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Gavin King ran 26.26km for MS-UK with a heavy yellow twist!

Posted on: April 30 2020

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I woke up on Sunday 26 April, London Marathon day, or at least it should have been! It should have been the 40th anniversary of the event. I thought about those who should have been taking part, the months of training, the moments of pain and the little victories along the way. I picked up my phone with my cup of tea and started catching up on the social media updates when I came across an MS-UK post on Facebook “The 2.6 challenge, Save the UK's charities, 1 Day to go”,  and it was posted yesterday meaning launch day was today!

I dropped a quick comment to ask if it was too late to sign up and on hearing I wasn’t too late, I quickly started thinking about what I could do. I glanced around and saw the face of the famous Pokémon Pikachu painted on the side of my beer barrel from a previous event, he looked at me smugly from across the room and my challenge started to come together.

I decided that I was going to dust him off and carry him while running 26.26km, in keeping with the 2.6 challenge. I set up my JustGiving page and told the world about my challenge for MS-UK.

It got to 5pm and as I was walking to my start line I check my JustGiving page to see I had already raised over £200, which was the perfect little boost I needed before setting off!

At 5km in my elbows were already screaming at me, I had some water and a bit of flapjack and set off up the river path. I negotiate the barrel into different positions to ease the pain on the elbows. If I held it in one hand over my back it bounced on my shoulder blades, in front of me it banged on my hips, two hands behind my head and my elbows filled with pain, there just isn't a comfortable way to carry that thing! I focused on all the reasons I was doing this, I'm running this for my parents, I'm running it for those that can't, I'm running it to raise vital funds for a charity that is due to lose out. This isn't about me or my challenge, it's about them.IMG_20200426_185010.jpg

I reached the half way point and pulled out my phone to find messages of support, I snapped a quick photo, picked up my barrel and continued my run feeling a little more refreshed from those encouraging words. I saw a family ahead and moved well over to let them pass, but really I was grateful for a short rest. As they passed I heard, “You do realise they make smaller water bottles mate?” It made me smile and once they'd passed I carried on, getting ever closer to the end of my journey.

Three hours after I had set off, the sun had started to set in the sky and I was just 3km from the finish. I took one quick photo with the sunset and then I picking up my pace because I knew I was almost there. Literally on the home stretch now and running towards my house, barrel in front of me, I was regularly checking my watch for distance. I watched the numbers tick over… 25.90, 26.00, 26.10, 26.2... 26.26km, I was there! It was done! My hands felt bruised, my legs tired and I felt like what I had just achieved was harder than the marathon itself. I checked JustGiving again to find the total was now over £300! I was astonished at the generosity from friends, family and even social media followers.

It was then time for a bath and a cup of tea! I feel happy to know I've helped my charity in their time of need.

If you would like to make a donation to Gavin’s fundraising page visit his JustGiving page here.

HSCT one year on

Posted on: April 30 2020

MSer and Feature Writer Ian Cook catches up with two HSCT patients one year on from the launch of new MS charity AIMS

Becky White with Ian Cook.JPGJust over one year ago, I attended a black tie fundraising ball at Villa Park, Birmingham, launching a new charity promoting haematopoietic stem cell therapy (HSCT) for MS.

The new charity, Auto Immune & Multiple Sclerosis (AIMS), was set up to help people with auto-immune illnesses, particularly MS, to access HSCT treatment. HSCT is where an MS patient’s immune system is replaced or ‘re-booted’, and as a result the myelin coating of nerves in the brain and spinal cord no longer suffer the auto-immune attacks that characterise MS.

HSCT uses high-dose chemotherapy which wipes out the body’s existing immune system. The immune system is then rebuilt using stem cells which have been ‘harvested’ from the patient’s blood before chemotherapy and are then re-introduced afterwards. The newly rebooted immune system suffers no further auto-immune attacks, preventing further damage.

At the AIMS launch I met a number of MS patients who had received HSCT. So how are they doing one year on? One of the people I met was Damien Scott, who was diagnosed with relapsing remitting MS in 2004. Damien travelled to Moscow in 2017 for treatment at the A.A. Maximov Haematology and Cell Therapy Department of the National Pirogov Medical Surgical Centre. At the Villa Park event Damien gave me some background information about his trip to Moscow. 

Continue reading the rest of Ian's report in the latest issue of New Pathways magazine which is free to download! Download New Pathways

Reflexology with Andrea Tavner

Posted on: April 29 2020

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We are keeping occupied here with lots of home learning, which involves a lot of Florence my daughter's time spent teaching me how to use technology, apparently paper and pencils are old school!

She has kindly said I can give her massage and reflexology treatments, however she is incredibly tickly, so there is lots of giggling!  I’m very much looking forward to getting back in the treatment room and catching up with everyone at Josephs Court and hearing all your news.

Stay safe and smiling,

Andrea

 

Hand refexology

My helpful assistant has helped me put together some simple guidelines for hand reflexology if you would like to try these, or if you have a helpful assistant willing to give it a go.

Five to ten minutes daily may help to relax and bring a little relief from aches and pains.

Please do get in touch if there are any other areas you need help with.

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Walk your index finger in a caterpillar motion following the arrowed lines.

This will work on you knees and elbows.

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Walk your thumb in a caterpillar motion, along the arrowed lines. Working up and down on each hand. This will work on your spinal area and can help stimulate nerve connections to all areas of the body.

Birthday Socks and fundraising!  andrea 4.jpg

Following a birthday, we are now a family of Monkey Sock owners! Designed by James and Lianne Carvell from Mr Monkey Sox, supporters of MS charities across the UK.

Florence needed a pair too, and Steve has been wearing his whilst training for The Prudential 100 Bike ride, he will be doing later this year in support of MSUK.

Get your pair of Monkey Sox here

“During this lock down, everything has felt heightened”

Posted on: April 29 2020

How to look after your mental health in lock down? Try keeping a routine, says author and MSer Clare Ann Smith

Wattpad image .jpgThis is the first year I've felt well enough to want to do social things because I’m more physically able, and we can't leave our homes unless for emergency food and a walk. It's ironic for my situation. And, for a lot of others I imagine, who are now feeling the benefits of their treatment for multiple sclerosis (MS).

I consider myself luckier than most. I’ve always been ok in my own company. And being in a role where I was working in the office and working from home, I got used to quiet periods within my day.

During this lock down, and with many people furloughed, I think everything has felt heightened, because we’ve been told we can’t do things that we usually do. We’ve temporarily lost some freedoms, and when I think about it, I think that our time in lock down becomes about building a life not focused on our lack of freedoms. I’ve heard, in many true crime documentaries and interviews, inmates in prison for long periods of time say they survived by having a routine.

They have certain times which dictate recreational time, eating, and bedtimes, but creating a routine for themselves was what made their time inside manageable, bearable and kept them going.

I have applied this principle in my own life since the lock down, and an average daily routine for me looks roughly like this, with me keeping my waking, eating, and bedtime the same

6.45am Wake up, have a coffee and three raisin biscuits in bed, take medications and watch two episodes of a boxset. Pure bliss!

8.30am Yoga for 40 minutes (You can follow videos on YouTube)

9.10am Meditation for 20 minutes (I have apps on my phone, but you can also access meditations online like this one on MS-UK’s YouTube channel - click here

9.30-10am Shower, get washed and dressed for the day.

I find it’s best to do any noisy activities in the morning. I plan my day as such, so my morning could then look like this

10am-10.30am Speech therapy warm-ups. I have sheets of exercises but if you have Alexa, you can get vocal warm-ups on it! My brother Paul shared this gem of info with me, and I’ve done it every day. It really helps, and could help your voice, especially if you live alone, or you’re by yourself a lot because you might not actually be speaking as much. But you could just as easily put on the radio and sing to your favourites, or put on a CD of your favourite band or singer and sing-along to them.

10.30am Make tea! It’s either fruit teas bought in a box, normal tea with a bit of honey, or I have fun using fresh ingredients and making my own. The tea pot pictured is the Chelsea Glass Tea pot from the company Whittard, and holds six cups. I use real fruit, raspberries, and blueberries, segments of oranges, pears, apple, as well as their separate peels or adding a wedge of lemon. Mint and orange tea is quite nice. Thyme leaves are good to put with lemon wedges and berries, they balance out the taste. Thyme leaf tea has antibacterial properties and can be used to gargle with for sore throats. Enjoy a cup or two.

11.15am FaceTime or call a family member or friend. I have a large family, so I’m not short in people to chat to, and I FaceTime my friends. 

12.00 noon Lunch, usually a salad or soup or I’ll cook something now, but have a lighter dinner later, depending on how hungry I am really.

1pm Catch up on emails.

1.30pm-6pm Time doing creative things. I’ve just finished editing my book, written over the last three years, which is free to read on wattpad, called Sunshine and Hand Grenades. It’s about my MS journey, so I’m getting word out about that on my social media. My family have been sharing their favourite quotes on their social media, so will hopefully get a buzz about that going.

I also spend this time listening to music quietly, and making concept boards and mood boards for interior ideas that I have. I do this on A3 paper, and keep whatever I create and put in neat A3 folders, so they stay nice.

I have recently started, and therefore spend an hour or two on, an Interior Design Business course, which is teaching me more, and complements my Level 4 Interior Design Diploma which I completed in April 2019.

18.00pm Watch the news

19.00pm Make and eat dinner, and watch another episode of a boxset

21.00pm Get washed and ready for bed, take medications, and read

Lock down blog for MS-UK pic 5 inspiration taken mainly from my bookshelf for yoga, food, and my designing.jpg22.00pm-23.00pm I usually fall asleep

I did online shopping over the Easter Bank holiday weekend and bought every one’s birthday presents, which go right up into the month of September! Delivery has just arrived as and when.

I’ve been for walks, too, because I live in the countryside, and I do this twice a week, usually in the afternoon or just before dinner. I make it interesting by challenging myself to at take at least five photos with my phone of something on my walk which has caught my eye. 

I’ve made an ‘inspiration wall’ by cutting out things in magazines; using the print-screen button. I’ve found prints and art work online, using the pictures from my walks and then printing it all off and just taping up pictures that I really love, with simple masking tape, so as not to damage the paintwork. I make the most of my surroundings by lighting candles in the evening, and I’ve brought out different throws and blankets.

My Dad potted beautiful flowers for the garden patio area for me, as well as some vegetables in large tubs in early March just before the lock down was announced, and I can now see that they’re growing! We’ve been quite lucky weather-wise.

I hope, as we near the end of lock down, when it’s officially ended, that we all remember the kindness of others, and continue to pay it forward somehow. I’d like to thank my parents and family for helping me during this period.

How to boost your mood

Posted on: April 24 2020

Jas.jpgMS-UK Counsellor Jas Sembhi explains why people with multiple sclerosis can have low mood and anxiety

There are many reasons people affected by multiple sclerosis (MS) may experience anxiety or low mood. There may be feelings of low mood when you are first diagnosed, feelings of anxiety should a relapse occur, feelings of anxiety at what the future may hold – in particular the uncertainty of not knowing what the future might be. There is also the anxiety of not being able to do everyday things that you could previously do.

Due to the present situation, some clients have spoken about feelings of anxiety due to COVID-19 and how this may impact them due to low immunity. Having to self-isolate and not being able to do the things which previously made them feel good is also leading to low mood.
One technique I practise to help with anxiety is ‘grounding’. This technique helps us to bring our attention to the present moment by focusing on our senses and naming to ourselves

•    Five things we can see
•    Four things we can feel
•    Three things we can hear 
•    Two things we can smell 
•    One thing we can taste

Grounding can help take focus away from the anxiety felt about an uncertain future.

Sometimes, for people affected by MS, you may be experiencing low mood due to how you are feeling at the present moment and the symptoms you may be experiencing. Doing things that make you feel happy and that are good for you can help. It might be useful to begin by making a list of what makes you happy. These could be really simple things like listening to music that lifts your mood, looking at old photos that make you smile, wearing an outfit that makes you feel good, and talking to people who are positive. 

In this present situation, although you may not be able to physically go out and meet people, you could make a note of people to call over the telephone or video call – sometimes just the thought that you will be speaking to someone who makes you feel good can start to help lift your mood. 

It may be that you find it difficult to do some of the things that previously made you happy due to MS symptoms. It might help to try new things and see what works for you – for example, joining a peer support group. This can be helpful as it gives the opportunity to talk with people who have shared similar experiences – sometimes it can seem lonely feeling that others may not understand what you’re going through. Talking to someone who does understand may help you feel you are not alone.

Everyone will experience happiness differently – so it’s important to find what works for you.

“Happiness is the meaning and the purpose of life, the whole aim and end of human existence.” 
Aristotle

"There are only two days in the year that nothing can be done. One is called Yesterday and the other is called tomorrow. Today is the right day to love, believe, do and mostly live. "
Dalai Lama
 

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My faith and my MS

Posted on: April 23 2020

resized.jpgTalat Ahmed explains how Islam helped her cope with her diagnosis, and the struggle to fast during the holy month of Ramadan

My faith was really important to me after my diagnosis. Muslims are taught that life on earth is temporary, that this life is a test, and you must live it being as good a person as possible. It is human to be kind and respectful to all living things, and to all faiths. This is not to say that I don’t feel frustrated that I can’t be the person I was when I was fit and healthy at 19 years old. However, especially after the age of 40, I have accepted my MS and make the necessary adjustments to my life far more than I used to.

The same cannot be said about some of my family members and friends, who do not see me live with MS, but to me that’s OK. My faith gives me hope that things will get better for people diagnosed with MS and in the meantime, I am grateful for what I have and will keep going as much as I am able to. I desperately don’t want to be dependent on others, but sometimes you have to, and I am thankful that they let me.

The holy month

Ramadan is the Islamic holy month where Muslims fast for a period of 29 or 30 days, depending on the sighting of the new moon. We consume no food or drink between dawn and sunset. This year it runs from 23rd April to 23rd May.

The purpose of doing this is because as Muslims, we believe that it is the time to feel closer to God. It is a deeply spiritual time when we as a community become more focused on prayer and instilling a discipline to carry on the day without any food or even a drop of water. Instead, we focus on being thankful for what we do have, give to charity, reflect and correct our behaviours as human beings and not waste our time here on earth. We are not eating food and drink and we do this because we want to please Him.

In winter months, fasting during Ramadan was fine – not too hot. I got plenty of sleep because there were less daylight hours, and it felt great to be taking part with all the family. It felt really fulfilling. However, every year after Ramadan I felt my condition slightly worsen. But I persevered.

It was important to observe fast, because it was what I was brought up to believe.  The atmosphere in the household changes. Family feels more unified. We know we are going to have extra special food to look forward to – not the healthiest I hasten to add. But especially when you’re a kid, although not obligatory to fast until puberty, there’s a change of routine to follow that felt special and came with a sense of togetherness, which is difficult to capture in words.

Summertime sadness

islam.jpgThe Islamic calendar follows the lunar calendar which is shorter by roughly 10 days a year. Therefore, when Ramadan fell in the summer months, it was torture! I couldn’t wait for my respite (women who are on their period do not keep fast, but they have to make it up within the year). However, to my horror, my period never came, and annoyingly it was like that for five years!

People who are ill or have chronic health conditions, or mothers who are pregnant or breastfeeding are not required to fast during Ramadan. Therefore, last year was the first year I did not keep fast and I really felt like I was missing out. The weather was unbearable and so, with guilt, I felt relieved that I was not taking part. To make up for not fasting, I gave money to charity, so a poor person would keep fast on my behalf, which is equivalent to paying a person £5 per day. But, just because I do not keep fast this does not mean I cannot take part in all the other activities, so that has not changed much, and I do as much as I can.

The hardest part

The biggest challenge of Ramadan has to be lack of sleep. I need sleep. I love sleep. There’s a saying in Islam – ‘Prayer is better than sleep.’ I couldn’t quite follow that mantra. Tea and coffee withdrawal is hard, and I would normally give up tea and coffee and definitely eat a lot less chocolate during Ramadan. As soon as it ended, though, alas so did those good habits.

My advice

There are so many forums now and so much information out there on how to receive help. People live much better lifestyles nowadays by changing their diet and going onto disease-modifying treatments much sooner than when I was first diagnosed. Finally, we are so lucky to have the NHS in the UK and there is now a far greater investment into MS globally, which gives me hope that someday there will be a cure.

Changing negative self-talk

Posted on: April 23 2020

Louise Willis (Headshot)_0.jpgFor MS Awareness week, MS-UK Counsellor Louise Willis explains that changing your internal monologue can make the world of difference

Have you ever caught yourself thinking or even saying, ‘The kids never shut up’, ‘No one cares’, ‘I am a total failure’, ‘I can’t do anything right’? If so, you are not alone. All of us have negative thoughts from time to time, they are a normal part of being human.

It can be easy to think or say ‘hey, cheer up!’ or ‘things will get better’, but are these words of encouragement really what someone who is struggling with negative thoughts needs to hear?

During our relatively short evolution, our brains are wired to focus on things that can go wrong, things that can cause us harm or pain. And this makes a great deal of sense and is what we call a negativity bias.

In our early days as a species, this wiring was crucial to survival. Imagine our ancestors sitting around a camp fire and hearing a predator approaching, whilst not being alert to the danger. This is not a good approach for our survival!

Stuck in the past

Due to our rapid evolution, our environment and the way that we carry out our daily lives has changed incredibly, but the primitive wiring of that particular part of our brain is somewhat stuck in the past. We can easily become stuck in a spiral of negative thoughts and beliefs.

The biology

There is an area of the brain located in the brain stem called the reticular activating system (RAS) which acts as a kind of funnel. It takes information from the outside world and focuses our attention. An example would be – you get a new blue car and all you see are new blue cars. This is the same process in what we choose to focus on in terms of experience, thought and emotion.

Practise change

istockcropped.jpgThe good news is that, with practice we can change the RAS to filter in the good stuff. By seeing what we put into our brains as ‘food’, we essentially have the choice whether to nourish our brain and ultimately our mental health, or carry on in those same negative patterns. Over time the practice of focusing actually changes the neural pathways in the brain. This is called neuroplasticity.

Sometimes we can fall into negative thinking patterns that become automatic or knee-jerk reactions. Dropping something can instantly result in thinking ‘I’m so clumsy’ or missing a deadline can elicit a harsh talking to from ourselves.

Talk kindly to yourself

Trying to imagine how we would speak to a loved one can be helpful as we can often speak to others with more kindness than we do to ourselves. Making an effort to talk to ourselves with kindness and compassion can show us on a very deep level that we are worthy of respect, it is also a good model for those around us. We can think of the process as a computer program that would benefit from being re-written.

Negative thoughts not only affect our feelings but also our somatic or ‘felt’ experience. This is our bodily sensation of a thought or feeling. Identifying this ‘felt’ experience of particular negative thoughts can be incredibly helpful. Noting where in the body the thought is experienced, giving it a colour, a form and description can be very beneficial.

Try these!

I have given some ideas for ways of challenging and changing negative thoughts. Choose what works for you and remember to practise regularly!

  • Keep a gratitude journal. Write three things you feel grateful for each day, they don’t have to be huge things. The sun on your skin or a child’s smile are great to reflect on.
  • Keep an eye out for thoughts like ‘always’, ‘should’, ‘never’ and ‘can’t’ – change to ‘sometimes’, ‘could’ and ‘can but choose not to’ or even ‘I will’ – own it! You will feel more in control.
  • Try to see if there is any evidence for the negative thought. Is it true that ‘I always…?’
  • Change negative self-talk, but not to the polar opposite as it can give unrealistic and unachievable goals. ‘I am good enough’ is much better than ‘I am perfect’.
  • Cultivate a feeling of compassion, not just to others but most importantly to yourself.
  • Create a positive daily mantra and repeat as often as possible, this only needs to be a few words.

If you found this blog helpful, please consider donating to our crowdfunding appeal to help us offer video counselling for people with MS. Donte here

7 Accessible challenge ideas for the 2.6 Challenge

Posted on: April 22 2020

Fundraising Team 2019.jpg

The 2.6 Challenge is set to take place this Sunday (26 April 2020). It is open to everyone and the more people that get involved the better. The great thing about this fun fundraising challenge is that it is accessible to all! Here, our fundraising team have come up with seven great ideas to inspire you to take part.

  1. Walk, wheel, jog, skip, hop, lift or run 2.6 metres, miles, kg or minutes

  2. Complete 26 laps of your garden or living room, just like war veteran Tom Moore

  3. Flip a pancake 26 times

  4. Learn how to say ‘Hello’ in 26 languages or maybe even a sponsored silence

  5. Make a presentation on a topic you enjoy and talk for 26 minutes

  6. Bake 26 cupcakes – maybe deliver them to your family/neighbours, making sure to follow social distancing guidelines

  7. Have a 26-hour ‘readathon’ – how many books can you read during this time?

Please get involved and do something to support MS-UK in a really fun, simple and positive way.

Once you have chosen your challenge all you have to do is follow these simple steps

  1. Dream up your challenge based around the numbers 26 or 2.6

  2. Set up your fundraising challenge page here

  3. Complete your challenge this Sunday

  4. Share your pictures and videos with your family and friends on your social media channels, encourage them to donate to your page and don’t forget to tag us!

And that’s it, your efforts have made a big difference out our charity and the people living with multiple sclerosis that we support! With many fundraising events being cancelled or postponed, we have seen our main sources of income dry-up almost overnight. Our services are needed even more now than before, ensuring people living with multiple sclerosis are still able to access the support they need now more than ever. Please help us to be there for the MS community today, tomorrow and for many years to come so we can ensure that no one has to face MS alone.

Thank you!

How to improve your mental health with exercise

Posted on: April 21 2020

Alan_0.JPGAs part of MS Awareness Week, MS-UK Wellness Coach Alan Pearson discusses the importance of exercise for mental health and how to get started.

With MS awareness week upon us it is right that we highlight the profound physical and mental effect a condition such as multiple sclerosis (MS) can have on individuals, partners, carers and family members, especially at this time of lockdown. So it is important that we talk about exercise and mental health.

What is it?

So what is our mental health? Well, it's our state of mind that includes our emotional, psychological and social wellbeing. It affects how we feel, think and function. Whether you want to get up today or not, join in that social group, take part in an exercise programme, do your daily activities like washing, tidying, gardening, and personal care. Of course, this is all unique to the individual and we are always on a scale of mental health each day as events, situations and circumstances unfold.

We may not feel that we are physically able to due to fatigue, stability, balance and coordination issues, weakness in our limbs or trunk, sensory issues or a combination of these - it all has an effect on our confidence and state of mind.

Holistic approach

Physical activity is an important and crucial part of the journey with MS, along with dietary and lifestyle habits, as well as sleep. Exercise helps improve and maintain our cardiovascular function, strengthens muscles, keeps ranges of motion in our joints, improves bone density, increases energy, and slows cognitive decline. All this has an effect on improving mood, reducing stress, lifting our self-esteem and reducing anxiety and depression.

It is also important that we keep moving and stay vascularly well to reduce any chance of getting secondary medical conditions associated with a more sedentary lifestyle, whether you have a long term condition or not.

Get started

This is all well and good to read, but we are not all ‘get up and goers’ so, where do we start? First of all is having an idea of what you would like to do, or setting a task or challenge. You need a purpose to do something! Maybe at the beginning of the week, sit down and work out a schedule of what you are going to do that week. It will help as we all tend to work to appointments. So set an appointment with yourself to do some activity or exercise. It works, trust me!

Some people may need additional support to facilitate an action, or it might be that you are not in the right mental space yet. MS-UK is always here for you with our free helpline on 0800 783 0518 and you can access our counselling service here.

Check out our online exercise classes on our YouTube channel here.

Finally, enjoy whatever you do and be around positive people. Exercise is a powerful medicine and can bring many benefits which will improve your quality of life and give you social and physical wellbeing. Stay safe stay well and I will see you at my next MS-UK online exercise class.

If you find this blog helpful please consider clicking here to donate to our crowdfunding campaign

“Acknowledging our vulnerabilities is an important part of taking stock”

Posted on: April 20 2020

thinking.jpgFor MS Awareness Week, MS-UK counsellor Leila Hancox discusses learning to accept the limitations and possibilities of MS

On receiving a diagnosis of multiple sclerosis (MS), we may be tempted to try and carry on life as normal if our symptoms allow us to do so. To try and forget that we are living with a life-limiting condition and imagine that it has no bearing on our lives that need worry us. 

Maybe work has always made us feel good about ourselves and we’ve spent years investing our time, energy and resources in becoming experts in our fields, so to take our eye off the ball in this regard would be unthinkable.

Or we dedicate our lives to various sporting pursuits such as mountain biking or running and nothing will stop us from pushing ourselves even further towards our next target, whether hill or dale, trail or treadmill. Or we pride ourselves on being the friend or family member upon whom everyone else relies, the one who gives support wherever it is needed but asks for nothing in return, because we are the strong ones who shoulder whatever gets thrown at us. That’s what we’ve always done and that’s who we are.   

Wake-up call

Then one day we receive a wake-up call. A relapse or a new symptom that turns our whole world upside down as we knew it before. Fear and confusion take over that we may never again be able to do the things that made our lives worthwhile. For then who will we be and how will we cope? 

If we are feeling overwhelmed then we may do well at this point to prioritise our safety and security rather than immediately try to come up with solutions. Listening to our bodies is obviously a vital part of this process. What may also help with our physical symptoms and with our general sense of wellbeing is if we are able to pay attention to what is going on for us in terms of our thoughts and feelings, rather than getting caught up in every-day distractions. This can be difficult if we are not used to reflecting in such a way or we believe that we should be able to cope by ourselves, or that it is a weak or indulgent way of doing things. Yet if we fail to use our full range of resources then we stunt our ability to understand the implications of our new situation for our lives going forwards, and to adapt in ways that are helpful, both for us and those people closest to us.

Although we can help ourselves take stock by reading books, listening to music or whatever it is that helps us tune into our personal resources, we may benefit further by reaching out to other people or organisations, whether that be for information, practical or emotional support. 

Ask for help

It can help to tell someone, for example a counsellor, who listens carefully and understands when we tell them what it is like to live with a particularly difficult symptom. Perhaps we struggle to communicate with those closest to us in our lives because we don’t want to burden them. We may give up trying to explain to colleagues why we need help with a particular task because they just don’t get it. The act of opening up to another person in this way can help us to feel less alone and isolated and therefore better equipped to find a way forward. It can also help us deal with uncertainty, especially if we can remember our strengths and together come up with ways of coping when things get difficult. 

Being vulnerable

Acknowledging our vulnerabilities is an important part of taking stock. Perhaps there were things about the way we lived our lives in the past that didn’t work particularly well and don’t stand up to scrutiny now. Being viewed as the strong or capable one, for example, may have prevented people from getting to know who we really are whether that be friends, relations or a romantic partner.

A wake-up call

MS may be the wake-up call that we need for re-evaluating our lives and reconsidering what is truly important to us in order to find long-term fulfilment and hope for the future. That’s not to say that things will be easy and there won’t be obstacles along the way, whether that is to do with MS or more generally whatever life throws at us. But if we spend some time reflecting on what we truly need to help us cope with the challenges ahead, and what we think truly matters, then we are in a good position not only to survive but also to thrive in ways that previously we might never have thought possible.

MS-UK has launched a crowdfunding project to raise money for video counselling to improve the mental health of people living with MS. If this blog has helped you, make a donation to our crowdfunding page, so we can help to improve the mental health of even more people living with MS.

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