Santander to Santiago de Compostela here I come! Mustard Soup’s Simon kicks off fundraising with Solo Sponsored Cycle in Spain
M eet one of our Trustees, Simon, who also has the good (or bad – I can’t admit to always having been as angelic as I look now) fortune of being my Dad.
As well as being my biggest inspiration in life I have to share something else with you. He. Is. Awesome.
Firstly, he is 70. Secondly, on the 1st September 2016 he will cycle 550km across Northern Spain from Santander to Santiago de Compostela to begin the fundraising effort for Mustard Soup.
T he route is gruelling and follows the mountain paths used by pilgrims since Medieval times to travel to Santiago where it is believed the bones of the Apostle St James were buried. Simon will need to ride an average of 79km per day over 7 days, allowing himself 1 rest day mid-journey, if he is to achieve his target of arriving at Santiago on 8th September. With combined ascents of 6,940 metres across the entire route this is not a cycle for the faint hearted!
Now there’re only 2 weeks to go Simon is ramping up his training schedule …
“Despite spending a few days in London I have managed about 93 miles this week, of which 42 miles were today. I think I am now fully equipped but I’ll find out next week during my final preparation ride. On Monday I am biking from Thetford to Wells Next the Sea (49 miles) staying in a hostel and biking back the following morning. The idea is to have a dummy run and see how I cope with 2 big days on the trot. The way I have planned the bike ride at last is to have 3 days of about 50 miles, 2 shorter days and then 2 days of just over 50 miles to finish.”
A nd why is Simon doing this? Well, he’s seen first hand what MS can do to a person and their family. And he’s seen the good that Mustard Soup has done for people like me, and many others. I was diagnosed with Multiple Sclerosis at the age of 34 in the prime of my life and career when I was buying a home and planning to start a family. It was devastating. It was scary suddenly during a business meeting one day to lose my vision, my balance, use of my legs and not even be able to use the toilet unaided. Within the time it took the doctors to utter 2 letters – MS – our lives had changed forever.
MS meant total re-evaluation of life as I once knew it and, as I then thought, a future of almost certain loss of independence. It was isolating. I was unable to leave the house or socialise, and stuck at home terrified about what the future may hold I became anxious and depressed.
Like many when first diagnosed, I desperately searched the internet for something to give me a little bit of hope. Nope, nothing. I sat turning over and over in my head thoughts like, “MS is apparently the most common disabling neurological condition to be diagnosed in young people aged 18-30, isn’t it?” “Where is everyone?” “Sitting at home alone like me?”
Then I discovered 3 people in Norwich via Shift.MS, an online community. A former colleague put me in touch with Kate (now one of our trustees). My neurological nurse passed on details of others. We all met and Mustard Soup was born! Since our very first meeting we have continued to grow and bring together many young people living with MS in the Norwich and Norfolk area.
W hen life throws you lemons you make lemonade right? And that’s exactly what we have done as a group – and it is most definitely a group effort! The thing you will most commonly hear uttered at a get together? “It is SO nice being able to talk to someone in the same situation!” People with MS have come together, partners of people with MS have come together, parents of children with MS have come together and children of parents with MS have come together – we are a family who understand each other, who can guide and support each other through each challenge the condition presents and who inspire each other to continue to live life to the full.
Nick, one of our service users, said, “I have made many new friends through the group, mainly from the social evenings … Mustard Soup has pulled together people from the younger MS community, which is vitally important for people, especially young MS warriors to socialise. MS can be a very isolating condition. Without the friendly vibe of Mustard Soup, a lot of people would be alone, as many are uncomfortable visiting new places.”
And through our social events people have been able to find support during their treatment at hospital … “Had another infusion today with E next to me! Lovely to see a friendly face … Literally makes my day seeing people like me and just being able to talk to people that know what it’s actually like.”
O ur next meet up is in September plus trips to London to meet another group of young people with MS and attend MS Life 2016, the biggest MS Lifestyle event in Europe. October brings a very exciting Digesting Science course run by Queen Mary’s, University of London, to help our children aged 6-12 understand more about MS. We are active on Facebook, Twitter and Instagram to enable people to be in touch online, and plan to launch a telephone helpline in the Autumn with access to a qualified counsellor. All funds raised will enable us to expand our service and reach out to many more of the 5,000 people newly diagnosed with MS every year.
I asked Dad if he’d discovered any other benefits to taking on this crazy challenge for us?
“Well, I have lost a stone and a half now and feel a lot fitter. And my joint aches of last winter have gone completely even though I have a bit of a butt ache!”
And the third reason my Dad is awesome? He never gives in, has never once given up on me and has always believed in me. Love you, Dad – don’t forget the padded shorts!
P lease support Simon in his challenge and donate to Mustard Soup by clicking the donate button below