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I've learnt to expect nothing and accept everything

Posted on: January 27 2021

Michael post 2.jpgNaturopathic doctor Michael Friedman reflects on what MS has taught him 10 years on from his diagnosis

As I sit at my desk, I can’t help but reflect on my experiences with multiple sclerosis (MS) and all that I’ve written about in my new book, There’s No Pill for This. My thoughts keep returning to this theme – although I’ve experienced improvement in my symptoms, and my physical signs of this, my journey hasn’t been without bumps. I still have bad days. Some of them are really bad. And I want to reassure you that that’s OK. Just as icier, colder nights cause maple trees to make sweeter syrup, the worst MS attacks can strengthen emotional and psychological resiliency.

Transverse myelitis

A few years ago I unexpectedly found myself overtaken by a condition called transverse myelitis, an acute attack on the spinal cord. It can occur on its own or in conjunction with MS. It can be mild and temporary or result in permanent quadriplegia. And it is fast. It’s like having an MS attack on overdrive. The symptoms can manifest in a period of several hours. Previous to this episode, I had been doing everything I could to be as healthy as possible, taking all the protocols for neuroinflammation and neuroprotection with herbs, diet, hormones, and prescription drugs such as Tecfidera. But I was bitten by a tick that was carrying the Lyme disease spirochete, and that I speculated triggered the severe attack.

What I’ve learned

My experiences with transverse myelitis and autonomic dysfunction are the two most recent events in my MS journey, and they are among my most intense, too. From them, and, indeed from my whole experience living with MS, this is what I have learned.

Every experience has a silver lining. If you can’t see the silver lining right away, it’s possible to reframe your mindset and create one for yourself. Here’s what I mean.

When I was battling the effects of transverse myelitis, life was very rough. The only way I could get around the house the first night was to lie on the floor and drag myself by the arms, grabbing the walls and the legs of chairs just to move from one part of a room to the next. I felt like an infant who’d just learned to crawl. I’d regressed, not progressed, and my family was sad and scared as they watched me struggle.

Both my father and my brother had been accomplished ice climbers during their lives. At some point, it struck me that my challenges in getting around the house on the floor were somewhat similar to their accomplishment in climbing a peak. In some ways, it might have been equally satisfying. So with that attitude adjustment, I prepared to traverse the north face of our kitchen.

Change in perspective

During this tough time, I felt a sense of significant accomplishment whenever I successfully solved the mental and physical puzzle of getting from point A to point B. I began to appreciate what I could do, not what I couldn’t do. I felt, in many ways, that my horizontal ‘ice climbing’ might even have been more difficult than the vertical kind because I had no choice. For me, the silver lining is that during my struggle to navigate my home, I experienced many pleasant memories of my father and brother that I might otherwise not have recalled.

Two days after being diagnosed with transverse myelitis, I was tremendously fortunate to regain use of my legs. Still, many other challenges remained. I still couldn’t swallow well. It took many more weeks of intensive therapy to recover, including having to practice enunciating simple sounds like t and z over and over again. Honestly, I felt disheartened – especially since my four-year-old daughter was learning to say four-syllable words at the same time – but instead I brought my focus back to my ice-climbing lesson. We shouldn’t compare our accomplishments with those of others and make that the basis of our satisfaction. For some people with MS, relearning to walk at age 50 might bring similar satisfaction to that of first learning to walk as a child.

I am never fully in control of anything. Despite all of my experiences over the years, it still never ceases to surprise and amaze me how quickly my body and cognition can change. MS has a way of humbling me – reminding me, after each attack, that my ability to pilot the plane of my own future is an illusion.

michael.jpgAfter all, I took all the right conventional and herbal medicines. I made sure to get enough sleep. I exercised as much as I could. I drank power smoothies. I underwent a fecal transplant and follow-up therapies. I didn’t smoke or do drugs. The Indian side of my family teaches that our fate is a partnership between us and God. I was doing my job as I believed it to be, and casting the rest of my fate to a higher power.

In many ways, I did great. Over an eight-year period, the lesion my neurologist had described as a ‘ticking time bomb’ grew very little. But as I aged, my body had more difficulty adjusting to the lesion, and I began experiencing attacks that I couldn’t predict and had no way of warding off. And no two attacks were exactly the same. Sometimes I’d have balance issues. Other times I couldn’t walk. More than once, I couldn’t remember simple things like what day it was.

I came to realise that control is a myth. God may or may not control my fate, but I certainly don’t. In so many instances when I thought I was in charge, and when I thought I could predict the future, MS smacked me back down to Earth.

I should not take anything for granted. Transverse myelitis taught me that one day I might be running around having fun with my kids, and the next I might be unable to walk. Autonomic dysfunction taught me that one day I could be conversing freely with family and friends, and the next I might have to relearn how to pronounce the letters of the alphabet.

With each attack, I discover something new, about my body and how it reacts and also about the assumptions I have taken for granted – my ability to clearly communicate, to walk, to tie my own shoes, to understand the question someone just asked. I’ve been extremely fortunate to have recovered from each major setback. But, since I know I have no control over the future, there’s no guarantee that I will bounce back the next time, or the time after that. Not taking things for granted is a companion to my humble attempt at a living-in-the-moment philosophy. Every step I take is a gift.

Limiting yourself in life might be freeing. Feeling pain and discomfort while spending time in isolation in meditation or fasting is not necessarily pleasant in the way eating candy is. But life isn’t candy, either.

Thanks to the expert advice from all those ‘-ologists,’ and to the strategies I describe in my new book, during my worst days, even as I struggled with the very real and very human fear of my own mortality and became frustrated with my limitations, I reminded myself that things wouldn’t always be that way. It’s important not to catastrophise your experience. Life goes on. You need to adapt to the world. The world doesn’t adapt to your illness and it shouldn’t.

I did recover from my own worst days. And while I’m never truly the same person I was before an attack – MS has a habit of leaving psychic as well as physical footprints – I want to reiterate that I attribute such ongoing recoveries to the lifestyle modifications I’ve made as I’ve learned about this condition.

When I was first diagnosed 10 years ago, doctors told me my case was moderate to advanced, based on the total number of lesions visible on my MRI. My first MS neurologist told me he had never encountered another patient who already had so many lesions upon first diagnosis. Six years later my second MS neurologist noticed that I no longer had visible cerebral cortical atrophy – the loss of neurons and the connections between them that’s characteristic of many neurodegenerative diseases. She also saw that my progression was incredibly slow, with barely any new lesions on an MRI. She called this remarkable, asked me what I was doing, and told me that pharmaceutical drugs alone couldn’t explain my results.

Conclusions

I have done the best I can and will continue to do so, as best I can. The overall lesson that MS has taught me is that we can make choices about our lives. We can prioritise where we put our energy and focus. On some days, we will have very few options to choose from, because the body ultimately says no. But even then, the mind is always free to choose a path within any limits the body imposes. If you only had 10 steps to take (because your legs don’t work well), where would you go? If you only had 20 words to speak (because your throat muscles don’t work), what would you say – and to whom?

MS forces you to prioritise what’s really important, and that’s the silver lining to the fact that there is no pill for this. Whatever curveball MS throws you, please try to do whatever you can, not only to treat your body, but also to accept it. We are on this journey of life (and MS) together. I wish you and your loved ones all the courage and inspiration you need to feel whole.

Adapted from Dr Michaël Friedman’s new book There’s No Pill for This (Chelsea Green Publishing, November 2020) and is reprinted with permission from the publisher.

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Introducing MS-UK Online

Posted on: January 18 2021

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

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

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

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

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

FB photo Alan.jpgOnline exercise classes

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

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

How the classes are structured

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

Find out more

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

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

Meet Matthew Swan, Chair of our Board of Trustees

Posted on: January 15 2021

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

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

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

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

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

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

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

Dealing with uncertainty

Posted on: January 08 2021

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

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

Write it down

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

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

Regaining control

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

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‘I always wanted to be a pirate’

Posted on: January 06 2021

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

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

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

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

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

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

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

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

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

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

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

Posted on: January 05 2021

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

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

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

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

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

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

Finding purpose

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

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

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

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

Sarah Cook 3.jpgChallenge set

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

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

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

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

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

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

Sarah Cook 4.jpgIt worked

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

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

Countryside adventure

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

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

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

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

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

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

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

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

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