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MS and the mainstream media - World MS Day 2021

Posted on: May 26 2021

This World MS Day (WMSD), multiple sclerosis (MS) blogger, Martin Baum shares his thoughts on raising awareness of MS in mainstream media outlets.  Martin profile 4.jpg

Just a couple of weeks ago was MS Awareness Week, an annual opportunity to help people better understand life with MS. An occasion for others to become inspired to do whatever it takes to change the world for people like me living with MS. The goal of this social media campaign was - and is - to raise awareness about MS and today (5th May) I searched the internet to see for myself what impact MSAW had made in the national press.

On Google there was an abundance of websites with MSAW headlines to attract clicks to links for MS awareness content with specific lead-ins such as:

March is Multiple Sclerosis Awareness Month, so let's help those suffering from it...  The aim of the awareness week, which ends on Sunday, is to give people affected by MS...  Every March is Multiple Sclerosis Awareness month, a time for sufferers, family...

Regrettably, not one of these teasers failed to hook any national newspaper or internet coverage outside of their own MS bubble. The same applied last year for World MS Day which makes me wonder if this year will be any different in raising the media profile for MS and MSers alike.

Of course, it’s easy to shrug, do nothing and continue to be a victim of media indifference towards an illness that has been with me for almost 40 years. This was why I recently felt compelled to write an open letter to the producers of Coronation Street after they inaccurately suggested Charles Bonnet Syndrome (CBS) – a condition that causes hallucinations – was something people living with MS commonly develop.

For a syndrome too obscure and extremely rare for the MS Society, the MS Trust, OMS (Overcoming MS), and MS-UK search engines to recognize, CBS has its own support group, Esme’s Umbrella, as it is a standalone condition. Yet the producers who believe, and I quote, that “MS is still a taboo subject”, have remained unapologetic for the distress caused for portraying its MSer character Johnny Connor as losing his mind.

News of my correspondence made its way into the pages of The Times, Telegraph, and even The Daily Star here in the UK. It was calculated that the articles secured a combined circulation of more than 500,000 readers. By my calculation, this is half a million more than is and was seen in the media for either World MS Day 2020 or MS Awareness Week 2021.

In the run up to WMSD, given that the Coronation Street MS storyline is still ongoing, my wish is for World MS Day is for television companies to never again misuse MS for a cheap storyline as they have in 2021, just as PT Barnum did with his freak show back in 1919.

#LiveLifeNotMS #worldmsday

Lucy and Kate's Walking Challenge

Posted on: May 25 2021

Our Fundraisers of the Month, Lucy and Kate share their story about what they're doing to support MS-UK and why lucy and kate.jpg

Remember those really warm days just over a month ago? Yes, REALLY it was very warm - it was actually so sunny and warm that on one of those beautiful days I got a little sunburn - in March! The reason for this is I was out walking for a good four and a half hours, here is why:

My sister Kate and I had decided to walk the length of Suffolk, along St Edmund Way, aiming for people to sponsor us to raise money in support of MS-UK, and (luckily) we started our first leg of the walk on the warmest day of the year so far. Our mum had MS and, although she didn't really need the support from MS-UK that much, Mum felt they were always there if she needed them. I remember her saying that she felt ‘lucky’ as she was diagnosed late in life, “I’m getting old anyway!” she would say, but she also felt MS-UK is a very valuable charity to others with MS. 

Sadly, we lost Mum to cancer four years ago. After Mum died, I walked the Essex Way, and managed to raise money for the new Cancer Centre at Colchester Hospital. I’d spoken about it with Mum as she felt she wanted to support the new centre in some way, which just goes to show that she was thinking about other people, as she so often did - she knew there was no way that the centre would be built in time for her to benefit from it. She was happy that I had a plan. Just after her birthday and just before the 4th anniversary of losing Mum, my sister Kate and I thought it was about time we did something else in her memory.

We decided on the 80 mile route running the length of Suffolk, winding its way through some beautiful, quintessentially English, and typically Suffolk villages along the way. Our first leg was from Manningtree train station on the Essex/Suffolk border to Stoke by Nayland, approximately 11 miles, so a good chunk of it to start.

As soon as we stepped onto the track just beside Manningtree station we heard a chiff-chaff in the trees beside us, the first I’ve heard this year, reminding us that Spring has arrived. At the end of the lane, just before we turned to walk through the red brick tunnel holding the train tracks above us, we saw the first of the signs for St Edmund Way, letting us know that we were on the right route. We continued to look for these markers along the route in reassurance, despite me carrying a paper copy of the Ordnance Survey Map in my backpack (and having the app on my phone)!  

Still in Essex, but only just - along on the banks of the River Stour we spotted a pair of goldfinches, bouncing along the blackthorn that was lining the path. The flash of yellow and red brightened our walk and made me think of the huge tub of bird feed, bigger than your average kitchen bin, that Mum always had filled to the brim, ensuring that she helped the birds through winter. lucy walk manningtree.jpg

Mum loved her wildflowers too, sometimes not necessarily knowing their more common names, usually referring to them with their old country folk names, I was pleased to spot a few stitchwort flowers just about opening, of course Mum called these ‘shirt buttons’. Soon the banks and hedgerows will be full of these pretty little white stars, just in time to coincide with the bluebells, which make for a beautiful combination, especially with a few red campion thrown in for measure! 

As it turns out, it has been rather cold for a while now and nature has very slowly been waking up, the bluebells are only just here and the hawthorn is still in bud. We have now completed three sections of our walk and have reached Melford Country Park. We have enjoyed an abundance of wildlife, wildflowers and other sights along the way, including a pair of red kite circling above us at Nayland, the dragon on the walls of St Mary the Virgin at Wiston, peacock, brimstone and orange tip butterflies, swallows over Sudbury Meadows, and a little mouse, busy in the bottom of the hedgerow, that we quietly watched for a few seconds but it felt like several minutes. 

Mum loved Suffolk and would have loved all the wildlife we have seen so far, she would have been able to identify so much more of it, but we are working on our knowledge and can’t wait to see what we discover next!

Check out Lucy and Kate’s fundraising page for an update on their challenge and to offer your support. If you are inspired by Lucy’s story and thinking of taking on a personal challenge, get in touch today and we can help you make it happen! Call 01206 226500 or email fundraising@ms-uk.org

Give a Peer Pod a go!

Posted on: May 14 2021

As part of MS-UK's Online services, we have developed the Peer Support Service. Within this, there's several Peer Pods and each of them are hosted by someone living with multiple sclerosis. There's ones for specific interests and hobbies, and a general one where you can meet people in a similar situation who understand MS and the challenges it can bring. This blog is from one of our Peer Pod members. If you fancy taking part in one, click hereLWphoto.jpg

I stumbled across the MS-UK website and the Peer Pods almost by accident and I thought why not give them a try? I am so glad I did, it has opened a whole new world to me, there are other people out there with MS who just get it. 

The Peer Pods and the virtual friends I have made attending have been a great support to me as I was only diagnosed with RRMS in March 2021, after previously being diagnosed with CIS in 2014. The Peer Pods are a great space to talk not only about symptoms and treatments but mostly about other areas of interest such as TV, podcasts, craft and nature. 

One of the members of the Peer Pod has also offered to buddy up with me so I can contact him anytime about the weird and wonderful symptoms and get support and advice. This has been a great comfort blanket.

The Pods include a great mix of people of all ages, with different types of MS including those that have been living with MS for several years. Everyone is made to feel welcome.

Some of Peer Pods also have WhatsApp groups which are great way to keep in touch and offer help and support to each other. After being widowed in January the group are always there to offer a word of comfort and support which I have found invaluable.

This has all resulted in volunteering to be an MS-UK VIP as I want to give something back to the charity that has helped me so much. In short giving the Peer Pods a try has given me such much and whole new group of friends that I hope will be around for a very long time.

 

“My son said how much calmer and happier I've been”

Posted on: May 11 2021

Ella Shaul explains how multiple sclerosis counselling helped her in so many ways 

I decided to start counselling with MS-UK as I had a recent relapse, and have struggled for most of my life with depression, anxiety and mood swings. I have been experiencing multiple sclerosis (MS) symptoms for about 10 years with no diagnosis until two years ago.

I wanted to talk through how I was feeling with someone who would understand, and start to feel that I was making a step forward to feeling better and facing my condition and my depression. I wanted to find an acceptance of my illness.

It was fantastic having Jaz to talk to each week, especially through the difficult times – what with the pandemic and the uncertainty of MS and the world around us.

I had a really good sense of wellbeing after my counselling sessions. I also realised I was enough just being myself, and not focusing on what I can or can't do anymore. I learnt to put my health and wellbeing before other things so I was then able to manage life better. I stopped putting as much pressure on myself to be doing everything.

I found it was easier to ask for help, and be more upfront when I was struggling, instead of just carrying on and making myself feel more unwell. I have been able to stop criticising myself, or if I do, I am able to change the way I’m thinking before it spirals.

Family and friends have noticed a difference in me lately. My son has even said how calm I am and much happier I've been.

I have started to connect with others with MS and it’s been really positive. It's been great knowing people who have the same struggles and discuss the similar tools that we all seem to have to help ourselves. 

I would recommend counselling to anyone. At first I was unsure about it all, especially being in lockdown and having to home school – I thought I wouldn't be able to manage it all. I found taking the time out to speak with Jaz so beneficial. It's definitely a non-judgmental, safe place to offload and navigate ways to help yourself. Also I like that you can speak again with your counsellor again after six months to check how everything is going.

 

Apprehensive about lockdown easing? MS-UK Counsellor Kerry has some tips

Posted on: May 10 2021

MS-UK Counsellor Kerry Trevethick shares her words of advice on how to manage the easing of lockdowns across the UK, as the end of restrictions is in sight and how to be kind to yourself during this time.  Kerry Trevethick - MS-UK Counsellor.png

Across the UK, lockdown is easing and whilst many people can’t wait for restrictions to be eased and be able to socialise with friends and family again, many others may feel anxious or apprehensive about returning to things we haven’t done for a while and our old routines. Lockdown may have been difficult for many reasons but it provided a level of certainty and clarity on the rules and what we were to expect. However the easing of restrictions is less clear cut, and this can be stressful and anxiety provoking.

There are a range of different emotions that you may be experiencing such as:

  • Anxiety and worry
  • Stress
  • Low mood and depression
  • Anger
  • Confusion or feeling conflicted
  • Feeling unsupported
  • Feeling unsafe
  • Grief and loss
  • Powerlessness

It’s important to acknowledge that these feelings are valid and reasonable, and just like it may have taken time to adjust to going into the first lockdown, it may take time for us to adjust to life post-lockdown. It is okay if it takes time to adjust to life changing again.

Some people may find it very difficult in making decisions about how to keep safe now, who they should see or avoid, where should they go or not go - this is normal. For a long time, these decisions were made for us. We may feel that the responsibility of this decision making is too much, but you can take things at your own pace and remember there is no rush to get back to your old routines – you can be in control of how fast things move for you but be wary of avoidance as this can help maintain anxiety.

For some people, life post-lockdown will look very different. Maybe you have been bereaved, lost a job or had a relationship breakdown, and it is okay to feel this grief and there are organisations that can help you.

There are things that we can do to help ourselves manage our feelings as lockdown is eased and these are outlined below:

  • Keep healthy habits – just as this was important in helping us cope when lockdown first began, habits such as eating well, getting enough sleep, physical exercise and being out in nature, these things can also help us cope now.
  • Pace yourself – don’t let others put pressure on you to do things that you don’t want to do but do try and gently challenge yourself to increase the amount of activities that you feel comfortable in doing.
  • Control the things that you can – restrictions have meant we haven’t had much control over our lives recently but there are things that we can control and it is important to remember this. It can also be helpful to find ways to let go of the things that are beyond our control.
  • Focus on the here and now – restrictions can change so quickly and this can feel stressful, focussing on the present can help. We can only do our best with what we have right now.
  • Talk to people – talking about our feelings to people we trust can be really helpful, you may even find that they have similar feelings too.
  • Get support from an organisation – if you are really struggling with your mental health then support from an organisation or counselling may be helpful. Talk to your GP or local mental health team. Organisations such as Mind and Anxiety UK can also help.

 

Foot drop exercise masterclass with Alan Pearson

Posted on: May 07 2021

It is a pleasure to be able to put together a series of masterclasses around exercise and education in MS. I spend a lot of time working and educating people around their symptoms and seeing the effects that MS has on their bodies, whether walking, sitting or tasks of daily living. By helping people have better knowledge and understanding about their MS symptoms, it allows people to have more independence and improve their quality of life. Alan headshot 3.jpg

As a Level 4 Exercise Coach for Long term Neurological Conditions, I have been working with people with MS and other neurological conditions for the past nine years and if you have been following our online classes or joined in one of the many information sessions from our fellow professionals, you will be building a wealth of understanding that will help you on a day to day level, reduce symptoms and help maintain a more stable condition. 

People with MS experience different symptoms with their condition from muscle weakness, fatigue, spasms, numbness/ tingling, difficulty walking, coordination, balance issues, are just a few symptoms associated with MS.  One of the many symptoms I am asked about is foot drop, the inability to lift the toes and flex the foot at the ankle. Many of you may have found yourself walking normally and then after some time your foot starting to drag or catch on the floor, maybe having more trips and falls, a high stepping gait or throwing the leg out to the side when trying to walk.  

During the next masterclass, I will address some of these areas and demonstrate some exercises that can be beneficial for foot drop. I will talk about types of equipment that can be used like foot drop stimulators and foot orthosis that assist for the foot drop condition.  

The exercises will help to support a better functional capacity and help maintain a more neutral foot position. We will also look at the global effects that it has on the rest of the body when sitting, standing and walking itself.   

If you like the sound of this masterclass, please come and join us!  To register for the session, please click here. There is a suggested donation of £5, but you can donate any amount from £1 to attend.  

Meet Kylie, one of MS-UK's Community Champions!

Posted on: May 04 2021

Hi everyone, I’m Kylie, I’m 40 years old and I’ve recently applied to become an MS-UK Community Champion. My awesome friend (that I’ve only met because we both have MS and ours paths crossed) told me all about MS-UK and the great work that they do for people with multiple sclerosis (MS) and what it meant to be a Community Champion. Kylie Aggio.jpg

It’s going to be great to help raise funds and awareness. I also love meeting and talking to new people and it’s a role that has no pressure and stress attached to it, so it is perfect!! I’m very excited to be a part of #TeamPurple!

So, just a little bit about me. I was diagnosed with MS eight years ago. I had no idea that I had anything wrong with me until in the space of a few weeks I developed many symptoms of MS. It started with tingling in my fingertips, then my toes and just spread like wildfire from there. I consider myself to be very lucky as a few visits to the doctors, I was admitted to hospital where I remained for a week while I had intravenous steroids, an MRI, and a lumbar puncture. By the time I went to hospital, I could barely walk, bounced off of walls and couldn’t even hold a knife and fork anymore.

I came out with my diagnosis of MS at the end of that week and started a disease modifying drug just a few months later once funding came through. I know that other people’s diagnosis journeys to getting a diagnosis have been a lot longer, so I am grateful that it happened in the way that it did. I’m very much 'a glass half full' kind of girl, with a decent amount of stubbornness, so I worked hard on a long recovery when I got home. I have an amazing fiancé that helped me to get quite literally get back on my feet. I have permanent symptoms that remain and symptoms that constantly come and go but I’ve just learned to live in a different way. There are always ways around things. I wouldn’t change having MS because I’ve met the most fantastic people and it’s changed me in a very positive way. It made me realise that I had to cut stress out of my life as much as possible as it is absolutely my number one trigger for a relapse. It’s taught me that actually it’s okay to say no (still working on that!), and it’s also given me back my love of arts and crafts. Although MS can be hard and challenging at times, it can also bring great gifts with it.

If you'd like to find out more about becoming one of our Community Champions, click here or contact our Fundraising team on fundraising@ms-uk.org 

Don’t stop me now… Louise and how gardening and her MS go together

Posted on: April 30 2021

This week, it’s National Gardening Week and we’ve been sharing ways that you can adapt your garden to become accessible with symptoms that include decreased mobility. Louise hasn’t let her multiple sclerosis dampen her love for gardening. Instead, she’s made adjustments to continue growing a selection of fruit and vegetables. Here, Louise shares her tips on how she manages her garden with mobility challenges with some methods you can adopt too. peer pod host louise_0.jpg

‘Don’t stop me now’.  That is me speaking to my multiple sclerosis (MS), in relation to my passion for gardening, nature and the outdoors. When I was diagnosed with MS about five years ago, I was determined to spend as much time as I could outdoors, despite my diminishing walking ability and muscle strength. I have a third of an acre, which I manage with labour-saving layouts and structures, timing strategies, and help with heavy tasks. The front garden consists of flower and shrub beds with gravel and moss paths in between to eliminate having to lug or pull a lawn mower round to it. There is lawn in the rear garden which is mown from March to early summer then allowed flower, with what are usually regarded as weeds, for pollinators and to encourage wildlife. The trend to let part of your garden ‘re-wild’ is beneficial to nature and less effort.

The vegetable and herb garden is structured in raised beds which I cultivate using the ‘no-dig method.’ I work on it early in the morning when my leg strength is at its best and before the sun makes me feel dizzy or saps my energy. If this happens, I go into the shade or indoors, leaving everything where it is, and I usually recover by late afternoon when I return to do light jobs or water if needed. It’s rather like a Mediterranean lifestyle, rising early to work outside, taking a long midday siesta and returning later in the day. I fill plastic milk containers with water or liquid fertilizer and leave them dotted around at various points in the garden so water is at hand. This eliminates having to carry heavy watering cans and buckets or walking back and forth to turn hose pipes on and off.

Beyond the lawn and vegetable garden I have an orchard of cherry trees where I have an apiary and chickens. I have a newly erected polytunnel with staging along one side so I can potter along in there with something to hold onto, plus a couple of chairs I can use for rest when needed. I am growing plenty of tomatoes, peppers and aubergines for the ‘eat a rainbow’ diet advised for a healthy immune system.

By the back door I grow herbs and salad leaves, all the year round, in pots and troughs so I can just snip off a few leaves, as needed, without having to walk far. It is where I also have a flip top compost bin for the easy disposal of vegetable food waste, coffee grounds and paper. Quantities of organic matter are essential for no-dig cultivation.

Besides produce and flowers, a garden yields many benefits for health and mental wellbeing.  Our immune systems require plenty of Vitamin D from sunlight and our circulation and breathing improves with fresh air and being amidst plants. Functional exercise, taught in MS exercise and Pilates classes, can be applied to the movements required for gardening tasks and, as such, help to strengthen muscles and improve neurological pathways.

My MS does mean that, at times, I do not have the strength or energy to work in the garden, but this gives me the opportunity to just stop and stare at the wonders of nature reminding me of the poem titled Leisure by William Henry Davis which begins like this... 

‘What is this life if, full of care, 

We have no time to stand and stare.

No time to stand beneath the boughs

And stare as long as sheep or cows’…

 

Louise is the host of our Nature Peer Pod. You can join Louise and the rest of this pod’s participants each week in their meet, via Zoom. You can find out more about our Peer Pods by clicking here.

Multiple sclerosis - I do it my way

Posted on: April 26 2021

Karen.jpgBy taking a holistic approach, yoga teacher Karen is living medication-free 16 years after diagnosis

I remember going on holiday one summer in the mid-1990s and having a numb body from the waist down. The sensation of swimming in the pool was very odd. It went after a few weeks and I didn’t think to go to a doctor. I was about 27 years old.

I had been getting numb feet and hands for years after that, and generally feeling tired, but put this down to working 12-hour day and night shifts and commuting into London. I was running on empty, and stressed, too. I took redundancy from work as the company were relocating, and I had a baby boy at age 35.

Roll on to 2005, age 37, and I have a 2-year old child. I was trying to fix our house alarm and it went off, ringing loud in my ears. Next, I couldn’t walk straight. I went out of the front door, but was all over the place.

It was disorienting and frightening. I had vertigo and couldn’t stop vomiting. My hands went numb, I found it hard to do anything involved with fine motor skills such as doing buttons up.

I was in shock. It felt like a bereavement – a loss of the life I thought I was going to have, more children, and a new career – I was due to start a graduate teacher training program, which I gave up.

The MS consultant phoned me one evening as I was putting my son to bed, my husband was out. I still remember the look of bewilderment on my sons face as I continued putting him to bed after the phone call, tears streaming down my face. I hope nobody else hears like that.

I do remember spending that first year after diagnoses in bed a lot, sleeping. I was extremely fatigued but, oddly, for the first time, I listened to my body and rested instead of pushing on. My son was still taking day naps, which helped. Having the diagnosis meant I felt justified in taking the rest I needed. I had permission!

Trying treatment

I went into helpless auto pilot mode. I thought the doctors know best surely… this is what they do as a specialty. I took steroids originally and I went on to beta interferon and started injecting three times a week, but every time I injected it took me 24 hours to recover. There was something in me that just didn’t feel right.

I started working part time at my son’s preschool, and then had time to start back at regular yoga practice. The feeling of strength, calm and increased energy that yoga gave me was heartening.

By 2010, I had taken myself off the medication and started doing yoga regularly and in 2014 I had qualified as a children’s yoga teacher, enjoying teaching the additional needs children in the preschool. In 2015, after a yoga retreat to India, I took an 18 month, 200-hours yoga teacher training. I’ve been teaching five years now.

Yoga means to yoke or union – of the mind, body, breath, spirit, everything is connected, so you tend to take your practice off your mat into your daily life. My coordination and balance improved, I gained strength, and an overall sense of calm. Acceptance for me is the key.

Holistic approach

As well as practising yoga, I take vitamin D, B12, magnesium, and omega 3.

If I feel an MS ‘hug’ on its way, or my legs getting numb, I’ll cut out wheat, dairy and sugar (inflammatory foods) until I’m back on track. Oddly, pre-diagnosis, I had been trying to conceive from the age of 30, and at 35, after seeing an acupuncturist who told me to cut out wheat, dairy and sugar, fell pregnant within a month! My parasympathetic nervous system was a mess... so I always revert to a ‘clean’ diet when I need to. I wake up to hot water with lemon and ginger, another great natural anti-inflammatory food.

Very recently I tried a fasting mimicking diet (FMD) for five days. I was reading a book by Dr Valter Longo, The Longevity Diet. The FMD claims to trigger cellular clean up and renewal. I had so much energy after it and am going to look at doing something similar every season.

"As well as practising yoga, I take vitamin D, B12, magnesium, and omega 3"

I have hyperbaric oxygen therapy at the wonderful Milton Keynes MS Therapy Centre which, oddly enough, I wasn’t told about by my MS doctor. It worked fantastically when I was first diagnosed, giving me much-needed extra energy. But I tried it again a few years ago and it didn’t have quite the same effect.

I also love walking and wild swimming with friends.

I was a real ‘type A personality’ and driven to the point where chronic stress was a normal part of my life. I went from being a bit of a people pleaser, to being able to say ‘no’ more. Ironically, MS changed my life for the best.

Staying positive

I believe in practising gratitude. Always be grateful for all you have, however small. I try and exercise every day. I love tai chi, and have massage to boost lymphatic flow.

I’d advise anyone with MS to eat well and listen to your body. Try and heal your gut. Make yourself a priority. Remember it’s OK to say no, it’s OK to cry, it’s OK to rest, and it’s OK to slow down. Know your limitations, but remember to keep moving. Be you. Do what makes you happy. Take one day at a time.

Get good quality sleep. Eat anti-inflammatory foods. The gut and its involvement with autoimmune diseases seems pretty topical at the moment. Join a yoga or exercise class, even if it’s online currently. Preferably start a live class when they are allowed again, or a Zoom-type class where you can feel part of a group and the teacher can see you. If you don’t like it, try something else until you do. As humans, we are designed to move.

Try and get outdoors everyday, too. If you can’t take a walk, sit in the sunshine, lie on the grass and look up at the clouds. Even in the winter I’ll lie with my legs up against a tree or a wall for up to 20 minutes – it’s so grounding and calming for the nervous system. I’m not really into social media by choice too... I find it too energy-sapping. I like some of the really good positive groups that I follow, but for me, restricting use is essential for my wellbeing.

Please don’t panic. Check out the positive stories of MS, such as Dr Terry Wahls. Take responsibility for your wellness. Find out what you can do to help yourself. Perhaps find a support group that is positive. Most importantly, listen to your body. Take time to be still and feel what your body needs.

My hope

On a medical level, I’d like to see people supported in their lifestyle choice of managing their condition through lifestyle changes. I’d like to see the doctors telling people what we could be doing to help ourselves. I’m sure there are some great consultants and MS nurses out there.

The NHS is saving £8,000 plus per year by not providing me disease modifying drugs but, more importantly, I’m managing the symptoms. But yoga classes, massages, acupuncture, and hyperbaric oxygen aren’t free. If these could be provided on the NHS then I think we could be tackling MS from all sides.

I’m not anti medical intervention, though. If I felt I needed help and medication in the future I’d ask, but there is so much we can be doing for ourselves. I’m coming up to 16 years diagnosed and feeling better than ever.

On a personal level, I’d say do not let MS define you. I don’t use the term ‘my MS’, and don’t introduce it as part of me as people are quick to judge and discriminate. After qualifying as a yoga teacher, I got offered a couple of jobs at gyms, and I’m pretty sure if I’d put MS on the form, I wouldn’t even have got through the door. I never took a day off sick, because I manage the symptoms.

Some people like the ‘MS warrior’ stance but, for me, ‘acceptance’ is the key. I’m not fighting MS, I’m living and breathing it.

My symptoms are there to remind me, I am at ‘dis-ease’. So take a breath, take it easy, and slow down. Our bodies are designed to be in a natural homeostasis state and will respond to how we treat them, so treat them well.

Find out about Karen’s yoga teaching at www.karennoonyoga.com

If you liked this, read: Diet and lifestyle advice for multiple sclerosis

Tessa's story - MS Awareness Week #ThisIsMS

Posted on: April 19 2021

Tessa hasn't let MS deter her from acheiving amazing things, having authored several books and forge her path within the local community through her writing. Here, she shares her story from diagnosis to present day. 

I wanted to tell my story to show others who may be just at the start of their multiple sclerosis (MS) journey that there are ways, even without disease modifying drugs (DMDs), to manage your symptoms, achieve your goals and lead a full and enjoyable life. 3_3.png

I’m seventy now and have lived with MS for almost 35 years. I was diagnosed with progressive MS shortly after the birth of my first child, at a time when there weren't any MS drugs available. As a new mother, I was determined that my daughter was not going to grow up to be a young carer, and that meant researching ways to help myself. I decided to see if there was any evidence that changing my diet might help, and I soon discovered there had been quite a few trials involving MS and food. I then consulted a doctor who also believed nutritional medicine could help MS, and I started to feel better.

In fact, I felt so much better that my husband accepted a temporary teaching post in Australia, and we moved to Tasmania for a year, where I had another child. It was whilst we were in Australia that I heard of a radical new theory about treating MS, which involved intensive exercise – specifically, weight training. Back in Britain, I added regular weight-training to my low fat, gluten-free and dairy-free diet, and my symptoms stabilised. Although I had some residual disability, I no longer worried that my symptoms might suddenly get worse.

I remained stable for thirteen years, during which I started writing regularly, and began an Open University degree. My book about nutritional therapy for MS, The Multiple Sclerosis Diet Book, was published in 2007, and I’ve since published three children’s detective novels, The Eye Spy Series. I’m now working on a Young Adult (YA) novel.

I’m not the only person with MS who has found that it has brought pluses as well as minuses into my life. Being unable to carry on working full-time gave me the opportunity to try writing, which had always been an ambition of mine. Being a stay-at-home mum with MS was sometimes isolating and lonely, but writing has helped me to get involved with the local community and make new friends. And although my MS symptoms have progressed a bit during the last ten years (mostly sight and bladder problems), I’m still able to walk around the house, and only use a wheelchair outdoors.

I was extremely lucky in finding the right advice just when I needed it, but I think it also helps that I’m a glass-half-full person. I’ve always seen MS as a challenge to be overcome, and not an insurmountable obstacle. I just wish that medical training included more about the benefits of a healthy diet and the right sort of exercise, so that medical professionals could start handing out advice on these at the same time that they hand out DMDs. Knowing that you are doing something to help yourself is hugely empowering. 

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