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"Running helps me beat fatigue"

Posted on: January 30 2020

JM-SM-Dubai.jpgJohn Mills tells us about his marathon motivation and how training helps him manage his MS

Here’s a quick introduction for those of you that don’t know me. My name’s John Mills and I’m going to be running the London Marathon for MS-UK this year.

I was delighted to be asked to blog on the run-up to the big race by the team at MS-UK. It’s a cause that’s very personal to me. The year 2017 was one of big changes. My wife gave birth to our beautiful daughter, I turned 30, and I was diagnosed with multiple sclerosis (MS).

In this blog, and further forthcoming ones, I will write about my journey and progress from the perspective of a runner, how my training is progressing and how my MS is in relation to this.

My motivation

I tried my hardest for over a year to ignore my diagnosis. I didn’t want MS to define who I was but, with the help of MS-UK, I have now realised that I can help define the condition instead, by raising awareness and promoting the fantastic work that MS-UK do.

Having already started fundraising, raising over £2,000 in a month, and meeting 20 or so #TeamPurple runners at a recent event means that there is now no turning back for me!

I am using the Nike Running Club (NRC) app for no other reason really than I have had it since 2013 and I know what to expect when using its training plans.

Royal Parks run

To get me off to the best start possible, I signed up for the Royal Parks Half Marathon. I am so pleased that I did. More than anything, I learnt what to expect come the 26 April 2020.

Here is what I took away from the day.

1. As silly as it sounds, 16,000 people is a lot to get across the start (and finish) line and that number will be doubled come April, which feels a little overwhelming. 

2. Headphones are not needed. You won’t need headphones come race day (for training they are a must, for me anyway) as there is so much more going on to keep you occupied other than a playlist; the sights of London, steel bands, marching bands and the incredible support. It’s amazing that someone who you have never met before shouting your name can put a smile on your face after just having ran 13 miles!

3. Try to at least roughly plan where your supporters will be beforehand as you will undoubtedly miss them, as I did, if you don’t know where they are. My first recommendation to anybody running the marathon for the first time is to try and get some race day experience so you know what to expect.  

My wife Sasha and I ran the Colchester half marathon for the MS Society back in 2016 because someone Sasha knows had been diagnosed with MS earlier that year. We raised £1,800 and, ironically, I had no idea that just a year later I’d be diagnosed myself.

Meditation

I’ve always enjoyed running, but even more so now, as for me it is a form of meditation. All I need to think about is putting one foot in front of the other – nothing else matters. You are only competing against yourself. I wanted to act now with regards to running a marathon because with MS you just don’t know if or when it will have a greater impact on your everyday life. MSUK royal parks half 2019-9.JPG

Running and, more specifically, training for the Royal Parks half marathon and now the London marathon is part of my daily routine. It may sound odd, but if I wasn’t running, fatigue would get the better of me and I would spend the rest of the day in bed.

Today is a perfect example of that. I find maintaining a routine is key and exercise forms a strong part of that. I’m told that there is science behind that, but I am by no means an expert. All I know is that it helps me.

My motivation

Training for the marathon is a great incentive for me to get out and maintain a certain level of fitness. After a run I get a sense of accomplishment and feel like I am beating MS one day at a time.

Currently I am not on any disease-modifying therapy for my MS, but I am due to start Ocrevus which works perfectly around training as it’s a six-monthly infusion. I take it as a sign that I am supposed to be running this marathon.

To sponsor John, visit his JustGiving page https://www.justgiving.com/fundraising/john-mills-msmyselfandi

“I was told to expect the worst I could imagine, and then some”

Posted on: January 27 2020

scoo.jpgWe catch up with former Gogglebox star Scott McCormick after he underwent HSCT treatment

On my second day in Hammersmith Hospital, my treatment began.

I had 1.5 litres of chemo drugs, followed by the 1.5 litre anti-thymocyte globulin (ATG) chaser. The ATG was far harder than the chemo – that much I will say. I had a lot of water retention that concerned the doctors. I was carrying 5kg more than usual, which meant I was holding five litres of excess fluid from the chemo and ATG infusions over the previous four days.

Immune system destroyed

At this point, my bloods were frequently checked. I was neutropenic [having a very low level of neutrophils, which are white blood cells that fight infection], with absolutely no immune system what so ever. This meant any everyday bug or virus now had the potential to really go to town on me.

This was not helped by the chemo and ATG making all the thin membranes in my body – from my gums to my rear exit – very thin, sore and swollen.

Preparing for HSCT

Here are some things I’d like to pass on to anyone due to undergo HSCT:

  • Get a soft toothbrush – it really helped with the aforementioned gum issues
  • Basic personal hygiene is key at this time. Even if you can’t be bothered, and are having to use a chair in the shower, you must. A good warm shower not only feels great, but it will wash the strong chemo smell from your skin
  • I'd also recommend to anyone about to undergo HSCT to get a soft, warm woolly hat, as my head was cold after I lost my hair, and I was seen wearing my pants on my head at night
  • Paying £20 for the high-speed internet to keep yourself occupied is another must. I tried to write back to every person who had taken the time to write to me during my treatment. As well as being polite, it was also self-serving by keeping me very busy for a lot of most days
  • Make sure you have a few sets of spare clothes with you (I’ll explain why in a minute). I just about got away with a set of three full changes of clothes. With retrospect, four or five or might have been wiser, but there is a washer and a dryer on the ward for all to use

I was so glad that chemo smell only lasted for a week or so. The memory of it will be with me for a long time, I think. It even put me off the deodorant I was using, as I was associating it with the smells. It was a cheap one I will never use again, as I had given this some thought before I went in for the HSCT. Everything was cheap and disposable, so I could bin it after I left hospital.sctt.jpg

Inevitable infections

At the point where I was neutropenic, I had been told by Nader, one of the brilliant nurses looking after me, that if I ever started to feel warm, I should tell someone immediately. Everyone gets a nasty infection at this stage.

So, as predicted, a couple of days after having no immunity at all, I sure enough felt warm, so I informed Nader who promptly checked my temperature and confirmed what was suspected.

He disappeared for a couple of minutes after telling me to go back to my bed. He came back with another two nurses and a tray full of strong intravenous antibiotics, and plugged them into me, with a bag being pumped into each arm simultaneously.

As this came to an end, I was asked to move off the bed, as things can become a bit soft in the bowels. As I stood, I can only describe what happened as a tap being turned on from the back end. I had no control what so ever and made a right mess.

I was told that this will happen to every person at this stage with the strong antibiotics. This made me feel a bit better, but it was so weird not having any control. I still had, before the antibiotics, some level of control of my bowels, even though my multiple sclerosis (MS) had been slowly eroding my sense of feeling and control of all things down there for some time.

So, be aware, this will be something all HSCT recipients will go through.

The treatment actually wasn't anywhere near as bad as I thought it was it going to be. Bearing in mind that the first day at Hammersmith hospital I was told to expect the worst I could imagine, and then some. I guess I can imagine some pretty dire situations, because neither the chemo nor the ATG took me there, although the ATG felt far worse than the chemo drugs.

Scott 9.JPGI was told by a friend’s wife, who knows how to put things into context for a squaddie, that chemo is like Domestos bleach to the body. That’s why they put in a peripherally inserted central catheter (PICC) line to the heart. The heavy thick artery walls are robust enough to take the chemo.

The chemo would take two to three hours to administer. The ATG took between 12 hours to 16 hours to administer the same volume of fluid. This does suggest the ATG is so very powerful, and the body can only take it slowly without it harming the individual.

My advice

If you are going to have HSCT treatment, a positive mental attitude will see you through it. You must remember you are in a country of 61 million people, and you are in one of the finest hospitals on the planet, with some of the best people, undergoing a well-rehearsed procedure. You will have passed through the strict entrance requirements to even be there in the first place. You are within reaching distance of a place where MS can no longer hurt you.

It’s worked

Fast forward six months, and I’ve had tests which have confirmed my HSCT treatment worked. I’ll try and explain this with the following analogy. I am a car, and MS is a thug that has smashed me up a bit. The thug has been taken away by the HSCT, but the car remains damaged. This is the simplest way I can explain it. The only downside is that the car might not fully repair itself, if at all. I have my fingers crossed, though. A positive mental attitude should keep me going, and I will have another MRI next October to check my MS has not returned.

For me in the short term, I will chip away to try to get strength back. I used to be a hands-on aircraft engineer, and there was nothing I couldn't do. I want it all back, and I want it yesterday.

Visit www.youtube.com/channel/UCMK3P_VOUfDtKU-JWkoeArg to follow Scott’s HSCT journey.

“My neurologist tried to talk me out of having HSCT”

Posted on: January 24 2020

Scott at Hammersmith Hospital.JPGWe catch up with former Gogglebox star Scott McCormick after he underwent HSCT treatment  

I knew nothing about haematopoietic stem cell transplantation (HSCT) treatment. It was my wife Georgia who first stumbled across it when she found a Facebook group called UK HSCT for MS and autoimmune diseases. She was apprehensive about telling me, because I can be feckless… apparently.

As soon as I heard about it, I was sold. The statistics made sense – to have the treatment meant an 80 per cent chance of it working, to not have HSCT meant a 100 per cent chance of still having multiple sclerosis (MS), and getting worse. I made the decision in a split second, and my eyes were already fixed on the recovery.

The struggle to get it

I asked my neurologist in Peterborough Hospital about HSCT and he immediately started to try and talk me out of it. Eventually, after much persistence, I was referred to Addenbrookes Hospital in Cambridge several months later, but was again met with resistance.

There, I was offered more new drugs, but continued to ask to be considered for HSCT. Again, the neurologist tried to talk me out of it by saying how hard it is to get, and that I'd be better off with the pharmaceutical offerings (I swear they are on commission).

Eventually, after much research, Georgia found Dr Victoria Singh-Currie at Charing Cross Hospital in London, who I feel has been the single most proactive, forward-thinking neurologist I have met. When we spoke, she was not shy in telling me my chance of getting HSCT was still very remote, and that I was so close on several aspects of the requirements to not qualifying at all. But, with a letter from Georgia detailing what was going on with me, she agreed to put me forward to the board in the following January.

There was not much hope of me getting through, mostly due to my having had MS for 13 years by now, as well as only having tried two different drugs.

What ensued was a very long drawn out battle which, fortunately, I won, and I was granted the treatment.

It began

As far as nerves go, I felt none. If anything, I was excited. My family knew I would be fine, but I am positive they were worried, so very worried – it is my wife’s speciality, after all.

Having been in war zones six times in my RAF career, going into a hospital where highly trained and hugely competent people want to see you walk out of the door did give me enormous confidence in the HSCT process.    

The stem cell generating machine at work.jpgThe treatment in its entirety is extremely complex and time consuming for all. Firstly, the stem cells are stimulated and extracted. This saw me issued with some mild chemotherapy at Hammersmith Hospital, then sent home with more drugs to inject into my spare tyre around my substantive belly for a week. 

I then returned to Hammersmith Hospital to have my stem cells separated from my blood and put on ice to preserve them for use later, once the heavy chemo and the anti-thymocyte globulin (ATG) had destroyed my currently defective MS immune system.

After this, I was issued my date for treatment. I was supposed to go in on the 10th June, but I got a cold and was referred for two weeks until I was over it. You can't go in to HSCT with any virus or bugs at all. They would cause many serious complications at a very hazardous time.

Soon the day came for the treatment, and I was admitted to Hammersmith Hospital. On the first day, I met the doctors and nurses who would be looking after me, and as for my treatment, I was told to expect the worst I could imagine, and then some.

Check back on the MS-UK blog on Monday 27 January 2020 to read part two of Scott’s story!

Vegan Chinese-style oyster mushrooms

Posted on: January 23 2020

mig resizedCROP.jpgDoing Veganuary, or just fancy cutting down on meat? Try this delicious Chinese-style meal from the ‘£1 Chef’ Miguel Barclay, famous for creating delicious recipes on a shoestring. Perfect for tight January purse strings, this meal costs just £1 per serving. 

Chinese-style oyster mushrooms

You can make this dish with any type of mushroom, or any veg really, but I find oyster mushrooms have a wonderfully meaty texture that make this a satisfying and substantial alternative to a Friday night Chinese takeaway.

mushrooms cropped_0.jpg

Ingredients

½ mug of basmati rice 1 mug of water

Handful of oyster mushrooms

Splash of sesame oil

1 garlic clove, sliced

Squeeze of golden syrup or honey

Squeeze of sriracha sauce

Soy sauce

Pinch of sesame seeds

½ spring onion, sliced

Method

Put the rice and water in a saucepan and cook over a medium heat with the lid on for about 7 minutes, until all the water has been absorbed and the rice is cooked.

Meanwhile, pan-fry the oyster mushrooms in a splash of sesame oil over a medium heat for a few minutes, then add the garlic and fry for a few more minutes until the garlic starts to brown. Add the golden syrup and sriracha and simmer for a few minutes until the sauce starts to thicken, then stir in a splash of soy sauce.

Serve the mushrooms on a bed of basmati rice and sprinkle with the sesame seeds and spring onion.

 

book resized.jpg Extracted from Miguel Barclay’s Meat-Free One Pound Meals, Published by Headline, £16.99.

Guest blog: 5 steps to kick-start mindfulness for your MS

Posted on: January 20 2020

Wellness coach and Director of Work.Live.Thrive Zoe Flint, discusses what you can do to boost relaxation which can help boost your immune and central nervous systems

Getting startedIMG_3060.jpg

The first thing to do is to prioritise relaxation as an essential part of your health. My experience of delivering mindfulness courses for MS-UK, has shown me that very few clients typically think of themselves first. The vast majority are far more concerned about their family and friends than their own wellbeing. Whilst this is a lovely quality, “you can’t pour from an empty cup”, as they say. In order to be there for friends and family, we must prioritise our own wellbeing. There are many practices you can try, and below are my top recommendations for beginning to develop your relaxation practice. Give each a try and see which you enjoy most, set yourself some time daily to practice (like learning a musical instrument, learning a relaxation practice takes motivation, determination and regular practice, enabling your brain to physically rewire itself and prime your mind and body to be able to habitually slip into states of relaxation).

 

1.         Breathe

Probably the most important and effective way to induce the relaxation response, setting time aside to breathe slowly, deeply, and extending the out breath has remarkable effects at reducing stress, anxiety and panic

Try it - Breathe in slowly, filling the lungs completely to a count of 5. Breathe out, slowly and completely, to a count of 7. Repeat until you feel a noticeable sense of relaxation. Struggling? Download ‘Breath2Relax’ at the App store. 

 

2.         Learn Mindfulness

Mindfulness is a brain training meditation practice that originated in Buddhism 2,000 years ago. There is a wealth of research into its effectiveness at reducing stress and anxiety, increasing focus, reducing pain, boosting the immune system, reducing fatigue and increasing a sense of acceptance. There are also studies specific to MS that show a decrease in symptoms. 

Try it - Sit comfortably, in an upright position. The aim is to be relaxed but alert. Start by taking a few slow, deep breaths, letting go of any thoughts of worry, lamenting or busyness. Spend a few moments focusing on the sensations of breathing. Feel the air as it enters your nose; the temperature, the quality. Focus on its journey down into the lungs. The movement of the body and rib cage as you inhale and exhale.  Notice the change in temperature of the breathe as you exhale. Struggling?  Download the Apps ‘Calm’ or ‘Insight Timer’. 

 

3.         Progressive Muscle Relaxation

In addition to producing a feeling of calmness and relaxation, this technique helps you to notice areas of the body where tension is held and can ease headaches, muscle stiffness and bring a fresh supply of blood to important muscles.

Try it - Start with your feet and work up towards your head.  Scrunch up your toes, hold, and release.  Flex your feet, hold, point your toes, hold, and relax.  Squeeze your calf muscles, release.  Squeeze your thighs, relax.  Attempt to pull your tummy button towards your back.  Hold, and release.  Squeeze your shoulders up to your ears, hold.  Let go.  Make fists with your hands, tense them tightly, hold, release.  Clench your jaw, hold and relax. Sit for a few moments, absorbing the benefits of the practice. Struggling? Search ‘Progressive Muscle Relaxation’ on YouTube.

 

4.         Visualisation Techniques

Where’s the place you find the most relaxing? A beach, a walled garden, a meadow, a lagoon? Wherever it is, you can go there in your mind. 

Try it – Imagine the most relaxing place you can, using all your senses – what would you smell, hear, see and feel? Warm sun on your face, birdsong, cool, soothing water or soft grass under your feet? Let your imagination go wild and spend some time each day in your relaxing place.  Struggling?  Search YouTube for ‘guided relaxations’.

 

5.         Fun and Laughter

So good for our immune systems and wellbeing in general, fun and laughter are often little prioritised in our busy lives. What makes you laugh? Can you make a list of films, podcasts, friends, activities and books that make you laugh out loud?  Laughter released pain relieving endorphins and helps us bond with others. 

Try it – Use your list to do something daily that you find fun and induces laughter.  Struggling? Try a laughter yoga class!

 

Fundraiser of the Month: Lisa Addie shares her #TeamPurple marathon story

Posted on: January 16 2020

2_1.jpg

As soon as I found out I had a place on #TeamPurple in the Virgin Money London Marathon 2020, I started telling everyone, and I mean everyone!

Setting up a JustGiving page makes sharing your fundraising story so easy. As soon as I had mine set up, I shared the link with friends, family, work colleagues, clients and suppliers at work, even the WhatsApp group that all the neighbours in my building are part of.

Spreading the excitement

Being passionate and truly caring about the cause you are running for is infectious. People feel it and get behind you because of it. Don’t worry about boring people, or get wrapped up in what they think about what you’re doing, as that’s not a productive use of your time and energy.

As well as donations from friends and family, I sold teams on a football scratch card. If you search ‘football scratch card’ on Amazon you can buy a pack of 10 for £3. I sold each team for £10, with £200 to go to the winner and £200 for MS-UK. I timed it to be drawn just before Christmas which I think helped get the squares sold. I’ll definitely be doing another card pre-race day.

I have also been in touch with my local community manager at Tesco to organise bag packing. I’ll be pushing for Easter weekend so that the shop will be a bit busier, and it’s not long before the race itself! I have linked up with a couple of other runners near me so that we can take this on together and have more of a presence in-store.

Running for my mum

My mum had secondary progressive multiple sclerosis. Her left leg was worst affected, making walking a daily struggle.

She would often fall in public and be left humiliated and, of course, in pain. crop_0.png

In September 2013, she was admitted to hospital for an unrelated skin infection. On discharge she was largely bed bound as her MS became increasingly aggressive, spurred on by a weakened immune system. A combination of all of the above led to her suffering a pulmonary embolism and passing away on 26/09/13. I don’t need to tell anyone how hard losing a parent is. I am completely and utterly lost without my mum and, even six years on, it’s as rubbish as it was then!

I was too young, selfish and naïve to take control of the situation for mum. I want to run the London 2020 Marathon in memory of her and to raise funds for MS UK to be able to help others with MS because of this. MS is misunderstood, it affects everyone differently and is completely unpredictable. I want to play my part in changing this.

My top tips

If you’re training for a big run, get started on your fundraising as soon as you can so you can smash it out of the park early and focus on training

Talk to everyone about it. It will connect you with people in a way you would never have imagined.

Use social media. I’m documenting my training on Instagram (@healthylivinglisa_). It’s an amazing tool to get chatting to other runners and widen your network even further.

Get yourself into the Facebook group and connect with other MS-UK runners. There are also a few London Marathon Facebook groups with thousands of people to chat to and get tips from. 1_2.jpg

Not everyone has this opportunity, certainly not those that are badly affected with MS, so it’s important to recognise how much of a privilege we all have to be part of #TeamPurple and what an honour it is to spread awareness and take this challenge on.

Am I having a relapse?

Posted on: January 09 2020

Ask anything.jpgWhether you’re newly diagnosed or not, there will be more than one occasion when you ask yourself this question. So how do you tell if you’re having a relapse?

If you have multiple sclerosis (MS) relapses are a big part of your condition. Typically relapsing remitting multiple sclerosis is characterised by relapses. However, even if you have secondary progressive or primary progressive MS you could still experience them, but perhaps less frequently.

A relapse can be defined as a sudden episode of new or worsening symptoms over a period of days, weeks or months.

What constitutes as a relapse?

Everyone is different and it can be difficult to recognise a relapse. Symptoms associated with a relapse can include: fatigue; pain; muscle stiffness or spasms; balance problems; weakness; numbness and tingling; bladder and bowel problems; changes to vision, thinking and memory and coordination issues. You may experience one or many of these symptoms at any one time.

New symptoms can develop, or those that you have previously experienced can worsen during a relapse and they can appear slowly or suddenly. To qualify as a relapse, symptoms must last for more than 24 hours and last for at least 30 days from the start of your last relapse. It is important to inform your doctor or MS nurse about your symptoms, so they can offer advice and treatment if necessary.

It is also important to rule out any other reasons for the symptoms you are experiencing. Infections, heat and stress are all common factors that are known to make MS symptoms worse and once treated symptoms may subside.

Write it down

It can be helpful to keep a symptom diary. Documenting the symptom, how long it lasts and how it affected you, for example, can help you define whether it is a relapse or not, and will also give your neurologist and MS nurse a clearer overview of how you experience MS and what they can do to help. Track your symptoms using the MS-UK symptom diary. Click here to download your free symptoms diary.

What happens?

A relapse is a result of inflammation in the immune system damage to the myelin, otherwise known as demyelination. Demyelination can slow or block the messages sent via the central nervous system, which as a result can cause the number of symptoms listed previously. However, inflammation doesn’t always cause a relapse. It can occur on other parts of the brain that aren’t associated with symptoms and the brain may be able to reroute around inflammation, this type of inflammation is known as silent lesions.

What should I do if I am having a relapse?

Relapses can be a sign that your MS is more active so it is important to report each one, even if you don't think you need medical treatment. Report it to your GP, MS nurse, or neurologist, who will then advise you on the best cause of action.

Guest blog: The growing pains of multiple sclerosis

Posted on: January 06 2020

Martin_0.jpgMultiple sclerosis blogger and influencer Martin Baum reflects on life with MS

There’s little doubt that much has changed since I was first diagnosed with multiple sclerosis (MS) back in the 80s. Today there’s more information, recognition and understanding but what does that really mean to any newly diagnosed young person? Well, if my journey through an illness with more twists and turns than the Hampton Court maze is anything to go by, not a lot.

What I still remember at the inception of diagnosis was how my mother, with the best of intentions, inadvertently began the process of putting my life on hold. She was always concerned about what might happen. My aunt, her sister, had MS. She was in a wheelchair which only added to the fear of an uncertain future for her son.

A negative ‘what if’ mindset was being formed and it was scary. Yet despite all her worst-case scenarios it took over thirty years for me to reach the secondary progressive stage of MS and writing this blog, has given me pause for thought all these years on.

A fundamental issue I have with MS is that it’s easy to forget what we can still ‘do’ and what we are able to achieve. The older we get the harder it can be to get on with life because sometimes MS makes simple tasks more difficult. But as far as it goes, the newly diagnosed youngster needs to be reminded that they are still essentially the same person as they were before being labelled.

There’s a line from Tashauna, a song by the Rossington Collins Band that goes ‘if you believe that you are weak, then weak you'll surely be’. A friend played me the song years ago at a time I was struggling with my diagnosis – it wasn’t the first time and it wasn’t to be the last where I felt I was out of my depth - but that lyric has stayed with me almost as long MS has.

Just because the worst-case could happen, it doesn’t necessarily mean that it will. Having MS is like climbing Mount Everest. Not everyone reaches the summit. For others who are at relapsing remitting, secondary progressive and primary progressive base camps it’s anyone’s guess how far up the mountain they’ll ascend. But until then, until you get there or if you get there, the only advice I would offer to any young person is this – it’s better to live a life, not MS.