This week, 17-21 June 2019, is Loneliness Awareness Week. Introduced by The Marmalade Trust three years ago, the theme aims to remove the stigma around loneliness and combat people feeling this way. In order to do this, we need to encourage people to talk about it more.
Research has found loneliness to be an unpleasant, deeply personal experience and emotionally distressing. Loneliness can be for a longer duration perhaps when a change has occurred, or chronic if it is for more than two years. However, it doesn’t necessarily need to be for an extended period of time, it can be brief or occasional. A 2017 report even found that loneliness was as harmful as smoking 15 cigarettes a day.
Specific research into loneliness and MS has been conducted by the MS Society, which shows that out of 869 respondents, 60% said they felt lonely due to being affected by multiple sclerosis (MS). Unfortunately, this figure is up from an average of 50% of people that are affected by any disability generally. So what can we do to combat this, and how do we strive towards pushing this statistic down?
The MS Society found that 78% of people affected by MS see ‘meeting other people affected by MS’ as the most significant aspect of their local group in reducing feelings of loneliness. Such research suggests that strong local community groups are important to people with MS, so we need to continuously build on this.
Alongside the unique information that The Marmalade Trust produce, they have also assembled an interactive map so everyone can see where community events are happening nationally. This can be a great way to meet new people. To see what events are near you, visit marmaladetrust.org/law/#Interactivemap.
Understandably, not everyone will have events listed in their area. This is where we can help. Our helpline team here at MS-UK are available to talk to you, even if it’s just a chat. We would like to remove the stigma around loneliness, and it’s okay to say ‘I’ve been lonely’. We believe that nobody should face MS alone and our helpline staff are here to support you no matter what the issue is.
In 2018, our helpline supported over a thousand people and you can reach out to us knowing you will receive unbiased and professional support. The MS-UK Helpline is open from 9am-5pm, Monday to Friday. We are available to you on the telephone or online through our live web chat or email – we will support you in a way that’s right for you.
The Marmalade Trust has created a basic guide about what you can do in relation to loneliness, or what you can do for someone who you think is experiencing it. You can find this guide online at marmaladetrust.org/what-we-do/marmalades-3-step-process-to-feeling-less-lonely/.
When we looking at our new strategy, we were told that there was simply not enough support available to the MS community to overcome isolation and loneliness. We are now running a survey to find out more about these issues.
You can share your own thoughts today in our online survey at www.surveymonkey.com/r/MSUKLoneliness.
This week, 13-19 May, is Mental Health Awareness week. People affected by MS can often experience associating effects on their mental health too. Sometimes it can be difficult to understand what somebody means when they talk about mental health issues, and this is why Mental Health Awareness week exists. They aim to make discussions of mental health clearer and a foundation stronger support networks. By supporting Mental Health Awareness week, we can pave the way for greater openness when it comes to mental health, and strive to help those that are further affected by other conditions too.
We can all experience guilt, like any other emotion within our daily lives. Some people experience it occasionally, whilst others may experience it more frequently. Guilt can be a difficult emotion to identify and can often be disguised by feelings of anger or resentment. The feeling can often rear its head when we identify and perceive we have caused ourselves or somebody else a wrongdoing or harm. Guilt can leave us feeling pretty rubbish!
People living with a long-term health condition can experience the grieving process, which is not linked to the death of a loved one. Guilt can be a part of the grieving process where the person is seeking to try and find the answers to their questions of why something is happening to them and the impact that has on others.
People living with MS may experience this feeling for a number of reasons, some of which are discussed below
Most people will experience feelings of guilt at some point in their life. However, if you notice that you are constantly apologising to yourself or others this could be a telling sign that you may be experiencing feelings of guilt. Communication is key to challenging these feelings. Communicating with somebody you trust such as a family member, friend, colleague or health professional can help you to start alleviating these feelings.
If we do not recognise and process feelings of guilt this can potentially affect our mental health and wellbeing. Sometimes people may want to talk with an experienced mental health professional about their feelings of guilt in a safe, supportive and non-judgemental setting. This could be through:
Counselling or Cognitive Behavioural Therapy (CBT)
This can provide space for the person to explore and examine their thoughts and feelings. Counselling can help the person identify new ways of thinking and behaving which can improve the way they feel.
Relationship or family therapy
The whole family may want to access counselling. This may help family members understand when it might be MS that they perceive to be the ‘problem’ or ‘worry’ and when it is something else.
Mindfulness and meditation
Can help the person to be aware of the present moment where they can calmly recognise and accept their thoughts, feelings and bodily sensations without judgement. This can be a very powerful tool in helping to alleviate feelings of guilt.
You may have read this article and relate to some of what was shared. Others may be thinking that it isn’t relevant at all. As individuals we respond differently to feelings of guilt but what is important to remember is that one of the best ways to cope with feelings of guilt is to try and be as compassionate towards yourself as you would be to somebody else.
This extract was taken from issue 113 of New Pathways magazine, the MS magazine for people with MS, by people with MS.
'Before I was diagnosed with multiple sclerosis (MS), I was very keen on sport and was always very active participating in sports teams, such as when I joined Colchester Ladies Hockey Club and later on, a Colchester badminton team. I also started playing golf in my mid-thirties and was a very active gardener as I got older.
'However, pre-diagnosis, I had an unexplained ‘attack’ which left me very fatigued with a tendency to quickly hit a ‘fatigue wall’ during any physical exercise, even just walking to the shop. This meant that my very active lifestyle came to something of an abrupt end, even though my mind still thought of myself as fit and active. Suddenly, I just couldn’t do the things that I used to do. Despite my mind telling my legs to run, jump or whatever, my muscles just weren’t able to comply. The messages from my brain just weren’t getting through. It was a very scary time and I began to get scared of trying to carry on doing any physical activity.
'I remember one time when I was still just able to trot a bit and I was walking across a field to our campervan, and it began to rain. I started to ‘run’ towards the van for shelter and took a big tumble which twisted my ankle, wrenched my back and gave me big bruises and muddy clothes. Luckily, I’d fallen on grass but as I’d not fallen over since I was a toddler according to my Mum, it gave me a big shock! This episode really dented my confidence and my physical activity reduced considerably after that.
'Once I received my MS diagnosis, I was overwhelmed by so many fears, worries and confusion. I found it difficult to take in and understand all the advice and information I was given. I didn’t ask about physical exercise or about many other things related to MS because I didn’t know enough to know what to ask, my mind was in a spin. All I remember was being told that ‘overdoing it’ could bring on a relapse, and to rest and pace myself or I would ‘pay for it’. This made me very worried about doing any physical exercise in case it brought on a relapse.
'After my diagnosis, I now exercise twice a week at MS-UK’s wellness centre Josephs Court on a Therabike and on the Vibeplate. I joined Josephs Court two years ago and have been aiming to strengthen my arm and leg muscles to help compensate for my severe fatigue and to reduce the risk of falls. I’m really pleased with my progress and I’m now able to do a lot more than I was able to do before I hit my ‘fatigue wall’. I’ve also learned how to pace myself better through the excellent coaching at Josephs Court and the MS-UK Mindfulness training.
'I now appreciate doing the exercise as it enables me to garden regularly, as long as I’m strict with my pacing! Now I have four grandchildren under the age of four and another on the way, and I have begun to feel that I would be missing out on enjoying family time together, but my increasing fitness and activity has meant that while I still find it very tiring to play with the three year olds, alongside looking after the one year old twins, I’ve been able to find ways to cope with them all and enjoy them without exhausting myself.
'I also have advice to those who are affected by MS and are nervous about exercising. I would say that I feel that good information is the key to living positively with MS. When I was first diagnosed 13 years ago, I didn’t ask questions. I was in denial for about 10 years before I finally plucked up the courage to go to Josephs Court. By then my fitness and strength had deteriorated massively impacting negatively on my general health and wellbeing, so I wish I had been able to ask the questions I needed to earlier in my diagnosis. I have found in the last two years that mental and physical wellbeing, with keeping yourself as fit and healthy as possible, are so important if you’re living with MS, or a similar chronic condition. When I started exercising at Josephs Court, I hit my fatigue wall almost immediately but with the help and encouragement of my Wellness Coach, Jay, I was able to slowly improve.
'Another benefit that I found with exercising is the social part of it. I loved meeting other clients, something I was very nervous about to start with. But chatting with other clients, comparing notes and encouraging others has been a lovely but unexpected bonus, and has really helped me look much more positively on myself with MS. Also, joining the social group and attending social events such as the regular coffee mornings, has been a very enjoyable revelation for me, and helps me to think so much more positively about MS.
'Finally, I find the exercising therapeutic, I feel really well after an exercise session – I am more relaxed and subsequently sleep better; and by the next morning my back and leg pain and spasticity are very much reduced. It improves my strength and stamina and increases my sense of wellbeing. Now, I can also enjoy time with my family and friends without constantly feeling exhausted. “I don’t feel ‘ill’ anymore!"'
'I was diagnosed with MS in the summer of 2007 and I quickly tried to find out more about it and what I could do. Of the various organisations offering advice, it was MS-UK (or MSRC as it was at the time) that I found most helpful and supportive. The pragmatic and un-blinkered information, the positive attitude of taking control of your own situation helped me through those first difficult few months, and that idea of taking control of your own health is still very much with me.
'Fortunately I then got the chance to join the Board of Trustees at MS-UK and it gave me a chance to use the skills I had developed in my management consulting career for an organisation that really was making a difference to people’s lives.
'Before I was diagnosed I was very physically active, despite a demanding job that took me to many places around the world. The mountains and mountaineering was my real passion, and as well as rock and ice climbing I ran and cycled. Ironically it was a friend seeing me stagger back from a day’s rock climbing that made me go to the doctor and started the process that led to my diagnosis.
'I have primary progressive MS and immediately after diagnosis my physical symptoms were pretty minor. But as my mobility worsened I couldn’t climb anymore, I kept falling over when running because of my foot drop, and tunnel vision when tired made road cycling too dangerous. Climbing was a big part of my life and not being able to do this felt like a huge loss to me.
'So now 12 years after diagnosis with PPMS I do what I can when it comes to exercise and it’s still a big part of my life. I can’t run at all or walk far, so I have a rowing machine for cardiovascular exercise. I used to have a rowing club nearby that offered assisted rowing which was wonderful. I have a home gym where I can do resistance and strength work and have joined The MS Gym.
'I have seen the benefits of exercising personally and am certain it has allowed me to recover some lost ability. For a while my foot drop was pretty bad - all my right shoes had the familiar tell-tale scuff marks around the toe. But amazingly I found that by working on my right foot and leg I managed to nearly get rid of the foot drop – so now it’s only when I’m really tired that I have a problem. This helped convince me that although I might not be able to recover all the function I’ve lost, I may be able recover some function and must do what I can to maximise what I have.
'I also have some advice to people affected by MS who are nervous about exercising. Exercise will not make your MS worse. Even if you feel exhausted or can’t even move immediately after exercising, you will recover. And it is fine to exercise to ‘failure’ and push your limits – just make sure you’re safe, be aware of form, and have time to recover. There are lots of stories from those with MS that have some functional recovery by exercising, including at basic levels of movement. Also brain loss as we age is much faster in those with MS and exercise slows this loss. However, it can be hard, especially with the fatigue and mobility issues. There is lots of help out there to start you on your exercising journey. Neuro physiotherapists can be incredibly helpful and your MS nurse or consultant might be able to refer you. Many gyms offer advice and training programmes, and there are assisted activities all over the UK. MS-UK and the MS Trust have general advice and more details on exercise programs.
'I also found that exercising with MS requires a huge amount of concentration and can be very tiring. It’s not just a case of “use it or lose it” because form is really important. When I exercise I’m also trying to create new neural pathways to overcome functional loss, so learning and practicing the right way to move is vital.
'Finally, I feel that exercising is therapeutic and I know that I have recovered some lost function through exercising. I’m convinced that if I didn’t exercise, I would have lost more function and exercise has helped me alter the trajectory of the condition. But I just enjoy doing it and feel so much better - even if I can’t move a step immediately afterwards!'
I have been living with multiple sclerosis (MS) for thirty-five years. In 2014 I noticed that walking was becoming more difficult and my MS nurse recommended that I contacted Josephs Court, MS-UK’s wellness centre in Colchester, Essex. I attended twice a week to exercise and became a founding member of their Steering Group. Before I was diagnosed with MS, I exercised every weekday walking for 10-15 minutes to the office where I worked in London. At lunchtime I would occasionally go for a 30 minute walk if the weather was kind, and this felt like it was a sufficient form of exercise. However I was unfortunately diagnosed with MS, but nevertheless I continued exercising in the same way for another 13 years until I eventually changed jobs in 1996. By then I commuted to Basildon by car – therefore my exercise regime came to an end.
But now, I visit Josephs Court two mornings a week, for 2-3 hours each time, and use most of the equipment available. I’ve also increased my exercise since the arrival of the latest university students, as one of them has given me some rigorous exercises using the parallel bars.
Now I feel that doing gentle exercise gives me a feeling of “getting one over on my MS” – it isn’t going to stop me from doing something that I enjoy, and there is a social aspect too. We are all suffering with the same disease label yet we don’t talk about it, we just enjoy one another’s company. The social aspect means I now have someone else to talk to, and shows that I needed something to relieve the boredom of not working, as I spent three years applying for jobs with no luck.
Finally, I thoroughly enjoying working with the student physiotherapist Becca, as she has brought new ways of exercising to me. I also find volunteering for MS-UK therapeutic – it is another reason for existing and gives me purpose.
'In 2016, I was diagnosed with progressive multiple sclerosis (MS) and decided to find out more about MS-UK’s wellness centre, Josephs Court, especially when it really began to affect my balance. I visited weekly and have found the welcoming atmosphere really helpful to me, especially with things such as discussing treatments, and getting ideas and tips for coping.
'Before my diagnosis, I played table tennis to county level as an under 17 and took qualifications to become a swimming teacher. In my youth, I even became a lifeguard with the Guildford Lifeguards. Many years later I joined a gym with my middle daughter Naomi, and we used to go several times a week.
'Alongside this, we also used to cycle to the school I was teaching in and where Naomi was also a teaching assistant. It really was downhill all the way to school, but uphill all the way back. Naomi was able to cycle all the way home, but I had to walk and push my bike for some of the way. Then in 2007, I moved to Great Totham so cycling to work was no longer an option, just an 80 mile round trip to school and back.
'After diagnosis however, my exercise regime was affected, and I didn’t think that exercise would work for me as it used to. My balance was going and I could no longer ride my bike as a result. I even tried stabilisers, but I continued falling off. Subsequently, I started going to Josephs Court and at first, I couldn’t really see the point of it. I could still walk even though my balance was shaky. However, I kept going and then soon realised just how much I needed what Josephs Court could offer and help me with.
'Following this, I ordered an adult tricycle, and was amazed when I was able to get on and ride it straight away, albeit not very far to begin with. But now two and a half years later, I’m able to ride 4.5 miles most days around my home village of Roxwell. I sometimes book myself in for a six week course of hydrotherapy. I think the feeling of being able to walk across the pool with no sticks or rollator is amazing.
'Because of what services there are for those diagnosed with MS, I can’t value exercise highly enough. I have always been competitive, so Josephs Court and tricycling gave me this challenge.'
I started supporting MS-UK in 2014 when my running buddy and I decided to participate in a running challenge of three marathons in three weeks, with London being the finale of the trio. Having missed out on the ballot we were given the chance of a place with MS-UK, which was a good fit because I’ve had relapsing-remitting multiple sclerosis since my late 30s. I was immediately hooked and have been fundraising for the last five years now. I’ve raised a total of £16,372.20 so far!
This year will be my fifth marathon, all of which were charity bond places with MS-UK. Each marathon has been special in its own way; two have been with my buddy Debbie Germain, one was with my husband, last year I ran with my daughter and this year I will be by myself. The trio of marathons was an epic challenge though and a very proud moment.
Without a doubt the end of the race is very special, you are treated like a superstar by the charity and they look after you as though you have just won the gold medal.
When it’s come to raising the funds for each race I’ve organised lots of different events. I have done a quiz night a few times, various raffles, I had race entries donated for me to auction, as well as a private run coaching session with Shane Benzie.
I organise a yearly Halloween and Christmas 5k night run around Greenham Common Air Base, a fantastic spectacle of lights moving around the Common in the pitch black with medals, hot soup or mulled wine at the end.
I have a Rock and Roll Bingo evening next month where you have to guess snippets of songs and cross off bingo numbers, which should be fun.
One of my more notorious fundraisers was with my buddy Debbie. We produced a Naked Runners Calendar, with 12 of our male running friends all tastefully photographed by our photographer friend, they all have appropriately placed props of course! The calendar sold for £10 and proved to be very popular.
I’d definitely encourage anyone who’s been thinking about supporting MS-UK to give them a call. They will support you just as much as you support them.
Another instalment as I am taken by the train to the hallowed turf that is Hammersmith Hospital. This began with an early start at 4.45am. I know, a clock should only see this once a day. Teeth were brushed, the shower was jumped in, the beard was conditioned to an inch of its life, as it has gone really dry and coarse of late. It is feeling soft once again, albeit the purple has faded somewhat. I'll probably colour it again, but will definitely do so before the Chemo in May. Mostly so the dust pan gets to look good as it is swept up.
I am now sat on the train thinking about the need to get home in good time later today, to take the prescribed pills and the magic jab juice. I have been doing all this much closer to lunch time anyway, so I have another 6 hours, give or take before it might affect my current time scales.
As far as the side effects go, I do consider myself lucky as I am taking anti sick pills, with no sickness noted. I must say I have only been taking twice a day as opposed to the instructed three times as advised. If I had the slightest inkling of feeling sick, then I would certainly be taking them as instructed. I was told about the joint aches and pains, at the beginning too. Again this gas been kind too, don't get me wrong, if I am out pottering about town, as I was yesterday treating myself to some new jeans and a shirt. (Pandas breed more frequently than I buy new clothes by the way).
Today I am feeling aches in my left hip, my lower back and my left eye again. I assume the hip and back are from the drugs, as I was informed would be the case, by Naghma, the well informed Nurse at Hammersmith, but the left eye is blind anyway, so as long as is isn't too bad, I'll not worry about it. If it was my good right eye, then it would have my full attention and I'd pop in to hospital about it.
Peterborough hospital eye clinic have always been pretty good at squeezing me in at short notice when needed. I try not to bother them unless I am getting genuinely worried about my right eye. Either way, all the aches and pains are dealt with using paracetamol.
Well, that was close. The silence on the train woke me up...phew! God knows where I might have ended up.
Once awake, and back on my stumbley clumsy feet, I took the usual walk to the Victoria line down stairs on the far side of Kings Cross station, then get off at Oxford Circus, to get on the Central line, looking for White City. From there I get on either the No 72, or the 272 bus towards Hammersmith Hospital. All was so very smooth today in my getting here. I will say though, that I really do need to get some paracetamol. My lower back doesn't half ache. Maybe a combination of the walking a fair bit over the last few days, and my being 4 days in to the stem cell generation, and the achy bones are to be expected.
From speaking to the Nursing staff here, I am now in the prime time for the aches to be really biting down. As the day is slowly moving on, yes, I can feel those aches. Do I sound like I am whinging yet?
My bloods have been taken by Nurse Harry and they have been sent off, as I sit here wondering where I can get those paracetamol tablets, on my way home.
Ok, so I fell asleep as the bloods were sent off, and was told they'd be ready after lunch, and with the time at 10.30 now, off I trot to central London for some nice food and to kill some time. I do pass a chemist, but meh! It'll be reet.
I eventually find myself in Selfridges food hall trying to eat ramen broth, but yes my right hand is still rubbish, so I am forced to eat the long stringy noodle goodness with chopsticks using my left hand. Actually I did well, and got away with it. Now back to Hammersmith, by now I am really flagging and my back is aching a lot more than I gave it credit for. It is, every now and then, a quiet groan-worthy amount of ache. I really regret not getting some paracetamol to scoff.
Eventually I get back to Hammersmith, to be told, all my bloods are exactly where they should be, and to come back on Monday for the big stem cell removal. So I say my thank yous to everyone and make my way home, thinking I knew a sly pocket full of paracetamol wouldn't go a miss right now.
I am on the train thinking, if the aches were anything to worry about, I would have bought some. I do see the aching bones as the Body telling me it is busy generating squillions of big fat juicy stem cells for me. You see, it might be super rubbish at running and tying my shoe laces at the moment, but it can spit out stem cells to order when it needs to. Thank you Body, you ain't that bad after all. Thank you X.
Way back in 2016 MS-UK hosted a team from the School of Sport Rehabilitation and Exercise Sciences from the University of Essex here at our headquarters.
The team were running a trial testing the use of an Xbox game specifically designed to support people living with multiple sclerosis (MS). Since then, they have been working hard to continue exploring possibilities in this area, and yesterday I had the privilege of being invited to the MS Olympix at the University of Essex.
The day included taking part in three different games that could be played standing up or sitting down.
Sarah, who was first diagnosed with relapsing-remitting MS in 2007, attended the event...
‘After hearing about the day at a Josephs Court social coffee morning, it sounded really interesting. It is really good fun and some of the games – especially the ones that involve lifting my feet up – really helps my balance and coordination. It’s like playing the Wii at home but more fun!’
Sarah added, ‘the system comes from a background of rehabilitation, so I’d love to see it developed so people like me, living with MS, can use it at home’.
A big thank you to the team for inviting me to join in and we will keep everyone posted on future studies in exergaming!
Laura May, Communications Manager
Those of you who have been following Scott’s story will know that he is letting MS-UK follow his HSCT (Hematopoietic stem cell transplantation) journey to treat his multiple sclerosis (MS). Scott aims to raise awareness of MS and this treatment option, and will be vlogging throughout his treatment giving the MS community a unique insight into what HSCT involves.
Scott was diagnosed with MS 13 years ago and until recently he had lived relatively unaffected by his condition, pursuing his career as an aircraft engineer. When his condition became more active and having tried some of the common MS drugs options, which came with awful side effects, he sought a different approach.
It was his wife Georgia who found and researched HSCT treatment and having considered his options Scott decided that the treatment is the right choice for him.
HSCT is an intense chemotherapy treatment for MS. It aims to wipe out the body’s current faulty immune system and then grow a new one using the body’s own stem cells, which are found in the blood. Although this method cannot cure MS or repair the damage it has already caused, it has been found to halt progression of the condition in a number of people. However, it is also important to note that it does not work for everyone and there is no conclusive evidence to suggest how long it may halt progression for.
Scott knows that the treatment isn’t without risks, but says: “This was a split second decision for me. I am 45 and my boys have seen me work hard to provide for them. When I get home I am tired, I can be irritable.
“It is true that there is a 1 in 50 mortality rate, but if you flip that on its head it is also like being presented with a 98% survival rate. The alternative is a clear and distinct 100% rate of still having MS, and it devouring me. There is no light at the end of that endless tunnel, where you don't know where, or when you get off. All you know is you still have MS and it will not let you go.”
Having met with the team in charge of his upcoming treatment, Scott was informed that it is highly likely that he will lose his hair, including his impressive beard which he is very well known for. So to celebrate his bearded efforts, his upcoming treatment and show his support for MS-UK, he had dyed his beard MS-UK purple!
Want more information about HSCT?
Our helpline is here to listen and offer you all the information and support you need to make your own decisions. Call us free on 0800 783 0518, email firstname.lastname@example.org, or live web chat with us today.