James and Lianne Carvell were inspired to set up Monkey Sox, a community interest company raising funds and awareness for multiple sclerosis, following James’ diagnosis in 2016. We caught up with the husband and wife team to chat about James’ journey with MS, the importance of raising awareness, and how Monkey Sox has given the couple a new way “to think and feel about MS”.
Hi James and Lianne. James, can you tell us about when you were diagnosed with MS and how you came to terms with your diagnosis?
I was diagnosed with MS on 29 July 2016. I will never forget the moment, feeling sick, uncertain, scared and lonely. I was initially really reluctant to talk about MS, I just didn’t know how to. But over time talking has been really key in helping me come to terms with living with MS. I’m a big believer in not hiding how you are really feeling, whether that’s to friends, family, team mates, medical professionals, anyone! I’ve always done a lot of sport so exercise has been another huge help, it gives me time to think, reflect and on days when I’m feeling tired or low even a 10 minute swim really lifts my mood.
Can you tell us about the main symptoms you experience day to day?
Big things are blurred vision, leg weakness, foot drop and insomnia. It’s my right side that has taken the hit! I’ve tried everything for the insomnia. I am currently replacing sleeping pills with more exercise and good sleep hygiene; hopefully it does get easier.
How has being diagnosed changed your outlook on life?
Living with MS has made me reassess and value even more the things that are most important to me. It has made me appreciate everything and everyone around me, from a friendly chat with the coffee van man on my morning commute, to smiling at a stranger on the street. I worked for five years as an anaesthetist and loved the environment in theatres. The pace, the focus and reacting to emergencies as a team. I made the decision to switch to general practice around a year after my diagnosis and I’m now a GP registrar. It was a big change at first, but with time, along with my outlook on life, my outlook on my career has also changed for good. I now enjoy a different focus, of helping people with their long-term health, combining medical treatment with lifestyle changes. If I can listen to patients and impact their life whilst also helping others living with MS then I’d love that.
What do you think is the importance of raising awareness of MS?
Like a lot of other people my diagnosis took some time. I had various symptoms and knew something wasn’t right, but I kept putting it down to a bad day at work or the fact I hadn’t slept well or hadn’t eaten well. With more awareness people could get diagnosed earlier and access the great number of treatment options and make changes to their lifestyle sooner. This could make a huge difference to their care and how they feel in the long term. My MS nurses are also fantastic, and I hope that increasing awareness leads to more funding so that everyone living with MS can benefit from their support and care. Finally, a lot of the general population don’t realise that people are commonly diagnosed in their 20s and 30s. I think raising awareness of this is really important in changing perceptions of a life with MS. People are diagnosed young but with the right support a diagnosis of MS can be life changing but not a life sentence.
Both of you took on the Asics 10k for the MS Trust earlier this year. James, how has staying active helped with your MS?
Staying active has massively helped! My symptoms first started to show when out running. I would trip on pavements and struggle to see. I still find running the most difficult, but I won’t give up! Now that I know MS is the cause I know I can still do all my sport but I give myself time to recover too. Not only has my sleep improved, exercising has given me more energy on days when I’ve felt so tired. When I go for a swim I have time to think alone, and when I go on a group cycle ride I am always boosted by the social side of sport. I love Saturday morning parkrun and entering events with friends. It’s great to have goals. Last year I was so proud to get the London Classics medal for completing the London Marathon, Ride 100 Cycle and Swim Serpentine. I’ve always loved triathlons and a few years back did an Ironman, something I thought I’d never do again. But this year I completed Blenheim Palace Triathlon, my first triathlon since my diagnosis. Now I’m planning another….like I said, goals are good, so there is always an event in the diary!
What would be your advice to someone newly diagnosed with MS?
Talk, talk, talk! When I was first diagnosed it took me a while to discuss with friends, family, nurses, doctors and others with MS. The moment I felt able to, it felt like a massive weight lifted off my shoulders and made coping with everything much easier.
Living with MS has made me reassess and value even more the things that are most important to me. It has made me appreciate everything and everyone around me
Let's talk Monkey Sox! What was the inspiration behind it?
I set up Monkey Sox with my wife, Lianne. We wanted to put our doctor + designer heads together and find a way to react positively to having MS in our life, whist raising awareness and money for charity. The result was a range of colourful Odd Sox, representing how the body acts and feels different left to right for those living with MS.
How has setting up Monkey Sox helped you both deal with the diagnosis?
Initially we wanted to raise money for charity by donating 50% of our net profits equally to the MS Trust, MS Society UK and MS-UK (the other 50% is reinvested into the company). Monkey Sox has just had its 1st birthday and we’re really proud to have donated £6000 over the year. But what we didn’t expect when we started Monkey Sox was the ripple effect it would have, and all the conversations that would open. We’ve met so many inspiring people that are living with MS themselves, or have a connection through family or friends. We are talking everyday about MS, but in a new and positive way and it’s made us both feel more supported and in control.
What kind of feedback have you had from people with MS?
Monkey Sox has given us a new way to think and talk about MS and feedback from others is the same. We’ve heard from people newly diagnosed who feel it is easier to share their news by sharing the story of Monkey Sox. One favourite story is a lady who always wears her Monkey Sox to her treatment and MRI appointments, she says they always keep her smiling and more relaxed. Many people are buying our casual, childrens and sports socks, both for themselves and as gifts. In the sports world, people are setting personal bests and even competing at World Championships in Monkey Sox! They really are go faster socks!
Tell us about the collaboration with the MS Trust. What can people expect from the new design?
We’re really excited about this project with the MS Trust! The design (see picture on the right) combines our monkey face on one foot, with the MS Trust duck mascot on the other. In true Monkey Sox style the socks are odd, with stripes and spots! They are a sports style to co-ordinate with the MS Trust team kit for all running, cycling and walking events. We can’t wait for the launch, and the full 50% profit will be donated to the MS Trust.
With Christmas approaching, tell us why a pair of Monkey Sox would make a great gift?
Monkey Sox put a smile on everyone’s face! Not only are they a great way to talk about MS, they brighten up the day with fun colours and designs AND we donate from every pair so you are supporting new research, funding and lifestyle help for all those affected by MS.
What are your hopes for the future?
Ultimately we hope and wish that a cure will be found for MS. Medical and lifestyle advances have changed so much in recent years that living with MS does not mean the end of hopes and dreams. We hope that Monkey Sox can inspire people to stay active, if they are living with MS or not, and of course the more people that are wearing Monkey Sox the more we donate and contribute to a future free of MS.
