Adjusting to being diagnosed with an invisible illness can be really tough. I have bad days, but with the help of amazing family and friends it’s a whole lot easier. If you know someone with an invisible illness, you can help. The problem is, sometimes it’s difficult to know what to say or do. So here are my top tips!
If someone confides in you that they have a condition, they’re giving you a licence to talk about it. Thank them for being open and then ask them how it affects them. It means a lot when someone asks questions to understand the condition more, rather than just trying to avoid the subject. Find out from them what they need from you to help them day to day. Chances are they don’t want to be treated any differently, but there might be something that you can do to make their day easier.
2. Check in!
I go totally off grid when I’m struggling to cope with my condition. I become withdrawn and you won’t hear from me for days. At some point, someone will notice that this is a bit out of character for me and check in. I’ll admit that I’ve not been ok and they’ll tell me that they are always there for me if I need to have a moan or sound off. Thing is, when you’re in that space, it doesn’t always occur to you to do that. Make sure you drop your friend a regular text to let them know you’re thinking of them.
3. Cut some slack
It’s typical that someone with a chronic condition suffers with some degree of fatigue. That means that even the best laid plans can go wrong if they’re just too tired to function. Be forgiving if they’ve cancelled that night out for the third time in a row.
4. Don’t assume
Every day with a chronic condition is different. Some days you can take on the world and on others you can’t get out of bed. Avoid making assumptions about what your friend or family member can do. Don’t stop letting them make their own choices and keep on inviting them to social occasions. Sometimes they will accept and other times they might politely decline. But they will always be grateful that you have let them make their own choices.
5. You don’t have to find a solution
With all the best intention in the world, we want to solve people’s problems. But if the top doctors can’t find a cure for the condition, it’s unlikely that you’ll be able to provide a solution yourself. If they want you to give a solution, they’ll ask for your opinion.
Ultimately, the best thing you can do is make sure that person feels loved and cared for. They need to still feel like a person, and sometimes the best way of doing that is by doing absolutely nothing differently. Nobody with a chronic condition will manage day to day in the same way. The only way to find out, is to ask.
If you would like more information about living with multiple sclerosis (MS) you can download our Choices leaflets for free.
GFM ClearComms is getting into the festive spirit this year by launching a ‘12 Days Till Christmas’ charity campaign, whereby every day from 13 December up until Christmas Day we will be holding a charitable event in aid of a different UK based charity.
To kick start this campaign the company has decided that rather than sending out Christmas cards, as they always have done in the past, this year they will be sending out ecards and then donating the money saved from not sending out actual cards to the Essex & Herts Air Ambulance.
Bringing the campaign to an astounding conclusion on Christmas day, Justin Stone, Contact Centre Manager at GFM ClearComms, will be walking a staggering 55 miles from Colchester to London to fundraise for mental health charity Mind. The other charities that were chosen by members of staff to receive donations include MS-UK!
“We are proud to provide a variety of UK charities with our contact centre, marketing and fulfilment services; however, our interest in the charities we support goes beyond just working with them and we have and will continue to hold events like this to help these great causes. Everyone at the company is really excited for this campaign to start and looking forward to 12 days of fun activities and festive fundraising leading up to Christmas,” says Rachael Willis, CFO at GFM.
To find out exactly what the company will be doing each day of our ’12 Days Till Christmas’ charity campaign check out our website and social media channels where we will be revealing the full details of each event daily in an advent calendar style fashion!
The 25th anniversary issue of New Pathways magazine is out today. As you hopefully know by now, 2018 is MS-UK’s 25th year as a charity supporting people affected by multiple sclerosis (MS).
For those of you that are more recent subscribers to New Pathways, you may not know that this magazine started out as a leaflet called Pathways written by Judy Graham for MS-UK (which at the time was MSRC). The Pathways leaflet sought to provide people with the information they needed to live well with MS, at a time when there was very little information available, and what was there, was very limited in what it would cover.
Today, life is quite different with an abundance of information available via the internet, but this just creates noise that people need to navigate their way through to get to the really useful information they need. It really is all too easy to get lost in all the research and news, and end up more confused than when you started. But what Pathways set out to do and New Pathways has continued, is to cut through the noise by speaking to people living well with MS now, collect their stories, share them with you, and create a more sophisticated understanding of life with MS. An understanding that balances the facts of life with MS against the experiences of those living with the condition.
We see each person as an individual and treat them with the respect that they deserve; that each one of us is capable of making informed decisions for ourselves about how we wish to live our lives. That we all have the ability to absorb information and people’s experiences, and decide if something is right for us. To recognise that achieving the benchmark of ‘clinically-evidenced’ is not always going to be possible or even relevant for a good number of reasons. There is a huge difference between unproven and disproven. We have always understood that difference and will continue to use this to guide us for as long as we are here and needed.
To commemorate our 25 years, inside this issue you will find an Anniversary Special including a guest feature from Judy Graham, a feature by Tom Cutts who was diagnosed last year at the age of 25 and is coming to terms with his diagnosis, and a number of nods to times gone by.
You’ll also spot references to our history and the theme of 25 throughout this issue, such as 25 ways to raise money for MS-UK and get your pin badge on page 26.
Finally, we bring you all the usual content you have come to expect from us, including three accessible holiday stories - Julie Kicks on Andalusia on page 32, Tracy Brown in Bali on page 14 and our very own Ian Cook holidaying in Benidorm on page 38.
The 25th anniversary issue has been guest edited by MS-UK CEO Amy Woolf.
Congratulations to all the businesses across Essex who celebrated their fundraising success at our 925 Challenge awards night on 22 November! Thanks to their hard work and dedication, they managed to raise an astounding £16,700 for people affected by multiple sclerosis (MS)!
Back in September, MS-UK officially launched our first ever 925 Challenge. Nine teams of local companies were handed countdown clocks and tasked with raising £925 before the timer ticked down to the end of 9 weeks, 2 days, and 5 hours.
The challengers - comprised of teams from NatWest, Charles Derby Financial Services, Team Pivotal, Ellisons Solicitors, OPM Response, Whitehall Electrical, White Hart, Push Energy and Direct Solutions - fought to be the first to reach the fundraising target by bringing the workplace together and getting creative.
As each team grappled to get the upper hand, the fundraising events became more and more innovative. We saw a 'dawn to dusk' golf day, a Swimathon, video game characters tackling an obstacle course, a car wash, a race night, and so much more!
The ideas were so good that once the clocks stopped we struggled to pick our final award winners!
After some tough deliberation we came to our decisions. The awards for ‘most money raised’ and the ‘team spirit award’ were scooped by the White Hart pub in West Bergholt who raised an incredible £6,000 by involving the community in their fundraising efforts.
Other awards went to Ellisons Solicitors for their quirky ‘Wacky Hat Wednesday’ event, OPM Response for their outstandingly fun fundraising films, and Direct Solutions for their innovative ‘Display for MS-UK’ initiative. As well as great team work, MS-UK recognised some individuals who went above and beyond during the challenge including 6 year old Shara Stevens who individually raised £300 and swam over a mile during local business networking group Team Pivotal’s Swimathon.
Collectively teams in our first corporate challenge raised a wonderful £16,700, which smashed our target of £10,000. We are delighted with the energy and enthusiasm all teams have shown for the challenge bringing colleagues, clients and customers together to raise both awareness and much needed funds for MS-UK.
Fatigue is one of the most common symptoms of multiple sclerosis (MS) and it can often feel overwhelming during the cold and dark winter months. However, with the help of the MS community, we’ve gathered together a few tips and techniques that may help you through!
Firstly, though it may seem counter-intuitive, moderate exercise has been shown to improve resistance to fatigue. Now, we are by no means suggesting that you run a marathon, but a small amount of regular walking, swimming, or yoga, among many other options, could make a positive difference in the longer term. For more information on exercise, please see our Choices leaflet.
Looking after your mental wellbeing is also important. Activities like meditation, mindfulness and relaxation, as well as just being aware of the need to factor in time for rest, are tips that the MS community have shared with us in relation to managing symptoms. This self-aware approach is particularly useful when it comes to fatigue because taking the time to plan activities and daily patterns, as well as breaking down tasks into manageable chunks, can really make things less daunting on a day-to-day basis.
It may seem like a bit of cliché, but we can hardly talk about the usefulness of exercise without also talking about healthy eating. It is well known that eating a balanced diet helps people to maintain good health and feel their best, while poor diet can lead to fatigue. This is no less true when it comes to MS. Supplements, including B12, Co-enzyme Q10, Vitamin D and Omega 3, can also contribute to reducing fatigue, though we suggest speaking to your GP or neurologist before taking anything new. For more information, please see our Choices leaflets on Diet and nutrition and Vitamin D.
Other therapies that some people with MS have found to be helpful include acupuncture, oxygen therapy, and Action Potential Simulation (APS) therapy. Oxygen therapy is widely used across the UK in the many MS therapy centres and those who regularly attend sessions have found that it can greatly improve fatigue levels. To find your nearest therapy centre, use our website.
You can read and download all of our Choices leaflets on our website.
‘Our sister and cousin, Nicola, 48 year old mother of three, was diagnosed with multiple sclerosis (MS) in 2017.
‘Obviously such a diagnosis came as a shock to us all. From the beginning the support she has received from MS-UK has been tremendous. It gave her a forum to discuss her fears and engage with people who also have MS. In turn, it continues to give her strength and courage and is empowering her to live her life to the fullest.
‘Through Nicola we heard about the MS-UK sponsored places at the Royal Parks Half Marathon and as runners, it was an obvious way for us to give back, do an activity that we love, make a difference...all in all, a win-win situation.
‘Out the outset, as busy people, we wanted to keep our fundraising efforts simple to achieve our target of £800.
‘We canvassed family for their suggestions on how best to raise the money and the consensus was very much in favour of fundraising activities rather than just donations. This enabled us to bring our family and friends together and the desire to have some fun along the way!
‘We agreed our two events would be a garden tea party and a quiz to make the most of the lovely summer we had this year. Both activities exceeded our expectations – you can see we raised an amazing amount on our fundraising page!
‘The key challenge for us was to ensure that our guests at both events went away feeling they had an enjoyable experience and the £10 fee was good value. Feedback from both events exceeded our expectations, with suggestions we should set up our own afternoon tea business and turn the quiz into an annual event.
‘We smashed our target and raised approximately £1,200, which enabled us to spend the latter two months focusing on training for the race.
‘Both of us came away from this experience feeling a sense of pride in achieving some personal physical targets (we both set a new personal best) and in our own small way we have made a difference.
‘So what’s next? We are delighted to be volunteer stewards for the upcoming Colchester Half Marathon and looking to engage as many family members. Maybe we will see you there!
Karen and Maxine
On Wednesday 14 November we held an information session about aids and adaptations at Josephs Court, our wellness centre based in Essex. We had a range of professionals talking about their role and what can support people to make daily challenges and tasks easier.
At the event our guest OT students, Ciara and Lauren, provided a handout of 'life hacks' - suggestions to make daily activities easier. Examples included magnetic shoe laces, using elastic bands to improve the grip on opening a jar, Velcro to hold items in place and suggestions for food preparation to help in areas like the kitchen. Download the PDF version of the handout.
First up was Sam Hemmings an Occupational Therapist (OT) from the local Physical and Sensory Impairment Team. Sam spoke about the OT process and how it focuses on a client centred approach to address difficulties the person may have in their daily activities. This includes structuring of a client’s activities, managing behaviours, relationships and also the provision of equipment.
Essex Cares Limited (ECL) presented on the range of equipment they are able to prescribe following a referral. When a member of the ECL team attends a visit they are able to prescribe minor adaptations such as grab rails or bathroom equipment at the time of visit. They also spoke about their independent living centre located in Witham, Essex that is essentially a model home set-up where different equipment can be trialled and the client can see if a piece of equipment will benefit them.
REMAP, who are a voluntary organisation made up of retired engineers and other technical backgrounds, demonstrated a wide range of bespoke adaptations and gadgets they can design for individuals. These are usually created to fill the gap where off the shelf adaptations do not fulfil the needs of the client. Such examples include a remote controlled powered wheelchair that returns to the user’s house once they had got into their car and another example included a double sided peg that meant a client who lived with only one arm could hang their washing out independently.
Our final speakers of the day were our current OT students who did a fantastic presentation on the use of the small aids that can be purchased and prescribed and what is out there for clients in our local area.
Following the sessions we received great feedback from clients who attended and suggestions for future sessions we will look to hold in the New Year.
Thank you to all of our guest speakers, and if you would like to find out more about aids and adaptations you can email our helpline for information today.
Centre Manager, Josephs Court
MS-UK Counsellor, Louise Willis reveals what you can expect from MS-UK Counselling...
Multiple Sclerosis (MS) can present many physical challenges and some can be identified and treated by the medical profession, but what about the hidden emotional and mental challenges that can be faced?
MS affects around 110,000 people in the UK. Each person affected has a different life story, an individual set of beliefs and values, and ultimately a different way of dealing with diagnosis and the changes that MS can bring. There is no right or wrong way forward, but sometimes some extra support can be invaluable at any stage of MS. From diagnosis to new changes and developments, MS-UK counsellors are here for you every step of the way.
One of our trained counsellors will call you at a time that is suitable for you. We ask that you are alone at this time and in a quiet, confidential place and that you are comfortable as the call can take between 30 and 45 minutes. If you are unable to answer the call straight away, we will always ring back around 5 minutes later.
Yes, counselling is a safe and non-judgmental space for you to talk about any worries you might have about any aspect of your experience with MS. Any information we take down is kept on our encrypted servers here at MS-UK and is not passed on to any third parties unless you ask us to.
We will only break confidentiality in the event of a safeguarding issue which would mean any form of harm to either you or someone else.
We will ask you about what is bringing you to seek counselling and about any mental health issues you may have. We will also ask you what times and days are best for you for your counselling sessions. They will be at the same time and day each week for six weeks.
If you are unable to make one of your sessions, let us know as soon as you find out and we can reschedule. However, if this is within 24 hours of the session you may forfeit the session as all of our counsellors are booked in advance.
After your assessment we will pop a counselling contract in the post, or send it via email for you to sign ready to speak to one of our specially trained MS counsellors.
We look forward to meeting you!
A year, wow, how time flies. At the time of writing this it’s exactly a year since I was diagnosed with multiple sclerosis (MS). Before that day I had no idea what MS was. Now all I think about is MS. Instead of thinking about what I want to do in 3 years time I’m now planning what I can do in 3 hours time. Every day is a different day. On a Saturday night I’m looking forward to my run in the morning and pumped up ready to go…then the morning comes. It’s Sunday. I’m struggling. Time to change my plans.
That is one of the things I’ve learnt most about MS. I’ve always made plans months in advance let alone weeks, but now I look at this in a new light. At first if I missed a plan I would sink to a new level, I felt like MS was controlling my life, I felt that it was the end of the world. Now I look at it and even though I’m still upset, I remember it’s only one day, they’ll be others I can attend. If you have amazing friends like I do then they’ll understand, as long as you let them. This brings me on nicely to what else I’ve learnt.
Talking. Talking about my MS, my depression, my everything is possibly the best thing I’ve learnt since being diagnosed. You shouldn’t have to bottle up what’s inside, it’s scary telling people but how else can someone help you? I’m not afraid to say that I had counselling. I’m not afraid to say I went home and cried after some sessions. I’m not afraid to say it is one of the things that’s helped me the most. It gave me the confidence to speak to my family, my friends, my girlfriend. It’s why I’m happy to be so public about everything I’ve been and am going through! Because of this they all understand what’s happening with me. MS doesn’t just affect the sufferer. I know that people have cried over my diagnosis and the affect it’s had on me, but I also know that being open and approachable about it has helped them. If I had to give one piece of advice to anyone suffering with something it would be to talk about it.
Do you have something you love to do? Love to see? For me fitness is the one thing I love to do. I may complain about running on a cold Tuesday night in Swindon, or a rainy Colchester morning, but once I’m out there I love it. Ok I lie (don’t judge me) but I love to read too. This year I’ve read over 30 books and they’re not just tiny books either! Escaping in to another world, furthering my knowledge in something, allowing myself to become fully immersed in a book has helped me through this year. Find something you love to do. Find something you want to love to do. Hobbies, interests, whatever it is, give it your all and you’ll appreciate it afterwards.
A year on and I still don’t really know what MS is. Does anyone?! I ask numerous silly questions multiple times and I will carry on doing this for as long as I live! One year down and hopefully many, many more to come. I’ll get there one day, maybe come back and ask again next year?!
MS-UK Counselling is a confidential service open to anyone living with MS. You can talk about your thoughts and feelings with a qualified professional that also has an understanding of MS.
It’s been a good while since I wrote. I’ve wanted on many occasions but life has been against me. When you live with a chronic illness, it's a constant uphill battle but when life chucks in more challenges, you just want to scream!
It’s that time of year when bugs bounce around. You do things to help to escape illness. I’ve chucked orange juice down me for the hope of that extra vitamin C prevents any illness but I’ve still sounded like Darth Vader. Little man’s nursery has been a hive of germs. You want him to go but battling against bugs is a neverending game. Me, then little man, me again. I think it was tennis germs. My immune system is even more shot to pieces since MS.
My symptoms flare up when I’m sick, especially my fatigue. The MonSter comes back with a vengeance. Big effort! You just want a break. Last weekend, I woke up to not being able to walk. I bought a rollator/wheelchair combo as my scooter broke recently (another story). I needed a back up plan. Good job I did have one. Little man’s daddy wheeled me into church as I didn’t want to miss Remembrance Sunday service. I’ve got a poster used in the war “Keep calm and carry on”. You just remember what others have done to make you, your family and friends safe, and it all blends into perspective.
MS is a pig of a disease. When people ask, 'How are you?' and you reply 'OK', it’s because in the past replying with the truth doesn’t help many and it is easier, less effort to say 'OK'. Everyone has their challenges. You don’t know what they are. That’s the biggest lesson I’ve learnt from having MS. Simply be kind to others. You don’t know what sh*t they are dealing with.
I was recently given some drugs for my MS bladder as an interim solution as I’m waiting for Botox. I had a bad reaction to them, so no longer taking. I should have known as every drug I’ve taken has caused me medical grief. To add insult to injury, we’ve had home leaks to contend with. As the phrase goes, 'It never rains, only pours'. Little man’s daddy asked, 'Is that a joke?'
As you can read it’s been pretty interesting. Maybe I should rename my blog to “ poorly pi**ed off parent”. When I’m feeling rubbish, I think of that war poster “ keep calm and carry on”. That is my option, she says coughing again.
You can read more from Joanne on her blog, Poorly parents.
‘After missing the chance to run the Virgin Money London Marathon through the ballot, I decided that for 2019 I would fundraise for a charity close to my heart, MS-UK. I'm pushing hard, taking on multiple challenges and races between now and the marathon. So far, fundraising is going ok.
‘My Dad was diagnosed with MS when I was a child. I still remember the day he sat me down and told me. I had no idea how bad MS was or how it was going to change our lives and yet it still tore me apart.
‘Sitting here now typing this still breaks my heart and brings a tear to my eye.
‘For the past 20+ years, I've seen MS take my father away from me. At first, it was only really fatigue that was noticeable and a few days where he wasn't great on his legs.
‘As time went on, he lost the ability to drive and eventually couldn't even walk or feed himself.
‘MS has also damaged his brain, wiping out his short term memory and his ability to talk. This has been the biggest impact on me, not being able to speak to him, ask him questions and all the things a son should be able to ask his father.
‘I regret not making the most of the last good years with him while I still had the chance.
My Mum cares for my Dad 24/7 which really takes its toll on her, she's stubborn though and does everything she can for him.
I chose MS-UK and the London Marathon to show my support for my family and to raise as many funds for such a supportive MS charity that gets much of its funding through the London Marathon charity places.’
You can find out more and make a donation on Gavin's JustGiving page.
08 November 2018
Around the corner from the MS-UK offices in Essex, a bright-red boat is moored by the quayside. It's an impressive sight. The deck is busy with cranes and pulleys. Porthole windows gaze out across the water. The light tower that rises from the deck is seen by hundreds (possibly thousands) of commuters crossing the nearby bridge on their way to and from work.
So imagine our surprise when the Colchester Sea Cadets, who use the boat as their base once a week, said that they'd be willing to turn the tower light purple to show their support for MS-UK.
Last Wednesday evening, we made the short trip down the riverfront to see the purple light in full glow. It was astounding to behold! Set against the dark night sky, the light blazed, bathing the riverside in bright purple and causing a few passing heads to turn.
We spoke to a couple of cadets who had come to meet us, and they talked us through how they had planned the fantastic show of colour. While most of their explanation was far beyond our understanding of all things nautical, we were incredibly grateful to them for pulling off something so magical for MS-UK!
Thanks to Colchester Sea Cadets for welcoming us to their one-of-a-kind home and for helping us 'paint the town purple' in preparation for the Colchester Half Marathon 2019.
Everyone experiences stress in one way or another. It can affect you both physically and mentally, making you feel anxious and impatient. But stress doesn't have to dominate your daily routine.
To mark Stress Awareness Day 2018, we are giving you the opportunity to learn how to focus your mind with a series of stress-busting podcasts hosted by mindfulness coach Zoe Flint. Each step-by-step guide is designed to give you the tools you need to de-clutter your thoughts, focus on the present, and ultimately reduce your stress levels.
It feels a little that people with multiple sclerosis (MS) are stuck between a rock and hard place when it comes to the weather. After the extremely hot summer we’ve just experienced, many people had issues with the heat, and now winter is just around the corner bringing problems and anxieties of its own.
MS symptoms can be exacerbated as the temperature drops. It is not known exactly why the cold has a negative effect on people with MS symptoms. Some of the symptoms that can be exacerbated by the cold weather are:
One additional issue may be the shorter days and not being exposed to as much direct sunlight, therefore not getting as much natural vitamin D as in summer months. The lack of sunlight, the shortening of the days and the difficulties getting out and about can also be contributing factors towards negative mental health with potentially worsening anxiety and depression.
Like many other aspects of living with MS, a little planning and forethought can go a long way when coping with activities in the winter.
If you want to chat about any aspects of living with multiple sclerosis, the MS-UK Helpline team are here to help. Just call us on 0800 783 0518, email us or use our live web chat service to get in touch.
Remember, remember the fifth of November...
Guy Fawkes Night is more than just a great opportunity to get together with friends and family and enjoy some colourful explosions. If you’re looking to support MS-UK, a night of huddling around a bonfire, toasting marshmallows and writing your name in the sky with sparklers can be a unique way to fundraise!
Need some inspiration to help light the fuse and get your party fired up? We've listed our top 5 bonfire night fundraising activities below!
Penny (or a pound!) for the Guy!
Put a modern twist on the traditional bonfire night activity by holding a Guy Fawkes dummy making competition! Maybe you want to give him a 1980's perm? Or perhaps you'd like to see him dressed in lederhosen? A collection of weird and wonderful homemade Guys could be displayed outside, and your guests could vote for their favourite by placing a donation into a pot. The winner is the Guy (or Gal) who raises the most money!
Marshmallows are approximately 100 times tastier when toasted.
Grab a stick, skewer some marshmallows, and roast them over the bonfire. Get creative with it. Drizzle them in chocolate. Use the melted marshmallow to decorate some toffee apples. Perhaps you could ask for a small donation from your guests to try some of your treats!
It doesn't matter how old you are, watching things explode is fun...
Lots of local community centres and sports clubs hold professional firework displays that attract people in their droves. Why not ask the organisers if they would let you and some friends hold a bucket collection at the end of the event? Then sit back and watch the rockets fly!
Apple bobbing is totally weird, but somehow it gets people excited!
Apple bobbing makes no sense, but that doesn't mean we don't love it! Grab a bucket, fill it with water, chuck in a few apples, then get people to slosh their faces around the drink to pick up a piece of fruit with only their teeth. Why not turn it into a competition? Ask for a small donation fee to enter and give challengers the chance to take home a juicy Red Delicious!
Writing your name in sparks is the closest you'll ever get to being a full-blown wizard.
Offer sparklers to your bonfire night guests in return for a donation to MS-UK. Then watch with awe as grown adults pretend they're firing spells from a wand like a middle-aged Harry Potter.
We’d love to hear what you plan to get up to this bonfire night, so share your stories with us! Get in touch with Lucy and send in your photos and videos of your night in action!
Remember to wrap up warm and stay safe, but most of all have fun!