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“I feel so much better physically and mentally”

Posted on: October 27 2020

Amanda has been smashing her fitness goals with MS-UK's online exercise classes

IMG_1422.jpegI thoroughly enjoy MS-UK’s live exercise classes via Zoom and Facebook. Pre-lockdown, I attended their Colchester-based exercise classes in person and I missed them. Initially, the Wellness Coaches provided recorded exercise videos on the MS-UK YouTube channel, which I enjoyed and followed, but I was even more delighted when the team said they would be offering live classes via Zoom and then Facebook for people with multiple sclerosis (MS).

Community feel

Exercising with others and feeling part of a community is always more fun and more motivating than exercising alone. I’m so thankful for the support and inspiration and I feel so much better physically and mentally when I have made time for exercise and know that I have done my very best. 

Fun for all

Alan’s classes are fun and very easy to participate in! They are largely based around seated exercise and are therefore accessible to all of us, despite our different levels of restrictions. The class content provides lots of variety and progression exercises for those who are more able. I find that I am able to progress more in the upper body classes than the lower body classes, which I find much more challenging, but other MSers may find the opposite! Alan always reminds us to work to our own level – work as hard as we can but manage our fatigue level and never work through pain. 

Flexible friends

It’s easy to use technology to access the classes. The advantage with the Facebook Live classes is that they are recorded so you do not have to watch them live to participate, although I do if I can, because I like the sense of engagement. However, I have often watched and followed them later in the day if I was busy, or re-watched them and repeated the exercises at other times, to practise a specific exercise group or fill a gap in my diary. I like the flexibility that the delivery of the classes offers. 

Global connections

Specifically with the Facebook live classes, it’s amazing to see that MS-UK is able to reach MSers all around the world. We are very lucky to have the support we get from MS-UK and it’s fantastic to see that others may benefit when they don’t necessarily have such resources in their home countries. It’s great to extend the reach of the MS community too... as I’m exercising, I like to think that others around the world are doing the exact same thing and we’re “fighting the MS fight” together. 

How to manage anxiety

Posted on: October 26 2020

iStock-941847258.jpgLiving with a long-term health condition like multiple sclerosis (MS) can often cause anxiety. MS-UK's Counsellors have put together some tips for dealing with worries.

1 Befriend your anxiety

Anxiety is a friend and not a foe. Sounds crazy right? Anxiety is a response that is always trying to keep you physically or emotionally safe. We can spend a lot of our time thinking of it as bad but, by understanding anxiety has our health and wellbeing at heart, we can begin to shift that negative association.

2 Listen to the message your anxiety is trying to tell you

If you become anxious every time you think about going out, why is that? Is it that you have a fear of open spaces, or is it that you are concerned about your health? We often react to what we think the anxious feeling is telling us and not the actual message.

3 Build yourself up with positive self-talk

How do you speak to yourself? If like many of us, if you are prone to the occasional internal self-flagellation, you are not alone. Talking negatively to ourselves might feel natural, but the act of speaking negatively has a knock-on effect on our anxiety.

4 Avoid caffeine

This might seem obvious, but caffeine can have a huge effect on anxiety levels. If it is your morning routine, try to change that coffee for another hot drink. You will notice the difference and will still get to stick to your routine.

5 Try mindfulness meditation and muscle relaxation

There are plenty of apps, online tutorials, books and classes to attend. Mindfulness takes your mind away from the ‘what if’s’ of the future and helps you to focus on what is really important – the here and now.

6 Offload night time thoughts

If, like many people, anxiety at night affects your sleep, try having an old fashioned pen and paper by your bed to get the anxious thoughts out there.

7 Try journaling

Especially before bed if sleep is an issue

8 breathe

Deep breathing techniques can be a valuable self-help tool. Start to breathe in through your nose and out through your mouth at a rate that is comfortable for you. Identify a colour that represents peace and calmness. Imagine you are breathing this colour in through your nose. This colour is flooding your body, arteries, veins and organs. At the same time identify a colour that represents your anxiety. Start to breathe this colour out through your mouth. Imagine your anxiety colour being pushed from your body by the peaceful, calming colour.

9 look at cognitive distortions

Our anxiety is fuelled by our thoughts. Imagine your anxiety as a tree. The part of the tree you can see above ground represents your anxiety. The part of the tree that you can’t see, the underground roots, represents your thoughts. It’s the roots that keep your anxiety tree alive. Common thoughts associated with anxiety are

 

·         Prediction – believing we know what the future holds

·         Mind reading – believing we know what other people are thinking

·         Catastrophising – believing the worst thing will happen

·         Shoulds and musts – imposing pressure upon ourselves by saying “I should… I must”

·         Critical self – putting ourselves down and blaming ourselves for events which are not our fault

 

Our thoughts are opinions…very rarely are they based upon facts

10 have ‘worry time’

This is about giving yourself space to ‘worry’ for a specific period of time. Once that time is up, push your thoughts associated to your anxiety to one side

11 see a counsellor

This will help you understand what might be behind some of your anxious thoughts and feelings if you have trouble identifying them for yourself.  This might be related to some deep-seated issues including feelings of low self-esteem, specific events in the past or relationships with family members, colleagues or friends.

12 get some fresh air

Reconnect in whichever way is possible to the outdoors and nature so that you can tune back into your five senses.  What can you smell, hear, see, taste and touch?

13 put together a ‘mood basket’

Maybe it’s a blanket you can touch, a candle you can stare into or a piece of music that you can listen to at times when things feel a bit too much, or to help you get through a difficult moment.

14 don’t be too hard on yourself

Forgive yourself if you’re finding things tough and not achieving the things that you want to do. Take the time to reflect on your experience and to re-evaluate.  Maybe you need to take smaller steps in the direction of your goal once you’re ready to make another attempt, and relish your achievement at every step of the way.

Exercise for multiple sclerosis

Posted on: October 21 2020

iStock-187119511.jpgIt is widely acknowledged that regular exercise is important in maintaining optimum health, but what do you do when you have a condition that can give you ‘bad’ days and leave you feeling like exercise is the last thing on your mind?

For people with multiple sclerosis (MS), finding the right type of exercise is important as MS affects people differently. There is no one type of exercise recommended for people with MS, it’s entirely down to what you enjoy and what you are able to do as an individual and if you enjoy it, you will want to continue and hopefully do more!

Don’t worry if you have never done any exercise before or it’s been years since you last did anything. Slow and steady is the best way to build up your stamina. Getting your endorphins rushing around your system will soon have you feeling better about things.

There is a wealth of choice when it comes to exercise and there has also been a huge rise in people taking up wheelchair sports – there are thousands of different opportunities for you (and your family) to get involved in. Work with your MS and how it affects you, to find an activity that you love

If you are lucky enough to live near to an MS therapy centre, why not make use of the specialised equipment or exercise classes that they may have on offer? One particular piece of equipment that is a real support to people with mobility problems is a Thera bike.

Thera bikes have a motor that helps tired muscles to keep moving, even when you don’t feel like you can do it for yourself. To find your nearest MS therapy centre see our Choices booklet, MS Therapy centres for details of all centres across the UK and check out the services they offer. Download MS Therapy Centres Booklet

iStock-538013041.jpgExercise and MS fatigue

Fatigue is a common symptom of MS. It might sound counterintuitive, but moderate exercise has been shown to improve resistance to fatigue. Clearly, it’s best not to exercise through fatigue or to try to battle on when it would be better to rest, but in the longer term, adding some exercise into your daily life can pay dividends.

The National Institution for Care Excellence (NICE) published guidelines in October 2014 for the management of MS. In these guidelines NICE advised aerobic, balance and stretching exercises, including yoga may be helpful in treating MS-related fatigue.

Sometimes exercise can bring challenges for people with MS. Some people find that their MS symptoms can become temporarily worse during exercise because they are affected by the increase in body temperature. If you are affected by heat, take precautions to keep yourself as cool as possible – always carry a bottle of icy water with you and take rest breaks when needed. If outside, keep to shaded areas. You can also put a hand towel in the freezer and drape this around your neck. The neck has lots of blood vessels, so keeping them cool will keep you cooler overall. If working out in a room or gym, see if you can have a fan working near you to keep the air cool.

Swimming for MS

Swimming can be especially helpful because your bodyweight is supported by the water and the water helps to stabilise someone with balance problems. Weaker muscles can operate in this environment and will strengthen from the resistance created as you move through the water. As swimming involves many muscles in your body, it can also help to increase coordination.

There are now many more swimming pools and leisure centres offering special sessions for people with disabilities or those who require particular help and it may be worth trying one of these sessions first, if you need to. You could contact your local council to see what they have to offer in your area.

Pilates for MS

Pilates is an all-round stretching and strengthening regime, designed to improve muscle strength, posture and flexibility. Pilates is a type of exercise programme based on correct body alignment. The focus is on coordination, moving properly and core strength. Good breathing patterns are also important.

Pilates is a very popular choice of exercise and incorporates elements of yoga, stretching and muscle strengthening using the body’s own weight.

Tai Chi for MS

Tai Chi is meditation with movement. It concentrates on relaxation and correct breathing, while performing graceful, circular, flowing exercises, sometimes to music. It is especially helpful for people with MS who may not have the stamina to exercise at a high speed and another advantage is that you can exercise without overheating.

Tai Chi can help in MS by improving balance, combating fatigue and giving you more energy. It can also help with spasms, muscle strengthening and is very relaxing. Regular practice can also help with depression and maintaining a calm and more serene inner state. Tai Chi is a good method of self-development, focusing the mind and giving you a greater sense of wellbeing.

iStock-1098113754.jpgYoga for MS

Yoga is about a unity of mind and body. It is as much about your breathing and your outlook on life as it is about postures. It can calm the mind and energise the body, as well as helping to counter-act stress, fatigue and depression.

It has a good effect on the endocrine glands, circulatory and respiratory systems and improves wellbeing. Yoga also tones the digestive organs and other glands in the body such as the thyroid and adrenals.

Like Pilates, yoga is suitable for all ages, and all fitness levels. Yoga is a low-impact, gentle form of exercise, but tends to be floor-based so consideration must be given as whether this is suitable for you.

For more advice on exercising with multiple sclerosis, download our Exercises Choices booklet which includes exercises to try safely at home Download Exercises Choices Booklet 

 

“Don’t focus on the future, as no one can predict what will happen”

Posted on: October 21 2020

alexis swete.jpgAlexis Swete looks back on her journey from diagnosis 26 years ago

Looking back, my first symptom was probably optic neuritis, but the one that sticks most in my mind is the seizing up with painful muscle cramps down my right-hand side.

I was 16 when I had optic neuritis and 17, 19 and 21 when I experienced the muscle seizures. I was sent for ECG scans but by the time the appointment came, I no longer had the symptoms.

I then went numb in my fingers, and this spread up my arm. After a visit to the GP, I was diagnosed a trapped nerve, so I went for a second opinion privately. 

There I had an MRI scan and although I was 23, my parents were told of my diagnosis first, and they then told me.

Shock and confusion

I was initially in shock and actually confused multiple sclerosis (MS) with Parkinson’s disease. My whole body had gone numb by this stage. I think I pushed the diagnosis to the back of my mind. There was little information back then. The neurologist who diagnosed me said there were no treatments, advised against joining the MS Society, and said it was a progressive and incurable condition and I should get lots of rest!

After what was probably a few months my sensation came back and I no longer felt like the Michelin man. Initially, I would have relapses about twice a year, but would always go into remission fairly unscathed. It wasn’t until about seven years into my diagnosis that I had a bad relapse and did not fully recover my mobility. I started Rebif which I took for the following 10 years.

Diet and therapies

I have changed my diet to a gluten-free one which works for me. I have tried excluding many foods and still do try and eliminate, as much as possible, diary and legumes. I have recently cut out eggs as I discovered that my vertigo symptom disappeared when I stopped consuming them. Food definitely affects my symptoms.

I also try and stretch as much as possible (but not often enough!) and this really does help. 

I have tried pretty much every complementary therapy there is but I have found that massage and acupuncture work for me. Gentle yoga also works. I know that everyone is different and I do think that MS symptoms need to be managed differently person to person.

I also have had some cognitive behavioural therapy (CBT) over the years which helped. Having someone to talk to who is not judgmental, and who isn’t family, I found to be very helpful.

I have been lucky that I had a wonderful career as a primary school teacher. I stopped working five years ago and now tutor online. Life with MS means figuring out ways that one can do things.

Life now is so different from when I was younger and very physically active. I listen to my body and do allow more time to rest. I have become more open and understanding of others. 

As an enthusiastic skier, and before I was no longer able to ski, I tried disabled skiing. I found it just wasn’t the same and I didn’t take it up, but the experience helped me to discover other things.

alexis.jpgI got myself a mobility scooter and like to travel a lot (the added bonus of not having to wait in passport control!). I have taken up painting and have even held three exhibitions at which I’ve sold my work.

One of my best discoveries was sailing with Oceans of Hope two and a half years ago. They are a charity where only people who have MS can be members of the crew. It was on one of these trips in October 2019 that I met an incredible man, a member of the crew, and we are now boyfriend and girlfriend.

I also adopted a dog who keeps me company and gets me out of the house to walk her.

My advice

Don’t hold on to what you used to be able to do, but appreciate what you can do now. Don’t focus on the future, as no one can predict what will happen. Keep your body healthy by thinking about what you put into it. Do join an MS group, as speaking to others with the same condition, who understand what you are going through without explanation, is invaluable

I’ve been diagnosed for nearly 26 years. I have learnt so much from having this condition. I am in a good place at the moment but you never know what is around the corner so grab life when you can!

 

     

“I learnt to accept help when I needed it”

Posted on: October 20 2020

cropped.jpgChristopher Burdett on improving his mental health through counselling

I chose MS-UK Counselling because I felt I needed to talk to someone independently to discuss my situation living with multiple sclerosis.

I was able to talk to someone openly and discuss my feelings and what was bothering me. I’m a positive person with a lot of faith. My counsellor listened and was helpful, didn’t judge and gave me guidance and suggestions to follow.

They made me believe that I should think about myself, be kind to myself, and accept help. That was the hardest thing to do. But I learnt to accept help when I needed it. I also learnt to say no.

I had shut out and hurt a close friend because she was going through her own issues and I didn’t want to burden her with mine. I deeply regret that. But, since, we’ve talked about it and we are OK now.

I’d definitely recommend counselling to anyone. It’s an important and valuable service. If I could go back and speak to my newly diagnosed self, I’d say to take each day as it comes, and talk to someone.

To find out more about MS-UK's Counselling service, click here

“I was defensive, moody and argumentative”

Posted on: October 19 2020

Martin_0.jpgMartin Baum shares his mental health challenges and how the chips on his shoulders were holding him back

I have generally found there to be a fine line between multiple sclerosis (MS) and mental health if only by association, for being filed under ‘I’ for invisible illnesses. In a week that recently brought World Mental Health Day to the fore, I was made aware that men are not great talkers - or should that be sharers? – which struck a chord with me.

Certainly, coming to terms with my own mental health experiences while trying to cope with MS was something, on reflection almost 40 years on, which I feel had had less to do with not talking but more about not listening. Or to be brutally honest, my own problems had as much to do with MS as it did with my own belligerent nature.

For me it was never a case of not wanting to talk about how lousy life was because I never stopped. I had no filter. I was defensive, moody and argumentative. Nobody was understanding - or understanding enough in my view - to appreciate just how awful my life had become. But then, isn’t that the way for anyone with a fragile state of mind and a huge chip on both shoulders?

Stubborn 

The ’I’ file soon began to swell with injustice, insecurity and isolation. Yet the lonelier my world was, the more critical of others who wanted to help me I became. I still would not allow myself to be persuaded away from a deafness towards anyone who didn’t agree with me.

Subsequently, and to no great surprise, my mental health began to buckle but, fortunately, it was still strong enough not to break. Just. What saved me from going under was something I heard myself saying to somebody I had become close to that still makes me shudder with shame to this day.

“How are you?” she asked.

“How do you think I am?” I bristled.  “I’ve got multiple sclerosis!”

Adding inexcusable and indefensible to the burgeoning ‘I’ file was not something to be proud of. 

Wake-up call

Shocked by the obvious hurt I’d caused, reducing her to tears by replying in such a cold, cowardly and unnecessary way – and afraid of losing someone who meant so much – was the moment I began to face up to some awful home truths, marking a distinct change in attitude. Taking ownership of my MS, however, would take longer.

But thanks to the power of love, Lizzy forgave and married me and almost 30 years on not only is she still my wife but also, such is the reality of the illness, she is my carer too. The last entry into the ‘I’ file is Inseparable because together we have grown with my MS. We own it, deal with it, live with it. Yes, I still have moments of mental hardship but thanks to Lizzy I’m no longer left to face them alone.

 

 

 

Why I set off on a 1,000-mile bike ride from Yorkshire to Vienna

Posted on: October 15 2020

Jo Goodall 6.JPGJo Goodall, MS-UK’s fundraiser of the month reveals why she set herself the challenge of a lifetime

Monday 10 August 2020 will forever be a memorable day for me, as that was the day I set off on a 1,000-mile bike ride from Yorkshire to Vienna, on my own.

You might be wondering, quite rightly, “Why on earth would you want to do that?” And when I reflect on my achievement, I do sometimes wonder what possessed me to pack up my bike and set off on a solo journey across a continent, which took me from the UK over to the Netherlands, through Germany and into Austria. 

The 18-day trip saw me cycle, on average, 70 miles a day through some of the most amazing scenery, tracking alongside the Rivers Rhine and Danube.

I undertook this challenge and adventure for a number of reasons. Firstly, I actually had another cycling trip planned and booked for the summer, however because of the Coronavirus pandemic that had to be cancelled. Instead of just accepting that, sitting back, and doing nothing, as soon as the European borders started to open and the situation had calmed down slightly, I set about planning this trip.

Ever since October 2019, I had wanted to visit Vienna, as it was in that city that Eliud Kipchoge, arguably the greatest marathon runner of all time, completed a sub-two-hour marathon. As a marathon runner myself, I can really relate to just how ridiculously quick that is and how incredible that achievement was. I remember watching him sprinting to the finish line and shedding a tear as Kipchoge achieved a sports milestone given almost mythical status in the running world, breaking through a temporal barrier that many would have deemed untouchable only a few years ago.

Instead of flying to Vienna, I decided my own challenge would be to cycle to the very spot that Kipchoge completed his incredible achievement.

Along the way, I kept a daily blog, mostly to keep my parents informed as to where I was and what had happened that day. The blog, however, picked up some momentum, and soon it was clear that it was more than just Mum and Dad who were reading and enjoying it.

I received an overwhelming amount of support, kind and motivating words from so many people that I knew this journey and adventure wasn’t just for me. I knew I could achieve so much more by harnessing the power of this small community I had inadvertently Jo Goodall 5.JPGcreated. On my penultimate day of riding, I set up my JustGiving page for MS-UK and within a few days raised £1,000. That total now sits at around £1,700, which I am so proud of.

MS-UK is a charity that is very close to my heart. I first got involved with the charity in 2014 when I ran The London Marathon. A very special lady, Mrs B, who has sadly passed away now, lived with multiple sclerosis so I know how devastating the illness can be. She has a very special place in my heart and she doesn’t know it, but I was riding my bike for all those people, like her, who are not able to.

Here is the link to my website which has my full, day by day blog of the trip. I hope you enjoy reading it – please leave a comment if you do! https://yorkshireto.com/

If you’ve been inspired by Jo’s fundraising adventure, visit www.justgiving.com/fundraising/jo-goodall2.

 

"I consider myself fortunate because my symptoms are fairly mild"

Posted on: October 15 2020

Christine.jpgChristine was diagnosed with MS just over 20 years ago

I was diagnosed with MS just over 20 years ago. I consider myself fortunate because my symptoms are fairly mild, which enabled me to work full time until I retired last year.

The reason I am leaving a legacy in my will to MS-UK is influenced by my nephew Philp who had primary progressive MS and has now passed away. Philip lived in his own property with the support of carers until he died in 2017. I like the fact that MS-UK give information and support to people diagnosed with MS to help them live as independent a life as possible.

Get in touch:

To find out more about leaving a legacy to MS-UK please contact our Fundraising Manger Jill Purcell via email at jill@ms-uk.org or on 01206226500

Visit www.ms-uk.org/Gifts-and-Legacies

What Will be your legacy?

Posted on: October 15 2020

Jill Purcell, Fundraising Manager at MS-UK explains how leaving something on your will makes an incredible difference iStock-175196412.jpg

Leaving a gift in your Will is an incredible way for you to help MS-UK plan for the future, pass on a gift to the next generation and ensure that no one has to face MS alone.

Every gift, no matter what size will have a huge impact on our services for years to come.

Events this year may have made you think more about how to make sure that the people and causes that mean the most to you are looked after. After you have looked after your family and friends we’d be incredibly grateful if you would consider leaving a gift to MS-UK.

Why leave a gift? 

By putting people affected by MS at the heart of our work, we can make sure that every person who leaves us a legacy is honoured in the right way. We are an independent charity so we never accept funding that may jeopardise our ability to act in the best interests of people affected by MS. By leaving a gift in a Will to MS-UK, people hand down their legacy to the next generation. We could not be here for people affected by MS without this support.

Making a Will

We know that it can be difficult to know where to begin when writing or updating a Will, so here's some information about getting started which we hope you find useful. It's important to remember you do not need to face this alone and by speaking to a legal professional you can be supported through this process. By having a Will you will provide security for your loved ones. A Will is a legally binding document, so you can have peace of mind that your wishes will be carried out.

Legal advice

Making a will is a straight forward process. The first step is to seek support from a qualified solicitor or a member of the Institute of Professional Willwriters to help you get started. You can always take a family member or friend with you to appointments. A simple Will can cost between £144 and £240. If you have a more complex Will or require specialist services, the cost can go up to about £600. It really does depend on your individual circumstances, but you can compare quotes from a few solicitors before going ahead with anything.

What our clients say…

Our mission is to improve understanding of multiple sclerosis and provide support where it is needed most. Every gift that is left means we can offer our services to more people.

“For over 18 years (since being diagnosed with MS) of this journey, New Pathways has been like a friend by my side.”

Our counselling service gave hundreds of telephone sessions to people across the UK

“You just understand how I’m feeling.”

Every legacy we receive helps make this work possible. 

“You have got me through some dark times. I hope you will be around for many more years.”

Last year we answered hundreds of enquiries through our helpline. Every time we picked up the phone, we were able to be here for someone affected by MS.

Get in touch:

To find out more about leaving a legacy to MS-UK please contact our Fundraising Manger Jill Purcell via email at jill@ms-uk.org or on 01206226500

Visit www.ms-uk.org/Gifts-and-Legacies

The flu vaccine and MS - what you need to know

Posted on: October 13 2020

Laura Amiss-Smith (No Background).pngLaura from MS-UK’s Helpline has the lowdown on this year’s flu vaccine

The flu vaccine is offered to anyone with a long-term health condition and this includes multiple sclerosis (MS). It is free on the NHS.

The flu vaccine is not a live virus and therefore cannot cause you to have the illness. There are different types of flu vaccine and you will be offered the one that is more effective for you, depending on your age. Sometimes people may feel an ache in their arm, but if you experience cold or flu symptoms, then the chances are it was already in your system.

Covid-19

This year it is seen as even more important to vaccinate against the flu due to Covid-19. If Covid-19 cases continue to rise, higher cases of flu could potentially overwhelm NHS services.

People with MS are more at risk of becoming unwell with flu. Having the vaccine not only reduces the risk of getting flu but, if you do catch it, it is likely you will have a much milder case.

You may have already been contacted by your GP surgery to book in for a flu jab. If not, then contact them to make an appointment. If you are worried about visiting the GP surgery in the current climate, perhaps speak to them to see if they are able to make a home visit.

If you are a carer of a person with MS, you are also eligible for a free flu vaccine.

Precautions

If you are having a relapse, you’ve recently taken steroids for a relapse or are taking certain disease-modifying therapies then you may need to discuss having a flu vaccine with your medical team. Precautions may be needed in these cases.

Specialist MS neurologist, Professor Gavin Giovannoni, says on his research blog that he is hopeful the behavioural changes we have made around Covid-19 will also have a positive impact on the figures for flu. Social distancing, wearing masks, and washing and sanitising our hands much more will help to prevent the spread of flu.

One thing he highlights is that if you are a severely immunosuppressed person with MS (you have recently been treated with alemtuzumab or HSCT), and have small children, please make sure they do not have the live nasal flu vaccine at school. This could expose you to flu via the live vaccine.

For anyone worried about having the flu vaccine, Professor Giovannoni also says that it is the most studied vaccine in people with MS and it has been shown to be safe, and it does not trigger relapses and/or MRI activity.

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