Our fundraiser of the month this month is Wendy Cole, who ran a 100k ultra challenge for MS-UK on the 27 May!
Hi! My name’s Wendy Cole. In August 2015 I took part in my first 100km ultra challenge, London2Cambridge. I’m a runner who fancied a change, so decided I would walk the route. I enjoyed the experience so much that I decided pretty quickly that I would take on another challenge, this time the London2Brighton 100km challenge on the 27 May, raising funds for MS-UK.
Back in 2014 I was very fortunate to receive a charity place with MS-UK in the Virgin Money London Marathon and found them so supportive prior to and during the race that it was a pleasure to get the opportunity to raise funds for them again.
I lost my Mum in 1997 at the age of 50 to Primary Progressive MS, so this is a cause very close to my heart and it’s great to be able to raise awareness of this disease and the work MS-UK do, supporting those affected by MS.
So, in July last year I signed up for London2Brighton in memory of my Mum. I knew I’d completed the distance before but also knew that this challenge would be much hillier. Too right it was!!! There’s a particularly huge hill at 88km, just where you don’t need one.
Again I decided to walk this ultra. I’ve run 11 marathons and 32 half marathons and found walking with a full rucksack quite different from running. You’re on your feet much longer, which is tiring, and you’re using different muscle groups, so ache in different places.
In the lead up to the big day, my training consisted of running three marathons, Brighton on 09 April, London (guide running with a visually impaired runner) on 23 April and Stratford on 07 May. I wouldn’t necessarily recommend running three marathons in five weeks!! I also walked the canal route from Worcester to Birmingham (28.4 miles) two weeks before the challenge.
At 8am on Saturday 27 May I set off from Old Deer Park in Richmond with just over 1500 other eager participants taking on the full challenge. The heavens opened just 0.6 miles from the start, but the rain stopped by the time we’d got our macs out. It was then dry for the remainder of the challenge. We walked day and night, on road and off road, over numerous stiles, taking in short refuelling stops every 25 kms or so at the checkpoints until we reached our final destination at Brighton Racecourse at 7.06am…still smiling, and for me, blister free.
I’m delighted to have exceeded my fundraising target of £300 and would like to thank Nick Adams from MS-UK for regularly making contact with me, offering support and generally seeing how my training was going.
My recovery’s been good. Two days after the event I felt pretty normal again and even managed to wear a kitten heel to work!!
I often wonder what my Mum would think of me now. I was a total couch potato until I hit the age of 40, so she has never seen any of these achievements. She’d probably think I was bonkers!!
Anyway, time for a little rest now…until the next challenge. I’m running New York Marathon in November and Tokyo Marathon in February, so will have a few weeks off over the summer until training starts again.
As part of Carers Week Mark gives his account of caring for his wife, Portia with multiple sclerosis...
Portia and I met at university, where we were studying architecture and landscape architecture. We were married in 1998 – around the same time Portia was diagnosed with MS.
You can’t anticipate what a progressive condition such as MS will be like. It’s different for everyone. We have had long periods of managing fairly well – including having our three children who are now aged 15, 12 and 10 years old.
There have also been periods of relapse. Day to day you don’t really notice the changes, but you look back over the years and can see how the condition has developed. 2014 was a particularly bad year, Portia spent a lot of time in hospital and we had the shock of finding out she had also developed epilepsy. It was a steep learning curve.
I’m an architect, and while my workplace has been very good at supporting me there have been difficult, uncertain times – especially when I’ve had to have unplanned time off while Portia has been in hospital. You know you’re not the first person to go through this, but it can feel that way.
Last year I set up a Carers’ Network at work which now has 150 members – including people who are caring now or have in the past, as well as people preparing for what could happen in the future. The best thing has been the opportunity to share our experiences and pool our knowledge. There’s always someone you can ask ‘How did you find this?’, ‘What can I do in this situation?’.
Portia and I are a great team, and we’ve always found a way round any challenge we’ve been faced with. Portia loves learning and is currently part way through an Open University course in Psychology and is training as an Art Therapist. MS may make the practicalities more difficult, but it doesn’t stop you living your life.
Celebrate Carers Week
This week is Carers Week. The annual awareness campaign celebrates and recognise the vital contribution made by the UK’s 6.5 million unpaid carers. The aim is to build carer friendly communities, places where carers are supported to look after their loved ones well, while being recognised as individuals with needs of their own.
Carers Week is a time of intensive local activity with thousands of events planned for carers across the UK. If you’re looking after someone, make sure you find out about the help and support available at www.carersuk.org.
For more information on providing care and getting the right support, read our 2-page feature in issue 103 of New Pathways magazine.
In this guest blog, Gemma tells us why she is running the British 10K 2017 for MS-UK...
Hi my name is Gemma, and I’m going to be taking part in the British 10K 2017 for MS-UK.
In April 2005 I met James. From the moment we met we just clicked as if we had known each other for years. There and then I knew I had met my best friend and the one I wanted to spend the rest of my life with and we have been together ever since.
In December 2006 I finished work as usual and walked home to get dinner on, ready for when James arrived home from work. When he stepped in the door I noticed that half of his face had dropped. At first I thought he had had a mini stroke!
While we waited for the taxi to beep that it was here, to take us up to A&E we discussed what it could be. ‘MS’ James said. His mum passed away when he was 9 years old. She had MS and was bed ridden. She had pneumonia and was not strong enough to fight it when she sadly passed away.
At the hospital he was told that he had to stay in over night to be monitored to then have an MRI test in the morning. I had to say goodbye and that night I stayed with my in-laws.
In the morning my phone rang. It was James. I answered it and he was just sobbing. At first I couldn’t make out what he was saying. ‘Demyelination’ he said. ‘What does that mean?’ I replied. ‘MS’.
That was the day our life changed for ever. At first we thought it was a death sentence. But it isn’t, it just means that you have to grab hold of life now!
In November 2007 we had our first child, a beautiful baby girl. But James was struggling at work. He is a fully qualified chef and has a passion for food. But little did we know that the heat/stress of the kitchen was flaring up his MS. So he went into butchery the following year but this also became difficult too. This was hard for me to watch.
In September 2009 we had our second child, a handsome baby boy. Our family was complete but James was now having 3-5 relapses a year. He was told to give up work. Every time he got over one e.g. loss of legs, sight. Another would hit him. I was now not working, to care for him too. He was also now on beta interferons injections. These were very painful and didn’t seem to be slowing the disease down, this scared me.
In August 2010 we moved from Norfolk to Hertfordshire. New doctors, new neurologist, new MS Nurse, it wasn’t easy. The relapses were still happening violently, especially on his left side.
In June 2011 James started Natalizumab (Tysabri) infusions every 28 days, these have been working, thankfully he hasn’t had a relapse since starting them.
It’s now 2017 and for the first time I feel like we have got this. Don’t get me wrong it’s still a massive hurdle in our life and there are good days and bad but you just have to try your best to adapt, to find a way to try and be a so-called ‘normal’ family.
I am doing this run now as I feel the time is right. James is my hero, he never moans, he just takes it one day at a time. I’m so proud of him and the way he handles it. Now it’s my turn to make him proud and be his hero.
I also want to show our children if you put your mind to something you can achieve anything.
In this guest blog, Chloe Metson reflects on Mother's Day and what that means when you have young children while living with multiple sclerosis at the same time. You can check out her blog, Tantrums and Tingles, online today for more too!
Mother’s Day is upon us, and it’s the time of year when I reflect on how lucky I am.
I’m the mother to two beautiful children, but it hasn’t always been the easiest ride.
I was diagnosed with MS when I was 18 years old, which really put a spanner in the works when it came to making future plans. Back then I didn’t have access to the information I do now, so I felt very much alone. The future seemed daunting and scary.
With that in mind, I couldn’t even imagine having a family and being strong enough to cope with everything motherhood throws at you. How would I be able to cope with labour when I was so fatigued? How could I cope with night feeding? Broken sleep? And even just physically carrying a child all the time? It seemed terrifying to say the least. So for years I resided myself to the fact that I would never be a mother.
It’s only when I reached my late twenties that me and my husband decided to take the plunge and start a family. All of the doubts were still there, but the thought of never being a mother gradually overtook any fears I had. And I’m so glad we did it.
It’s very tough at times, and my MS undoubtedly gets in the way, but in those early days I was amazed at how much my body adapted. Of course I was still fatigued, but I coped better than expected, and with help and support we found a way around it. I rested whenever I could, and though we didn’t get out much and socialise, I was content that we were doing what was best for us.
For all the tough times, motherhood is one of the most rewarding experiences I will ever have. I remember the overwhelming pride I had in myself for just getting through labour, and delivering this beautiful creature into the world safely. I knew it was going to be tougher for me as a Mum, but because of this even the smallest achievements had a greater significance for me.
I never think of Mother’s Day as being a celebration of me as a Mum though, but rather a time to thank other mothers for their help. My own mother. My mother-in-law. My friends and family members who are mothers. They help to take the strain when things become too much, and we stick together as a family. I want to thank them because they make coping with two children a joy instead of a worry. I truly couldn’t do it without them, and they make me the mother I am today. A happy mother who, despite the MS, feels confident enough to deal with the challenges motherhood brings.
In the latest issue of New Pathways magazine, we caught up with Katie Ellis, former fashion buyer and founder of The Able Label. Here’s a sneak peak of our interview with Katie...
For those who want to remain independent and maintain their style, the Able Label hopes to offer a new solution. Founder Katie, previously a fashion buyer for the popular lifestyle clothes retailer White Stuff, saw first-hand the difficulties her grandmother faced dressing each day with Parkinson’s so decided to do something to help.
Offering “beautiful clothes, designed to make dressing easier”, Katie aims to offer a range that is not only suitable for those with Parkinson’s, but the thousands of women who also face difficulties dressing. Whether due to restricted movement, lack of finger dexterity or cognitive difficulties, the stylish clothing is designed to help.
“Able Label is a range of beautiful clothes, designed to make dressing easier.”
Katie is determined to ensure attention to detail is at the heart of The Able Label – think quality, comfort and style but with the added benefit of being easier to dress. All styles are made from quality, natural fabrics making them breathable and super soft next to skin. Most contain elastane, which gives extra stretch and makes it easier to get on and off, also making them more comfortable to wear.
“The ‘EasyFasten System’ means you simply need to match the coloured hook and loop touch fasteners; red to red on the right, lime to lime on the left and you are good to go!” Katie explains.
“The collection is designed to help both individuals wanting to maintain independence as well as carers assisting with dressing – making it quicker, easier and safer.”
Find out more...
Prices start from £25.00 and as the range has been specifically designed to make dressing easier, it is eligible for VAT exemption.
All styles are available in sizes S(8-10), M(12-14), L(16-18) and XL(20-22) as standard with some also available in XXL (24-26). Trousers are available in a regular and short leg lengths. An alterations service is also available so should you require any adjustments, they can be completed before the order is dispatched.
My name is Louise and I decided to set myself the challenge of 5km every day in December for MS-UK. The idea came to me in November when I was in bed for a week with the flu!
As a regular runner I was bored and fed up with not being able to run, I am not sure what part of me thought such a running challenge only a few weeks later would be a good idea! My Father was diagnosed with multiple sclerosis (MS) when I was just five years old, so 29 years later, I decided it was time I do something for an MS charity. I chose MS-UK because when reading what they do and what their aims are, it made me realised how much it would have helped my family if they were around at the time my Father was diagnosed.
I usually run 3-4 times per week and have never run more than five consecutive days in a row. I did not intentionally train for the event as I ran a half marathon in October and had, apart from when I had the flu, continued running since then but I suppose you could say I have been training since I started running two years ago! I really didn’t know how my challenge would be received. When I started my fundraising web page I did not put a target as I really did not know what to expect but as soon as I told people what I was doing, I was overwhelmed by the support and sponsorship I started to receive.
The challenge as a whole went well but there were certainly ups and downs! I work fulltime and have a four year old daughter so to fit the runs in I did the majority around 6am, which did start to take its toll after a few days!
I documented each day with photos and the number of the day on my hand, which had its challenges, such as working out what way to write the number to ensure it is not backwards on the photograph! The first ten days ticked along well but then my body decided to make it even harder for me by developing a rotten cold and cough thereafter. It isn’t sensible to keep running when you have a cough but I was keeping the pace steady and 5km is not a particularly long distance so I managed to carry on.
Day 17 was a highlight for me. I took my daughter with me for the first part of my run and she managed a whole mile! She enjoyed dressing in some of my running gear and having number 17 written on her hand! She loves her Granddad and enjoyed doing her run for him.
She did spend the next five days complaining of achy legs and so perhaps in hindsight a mile was a bit too long! Day 23 was slightly hampered by being the day after the office Christmas party! Just like not running with a cold, I do not think you are meant to run with a hangover either! Whenever I told people about my challenge they responded in surprise “what, you’re running Christmas day too?!!!” The Christmas day run went well, I got it out of the way at 6am and did quite a quick time so I could get back and check Santa had been. The last week was certainly tricky as my legs decided they wanted to run no more but finally, 31 days later, I made it! 5km x 31 days would have been 155km or 96.1 miles, so deciding that wasn’t enough running I set myself a secondary aim of running at least 100 miles.
In the end I managed 100.1 miles or 161 km and I must say I was rather pleased with myself!
Completing this challenge made me realise how many people will get behind you and support you if you are doing something a) to push yourself and b) for a charity. I was surprised how many people had a family member who has MS or who knows a friend who does, which was another reason why I believe I received so much support.
I certainly have the fundraising bug but I think I will do something in the summer next time!
Today we publish a Guest Blog article from Mary Ellen Ziliak about how she coped with the challenge of being diagnosed with multiple sclerosis.
If you would like to write an article for our blog please contact email@example.com.
You can view the guidelines for writing for us online now at www.ms-uk.org/ourblog.
No one has the luxury of living without the occasional life challenge. Challenges are diverse and rising above them demanding. But to live well and expand our territory beyond the challenge, reveals our character and can lead to unexpected joy.
1998 delivered my biggest life challenge, multiple sclerosis (MS). Being an RN did not spare me feeling my world had been turned upside down. Frequent relapses and treatment side effects made the early years difficult. Depression intertwined with losses of job, paycheck, and self-identity. A decade of asking, “What now?” was black with the overbearing shadow of MS.
Gradually, knowledge, discernment and the passage of time allowed light and hope to return. Along my stumbling journey I discovered MS could be a presence in my life but need not claim its center. A newfound philosophy emerged and I dubbed it “Open your Red Door!”
“The Red Door” is a painting I did of a large, weathered, door on a centuries old church in southwestern Indiana. Age has faded the red paint and splintered the wood. Over-sized black wrought iron hinges and placement on a corner turret lend a sense of mystery and intrigue. At first sight, the door beckoned me to take a closer look and to capture it’s essence on canvas.
The painting grew to be symbolic of my life challenge with multiple sclerosis. Like the Red Door, MS is mysterious, powerful, splintered, heavy, and no one knows what lies beyond. Opening the door may elicit angst, fear, sweat, and tears. Walking through it musters courage and guarantees adventure. Behind the door one might find a pot of gold or a pit of snakes. No one knows.
What I do know is to live life well with MS, I must choose the daunting entry. I must have courage to push the Red Door wide open, to cross the threshold of acceptance, to face my challenge head-on, to allow myself to find good on the other side of bad.
I am strong enough. I can cross bloodied and bandaged, groping my way through the doorway, as I believe healing awaits me on the other side.
Challenges are a part of living. What we do with them defines us. Opening my Red Door has empowered me to embrace change and try new things: becoming a published author, international speaker, half marathon runner, and an MS Certified Specialist. Not everyone will find my methods palatable, but I share my simple thoughts hoping they might resonate with one reader. So, whatever your life challenge, I cordially invite you to, “Open your Red Door and live life well!”
Find out more about Mary on her website at www.openyourreddoor.com.