Fifteen 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.
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 the myelin - a protective sheath surrounding nerve fibres of 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 10,500 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.
I have now participated in five events to raise money for the MS Society. They are:
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 the summer of 2013.
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. 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.
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' - a fantastic honour.
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 due to several complications. 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. There has been no MS progression on any of my MRI scans for many years yet my health continues to fall. EMG tests, nerve conduction studies, rheumatology referrals, endocrinology assessments, deep vein scans are just some of the investigations which have been completed yet there is still no idea of the cause of the significant regression in my health - in particular the lack of feeling in my legs. In addition to this I underwent a muscle biopsy in August 2017 and, due to abnormalities being found I await an appointment with Genetics. 'Myotonic Dystrophy' and 'Limb-Girdle syndromes' being mentioned. 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 New Year 2018 Honours List. The award is ‘For services to the Multiple Sclerosis Society in Scotland’.I am humbled and honoured.
You can also now donate to my fundraising page using JustTextGiving. Just text MSSR89 to 70070 followed by the amount you wish to donate. e.g to sponsor me £5, text MSSR89 £5 to 70070.
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, 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.
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. Also, as I said above, acceptance of MS is vital in helping you look forward. This took me many years but was a huge step in helping me to progress with my life. I would also advise anyone with MS to discuss possible treatments with an MS specialist nurse, have a good, healthy diet and also to try and exercise. Exercise, in particular, has been extremely beneficial to me.
The MS Society depends entirely on charitable fundraising and the support of the public and volunteers to be able to do their work.
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 £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 £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 £54 funds an hour of research into finding better treatments and, ultimately, a cure for MS
Thank you very much for your support to this fantastic cause. Your donation truly means so much to both myself personally and, of course, to MS Society Scotland. Every single penny donated is very much appreciated and MS Society Scotland relies solely on charitable donations so please dig deep and support my efforts in supporting this great charity.
Your support can help change lives.
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