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MS-UK Blog

Introducing MS-UK Online

Posted on: January 18 2021

Dean.JPGDean Jeffreys, Online Programmes and Project Manager, explains MS-UK’s new national service and why you should get involved

Hello! I am the newly appointed online programmes and project manager here at MS-UK. I have the pleasure of launching our new and exciting online service for 2021. I have been working at MS-UK for just over three years now, and I will be using this experience to deliver and offer a wide range of online activities for the multiple sclerosis (MS) community.

This year, we will begin by launching our online exercise classes that are accessible for all abilities, and showing you how to get the most out of exercising from home. In addition, we will be starting other new classes and courses that will be the core offering from MS-UK. This includes mindfulness courses, chair yoga sessions, and our peer support service that will help you connect and stay socially active with others.

As we move forward in the year, we will be adding many more activities that you can get involved in. This includes live information sessions on topic areas such as diet and nutrition, symptom management, and complementary therapies. We will also offer alternative activities to those that get you physically active, including sessions on things such as poetry classes and arts and crafts.

As with everything we do at MS-UK, it is community-led, so if you have suggestions for activities you would like to see us hold online, you can email us register@ms-uk.org and tell us what activities you would like to see in the future.

FB photo Alan.jpgOnline exercise classes

Starting in January 2021, we have our new online exercise classes, with six classes taking place every week on a Tuesday and Thursday from 11am. The classes are structured in a way that will make them accessible for all.

The classes themselves have been specifically designed to help people stay active at home, and will be delivered by our Exercise Specialist, Alan Pearson. These classes will give you the confidence to manage your wellbeing independently by attending the classes and practising the exercises in your own time.

How the classes are structured

  • Level one (11-11:30am) will focus on exercises for those who are seated, have trunk (core) weakness and have limited upper limb movement
  • Level two (11:45am-12:15pm) will be for those who can transfer from sitting to standing independently but may require assistance or the use of a walking aid
  • Level three (12:30-1pm) for those who mobilise independently with minimal impairment

Find out more

Please visit our website page www.ms-uk.org/ms-uk-online to see what we have going on and to book a class. If you have any questions and would like to know more about what we are offering, please email register@ms-uk.org or call MS-UK on 01206 226500.

Thank you for reading and I hope to see you in a class with us soon!

Meet Matthew Swan, Chair of our Board of Trustees

Posted on: January 15 2021

Matthew  .jpgHello, I'm Matthew, my role within MS-UK is the Chair of the Board of Trustees which I took on during 2019.

My first introduction to MS-UK was some years back now when I attended MS-UK’s Summer Ball’s or the December Lunch held in London having received invites from friends who were long-time supporters. Although being a national charity the staff and supporters were very friendly and I could tell the organisation had a real family feel.

I have lived in Colchester, Essex for nearly 20 years with my wife and three now teenage daughters and when I was asked if I would be interested in being a trustee I was honoured. MS-UK gave me a lifetime opportunity of running in the 2013 and 2018 London Marathons and if I could help them in any way I would. I joined the board in 2017 and became Chair in 2019.

All of my girls have helped out at either the Colchester Half or Virgin Money London Marathons and they look forward to the events. They are always made so welcome as part of the team. It’s not easy getting teenage daughters to put on the t-shirts and get involved but they always do for MS-UK.

My role as Chair of the Board is to ensure all runs as smoothly as possible and we are all heading in the right direction. As you can imagine 2020 was very eventful and challenging for us all. I have to say though that my fellow board members and all the staff pulled together really well to see us through the year. Almost weekly zooms through March to June in a strange way actually brought us closer together, even though physically we were far apart. We have yet to catch up face to face for over a year but that time will come.

At the end of last year, I received what I thought was a scam email telling me I had been included in the Queens New Years Honours List. After spending a few days trying to decide if it was real or not I finally opened the attachment. To my surprise, it was real and not a virus. I was completely overwhelmed to have been recognised for my services to the charity sector and feel very lucky. Thank you to everyone congratulated me.

I, like all of us, am now looking forward to 2021. The charity is under great leadership with our CEO Amy and her team and we have a clear direction of travel. I’m Looking forward to catching up with as many of you as possible, at as many events as we can have in the coming months. Thanks for all your support it means so much and keeps the family spirit alive and well at MS-UK.

Dealing with uncertainty

Posted on: January 08 2021

Pic - blog.jpgMS-UK Counsellor Jas Sembhi explains a simple way to cope with worries

Something that comes up a lot in counselling sessions is people saying that they are struggling to manage the uncertainty about their future living with MS (multiple sclerosis). The uncertainty may be due to not knowing how long their present symptoms might last, when another relapse might occur, how long the relapse may last or worries about ‘what if the symptoms do not go away if I have another relapse?’ Thinking and worrying about the ‘what ifs’ can affect life in the present. The worry may be so consuming that person finds they spend less time focusing on what is happening right now.

Write it down

One of the ways I work with people in dealing with uncertainty is by getting them to make a list of all the things that they are uncertain about. We can do this together in the session as it might help to talk this through with someone. Or they may wish to go away and do this after the session, and it is something we can pick up on the following week. The reason I ask to make a physical list is that sometimes it is easier to focus on what we have written down, it will be there for us to refer back to when needed as we work through it.

Once we have this list, we then work on making two columns. One for the things that can be controlled and planned for, and one for those that cannot. For the list of things that cannot be controlled or planned for, together we work on self-compassion and soothing emotions that the client would like to manage.

Regaining control

One way we work on fears about an uncertain future is by clients starting to remind themselves that ‘this is something not in my control right now, I cannot always control what may or may not happen in the future, but I can start to focus on what I am able to control and plan for.’ Hopefully, by being able to soothe fears with this kind of self-talk, a person can use this new way of thinking when the worries of the ‘what if’ creep in. Clients can start to re-train their mind and bring back their focus to what they have spoken about in the second column – the things they can control. To be able to regain control and then start making plans can be empowering and allow the focus to be on ‘I can’ instead of ‘I cannot’.

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‘I always wanted to be a pirate’

Posted on: January 06 2021

Debra.jpgDeborah Searson was diagnosed with multiple sclerosis during lockdown… She is sharing her story to help others who may find themselves in a similar situation

This is my story of how I became diagnosed with multiple sclerosis (MS) after the shock and realisation had set in, I realised life doesn’t stop and for me, the way through was to put into writing my experience with a little added humour.

I woke for work at 6am on a Spring Saturday morning in late April 2020, I stood and stumbled slightly, probably due to the few red wines I’d had the night before (or so I thought) I went back into the bedroom and stood in front of the mirror to put on a little makeup. As I stood there, I was trying to focus my eyes on my face and just couldn’t get a clear picture. How many wines did I have last night? My job involves me at times being in a senior role and that day was one of those, Great! I had no choice but to go in, with the Coronavirus very much part of my job, I had to go and make sure everything and everyone was OK. I only managed to stay an hour or so.

Once home I slept hoping when I woke up it would have resolved itself but it hadn’t. Whilst this was happening, we were in a full lockdown due to Coronavirus, I rang the eye clinic at a local hospital and asked if they could see me. What I’d noticed is that it seemed to be double vision I was having, where images were on top of one another not side by side and that it did return to normal if I closed one eye? They were unable to see me due to pressures at the hospital so I left it a few more days hoping that it would resolve by itself.

I eventually managed to get an eye examination at an Opticians but this was done at a social distance and they told me they thought that I may have Strabismus now to anyone that is not an optician, meant I had cross-eyes! What? How? Why have I never noticed this? They said I would need to wear a Prism on my glasses which would help restore normal vision, but they couldn’t give me one due to the pandemic.

A few more days passed and the double vision was starting to make me feel like a drunken sailor ready to walk the plank, I remember texting one of my friends who also works at the same place as me and they somehow managed to get me an eye clinic appointment (lifesaver literally).

So eventually, looking like an extra from Pirates of the Caribbean, with my eye patch on, secretly enjoying the daily fancy dress, I got an eye clinic appointment and, on the photos/scans they’d taken of my eyes, they said there seemed to be high pressure on the optic nerves and I would need a lumbar puncture. After which I was diagnosed with Idiopathic Intracranial Hypertension.

Over the following month, I began to feel worse by the day and in late May 2020, I was in and out of the hospital, sent home each time with what they thought was Gastroenteritis.

It wasn’t until I went for a follow-up eye clinic appointment in June 2020 the consultant brought up the latest MRI scan results showing I had extensive inflammation on the brain. I was kept in hospital and given steroids, it was here that the words multiple sclerosis were first spoken to me. In all honesty, I’ve worked in the medical profession for the last 15 years and I didn’t really know much about MS. The MS Society website helped me get to grips with it and reading other blogs made me feel less alone.

I have launched a blog and if anyone would like to read further about my journey with some humour added in you can visit, Youregettingonmylastnerve.co.uk

“The pressure was building. What happened if I couldn’t do it?”

Posted on: January 05 2021

Sarah Cook.jpgSarah Cook, our amazing fundraiser of the month, on her biggest challenge – running 100k in one week

I’ve always loved running for as long as I can remember. Any sporting activities at school that involved running – 100m, 200m, 800m, hurdles – I was put forward. ‘Sarah will do it.’ I remember my Dad saying ‘I think you’re better at the 200m hurdles without the hurdles!’

Over the last couple of decades, running has been my one constant. From moving out of home at 18, going to university, moving city, changing jobs, moving city again, having children, changing jobs again, starting a business, starting another business – all the usual things that happen in life.

Then the most unusual thing happened – Covid-19. I was scared, frightened, worried, and uncertain, just like everyone else. I didn't know what to do to relieve the stress and feel calmer. Then I just thought I’ll do what I always do but just a bit more – running.

So whenever I felt a little anxious I’d go running. If I felt very anxious I’d go running. I ended up running quite a bit! It can release lots of emotions and I cried a number of times while running. All good Corona therapy I decided.

Things started to get better. One day I realised I’d run 57k in a week! I was amazed. But it wasn’t difficult so I thought I’d set myself a challenge. I’d run 100k in one week.

Finding purpose

I told one of my running buddies while we were doing a run and, by the end of a muddy 10k, I’d decided there’s no point doing a challenge like this if it doesn’t have a purpose.

I needed to make sure it could actually make a significant difference to other people.

There was one clear, obvious choice. I wanted to make a difference for people with multiple sclerosis (MS). My wonderful mum has MS, and if I could do anything in the world to take it away, I would, but I can’t. But I could run. And run a lot and try to raise as much money as possible for people like my mum.

I told my mum about my challenge and asked her which MS charity she’d recommend I support. She didn’t hesitate and said MS-UK.

Sarah Cook 3.jpgChallenge set

I set a date. I cleared my diary. I bought new trainers and kit. I prepared myself for seven mornings of running and afternoons of tea and cake! I set up a JustGiving page and then crossed my fingers that a) I’d be able to do it b) people donated c) it didn’t snow and scupper my plans!

Within just 24 hours I’d received so many donations from friends and family – every time I checked, there was another donation. I was utterly gobsmacked! I’d asked my daughter what I should set as my JustGiving target, and she said £1,000! I thought, flippin’ heck, I’m never going to reach that! But I decided that’s the point of a goal, to push yourself further. It didn’t matter if I didn’t reach it, but let’s aim high anyway.

I hadn’t realised that the charity would be notified of my challenge and start receiving the money straight away. Lucy from the fundraising team rang me and we immediately had a heartfelt conversation. We had a mutual connection in our passion for helping people with MS, for making a difference and making a real impact on their lives. During our call Lucy checked the JustGiving total and it had gone up again while we’d been chatting! The feeling was incredible. I felt amazing and, each day in the run up to my challenge, I received more and more donations, so much so that we increased the target to £1,500! I felt overwhelmed by people’s kindness and generosity.

Each day my son would ask me ‘How much money do you have now Mum?’

The pressure was building. What happened if I couldn’t do it? What if I let all these people down? One of the first to donate was my lovely friend Deb. She said, ‘We’d sponsor you to sit on the sofa all week and eat cake. So doing this is amazing!’ Maybe that’s my next challenge, 100 cakes in seven days!

Day one approached. I’d calculated I needed to run 14.3k per day for seven consecutive days to equal a total of 100k. I was fairly apprehensive, but knew that once I had day one under my belt I’d be on a roll. I decided for my own sanity, and to stay connected, I would do a Facebook Live each day, during or after my run. Maybe this would budge people to donate too?

Sarah Cook 4.jpgIt worked

Well on day one I had £80 donated within minutes of my Live! This certainly made my mind up about doing a daily broadcast.

I also decided to add to my challenge and run a different route each day, to make things a little more interesting. The best runs were those I did with running buddies. One of those was Becky, who before our run I’d never met in person before. So this was even more special than I’d ever imagined.

Countryside adventure

I met Becky in Wotton-Under-Edge (proper countryside for a city girl like me). We headed out of Wotton on a beautiful winter’s day towards Kingswood, through the lanes to Alderley (past the manor house where the Sotheby’s chap lives – his children were friends with Princes William and Harry!) We then took a lane that leads to the Ozleworth Estate. We passed estate cottages where they rear turkeys for Christmas and we saw a shoot trailer transporting the beaters. (Becky gave me a countryside lesson on the lingo.) They were even dressed head to toe in tweed (extra countryside bonus points). The weather was phenomenal, the company second to none, and I added 15k to my tally.

On the very last day of my week’s challenge I was £53 off my £1,500 target and, after sharing this information on Facebook, two friends both instantly donated £53 each! Yet another gob-smacking moment to add to the growing list that week.

Throughout the whole experience I was blown away with people’s generosity and kindness. I’ll never forget their support for me and for MS-UK, especially during such a hard year and just weeks before Christmas.

Lucy and I continued to communicate throughout my challenge, with her addressing emails to me as the ‘MS-UK Champion!’ I feel incredibly honoured to be supporting this wonderful charity and to have the genuine enthusiasm and kindness from Lucy and the team.

In total, including the gift aid donations I raised nearly £2,000 for MS-UK. To say I am proud is an understatement.

This is an epic way to end a truly challenging year.

If you are considering doing a similar challenge or any type of challenge for that matter then all I can say is go for it!

If you'd like to donate, you can find Sarah's JustGiving page here www.justgiving.com/fundraising/sarah-cook100k4ms

If you would like to take on a personal challenge like sarah then call lucy on 01206 226 500 or email Lucy@ms-uk.org

 

Medical retirement - what you need to know

Posted on: December 18 2020

Rebecca Armstrong2this one.jpgMSer and HR expert Rebecca Armstrong explains the ins and outs of medical retirement

A regular point of discussion on the MS & Work Facebook group is around medical retirement. Many people with multiple sclerosis (MS) reach a point where if feels impossible to carry on at work due to their condition and this can lead to a crossroads.

If you find yourself at the point where you feel you can no longer continue at work, retirement might be the next step. The first and most important question to ask yourself is whether it is your current job that has become too much (even with adjustments) or if any kind of work is too much. This is important as medical retirement is a big step and one which symbolises that you will not work again (although some pensions may allow a restricted number of hours). If you feel that it is your current job that is too much you might want to consider looking for another job which is better suited before making the step into retirement.

If, however, even with adjustments, you are unable to work, then retirement is a way to access your pension early.

If you feel this is the next step for you, there are a number of things to look at

  1. Start by speaking to your pension company. They will be able to give you a clear indication of what you will get financially as well as what their criteria is for medical retirement. Many have tiered systems from full retirement where you do not work, to retirement where some work is allowed.
  2. Once you know what your pension will pay, it’s worth doing some research into what additional benefits you might be entitled to over and above that. This might be in the form of Employment and Support Allowance or Personal Independence Payment. These two things will give you a picture of what medical retirement will mean financially to help you plan.
  3. Any form of medical retirement will require the support of your consultant and/or MS nurse, so it is a good idea to discuss it with them. They are typically looking at how you are now and your prognosis for the future. For this reason medical retirement is often associated with the progressive forms of MS however, there are cases where someone with active relapsing remitting MS can also apply for retirement successfully.

Once you have completed these steps and have a clear picture of how the retirement would work for you, the next step is to discuss it with your employer. Once you raise it, you are letting them know you are unlikely to be able to continue work, which is why I always recommend this as the last stage in the process when you are sure. Medical retirement is ultimately a dismissal but it is managed as more of a mutual agreement. It is a big step and alongside this process it is worth considering counselling and other support from the MS-UK helpline.

This was origionally published in New Pathways magazine.  Subscribe to New Pathways

 

‘He doesn’t complain, he doesn’t moan and he doesn't give up’

Posted on: December 15 2020

Simon Gardner 2.jpg
Left to right - Simon Gardner, Nigel Gardner, Ed Gardner and Phil Gardner

In October this year, I decided to run a virtual marathon, my first one. I began training, building up and getting the miles in my legs, tentatively at first to avoid injury but building up the distances as I went. It was very hard but didn’t take long and like my dad, I (quietly) don’t give up.

My motivation… my dad. An athlete, a footballer, champion snooker and darts player, canoeist and lifelong fisherman. He received his multiple sclerosis (MS) diagnosis when he was 27 years old, not long after I was born. He is now 66 and although the progression of the disease has been relatively gradual, it has taken away all those things. He has lost the vast majority of the mobility control in his legs amongst other things. Having lived with MS for 40 years I cannot believe how resilient and calm he is and yet open. We all keep a little back from our loved ones and I do not doubt that he does because this is his and he owns it. He shares what he wants and faces into what he doesn’t. He doesn’t complain, he doesn’t moan and he doesn't give up.

I originally intended to run the Official 2020 Virtual TCS New York City Marathon solo and self-supported, however, an ambitious practice run turned into the full distance a week ahead of schedule! I was out on the trails and things were working out well so decided to push on to make sure I understood what the ‘real thing’ would be like… good job too as I learnt a lot about what my body needs when under this much pressure. I thought of my dad.

On the day, after designing my route and packing my vest with food and water, I decided to set off from my dad’s home and take a nostalgic run through the old days along roads, towns and villages I remember when growing up. The weather was shocking with heavy rain and being soft underfoot - so Garmin ‘Set', crime audiobook ‘On’ (Dad loves detective stories), head down, swing the arms and see where the legs take you!

20 miles in and to be honest I’d had enough of natural beauty, enough of my audiobook, my body was rejecting food and all the water in the world was not hydrating me. There was no reason I could be, but I was bored! So I called my wife and spoke to my kids who buoyed me up. Then called my dad who picked up just as the wind and rain returned and couldn’t hear a damn word I was saying! They say the last six miles are the worst. That said, I completed it, solo and self-supported while playing detective in the pouring rain.

My reward (medal) is still in the mail from US however the New York Road Runners app provided this augmented reality one which really lifts the spirits when you award it yourself while you pose for as good a selfie as you can get (or care about getting!). My other reward was a cold, then hot bath, a can of American Cream Soda, nine sausages with huge amounts of Dad's mash.

I was reading about MS-UK and what caught my eye, in particular, was their focus on the mental health of individuals with a multiple sclerosis diagnosis. My dad, my brothers and I are all fortunate to have one another to provide all kinds of support, particularly through lockdown, but we all know there will be some serious and important decisions to make in the next few years. We will need to strike a balance between support and independence. There will also be times when we do not know what to do, or if it is the ‘right’ thing and we will need the support of MS-UK.

As for fundraising, I told my story to those at work, those I run with or who I know run. With so many charities, particularly in 2020, needing more support than ever I didn’t want to appear to pressure them but when explaining the reason for my choice and the impact the support of MS-UK will one day have, people gave what they could.

Simon has raised an incredible £737.53 for MS-UK, here is the link to his fundraising page https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=SimonGardner11&pageUrl=1

If you would like to take on your own challenge to raise money for MS-UK like Simon did, please contact Lucy today on 01206 226500 or lucy@ms-uk.org

Monkey Sox have raised £11,530!

Posted on: December 15 2020

James and Lianne from Monkey Sox say thanks, and don’t forget to get your Christmas socks!

Hi everyone, and a very Merry Purple Christmas to all.

monkey2.jpgIt’s been a tough year for so many and so we wanted to share some thanks and happy news with a little update from Monkey Sox.

During the pandemic, we have been so grateful for the support of so many regular and new customers. We have remained open, selling socks online and, despite all the cancelled markets and events, we were proud to donate our target amount to multiple sclerosis (MS) charities for our second year of business.

This takes the total donation to MS charities from sales of Monkey Sox to £11,530! For those of you not aware, we donate 50% of profits equally to three MS charities, of which the fantastic MS-UK are one. 

Included in this was the sale of 64 pairs of our special #TeamPurple socks for MS-UK sports events, a design we are very proud of that matches the MS-UK kit. 

monkey3.jpgOf these, we donate £5 from every pair exclusively to MS-UK, and we absolutely love seeing your photos of the socks in action. It’s testimony to the incredible community of fundraisers at MS-UK as you have all taken part in so many personal and virtual challenges this year. Amazing efforts! We can’t wait for the group events to begin again in 2021.

We know the team at MS-UK have been working tirelessly during lockdown too, and the new services they are offering for both counselling and exercise across the country is really a big achievement. We are proud to be in touch with, and supporting, a team dedicated to making a difference to the lives of people living with MS. 

monkey4.jpgEveryone knows that socks are great gifts at Christmas, so if you would like to support them, we have many designs in both leisure and sports socks, and not forgetting little monkeys with our kids’ range!  Please go to www.monkeysox.org, and as a thank you we are giving all MS-UK readers free postage on any order with code MSUKFREE until 31.12.20. 

Please keep in touch. We hope to meet many more of you in 2021, and we wish you all the very best as we enter the New Year. 

Speak to you soon!

James and Lianne  

I struggled to find anyone who I could really relate to

Posted on: December 14 2020

Amy Thompson explains why she created MS Together, and how you can get involved

Amy Thompson.jpgMS Together is a support group for young people aged 18-35 who have been diagnosed with multiple sclerosis (MS) and live in the UK/Ireland.  

The group was founded last year by me, Amy Thompson, after I was diagnosed with MS at the age of 21. I struggled to find anyone who I could really relate to and I couldn’t find any support groups that existed just for young people. Over the last year, the group has grown from just six members to over 330 and I have huge, exciting plans for the future of MS Together. 

We offer a private Facebook group for members to connect, an optional WhatsApp group chat for more frequent support, virtual meet ups (three to four per month), and in-person meet ups (when possible). So far, we have had three in-person meet ups and we have hosted a number of virtual events including a bottomless brunch, motivational and research talks, a murder mystery, a mind-set evening, bingo and quiz nights.  

Christmas party

On 20 December 2020, MS Together are throwing a virtual Christmas Party for all members to enjoy. As part of this, we have organised a Christmas Raffle and we’ve been donated some incredible prizes, including several vouchers, personalised gifts, chocolates and snacks, wellbeing sessions, crates of beer, hampers and bundles, perfume, jewellery, art, home decor, and a top mystery prize! 

All profits raised from the raffle will be donated to MS-UK who have helped many of our members this year through their counselling service. We are very grateful for the work they do, and we are delighted to be fundraising for them. We have already raised over £500 and we still have almost three weeks to go. 

Raising money for charities like MS-UK is so important, especially during these challenging times. There are so many ways you can fundraise nowadays, and the team at MS-UK will support you all the way. 

If anyone would like to find out more about MS Together or our Christmas Raffle you can email mstogether@outlook.com. You can also follow us on Instagram @mstogetherofficial or request to join our private Facebook group here www.facebook.com/groups/mstogetherofficial.

We basically offer a safe and supportive space for all members whilst also making it fun, positive, and uplifting. We would love to be able to share more information about the group and we will welcome any new members with open arms!

If you would like to speak to the team at MS-UK about your own fundraising idea, then please contact Lucy on 01206 226500 or email Lucy@ms-uk.org

"Conversations became sadder. My outlook became more pessimistic"

Posted on: December 09 2020

Martin profile 4.jpgIn almost 40 years of living the multiple sclerosis (MS) dream, I would be lying if I said that loneliness did not come included as part of the package as if, say, it was some kind of cruel BOGOF deal. But as glib as that sounds, the stats for MSers living with the subsequent consequences of depression are truly alarming.

As many as 50% of MSers are affected by it and 25 percent of those display at least one symptom of post-traumatic stress disorder (PTSD). Although I never admitted at the time to suffering with any kind of mental health issue, on reflection, there is no denying I was just as lonely as I was emotionally isolated.

The loneliness of living with MS represented the worst of times which, in truth, were of my own doing. I was a twenty something when I was first diagnosed and almost immediately began losing my sense of self. It was difficult to cope as I began unconsciously nesting for a life of unhappy solitude which was not a happy place.

I believed nobody understood what even I could not understand which made for a very unhappy mental struggle. Opportunities to enjoy life were not fulfilled. Invitations to mix with friends became fewer. Conversations became sadder. My outlook became more pessimistic. Before diagnosis this was not who I was, but afterwards it was who I became.

I have never referred to myself as a survivor but, and as clichéd as it sounds, it took the love and belief in somebody else to make me aware. To help me recognise and lose my MS baggage that was keeping me in a prolonged state of isolation and loneliness. To stop me obsessing about what I could not control by enjoying instead what I could.

As an MSer, the past represents long periods of self-isolation. Of many years hiding myself away and leaving it to my wife to cover for my absences with lame excuses. If only I had been emotionally stronger – but that was to come later. Just how much I have moved on, however, has been demonstrated by the way I have been able to live with MS in these lockdown times.

Although there have been moments during Coronavirus where it has felt as though I had hit the wall, it is the memory of having already lived a different kind of loneliness that makes me realise that nothing will ever be as lonely again.

This Christmas, help us stop loneliness by donating to our appeal

Donate to our Christmas appeal

MS in the time of Covid

Posted on: December 08 2020

iStock-1168227653.jpgFrankie Washington and Dawn Langdon from the Royal Holloway, University of London discuss how the pandemic has led to people leading less healthy lifestyles

The Covid-19 pandemic has caused enormous disruption to our daily lives and there have been particular challenges for people with multiple sclerosis (MS). Staying safe and well is the most important thing and following all government Covid advice must be a priority for all of us. Keeping a focus on health and wellbeing is also important, and you can do this in several ways.

1. Managing your MS

With all the stress and restrictions of the pandemic, even keeping normal life going can be hard. But continuing to manage your MS well is still important. Although it might need more energy and persistence to get appointments and medication, it is very important that you manage your MS optimally, even in these difficult circumstances. Why not enlist a friend or relative to help with the phone calls or transport? Most people want to help, they just don’t always know how or when.

2. Physical activity

Survey data indicates that about half of people with MS have stopped or reduced their physical activity during the pandemic. Physical activity is important to maintain health and wellbeing. It is a good idea to put together a weekly plan for your physical activity, while following government Covid guidelines. Resources about physical activity for people with MS, including accessible exercises, can be found on our YouTube channel which you can go to by clicking HERE, and we also run exercise classes on Facebook Live twice a week which you can join in with from home. Click HERE to go to our Facebook page, give it a ‘like’, and you’ll get all the information you need. Click on the ‘videos’ tab to access all previous sessions, too.

3. Diet

It can be hard getting shopping and cooking organised in the Covid era, but diet also has a role in optimising your health and wellbeing. Unsurprisingly, in one survey a third of people reported gaining weight during the pandemic and this is also true of people with MS. In fact, there is evidence that people with MS eat much the same things as the rest of the population. But eating healthily is probably more important for people with MS.

A small uncontrolled study reported that people with MS who followed a low glycemic load diet, with support, experienced improvements in sleep, mood, anxiety, emotional health, and pain. Advice about healthy eating and managing your weight can be found in our Diet and Supplements Choices booklet HERE but in fact good general nutrition advice is the same for people with MS as the rest of the population. The NHS has some helpful advice on weight loss at https://www.nhs.uk/live-well/healthy-weight/start-the-nhs-weight-loss-plan/.

You might want to set up an online group, or you may already be in one, where you can meet up to prepare and eat healthy food, encouraging and supporting each other. Healthy doesn’t have to mean boring!

4. Mood

The COVID pandemic has affected the mental health and wellbeing of the general population, unsurprisingly given the restriction of activity and isolation that it has brought. It appears that this impact is more pronounced for people with MS. One study reported that compared with the general population, people with MS experienced more depressive symptoms, a worse sleep quality and perceived an increase in fatigue level, one of the most disabling symptoms of MS as you will know.

Sometimes a few simple steps can help to improve mood, and the NHS has got some good advice here https://www.nhs.uk/conditions/stress-anxiety-depression/improve-mental-wellbeing. There are ways of coping with stress that seem to work best. These are active strategies, such as

  1. Support. Talking about a stressful event with a supportive person can be an effective way to manage stress. Seeking external support instead of self-isolating and internalising the effects of stress can greatly reduce the negative effects of a difficult situation.
  2. Relaxation. Any number of relaxing activities can help people cope with stress. Relaxing activities may include practicing meditation, sitting in nature, or listening to soft music.
  3. Problem-solving. Identify a problem that is causing you stress, and develop potential solutions for effectively managing it.
  4. Humor. Making light of a stressful situation may help people maintain perspective and prevent the situation from becoming overwhelming.
  5. Physical activity. Exercise can relieve stress. Many other types of physical activity can help people cope with stress. See above for ideas.

Why not devise a menu a coping menu of your own, to use when things get difficult. For example, talking things through with friends or relatives, taking a walk, doing an online yoga class, or tidying a cupboard.

If you feel that professional help is required, then contact your GP or MS Nurse. Many psychological therapy services are now working online, so you wouldn’t have to visit a hospital or clinic to get help.

Hopefully, you are not feeling too overwhelmed by Covid and this article has given you a few ideas to support your wellbeing. We are currently conducting a survey about living with MS in the Covid era. If you wanted to help us, you can participate via https://rhulpsychology.eu.qualtrics.com/jfe/form/SV_3FahObokk4tdwTX. It takes 15 minutes. 

Frankie Washington is a graduate psychologist who is training to be a clinical psychologist. Dawn Langdon is Professor of Neuropsychology at Royal Holloway, University of London.

'Not all disabilities are visible’ - International Day of People with Disabilities

Posted on: December 03 2020

Martin profile 4.jpgThe theme for this year’s International Day of People with Disabilities is as unequivocal as it gets, ‘not all disabilities are visible’.

The message is not unique as anyone who is already aware of the Sunflower Lanyard scheme can confirm. But more than that, from a gradual decline in my own circumstances over the last year, I’ve noticed a change in the attitude I experience when I am out and about, and it is this. People are more aware.  Kinder. And understanding.

Nowadays, my motor skills sometimes scrape the bottom of the multiple sclerosis (MS) barrel. Messages from the brain to my legs get embarrassingly confused and play merry hell with my centre of gravity. I have to confess that these days it is less than easy to walk a straight line without my feet taking me on a journey to the left or the right of the pavement, whether I want to go or not.

People still stare, sometimes. After all, it’s only human nature. But these days not in a way that makes me feel like I am an exhibit of P. T. Barnum’s circus.  In restaurants or coffee shops my knees sometimes struggle to support my body weight when I try to rise from the table.   

It’s not the most pleasant of experiences but it happens, of course, it does, but that’s when I endeavour to wrestle control over a situation where I have none at all. Because the MS is mine it’s up to me to reassure the crowd – and I do still have the ability to draw one – that everything is fine because this is not the first time it’s happened to me that day.

To carry an expectation – or even a grudge - against others for not understanding my sometimes muddled speech or incontinent thought process is not who I am. Or at least not anymore. Why make strangers feel uncomfortable?  It’s nobody’s fault I have MS and I will tell whoever needs my reassurance that everything is under control. That everything is ‘cool’.

Being an MS blogger has put me in a position of MS privilege. I am at the coalface of disability activity. I am the embodiment of disability action. I no longer have the need to hide my disability behind my cabbage stalk walking stick. I wear my sunflower lanyard as a badge of honour. 

I am Martin Baum.  I am a proud MSer.

#LiveLifeNotMS

Head on over to the MS-UK Facebook page and like and share our posts for the International Day of People with Disabilities. Help us raise awareness of the hidden symptoms of MS - www.facebook.com/MultipleSclerosisUK/

"You will feel different, feel stronger, privileged and feel extremely proud"

Posted on: November 30 2020

Phil S medal.jpgPhil Shanahan describes the incredible experience of the Virgin Money London Marathon

Running the Virgin London Marathon (VMLM) is not a chore, it’s not a contest and it’s not easy. It is literally walking in the footsteps of giants! For 40 years, men and women have done what you are going to do next October. Over 1 million people in total have completed the distance and have asked the same questions that you will ask yourself before the day. “Can I do it?” and “have I trained enough?” are among some of the questions that you will ask. The answer to the first is Yes!! The answer to the second is “Probably not!”.

Leading up to the big day, you will be very excited and will add “After the London Marathon, I will…” to every sentence. It becomes everything in your world for a few days. You will feel so special when you go to the Expo and get a VMLM running number and goody bag. You will meet the fantastic team from MS-UK there and feel part of the team.

The big day

On marathon day, you will arrive at the start – expect to feel nervous. It’s a mixture of excitement, fear, pride, adrenaline and a desire to get going. The sounds, the smells, the sights, the colour and the music will stay with you for life. You will meet with all the other MS-UK runners. The Anthem plays, the jets scream past and the tension rises. You will be focused, you will think of the hard training runs, the cold, the wet, and you will think about family and the reasons that have brought you to the start line of the greatest event in the world.

Iconic sights

Once you start running, your body will take a little longer to adjust than usual but this is normal. Go with the pace of the people around you and enjoy the first six miles. At six miles you are passing the Cutty Sark. The crowds are massive and the TV cameras are panning out over your head. Smile and show your colours. Tower Bridge is next – it will never look better and it will never be a normal bridge again.

Canary Wharf is visible from a long way away but you are heading there. Again, the crowds are massive, the food smell is coming from every pub and restaurant and you are building in confidence. There is no stopping now. Twenty miles done, and it’s time to dig deep.

Phil S jump.JPGHeading back towards Tower Bridge again and you will see the people across the road still heading out east. Life is good and you are singing along with the numerous bands that play along the route. You pass underneath Waterloo Bridge and the road opens up. You have space for the first time so enjoy it and lift the crowd, it’s a long day waiting to see a hero, so make it worth their while.

The last mile. This is what it’s all about. You are going to make it. All doubts are gone, you will finish. Stay compact, run strong and keep smiling. Think of your fellow runners, help them with little words of encouragement. Just a simple “you’ve got this” can do so much for a struggling comrade.

Cross the finish line proud, get your medal and be ready to never be ordinary again. You are now a marathon runner and you will feel different, feel stronger, privileged and feel extremely proud.

“Pain is food” is my motto. You will not remember the pain a week later but the fantastic memories will live forever. Have fun, stay safe and listen to your body. You are running for yourself, for your family, for all those less fortunate and for MS-UK.  You have come so far. You have created a moment in time that will outlive you. Life is short, smile and enjoy every minute of your marathon.

You’ve got this!!!

If you want to experience the Virgin Money London Marathon then apply to run for MS-UK here.

#TeamPurple virtual Heroes!

Posted on: November 27 2020

Charlotte Donna and Mim2.jpgWe were so disappointed for all of our #TeamPurple runners when it was announced that the Virgin Money London Marathon 2020 was postponed and then ultimately cancelled. However, we were blown away by the level of support from our runners, especially when the news broke that the Virgin Money London Marathon was going virtual for its 40th race.

After opening up our remaining virtual places to past runners and our runners’ friends and family, we had an amazing 100 people taking part on behalf of MS-UK!

On 04 October, they set out all around the UK and even some across the pond in Canada and the USA.

It was great to see how so many of our runners decided to make the event their own. Charlotte, Donna and Mim in Essex, decided to take on the challenge in fancy dress. They decided to run through the decades marking the start of the Virgin Money London Marathon.

They started in the 80s when the London Marathon began, before moving onto Ab Fab for loop three and were feeling magical in their Hogwarts get up as the progressed. They then ran around as various emoji’s before completing their run dressed as NHS staff to honour those who have been working around the clock over the past few months.

Alongside the creativity shown by our runners making their own finishing lines and having lined their routes with the London landmarks, some of #TeamPurple were invited to share their story on the BBC wall and on local radio stations which is truly incredible!

Of course, we cannot talk about the virtual event without sharing the experience of Jodey Hopcroft, who ended up covering a distance of 50 miles instead of the usual 26.2 miles due to a lack of signal for her tracking device. Despite the geological mishap, Jodey has stayed in good cheer and her story went viral after being interviewed by her local newspaper. Her story has since spread to various media outlets including Sky News and BBC, as well as other local and national radio stations and even made international news in India, Sweden and France to name a few. This led to a huge spike in donations to her JustGiving page – well done Jodey!

A huge thank you to all the runners and their friends and family for their continued support during this time, as a result of the virtual Virgin Money London Marathon #TeamPurple raised an additional £30,000!

 

Supporting the local community

Posted on: November 25 2020

Foodbank pic.jpgHi everyone,

Every year MS-UK looks for different ways we, as an organisation, can get involved and give back to our local community in Colchester, Essex.

Community is at the heart of everything we do as a charity. In the past, we have volunteered for other local charities, such as Wellies-On, a care farm that offers the therapeutic use of farming practices and we regularly collect donations for our local foodbank. Although this year the pandemic has prevented us from returning to these charities to lend a helping hand we have still created our usual Christmas collection for Colchester Foodbank.

Colchester Foodbank has been supporting people in the local area since 2008 and has increased the number of people it helps in the last year by 34%. It provides three days’ nutritionally balanced emergency food and support to local people who are referred to them in crisis. It is part of a nationwide network of foodbanks, supported by The Trussell Trust, working to combat poverty and hunger across the UK.

Even more people than we could have imagined have experienced hardship this year as a result of the pandemic and the need for support is greater than ever, so if you are able, please search for you local foodbank or other charities supporting people in need in your area and give something back if you are able to. Click here to search for a foodbank near you.

Best wishes, 

Sarah-Jane Elliott

Communications Manager