Jane Taylor recounts the day her husband Gilby reached new heights
As we all know, multiple sclerosis (MS) is, at best, unpredictable. So, you can imagine when we first dreamt up the idea of my husband, Gilby, who has primary progressive MS, going to the top of Belstone Tor on Dartmoor – it all sounded exactly that – just a dream.
We are very lucky to live in beautiful Dartmoor, Devon, and we can see Belstone Tor from our bedroom window. Gilby sits and looks at it every day and ponders what the view might be like from the top, never thinking he would see it as he uses a wheelchair to get about. Gilby has an all-terrain mobility scooter which gets us tantalizingly close, for example to the local Nine Maidens Stone Circle. From there we sit and have a coffee, looking in awe at that magnificent tor rising above us. However, at 479 metres high, it is out of bounds even for the hardiest mobility scooter.
But neither of us had realised just how awesome North Dartmoor Search and Rescue Team (NDSR) are. We spoke to them via the local pub landlord and they jumped at the chance to help! Their plan was to get Gilby to the top using both a Land Rover and a stretcher. The tor is challenging, with plenty of granite boulders hampering the route up – this was going to be no mean feat.
Plans were made for the assent by the NDSR Team. We had to sort out a few medical issues to make it possible – the team also provided a doctor for the day. That just left us leading up to the day to hope that, firstly, the weather was going to be kind, also that Gilby was going to be well enough, and, finally, that the team were not called elsewhere – not too much then!
We need not have worried. As the day dawned, glorious sunshine spilled over the top of the tor to wake us up from our fitful sleep. We looked out the window and said “today we are going up there.” And what a day it was! So many people from the village and beyond came to support us, both in person and on live stream. It was a day filled with laughter and love, and it was so inspiring as the NDSR Team reached the top after their exhausting climb and everyone cheered.
Reaching the summit
The view was magnificent. As we got there Gilby was so excited – he went that extra bit and asked the NDSR Team to stand him up, in order that, as he put it, he had his own two feet on the top of that tor. There was not a dry eye in the house! A couple of villagers set up a bar at the top and we all had a glass of bubbly. The occasion was capped off by the NDSR Team then carefully carrying Gilby to a granite rock to sit with me so we could cuddle up together to take in the view – awesome! It was the first time in 12 years we have sat on a rock together, and it was a wonderful reminder of our hill walking days of old.
A good cause
As a thank you to the team we set up a Just Giving page to which family and friends gave generously. Then our local BBC radio wanted an interview, which enabled us to promote the page further, together with local papers. At time of writing, we are delighted that due to the wonderful generosity of everyone – the page has raised £5,000 for the NDSR Team, which is fantastic – a small thank you for a big ask!
MS steals so much from us – both MSers and our families. Every day can be a challenge and an achievement in itself. Then days come along when you can amaze yourself and do something you thought was lost. It made us realise we must not stop dreaming. If we keep positive and look for solutions, things do happen. We have both felt we’ve remained on the top of that tor since – on top of the world! Our biggest thanks to NDSR Team for making dreams come true – you are awesome!
This article was published in the latest issue of New Pathways magazine. To subscribe to the magazine click here
This article is taken from the latest issue of New Pathways magazine. To subscribe click here
Wake up refreshed with this advice for a better sleep
We all struggle to sleep from time to time. But getting a good night’s kip is essential for everyone’s health, and especially so when you live with a chronic condition such as multiple sclerosis (MS). Try this tips for a better night’s rest.
The importance of light
Most people would agree they sleep easier in the dark. Just think how easily morning light in the summer months can cause you to wake up at 5am unable to get back to sleep. This is due to your circadian rhythm, otherwise known as your sleep-wake cycle, and it’s directly controlled by sunlight. “Your sleep-wake cycle influences your brain processes and hormone production, making or breaking your quality of rest,” says sleep expert Christine Lapp (www.sleepjunkie.com). “At night, your brain senses a lack of sunlight, triggering the production of melatonin, a sleep-inducing hormone. In the mornings when the sun rises, it tells your brain it’s time to wake up – sunlight hinders melatonin production and keeps your body energised.”
To help re-set your circadian rhythm, try and get as much early-morning sunlight (though easier said than done in the UK sometimes) as soon as you wake up. “This can include going outside for a quick stroll or merely enjoying breakfast in a sunny spot,” says Christine. “At night, keeping lights low and eliminating blue-light from your bedroom can prove powerful in helping you fall asleep faster.”
Blue light, emitted from electronic devices like smart phones, tablets and other screens, tricks your brain into thinking it’s earlier in the day, and so hinders melatonin production. And if all you wake up to is a dank sky and dark clouds, you can try faking it. “Sunlight alarms are becoming more and more popular as they simulate sunrise and sunset on a small scale. These strengthen your sleep-wake cycle and allow you to start your day a more peaceful way,” says Christine. “In more severe cases, a lightbox is required for light therapy. In these instances, it’s suggested individuals sit in front of a bright light for 30 to 40 minutes after waking up in the mornings to keep their internal clock in sync with night and day.”
When you have MS, fatigue can be very real and the need to nap is overwhelming. If you have to take a nap, try to keep it earlier in the day so that it doesn’t interfere with your nighttime rest. “Sleep specialists agree the most opportune time to squeeze in some mid-day shut-eye is around five or six hours after you wake up. However, that’s not always possible on a day-to-day basis,” says Christine. “To play it safe, always plan your naps at least five hours before bedtime. Taking a nap anytime in the five hours leading up to your bedtime can make it harder to fall, or stay, asleep.”
Ditch the drink
It is commonly believed that alcohol helps you sleep, but it actually disrupts it. “The key drawback of consuming alcohol before bed is the reduction of rapid eye movement (or REM) during sleep,” says pharmacist Carolina Goncalves from Pharmica (www.pharmica.co.uk). “REM occurs 90 into your sleep and at this stage you usually have dreams. Therefore, REM disruptions caused by alcohol consumption can lead to lower quality of sleep, leading to potential issues with drowsiness and poor concentration during the daytime.” Experts recommend you have alcohol no later than four hours before your bedtime.
Certain foods can help send you to the land of nod. These include poultry, which contains an amino acid called tryptophan. It helps your body make the feel-good hormone serotonin, which then converts to melatonin, the hormone that makes you sleep.
Yoghurt, cheese and milk are good for calcium, which helps process the hormones that help you sleep, melatonin and tryptophan. Bananas are high in potassium which helps to keep you asleep throughout the night. They also have tryptophan and magnesium which are natural sedatives.
Whole grains encourage insulin production that result in tryptophan activity in the brain. They also have magnesium which is said to help you stay asleep. When magnesium levels are too low, you are more likely to wake up during the night.
Avoiding caffeine in the afternoon can make a huge difference to your ability to fall asleep come nighttime, too.
To fall asleep and stay asleep, your bedroom needs to be serene and comfortable. And comfort starts with the bed itself. “Living with MS can cause stresses and strains to the muscles and joints in your body,” says Carl Walsh, sleep specialist at Bed Guru (www.bedguru.co.uk). “One of the biggest changes you can make to support your body and ease the stress is to swap out your mattress.
“Pocket-sprung mattresses adapt to your body shape whilst you sleep, relieving the pressure on your back and joints. Having adequate spinal support is one of the most important aspects of a comfortable night’s sleep. When your back is in a compromising position, your muscles will tighten, causing stress and pain. Pocket sprung mattresses help to reduce this stress, giving you a comfortable night’s sleep. Alternatively, try an orthopaedic or memory foam mattress.
“Similarly, place one or two pillows between your knees to reduce the pressure on your spine. If you sleep on your back, you can place a pillow under your knees to keep your back straight and comfortably supported. Or purchase a mattress topper as they provide great support, without the need to buy a new mattress. They have been specially designed to provide extra comfort and increased support for your spine,” says Carl.
Getting a good night’s sleep makes a world of difference to how you feel, and with a few tweaks, hopefully you’ll get your eight hours.
You may be wondering what the term ‘spoon theory’ means, and in this blog we’ll explain what it is and how it is useful for people living with a long-term health condition, such as multiple sclerosis (MS) and those around them.
Chronic conditions can come with symptoms that include fatigue, and with MS there are two types of fatigue. Primary fatigue is caused by the demyelination that occurs in the central nervous system, slowing down the messages from the brain. Secondary fatigue can be a result of the other symptoms one may experience from MS. For example, disturbed sleep can be from bladder issues, pain or spasms, or fatigue may be a side effect of medications taken to aid MS symptoms.
Fatigue is more than the tired feeling that most people experience. Day to day tasks can be difficult to complete and is the feeling of exhaustion for extended periods of time. Lifestyle adaptations can be helpful, such as a change in diet, pre-emptive measures ahead of a particularly busy day or vitamin supplementation.
So, what is Spoon Theory? This term was reportedly introduced by Christine Miserando, who lives with lupus, and it was developed to help illustrate to the people in her life how fatigue feels for someone living with a chronic condition. The idea is that people without a chronic health condition start the day with an unlimited number of spoons, whereas someone with a health condition starts the day with a certain number of spoons.
Different activities throughout the day use up the spoons, and once the number of spoons for that day have been used, the only way to replenish them is by resting and getting good sleep. Getting ready for the day may use up as many spoons for as many tasks, for example, showering is one spoon, getting dressed is another. Or, if you wake up from a bad night’s sleep, you might begin with less spoons for the day than you might usually have.
Spoon theory helps the person living with MS understand their own pace and the tasks that they can realistically do in one day, whilst recognising that adjustments might need to be made. It also helps family and friends understand what it’s like to manage fatigue and how it impacts your daily life.
To learn more about MS and fatigue, download our latest Fatigue Choices booklet. From supplementation to tips on daily adjustments that you can make, our Helpline team has put this together for you to access it whenever you need to. Don’t forget, you can contact our helpline team free on 0800 783 0518 or via email at firstname.lastname@example.org.
This week, it's National Curry Week and we've got a warming, hearty curry recipe from the book, Deliciously Ella Quick & Easy: Plant-based Deliciousness by Ella Mills. Packed full of recipes to shake up your mealtimes, this selection of fuss-free ideas will inspire you every day.
Serves 4, with rice
1. Put the coconut oil into a large saucepan with the onion, garlic and celery, and some salt and pepper, and let them cook on a medium heat for 5–10 minutes, until the celery and onion have softened.
2. In a separate pan, wilt 100g of spinach with a splash of boiling water. Once wilted, add half the coconut milk and use a hand blender to blitz the spinach, so that it’s smooth.
3. Once the celery and onion have softened, add the ginger, mustard seeds, coriander, curry powder and cumin. Let the spices toast for a minute or so before adding the puréed spinach, cherry tomatoes, chickpeas and the rest of the coconut milk, plus a big sprinkling of salt and lots of pepper.
4. Turn the heat up so that it starts bubbling, then turn down to a simmer. Simmer for 15–20 minutes, adding the rest of the spinach for the final few minutes. Once the spinach has wilted, add a squeeze of lemon and the yoghurt plus a sprinkling of chilli flakes, if you’re using them and serve.
The marathon has been and gone for another year, and we’d like to say a huge thank you to all our runners from this year’s events! Together, you have raised £154,569. All the money raised will be used to help people affected by multiple sclerosis (MS) to live healthier and happier lives. Without our incredible fundraisers, our services wouldn’t be available to provide the support that so many people need.
If you’re feeling inspired by the marathon fever, why not run it yourself? It’s an incredible opportunity to complete this iconic event in London, or you can even do it virtually from a location of your choice! The ballot is open from 04-08 October or if you’ve missed the ballot, we still have spaces which are going fast. You can apply here and join #TeamPurple.
Why run for MS-UK?
As an independent charity, MS-UK relies on donations and fundraising events to provide the helpline, counselling, magazine and online activities. The MS-UK Counselling service is a one-of-a-kind opportunity for people living with MS to discuss their feelings in a safe space, with a counsellor who is specially trained to understand MS. It is the only specialist service in the UK and completely relies on donations and fundraising to fund it.
Not only will you be supporting the existing services MS-UK provides, by running and fundraising for us, you will be helping to shape the future of the charity. You will have support from us every step of your marathon journey, with our Fundraising team being there to answer any questions you have, inspire you with bonus fundraising ideas, along with regular updates to see you through up until the big day!
On marathon day, #TeamPurple are out in full force to cheer you on along the scenic route through London’s landmarks and you’ll be greeted with a post-race reception, which offers massage, food and a big well done!
Ready to sign up? Click here for the London event application form or click here for the virtual event form. If you have any questions, please contact our Fundraising team on 01206 226500 or email@example.com.