It’s National Stress Awareness Day, but we all know it’s important to take stock of your mental health not just today, but every day.
Stress affects us all at some point and avoiding it completely can be nearly impossible. But taking steps to reduce it and manage your response to it, can be extremely beneficial. Research has shown that it can even help prevent new disease activity in people with multiple sclerosis (MS).
So if you’re craving a little more relaxation, read on.
Research has shown that meditation and yoga can reduce stress and cause changes in the brain that allow more stress resilience. Meditation slows the heartbeat and calms the mind, leaving you in a relaxed state. You can find free guided meditations online. Try www.freemindfulness.org/download
The role of exercise in helping reduce stress is well proven. One study found that exercise can not only help you manage it in the present, but it can also act as a buffer to protect you from future effects, too.
Personal trainer Dom Thorpe specialises in exercise for people with MS and offers an ‘MS Warrior’ programme online. Visit www.dt-training.co.uk/ms-warrior-programme/
Pile your plate high with prebiotics, because there is evidence that these feed the good bacteria in your gut, and improve the physiological impact of stress. Prebiotics are fibres found in foods such as chicory, Jerusalem artichokes, raw garlic, leeks and onions. When this fibre is digested by beneficial gut bacteria, the microbes release byproducts which researchers think influence brain function.
Prebiotics were also found to increase the amount of rapid-eye-movement (REM) sleep that happens. REM sleep is believed to be critical for promoting recovery from stress, with research showing that those who get more REM sleep after a traumatic event are less likely to experience post-traumatic stress disorder.
Finally, when you’re in need of a snack, you could do a lot worse than to reach for a handful of walnuts. A study found these tasty nuts and their oil may help prepare the body to deal with stress. Other studies have shown omega 3 fatty acids, such as the ones found in walnuts, can reduce bad cholesterol and inflammation markers in the body.
For more information about living with multiple sclerosis, subscribe to New Pathways magazine, your MS magazine of choice.
Travelling with a Carer: What are your options?
Are the dreary winter weather and dark evenings making you dream of sunnier climes? The world is your oyster, says writer Ella Hendrix.
Travelling or going on holiday is one of the delights of life. But, just because you need extra help, it doesn’t mean that you can’t enjoy getting away to see and experiencing new things.
It might seem difficult, but, with a bit of careful planning, anything’s possible. Although going away on your own could be an option, if you make use of a carer in your everyday life, there is also the possibility of travelling with them. There are some CQC regulated care companies that make travelling with your live-in carer possible. With this in mind, you might be able to go to places that you otherwise wouldn’t, as your carer understands your needs and limits.
Trains, planes and automobiles…
As long as you’re planning on travelling by (fairly) conventional means, you shouldn’t have a problem in most parts of the world. International flights, flights within Europe, long-distance planes, and ships should all be well equipped for everyone, including people who have limited mobility, but it is important that if you do have mobility issues you make a travel agent, airline or booking company aware of it.
You might have more difficulty if you are going to a third world country, as they often will not have the same infrastructure as we do here. However, there are usually ways around this, so speak to a booking agent to see that they can do. Make sure that you tell them that you’re travelling with a carer as this might make things easier.
One big worry for many people, when they go away, is what to do about their medication. If you are travelling with a carer you can ask them to look after your medication but there are still some things that need to be thought about in advance.
Make sure that you carry a doctor’s note and a copy of your prescription so that you can show that you are meant to have it on you, and so that you can get hold of replacements should the worse happen
Make a note of your medicine’s generic name as well as the brand. Many countries use different brands to us here in the UK
Take your medication in its packaging to leave no doubt about what it is.
Remember if it is a liquid to carry it in a clear plastic bag if you are flying
If your medication requires refrigeration you should take it in a cool bag with ice packs that last until you get to where you are staying. If you don’t have your own fridge where you are staying, speak to the management of the place to ask if you can use theirs
Carry medication in your hand luggage
Holidays in the UK
Holliday villages, trendy hostels, hotel spas and well-established hotels are good options. They are usually well equipped for people with health issues and have staff who know exactly what to do to make your stay an enjoyable one. These places are usually fully fitted with wheelchair access, have rooms which are suitable for less mobile people or those who need extra help, and are dedicated to ensuring that everybody has a good time.
It is always a good idea to get travel insurance, especially if you are going abroad. This is especially important if you have a pre-existing medical condition or specialist equipment that you want to take with you.
If you’re older, specialist insurance for the over 50s can be useful as it is more tailored. You should also remember that, whilst the UK is still in the EU, a European Health Insurance Card (EHIC) can be used alongside (but not replace) your travel insurance. This means that you can get access to state-provided healthcare if you are in an EU country.
There are many benefits to gain from going away, and with a carer, you can find the whole experience enjoyable and not too stressful – just as it should be.
So, how has this year gone for you? Have you been extra good and put smiles on everyone’s faces, or have you been more on the naughty side? We want to know if you think you are on Father Christmas’s Naughty or Nice list this year and give you a chance to donate to celebrate your niceness or redeem yourself for being naughty with a donation to MS-UK! Or do you know someone who is worthy of the Nice or Naughty list that you could nominate? It’s up to you!
Whether you donate £1 or £1,000, we hope that you get a lovely warm feeling from knowing that you are helping us to support people affected by multiple sclerosis (MS). Our charity is hard at work improving the lives of people with MS through counselling, our helpline, our wellness centre Josephs Court and through working to increase understanding of MS. MS-UK does not accept any statutory or pharmaceutical funding so that we can stay independent and offer completely unbiased information and support. This means every penny donated really will make a difference to our work.
It’s time to decide – naughty or nice? Tell us how you or someone you would like to nominate has been this year and with a donation, however small or large, their name will be on the MS-UK Nice List this Christmas. Just visit our JustGiving page at www.justgiving.com/campaign/NaughtyorNice
Thank you for everything you do to support us – you make all of our work possible!
In this guest blog, Lyndsay Killick from The White Hart in West Bergholt, Essex gives this year’s 925 Challenge teams her advice.
Hi all, its Lyndsay here from The White Hart in West Bergholt! Hopefully, if you’re taking part in the 925 Challenge at least one of the MS-UK team members will have mentioned us and how brilliant we are already, haha!
In 2018 I decided to give the MS-UK 925 Challenge a go for personal reasons.
As a child growing up, my dad was diagnosed with multiple sclerosis (MS) and it had a massive impact on all our family’s lives. For many years, we as a family fundraised and I thought it was about time to do it again. So we signed up!
Little did I know at the time that we, a small country pub, would be up against some major corporate companies. The pressure was well and truly on!
We organised a game called ‘Pennies for Pounds’ and our customers got well and truly carried away. So much so that we got three or four boards completed really quickly!
We then held a raffle for an alcohol hamper, but my main event was the Auction of Promises. This proved to be an amazing fundraiser and being in a village, we were lucky enough to get our whole community engaged and involved. Customers and local business jumped on board and donated their time and services to be auctioned off. We had so many different types of auction lots, from an hours’ worth of ironing and freshly home baked scones, to free swimming lessons, dog walking and even a chance to fly in a two seater plane, plus football season tickets, a day’s shooting trip – the list was endless!
The evening was a huge success and we raised just over £4,000. I was absolutely overwhelmed at how the whole village dug deep and pulled together. It made me quite emotional. Our target was obviously to raise £925 in 9 weeks, 5 days and 2 hours but in total we raised an impressive £6,000 and definitely gave the big coproates a run for their money! I really can’t express to you how proud we all felt and how much fun we had smashing through that target.
Keep going guys and girls, every penny will make a massive difference and no matter what you raise you are all heroes!
In this guest blog our October Fundraiser of the Month, Dan Young, tells us about how he raised an amazing £870 for MS-UK by walking the length of the River Thames this summer...
On 12 August, I set off to walk the length of the River Thames from the source in Kemble, Gloucester to the Thames Barrier.
When planning to do the walk, I decided to do it in memory of my Gran who had passed away after living with multiple sclerosis (MS) and as such, chose to raise money for MS-UK.
The route is 184 miles mainly following the Thames Path and at about 16 miles a day, I expected it take 12 days of walking through the summer heat. However, the British weather did not fail to disappoint. The first week poured with rain and in the second week, the temperature rose to 30C at its peak.
The weather made it harder than it already was. The long walks without seeing anyone were tough. I could walk 10 miles in the Oxfordshire countryside with only cows for company so when I finally saw another person I instantly wanted to talk to them!
Speaking of animals, they can be stubborn when they want to be. I had a number of situations with cows and sheep refusing to move out of my way, which left a dip in the Thames my only option at times. They were mostly harmless though and it was nice to roam through the fields and hills in the countryside and enjoy the long walks.
The scenery changed as I approached Reading and towards Central London. It was quite a relief to start walking on actual paths rather than cuttings in the grass as my feet started to feel every lump and bump in my path.
As I got into Central London, I soon turned into a tourist, walking past the Houses of Parliament and crossing the river to walk past the almighty Shard.
The end stretch from Tower Bridge to the Thames Barrier was the toughest! At this point, there were only 10 miles left but my feet were not in the best state. The area around the O2 gives little shade apart from the reflection of the sun off the skyscrapers of Canary Wharf but I pushed through. I finished at the Thames Barrier, 11 days and four hours after starting and had raised an amazing £870!
I am absolutely thrilled that I’ve stepped forward (no pun intended) and done it!
I’ve already started to plan my next adventure but for now, I’ll put my feet up…
Has Dan inspired you? Get in touch with Lucy if you would like to take on a challenge to raise money to help people affected by MS. Email firstname.lastname@example.org or call 01206 226500. You can donate to Dan’s cause via his JustGiving page.
One of our Community Champions, Gwynfa Podgorski, reveals how rare coins found in MS-UK collection pots can raise more funds than their face value might suggest. As a Community Champion, Gwynfa hands out MS-UK collection pots to local shops and collects the funds for our charity.
Who would have thought a 50p coin with Jemima Puddleduck on it could earn £9 for MS-UK?
Having read somewhere about certain coins being worth more than their face value I decided it was time to check my change. Having been a Community Champion for a few months now, counting money out of the MS-UK pots I have in local stores has become second nature. Much to my surprise, I have found several commemorative 50p coins in there. Battle of Hastings, any Olympics ones, Benjamin Britten, Peter Rabbit, Paddington Bear, basically any 50p coin which celebrates events over the years are all potentially worth more than their face value. Checking possible value on eBay (most sell for £1-£2) I decided Jemima could be worth rather more than 50p. Indeed, she has a new home with a buyer in Wales and after paying fees to eBay, PayPal and Postage, MS-UK has an extra £9 instead of the 50p coin someone kindly put in the pot. When I find any foreign coins in a pot I take them to my local Scope Charity shop who collect them and sell them on when they have enough.
If any of you find similar and would like to try to sell them for additional funds for MS-UK I am happy to help with advice on how to or even doing the selling.
To get in touch with Gwynfa or become a Community Champion contact email@example.com.
My name is Laura and I work on the helpline here at MS-UK. I have set myself a challenge to swim 60 lengths a week, every single week for one whole year!
Swimming isn’t something I have ever been particularly that good at; I can swim but I have never been a strong swimmer at all. I much prefer things like yoga and Pilates! I wouldn’t describe myself as particularly fit either, but I am quite active in that I spend my days chasing after two young children.
The reason for this challenge is because this month would have been my Dad’s 80th birthday. Unfortunately, he died in 2010, a few months before his 71st birthday. I’d spent some time thinking about and discussing with family that I’d wanted to do something to mark the occasion. If he was here we’d have thrown a party, so why not still do something else instead?
I thought a challenge of some kind would be good, it would get me out and doing something just for me. Me-time is needed when life can be so busy. I’m not a runner - I’ve tried in the past and it really isn’t for me…I don’t enjoy cycling so that was out of the question. I didn’t really want to do a one-off event and I’m not doing this necessarily, entirely for the fundraising. I just wanted to do something a bit different.
My dad lived with multiple sclerosis (MS) for a very long time. More years with it than without, in fact. He loved to be in the water. He was a good swimmer in his younger days and loved the benefits of hydrotherapy in his later years. The water provided a lovely sense of freedom and relaxation. A swimming challenge seemed the best option to keep that connection with something he liked to do too.
I decided to cover the distance of 80km (80 miles seemed just way too far!) for his 80th birthday but stretch this over a year to make it achievable. It works out roughly 60 lengths of a 25 metre pool every week. This is the hardest part for me… committing to go every week. My motivation will come from always thinking about why I am doing it and the fact I have no real reason why I cannot find the time in the week to do so.
Next year will be the 10 year anniversary of him passing so it seemed fitting to carry the challenge over a year to signify that too.
I have been ‘training’ since May and I’m pleased to say I have not missed a week yet! I thought I ought to do some kind of training as I wasn’t even sure I could manage one length let alone 60! My first swim back in May was really tough; I only managed 12 lengths and I was really out of puff. What I am amazed about is how quickly I have built up strength and stamina, and how much I am enjoying the peaceful time in the water.
I officially started my challenge this week and Tuesday night I swam 60 lengths for the first time ever! Now the challenge is on and I will do the same every week until the 80km is completed.
I have set up a JustGiving page for donations to the MS-UK counselling service. If you would like to donate please visit my JustGiving page.
Our Helpline team have written about alternative places to exercise with multiple sclerosis (MS) in this blog...
If you don’t live near an MS therapy centre or any of the other options mentioned in our last blog there will likely be other avenues of support. There is a raft of disability specific organisations, leisure centres and gyms that work with people with additional needs and support them to exercise and maintain physical wellbeing.
Some examples we know of are:
There are likely to be more options for power assisted exercise and supported exercise. Mainstream and conventional gyms are likely to be physically accessible and many now have specific services aimed at ensuring they are as inclusive as possible for people with additional needs. A good example of this is Lincs Inpsire who run leisure centres and gyms across Lincolnshire and offer a range of disability activities and services to help people exercise.
Most areas across the UK will operate some kind of ‘exercise referral scheme’ in partnership with health and leisure services. You will likely need a referral from your GP or other health professional. As part of this referral scheme for people with long term conditions, you will get the support of an exercise professional with experience and training in supporting people with additional health needs and the ongoing support of an accessible exercise environment. A good example of the GP referral schemes is ‘everyone active’ who supports people with long-term conditions who want to positively influence their health and wellbeing through their GP exercise referral scheme in their various centres nationwide.
We wish you all the best in finding the right exercise option for you. If you know of options that haven’t made our list why not drop us a line and share our experiences?
Don’t forget that MS-UK has a Choices booklet about exercise that we hope you will find useful.
If you would like to find out more about exercise options with MS, call our Helpline on 0800 783 0518, chat to the team on our website or email firstname.lastname@example.org.
On Sunday 13 October 2019 our Events Fundraiser Jenny supported the Royal Parks Half Marathon…
We had an amazing team of 14 take on the Royal Parks Half Marathon this year. It was a muddy one! The rain during the night before made the start and finish line very muddy so our runners knew they were going to get very messy – if only you could run in wellington boots!
Despite the overcast, drizzly weather the team were in great spirits. They were supported by our cheer point of volunteers at mile 11, all of whom had taken part in running events before so they knew how to give that much needed encouragement. And of course, we kept up our reputation of being the noisiest cheer point on the route! I would like to say a massive thank you to all our supporters – it makes a huge difference!
I would also like to say a big congratulations to our #TeamPurple runners who have so far raised an epic £4,162.82, which is well over target, with more funds set to come in. Every penny goes towards supporting those affected by multiple sclerosis to live happier and healthier lives – thank you!
Have you been inspired by this event? MS-UK have places in the Vitality Big Half in London on the 02 March 2020. The minimum fundraising requirement or this event is £250.00. To register your interest call Jenny today on 01206 226500 or email email@example.com.
In this guest blog, Shaun Collins tells us about why he has taken on not just one run in aid of MS-UK, but many! This weekend he will be joining #TeamPurple at the Royal Parks Half Marathon, here’s why…
My journey with MS-UK started in 2017 after my good friend Lewis Miller had been diagnosed with multiple sclerosis (MS).
After his diagnosis, Lewis had continued running marathons and around that time I had started running again. Whilst at that point I thought I’d be happy once I’d managed a 5k, I had always had the thought in my mind to run a marathon having grown up in London and I no longer really had an excuse. If Lewis could do it with what he was going through, what excuse did I have for not doing it!
Having made the decision, I went online to find an Autumn marathon and started by running the Birmingham Marathon in 2017. It didn’t go to plan, I hit the much talked about wall and walked most of the last 11 miles!
I have since continued running and thanks to MS-UK, got a place to take part in the Virgin Money London Marathon in 2018 which really did fulfil a lifelong ambition and this time I managed to run the whole marathon which was my aim!
I have had a year off doing marathons due to the birth of our third child but decided I still needed to do something again so I chose to run the Great North Run and Royal Parks Half Marathons this year continuing to raise money for MS-UK!
The team at MS-UK, particularly Jenny, have been amazing and have been so supportive through every event I have done!
If you would like to sponsor me for my events this year, visit my JustGiving page.
My work will match fund up to £1,000 so for every donation you give, the amount will be doubled!
I have plans to run three marathons in eight weeks next year so watch this space for more ways that you can support me and MS-UK!
Join #TeamPurple at one of our 2020 events!
This week is National Work Life week, which is all about focusing on wellbeing at work. You might be thinking about talking to your employer about your MS, but just what is the best way to inform them? Rebecca Armstrong, MSer and HR specialist reveals what to consider and what to expect
One of the hardest questions that I get asked on my Facebook group is ‘should I tell my employer?’ The issue of disclosure is a tricky one, particularly as you won’t know if you have done the right thing until it’s too late. What is true is that once you have done it there is no going back, but remember that can be a good thing. So, if you decide to disclose you then have to decide who to tell and how to do it. In this blog, we focus on these important questions and provide you with some guidance on how to make this important disclosure.
Before you arrange to speak to work, it’s a good idea to prepare what you will say. It is important to remember that multiple sclerosis (MS) can be difficult to understand and so you may need to explain exactly what it is and most importantly how it impacts you. Think about examples of how it impacts your work (if at all) that can help explain.
Be prepared for the response, we have all been frustrated with comments such as ‘you don’t look unwell’ or ‘my Aunty had MS and…’ but often this is someone’s way of trying to make sense of something. When we don’t understand something, we will try and relate it to something we do and often these (insensitive) comments can simply be that. Think about how you can pre-empt such comments by being prepared, for example, ‘MS is different for every person, in fact, no two people are the same, the impact it has on me is…’
Consider taking some resources with you, MS-UK has a range of leaflets available on its website which you can print or provide links to. These are a useful way of providing information in a simple way and of course you could take a copy of the MS-UK magazine, New Pathways!
It is also a good idea to think about what (if anything) you need in terms of reasonable adjustments. Your employer has a legal obligation to make reasonable adjustments, by being clear about what you need it will help this process. Of course, for many of us, we may not need adjustments straight away. Consider requesting a regular review (if you don’t have this already), so that if this changes you can discuss what is needed.
Once you have decided what to say, the final consideration is who to tell. Typically this would be your manager as they will be the person who supports you day to day. You can expect that they will need to tell the HR department so that you can make sure you are properly supported. They may ask you who you want to know about your MS at work and of course you can choose that you do not want anyone else to know about it.
Disclosure is a big step and one which is entirely your choice, you are not obliged to tell your employer about your MS. However, if they are not aware then they will not be able to support you.
To continue the conversation and discuss any other MS work related issues join Rebecca’s MS & Work group on Facebook.
Today is World Mental Health Day and our MS-UK Counselling team are looking at common mental health myths head on…
Myths and beliefs about mental health issues can be instilled in us from an early age. These myths and beliefs are not designed to harm – they are passed to us in good faith mainly from parental figures, care givers and the environment in which we develop. These myths are designed to protect us from emotional issues rather than support us. The result is that we learn how to suppress our emotions rather than express them. Here are some common myths we often come across as counsellors with MS-UK…
Myth 1 - Mental health problems are rare
Mental health problems are widespread. According to Time to Change, around one in four people will experience a mental health problem each year and they can affect people from every walk of life.
Myth 2 - I can’t do anything to support someone with a mental health problem
The simple response here is, yes you can!
Ask how somebody is doing. It’s highly unlikely that you will make things worse. In fact, it may be that your relative, friend or colleague needs to talk to somebody and you ask them how they are doing helps them to open up about how they are feeling
People want to feel heard. You offering a listening ear can often help more than you realise. Try not to judge what the person is saying, even though what you are hearing may be shocking. They are being brave talking to you
Sometimes the person may feel worried or feel embarrassed about what they may have shared with you and wonder how you are going to act around them going forward. Try and treat them in the same way as you did before they opened up to you
It is OK to ask if somebody wants to talk more than once. It may be that the first time you asked them they didn’t feel able or ready to talk but they feel able to talk now
Myth 3 - People experiencing mental health problems aren’t able to work
People living with mental health problems can hold down a successful job. If one in four people experience a mental health problem each year these statistics suggest that in fact we probably all work with someone who is experiencing a mental health problem.
Myth 4 - People with mental health problems can’t recover
People can and do recover from mental health conditions and recovery means being able to live, work, learn and participate in the community. There is lots of different support and help available to help people recover.
Mental health problems may not go away forever but lots of people with mental health problems still work, have families and friends, engage in hobbies and interests and lead full lives.
These websites offer support:
Myth 5 - People living with mental health conditions are usually violent and unpredictable
Most people living with mental health conditions are not violent. In fact, somebody with mental illness is actually more likely to be a victim of violence than to inflict it. According to Time to Change, the movement working to end mental health discrimination, the majority of violent crimes are committed by people who do not have mental health problems. It also states people with mental health problems pose more of a danger to themselves than to others, with 90% of people dying through suicide having experienced mental distress.
Myth 6 - Young people just go through ups and down as part of puberty – it doesn’t mean anything
One in eight young people experience a mental health problem, according to the NHS’s Mental Health of Children and Young People 2017 report. This statistic is widely thought to just be the tip of the iceberg. You may find it helpful to look at the charity, Young Minds. Visit www.youngminds.org.uk/.
Myth 7 - People with mental health problems are lazy and should try harder to snap out of it
This is not true. There are many reasons why someone may have a mental health problem and being lazy or weak is not one of them. People cannot just snap out of a mental health problem and many people may need help to get better. This help may include counselling, medication, self help and support from friends and family.
Mental health and multiple sclerosis
Depressive disorders occur at high rates among patients with MS and this can have a major, negative impact on quality of life for people living with multiple sclerosis, according to a study. However, counselling can be helpful in finding ways to talk about thoughts and feelings associated with MS.
It is World Mental Health Day and in this guest blog, Julie tells us why she took years to come to terms with her diagnosis of MS and how MS-UK Counselling has helped her…
‘To this day I struggle to think about the day I was given the news of my diagnosis. Unfortunately, it was dealt with dreadfully. I was on my own and not prepared at all. The consultant showed me my MRI scan and quite bluntly said the only thing she could think was that it was MS. I could barely breathe but knew I had to try to listen so as not to miss any information. She asked me what I was doing later that afternoon and I replied that I was due to go on holiday with my husband and daughter. She said: ‘Have a good time and try not to think about it too much.’ I couldn't believe what I was hearing, the sheer insensitivity. It took me years to accept my diagnosis and to learn to accept it.’
‘I first noticed something was wrong around 2009 whilst on a charity walk. After around 40 minutes my right foot felt wobbly and slapped the ground. I didn't take much notice and for the next few years, nothing changed much until one day when I was meeting a friend in town. I parked a way out and by the time I got to the centre my right leg really ached and I couldn't control my foot. I made an appointment with my GP who couldn't find anything much but referred me for physiotherapy. Physio had no effect and when I described the symptoms of weakness, a tickling sensation and pins and needles I was referred for an MRI of my spine. This came back as normal but the consultant decided I should have further imaging of my head and neck and it was this scan that showed the lesions.’
‘One day, my MS nurse pointed out that every year I bring up the bad experience I had when I was diagnosed, and maybe I should consider some counselling.
‘I had no reservations about accepting help and found it a relief to talk to my counsellor. My first session was comforting and I felt listened to and cared for. I felt I mattered.
‘The service has helped immensely. I have discovered I am actually stronger than I thought and have learned coping mechanisms for the times that are tricky.
‘I would say to anybody struggling emotionally not to wait as I did and to seek help. It is available, and any good GP will help, or you can self-refer. The good thing about the MS-UK Counselling service is that the people have knowledge of the disease which makes a huge difference.
‘I have also found exercise and meditation hugely beneficial in helping with anxiety.’
About MS-UK Counselling
MS-UK Counselling is confidential and open to anyone living with multiple sclerosis. MS-UK counsellors are registered or accredited with the British Association for Counselling and Psychotherapy (BACP) with knowledge of MS and its impact on mental wellbeing. MS-UK is a BACP organisational member and our number is 275169.
Register online today or call us on 01206 226500 to find out more.
As part of our series of blogs today for World Mental Health day, Adam tells us about his first counselling session with MS-UK and how he felt supported to open up to someone who was completely removed from his experiences of living with multiple sclerosis…
‘I was first diagnosed with multiple sclerosis (MS) in March 2018 after one episode of symptoms. After I was told the news I was initially in a state of shock and just remember my wife bursting onto tears. I didn’t want to see or speak to anybody and I just couldn’t believe what was happening.
‘I have four children and all I could think of was them. I had a million questions in my head. How would I look after them? Would they end up looking after me?
‘The biggest feelings were ones of guilt and helplessness. I felt like the diagnosis meant my life was pretty much over and I would be a burden to those I am closest to. The feelings of helplessness were due to the lack of information and the unpredictability of the disease. Everything is a ‘maybe’ as each person is different so it’s a difficult diagnosis to understand and explain to others.
‘I found the information booklets produced by MS-UK and the MS Trust a great way of not only explaining the condition to friends and family but also for me to understand the condition and that the things I was feeling were normal.
‘I saw a tweet from MS-UK which mentioned the counselling service and I thought to myself that it couldn’t hurt to try. The idea of counselling did have an appeal.
‘I feel lucky as I have a great support network but it’s hard sometimes when you do want to talk about MS but don’t want the guilt of burdening someone close to you. I did have reservations, mainly because it was a new experience and that unnatural feeling that comes from sharing things with a stranger. Fear of being judged came into it as well, although I quickly realised this was not something to worry about.
‘The first session left me feeling so positive. It was just so nice to have someone really listening. Someone who is independent, who doesn’t know me but just wants to support and help.
‘When we went through the initial checklist of things I may be struggling with, I did have a realisation that some of them were affecting me more than I thought. You do wonder how talking through things will actually help and this is perhaps the biggest reservation, but after just one session I absolutely understood how I could benefit from the service.
‘Counselling has helped me really think about my needs and gave me the opportunity to be reflective in my thoughts about how I interact with people, what I enjoy doing and how to feel positive about the future.
‘This service also helped me feel empowered to talk through some of the anxieties I was feeling living with MS. It really did feel like a journey and I do think about decisions and choices in a different and more positive manner.
‘I have definitely got better at recognising the things I’m proud of now, no matter how small. Using the MS-UK counselling service has made me realise that sometimes the simplest achievements can be proud moments to celebrate.’
About MS-UK Counselling
MS-UK Counselling is confidential and open to anyone living with multiple sclerosis. MS-UK counsellors are registered or accredited with the British Association for Counselling and Psychotherapy (BACP) with knowledge of MS and its impact on mental wellbeing. MS-UK is a BACP organisational member and our number is 275169.
Register online today or call us on 01206 226500 to find out more.
When it comes to exercise and multiple sclerosis (MS) we know exercise has been shown to improve the overall health outcomes for people with MS. However for people living with MS there are often many barriers to adopting a well-planned bespoke exercise programme with an emphasis on health and wellness.
One area that the MS-UK Helpline often offer support is mapping out where people can go to find supported or assisted exercise in their community that will understand MS or have experience of supporting people with long term conditions.
There are around 60 MS Therapy Centres in the UK. All are independent charities and offer a variety of different types of exercise and physiotherapy. The common theme across all of the centres is ‘self-help is our way of action’. Many of the larger centres may have support groups, MS nurse clinics, counselling and benefits advice. Some of the smaller centres will likely be volunteer led, only be open a couple of days a week and only offer limited services.
From looking at what kind of exercise support is available we have seen examples ranging from gym work to hydrotherapy, from yoga to Pilates, from chair aerobics to specialised power assisted exercise equipment. The centres also offer various other therapies, some of which include oxygen therapy, massage and reflexology. If you have a therapy centre near you, it is worth seeing what services they provide.
The therapy centres are a great resource but there are many areas that do not have a centre and where options are few and far between.
What if there is no centre nearby, or you don’t really know what you are looking for, and maybe feel that a general gym isn’t quite enough? To find a gym instructor with a good understanding of MS or knowledge of exercises suitable for people with a long term condition can be tricky.
Having an assisted exercise and bespoke tailored program to suit your needs can make the whole experience much easier. Having something designed specifically for you can help to ensure that exercise will be maintained and you can stick to it over time. This can, therefore, help maintain ability, develop stamina and instil more confidence.
If there is no MS therapy centre near you there may be other options. There are some MS specific organisations that are not therapy centres that offer physio and exercise support. The MS Research and Relief Fund are based in the North East of England and offer a wide range of physiotherapy and fitness support from one to one sessions, seated exercise, exercise bikes, Pilates, classes and a vibrogym. They offer outreach across the region to enable as much accessibility as is possible.
MS-UK has a wellness centre Josephs Court in Colchester. The centre is open six days a week with some evening availability too. There is a range of specialist neurological rehabilitation equipment and power assisted exercise options, as well as items that you would expect to see in a more traditional exercise and physiotherapy environment. The centre also offers pain management services (APS therapy) complementary therapies, physiotherapy and social activities.
The MS Society and the majority of its local branches will offer some kind of activity and exercise options. They also have an ‘MS Physical Activity Specialist’ service who can be contacted via their helpline service. The MS Physical Activity Specialist can help find accessible activities in the area, complete an assessment of your needs, create an action plan and offer ongoing support over a 12 month period.
If you were wanting to exercise at home or at your local gym and were wanting to follow a programme developed by someone with a good understanding of MS, it may well be worth looking into connecting with Dom Thorpe. Dom is a specialist coach working with people with a disability. He has specialist programmes for people with MS called the MS warrior training programme and the MS custom fit programme. His services are chargeable. He does also have a Facebook group called ‘Multiple Sclerosis (MS) Fitness & Exercise Motivation with Dom Thorpe’. In this group, Dom and the members of the group share tips and give peer support to each other to help with exercise goals. Dom also has a series of YouTube videos which may be useful for you. He has worked in partnership with the MS Society to develop a programme that may well support you with work outs at home.
Mbodies Training Academy is an education provider specialising in Continued Professional Development (CPD) education for Physiotherapists, fitness focused medical professionals, Pilates Instructors and advanced fitness professionals. Mbodies have training and qualifications titled ‘Understanding Multiple Sclerosis for Exercise Professionals’, ‘Exercise for MS Specialist’, ‘Pilates for Multiple Sclerosis Specialist’, ‘Pilates for Neurological Conditions’, and ‘Exercises for Neurological Conditions’. The Mbodies website has a search for an instructor function to help you find a qualified professional near you.
We have now published part two of this blog. If there are any options that we have missed, please do drop us a line or call 0800 783 0518. We always listen to people affected by MS and it will inform the work of Helpline in future.