has continued to deteriorate significantly. I have discussed some of my difficulties in my WordPress blog (www.stu1989.wordpress.com). I am overwhelmed with physical pain in almost every area of my body. My mental health has fallen and I find myself in the most deepest, darkest depression you could imagine - of which I have attempted to write about in my blog.

In September 2015, I was invited to 10 Downing Street to attend a reception in aid of the MS Society. This was a great honour and I remain truly grateful to be chosen to attend.

In April 2016, I was, once again, shortlisted as a finalist in the MS Society Awards. I won the category of 'Digital Media of the Year 2016'.

During 2016, despite intense pain, I completed the '5x50 challenge' - 5km of continuous activity for 50 consecutive days (on top of my cumulative daily total. Over the course of the 50 days, I walked (and, very occasionally, ran) 307.99km in a total time of 51 hours, 46 minutes. My daily average finished at 6.16km.

Despite my health decline, I attempted the challenge again in 2017 but this time with the aim of continuing the activity for 365 consecutive days. Unfortunately, I had to stop after 169 days due to unbearable symptoms. However, in those 169 from the 1st January I completed 1,100km of 'planned' activity (on top of my cumulative daily total) - an average of 6.64km per day.

On 30th December 2017 it was publicly announced that I will be awarded a British Empire Medal (BEM) in the Queen's New Year 2018 Honours List. The award is ‘For services to the Multiple Sclerosis Society in Scotland’. I remain both humbled and honoured.

During my time out from running, I continued to actively fundraise through alternate methods and also kept raising awareness of MS through social networking. I regularly raise awareness of MS throughout social media, in particular on Instagram @stuartrose and ;my Twitter account @MS_marathon. This, I feel, has really helped raise the profile of MS and also put me in contact with many fantastic people who have been a great support to me.

On 2 October 2021, ten years after running my first marathon for which this page was built on, I walked my own marathon - again for MS Society.⁣ I thought the main reason why I wouldn’t advertise this beforehand was due to the state of my health but I think it is actually my own self-imposed pressure. I didn’t even want a single donation incase my knackered body couldn’t make it around the 26.2 miles. Failing myself, when no one would ever know, would’ve been more than enough.⁣⁣

I’ve been utterly crushed over the past years at my change in identity. I’ve spoken at length at how I cannot cope that I’m no longer ‘the runner’, ‘the fundraiser’, ‘the inspiration’ and how I feel empty and lacking in any value. Every day is an exhausting pressure to show up and keep going with little respite from discomfort. But, for me, there’s a fine line between resilience and stubbornness. How my body will react to pushing myself should be considered more, particularly as I was not well enough to do any real training. But the drive and the ‘need’ gets too overpowering.⁣⁣

Everything I base my worth on is in achievement. I always have to prove myself but it’s difficult to achieve anything that’d make anyone sit up and take notice these days. I hope these things may change that - even for a bit. No matter how I felt (terrible - pelvic/abdominal discomfort, fatigue, headache, fullness in ears, head, heavy legs and ongoing pain in my knees from antibiotics - all before leaving home) I had to do this to try and soften the blow of this ‘special’ day.

I thought that day would be the one of the biggest challenges of my life. I don’t care how cheesy it is but getting to the end of a majority of days since is a bigger achievement. There are many examples of daily achievement in my life but it never meant anything as I had had nothing to ‘show’ that I’m doing my best.⁣⁣

During May 2024, I completed ‘The May 50K’ - a challenge of “walking, running or rolling 50km in May” - with a cumulative 409.2 km (254.3 miles) of walking completed.

I aim to go a (reasonable) walk every day but - within that on the surface positive feat - there’s a sadness to this. The dynamic nature of my symptoms is incredibly distressing and being home sitting, lying or doing *anything* doesn’t help so I get out so to waste time so I’m closer to bedtime. It’s sad, but it’s genuine and it needs that context. Sometimes it’s fairly ‘easy’ and I could continue for some time but other days it’s been enormously physically and mentally draining before I’ve even thought about putting shoes on.

Even though I try get out daily the challenge has motivated me to go that wee bit further and, as I’ve got to the end, that increased; a good feeling and one I’d lost amongst the incessant suffering. In one sense I’m proud at my persistence but, at the same time, it’s deeply saddening for me to feel like I’ve no choice. Again, is it some strange badge of honour that my more able-bodied, marathon-running me wants to cling to? Not sure. But for now, to try feel some pride. I must try remind myself that it’s another example of resilience.

Also, sadly, my brain is such that I feel I *have to* do these things to show people I’m still trying despite no longer being physically able to achieve what I once could. It’s quite exhausting, unhealthy and results in me never being able to enjoy, or even feel satisfied in the achievement. It’s never enough and that’s tough.

Every day I feel hurt of comparing what I used to be able to do and the hurt that I’m now restricted, health wise from this, for reasons unconnected to MS. I continue to try to accept this and hopefully these little bits can help chip away at it.

I know there’s little inspiration in my words, but I hope you can find some in my actions. If you can spare a few quid please throw it in the till. I’d be so grateful.

After an MS diagnosis it can be very easy to shut yourself away and not want to talk about it. When I was diagnosed I felt like this initially but then I gradually became more open with my family and my friends and I feel this support was extremely important. I would also advise anyone with MS to educate yourself on the disease (in your own time) discuss possible treatments with a neurologist as soon as possible, have a good, healthy diet and also to try and take part in some exercise. 

The MS Society depends entirely on charitable fundraising and the support of the public and volunteers to be able to do their work.Any donation will make a difference to the lives of people affected by MS.

Your donation can help in so many ways, for example: 

- A donation of £5 would provide essential information to three people diagnosed with MS.

- A donation of £10 would help provide vital information leaflets about MS and could fund a much needed call to the MS Society helpline.

- A donation of £10 could also pay for physio equipment to help people with MS with their movement.

- A donation of £20 would help fund the cost of someone receiving 24-hour nursing care at the respite care centre.

- A donation of £25 could fund 100 copies of the 'What is MS?' booklet.

- A donation of £25 could also help the MS Society be there for 5 people who call the helpline for support

- A donation of £30 would help towards the running costs of the MS freephone helpline.

- A donation of £50 would contribute to the individual support grant programme that provides mobility aids, adaptations and equipment and could pay for a days training for a volunteer helpline officer, who make sure people affected by MS have someone to talk to.

- A donation of £50 is also enough to operate a high powered microscope for an hour to study cells and tissue affected by MS at the necessary resolution.

- A donation of £54 funds an hour of research into finding better treatments and, ultimately, a cure for MS

- A donation of £100 is enough to process 4 blood samples and extract information about genes and the immune system that is vital when testing out new treatments.

- A donation of £250 is enough to run an MRI scanner for an hour and provide the detailed images of the brain crucial for understanding MS progression. MS Society are currently funding projects that use MRI scanners to carry out trials and understand MS in more detail.

Your donation truly means so much to both myself personally and, of course, to MS Society. Every single penny donated is very much appreciated and MS Society relies solely on charitable donations so please dig deep and support my efforts in supporting this great charity.Thank you so much.

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http://stu1989.wordpress.com

www.youtube.com/stuagainstms

https://spogo.co.uk/community/stories/515035dce4b0c7df47e70f8e

http://www.mssociety.org.uk/get-involved/fundraising/fundraising-blog/I-have-MS-and-I-run-marathons 

http://www.mssociety.org.uk/sites/default/files/Documents/Fundraising%20and%20donating/MS%20Connect%20autmn%202011.pdf

http://blog.justgiving.com/community/top-tips-from-a-marathon-fundraiser

http://www.mssociety.org.uk/ms-support/community-blog/2013/05/world-ms-day-2013-stuarts-motto

http://somecallmejem.blogspot.com/2011/06/running-for-cause.html

http://www.dailyrecord.co.uk/news/health/stuart-rose-reveals-how-running-5853274

https://stv.tv/news/scotland/1405347-elections-expert-knighted-in-new-year-honours-list/

https://www.pressandjournal.co.uk/fp/news/inverness/1383438/inverness-ms-sufferer-and-fundraiser-to-get-bem/