When Life Gives You Lemons

Everywhere you look, we are being exhorted to exercise. All our friends seem to have Fitbits which proudly announce the thousands of steps they have taken today and conversations revolve around the latest cool class at the gym. This can make the less able among us feel somewhat left out.

I would dearly love to walk, cycle, swim and play tennis regularly as I used to do. In the past, my body did what I requested of it with only minimal protest. Though recovery was taking longer as I grew older, a walk into town or hours exploring a new city was (excuse the pun) taken in my stride.

Now I am very happy to manage a very short walk of five or ten minutes. If I want to get back, I’ll have to rest in between. Having temporarily lost (and regained) the use of my legs, I feel very privileged to be able to walk at all. I know far too many folks who are denied that luxury.

So what should we do? Exercise is not just about killer abs and athletic prowess. It is about ensuring that the complex mechanism that is our body runs to its best performance possible.

Exercise is good for you

This should not come as a surprise to anyone, but what is staggering is the extent to which it can transform our lives. According to the NHS, exercise can reduce the incidence of heart disease, stroke, type 2 diabetes and cancer by up to 50%, which is, I am quite sure, significantly more effective than any number of medications. Indeed:

“If exercise were a pill, it would be one of the most cost-effective drugs ever invented.”

Dr Nick Cavill, a health promotion consultant.

For those of us already tackling one chronic medical condition, it is especially important that we do not add another to our already heavy burden. Unfortunately, having a illness such as MS is going to make it even more likely that we acquire another, since for many of us, mobility is compromised. However, this doesn’t need to be the case. But first, I want to convince you why making an effort to exercise is worthwhile.

Exercise is good for your mental as well as your physical health.

As countless studies have shown, exercise makes us feel better. It improves mood, self-esteem and increases our energy levels. It helps to combat stress and depression. How? I think this operates in a variety of ways. When we exercise in a group, we ensure that we get out and meet people and this alleviates feelings of isolation. When we have the satisfaction of achieving a goal, our self-esteem rises and our mood improves. And the more you exercise, paradoxically, the more energy you will have.

By helping us keep a healthy weight and a healthy appearance, it is also adding to our self-esteem. By enabling us to sleep better, it most certainly improves out mood. And happy, healthy people tend to evoke a more positive response from others, bolstering our sense of self-worth further. Exercise creates its own virtuous circles.

Through increasing our muscle and bone strength, we will be improving our ability to perform everyday tasks such as climbing stairs or hanging out the washing. Increasing our independence is always a good thing.

Exercise is good for the brain

What is not so well published is that exercise (through systems too complicated to explain here and that I only vaguely understand) will help with our cognitive ability. In addition to reducing the incidences of dementia and Alzheimer’s, it actually aids us in our thinking. And article in The Atlantic puts it this way,

While different studies arrive at moderately different conclusions via various routes, the recent research of dozens of scientists more often than not converges at a single intersection. And that consistently suggests that if you exercise, your brain will be fitter than if you don’t. This applies to the young, those in the prime of their days, and especially to the elderly.

https://www.theatlantic.com/health/archive/2014/10/walking-for-a-better-brain/380066/

Indeed, coupled with a healthy diet, exercise can inhibit the effects of ageing and the progression of neurological conditions :

…Exercise and dietary management appear as a  noninvasive and effective strategy to counteract neurological and cognitive disorders

The influence of Exercise on Cognitive Abilities
Fernando Gomez-Pinilla^1,* and Charles Hillman²

Careful exercise has no side-effects, yet can effectively slow the deterioration of the brain that accompanies MS and other neurological conditions. I shall look at this in greater detail in a future post, but for now, it is best to think of exercise as a work-out for your brain as well as your body.

How much exercise is enough?

Not everyone will be able to meet the guideline amounts now or perhaps ever, but what is important is doing as much as you are able for as long as you are able. Inactivity is actually bad for your health, so it is best to move a little and often. Personally, I try not to sit for more than one hour without getting up for a drink or just to stretch my back and legs. Tempting though it is to watch one more episode of a box set or check social media again, we should resist this and at least get up for a cup of tea.

Those who have recently suffered a relapse may well find any activity a real challenge. I understand that. When I first started to walk, it felt like someone sticking stakes up my kneecaps and into my thighs. The shortest distance was agony; leaving me exhausted and close to tears. But once I was assured by my physio that I was not actually doing myself any harm (though my body seemed to be telling me otherwise), I persevered. It took a while, but gradually, the pain retreated and I was able to go further and further. I won’t be running a marathon any time soon or indeed running at all, but being able to walk to the end of the garden, around a small supermarket and to the post box is certainly good enough for me.

Aiming higher

That said, I always believe in reaching for the very best that I can achieve. Government guidelines suggest that we aim for 150 minutes of moderately intensive exercise per week. This is quite a lot, but it does promise substantial gains.

Moderately intensive exercise means that we can talk while doing it but not sing. Intensive activity means you are using all your breath to breathe and talking normally would be impossible. Ideally, we want to mix in a little of each.

So what are the options open to the less able? I often read about the pleasures of running and street cycling etc for the disabled. Really? It may be true that some can enjoy these activities, but I suspect it is not for the majority. But there are other activities that suit just fine.

For my cardio exercise, I have a recumbent exercise bike and cycle 5km every morning while bopping along to my ‘Happy’ play list on my phone. I started at 1km and working up to my current distance took much less time than I imagined. I’m exhausted by the end of it and look forward to my shower, but I’m also elated. I’ve achieved something and feel better all day.

To help with my strength and balance, I do lying down yoga, ideally, twice a week. For this I have a CD, but you may prefer to use YouTube videos or a class. I was going to provide a link here, but there are too many options for seated yoga or MS yoga to choose from!

I also love Qi Gong and have given you a little taster here with Lee Holden who is a clear and friendly instructor.

Swimming is a good option for many as is gentle walking. It really doesn’t matter what you do as long as you enjoy it and can incorporate it into your daily lives. Short and regular is better than an exhausting, lengthy session followed by inaction.

We may be less able, but we are seldom unable and until we have that excuse, let’s push to achieve our optimum fitness. Your body will thank you for it.

A word of caution

Before you begin, it is advisable to consult your with your health professionals to ensure that any exercise routine you embark upon is suitable for you.

Writing about nutrition is one thing; acting upon it another. So I have decided to devote this week’s post to recipes that require the minimum of culinary skill and are manageable on even the most fatigue-plagued days. Since shopping with MS is always a trial, all the ingredients are available at any supermarket.

Butternut and Ginger Soup

Soup is my default choice for meals: easy to prepare, easy to make in bulk for multiple servings and packed with delicious vegetables.

All my soups follow a basic formula. Dry fry a chopped onion, add vegetables of choice, add vegetable stock, bring to the boil and then let the residual heat cook it through. The variations are endless – from using different flavoured stock (I love mushroom) and adding rice or pulses. Where possible, use vegetables that are in season and don’t be afraid to try new flavour pairings. With soup, the only way to fail is to open a tin!

Here’s one of my favourites. It’s perfect for the autumn season and smart enough to serve at a dinner party.

Ingredients
1 large butternut squash
A little olive oil and pinch of salt
1 medium onion – chopped
1 inch / 2 cm of fresh ginger peeled and chopped fine
2 mugs/ 600 ml of water
1.5 teaspoons of vegetable stock powder

Method
Preheat your oven to 180 C/ 350 F
Scrub the butternut squash. Cut it in half and scoop out the seeds and throw them away. Brush/rub the exposed flesh with a little olive oil and a pinch of salt.
Place on a baking tray, skin-side down. Bake in the oven for 30-35 minutes until the squash is soft in the middle and caramelised at the edges.
While it is baking, dry fry your onion and ginger in a large, heavy based pot. (Cook the onion and ginger slowly, stirring all the time. When it starts to catch, add a splash of water to prevent it sticking.)
When the squash is cooked and cool enough to handle, cut into generous chunks and add to the pot. (There is no need to remove the skin.)
Add two mugs of water and 1.5 teaspoons of vegetable stock and bring to the boil. Then remove from the heat and allow to continue ‘cooking’ off the hob.
When cool enough, pour into a blender and pulse until smooth.
Return to the pot, heat thoroughly and adjust seasoning. You may want to add more water at this stage to get the consistency you like.

Serve with a sprinkle of seeds and crusty bread.

Enough for 4-6 servings

Hey presto! pesto

Once I discovered how easy it was to make home made pesto (and how much more delicious it was), I decided to make my own. This can be done in the traditional way with basil or it is equally good when made with parsley or rocket.

I tend to use cashew nuts rather then pine nuts, as they are rather more economical, but both give a delicious and creamy taste. If you are feeling adventurous, walnuts and parsley make a charming combination.

Ingredients
1 small pot of basil (washed and stripped of leaves)
60g / 2 oz cashew nuts
7 tablespoons of olive oil
1 small clove of garlic – peeled and chopped
0.25 teaspoon of salt
black pepper

Method
Start by cooking your pasta as per instructions on the packet. This recipe makes enough pesto for two generous servings, so if you are making more pasta, just double it up!
Place all your ingredients in a food processor and blitz until they make a gritty past. Adjust seasonings and then stir into freshly cooked and drained pasta.
Serve with garlic bread (made with olive oil) and a crisp salad.

Toasted Sesame and Chocolate Power Balls

There are a number of these power balls on the market and often at rather eye-watering prices. It’s true that the ingredients are not cheap; however, my recipe will produce 14 plump balls and cost around 50p each to make. For ease of measuring, I have used cups here. (If you don’t have American measuring cups, a standard sized tumbler will do.)

Ingredients
1/4 cup of sesame seeds
3/4 cup of almonds – roughly chopped
1/4 cup of oats
12 Medjool dates (don’t use regular ones – they are not juicy enough)
2 tablespoons almond butter
1 dessert spoon of cocoa powder
small pinch of salt

Method
Sprinkle the sesame seeds in a single layer across a large frying pan. Apply heat and toast for a few minutes. When the seeds start to pop like popcorn – they’re done!
Tip the seeds into a bowl for later.
Now, gently toast the almonds and oats. Remove from the heat.
Place the dates, almond butter, cocoa powder and salt in a food processor and whizz to combine. Add the toasted almonds and oats and whizz again until they form a well-blended, sticky dough.
Lift out teaspoon-sized portions of the dough and roll in your hands to form a ball. Roll the ball in the toasted sesame seeds and lay on grease-proof paper.
Continue until all the dough is used up then store them in an airtight container in the fridge. (Though you may feel the need to sample one beforehand.)
They will keep in the fridge for at least a week.

I hope that these recipes show how it is possible to follow a healthy diet without compromising on taste.

I would be lying if I said the transition from my old diet to the new one was entirely easy. There were countless times when I wanted to rush around Waitrose on a Friday evening and pick up a ready meal or order fish and chips to eat on the seafront on a summer’s evening. But (for the most part) I resisted and the longer I pursued it, the easier it got . Being a total foodie is definitely an advantage, as I love discovering new flavours and am fascinated by the chemistry of cooking.

My husband has enjoyed our culinary adventures too and four years on, we wouldn’t eat any other way!

When my husband first showed me the OMS diet, I confess that I laughed. Really? I was going to go on that diet – for life? I threw away the piece of paper and tried to dismiss it as just one more fad that would do nothing at all except make me feel very grumpy at missing all my favourite foods.

Then the friend who introduced me to the Overcoming Multiple Sclerosis programme, turned up and promoted it too. Frustratingly, he looked ridiculously healthy ; a sort of OMS poster child. This gave me pause. After all, there was nothing that I could fault the diet on regarding healthy eating principles – it embraced all the current guidelines.

Sceptical but willing to consider anything that might improve my situation, I went ahead and checked out the OMS website on diet and read the book very carefully. To my horror, I discovered that the very thing that formed the basis of almost all my meals (dairy) was the very thing that was making my MS worse!

It seemed that certain fats contributed to the disease and others mitigated it. The evidence supporting this theory was incontrovertible. A neurologist by the name of Roy Swank had conducted a study of his patients over thirty-four years and discovered that those following the diet had significantly better outcomes than those who did not. Indeed, those following a low-fat diet for five years reduced their relapse rate by a shocking 95%.

So why wasn’t anyone I spoke to – neurologists, MS nurses or doctors -talking about this? I was furious. Here was as close to a cure as anyone was going to get and all the healthcare professionals were keeping mum or worse, discouraging patients from trying the diet.

It is tempting to go down the conspiracy/big pharma route here and perhaps there is something to that too, but to be honest, I think that it is simply because these professionals think that it is too hard and that medication is a ‘safer’ option. (I tried the medication path, and for me, it was anything but.)

Eat your vegetables!

In truth, once you commit to the diet, it really isn’t difficult at all. If anything, my husband and I eat far better now than we ever have. Yes, I do have to make virtually everything from scratch and yes, I do spend a great deal of time thinking about food and recipes (when have I not?). However, the time I spend actually preparing and cooking meals is relatively short – about fifteen to thirty minutes plus cooking time. And for those of you who don’t quite believe it is possible to create a delicious meal from scratch in very little time, I’ll share some of my own recipes in the next blog.

So what does the diet entail? Well, for those of us with MS, it is a modified and updated version of Swank’s original diet. It is essentially low-fat vegan and fish with supplements of flax seed oil and seeds.

Eating a plant-based diet

Fortunately for me, vegan is the latest food trend and that makes this diet infinitely easier. Even a few years ago, the choices for alternatives to dairy milk were few and I always asked very tentatively for soya when ordering coffee or tea. Sometimes, I was successful and often had to pay a premium for the privilege. Now, however, I’m often given the choice of a variety of dairy alternatives and not seen as the dreaded ‘awkward customer’.

Supermarkets now all have a great selection of plant-based products. When my local Co-Op started stocking organic tofu, I knew that times were surely changing.

But our diet is not quite vegan. We need to watch our fat content and many vegan ready meals (and especially cheese) will not fit the bill. However, olive oil hummus, soya yogurt and fruit juice ice-lollies certainly do. And if you are not quite perfect one day? It won’t kill you. What is important to remember is that as far as possible to keep to the diet. The closer you stick to it, the better the outcomes.

The organic option

Ideally, we want to aim to eat as much fresh produce as possible and ideally organic. Expense, convenience and time factors may mean this is not always possible. But it is worth knowing that certain fruits and vegetables are more pesticide laden than others. For a complete and easy guide, look up: https://www.pan-uk.org/dirty-dozen-and-clean-fifteen/ By purchasing the organic version of those most contaminated, you can minimise your expense and maximise your health benefits. Many of us can grow some ourselves. My vegetable crops have had mixed results, but even this year after a long, dry summer, I have endless quantities of herbs and apples and pears from the garden. If you don’t fancy growing them yourself, all supermarkets have a good organic range with Sainsbury’s having by far the greatest selection.

By eating a wide variety of vegetables of various colours and adding herbs and seeds, you can maximise your nutritional intake as well as making dishes more appealing to the eye and the stomach!

Making sense of it all

This diet (as you have probably already realised) is rather complex. And the easiest way to explain it is through the OMS video below or through the website: https://overcomingms.org/recovery-program/diet

Fish

Not everyone is a fan of fish. I understand that. It is quite possible to follow the diet eating only plant based foods since essential oils are catered for. But eating fish does make life a great deal easier. Smoked mackerel, tinned or smoked salmon, tuna, sardines and anchovies require no preparation at all. Other fish, such a haddock and salmon steaks require the barest preparation and shortest cooking times. But with all fish, try to buy those fished responsibly and where possible, organic or wild.

Good Fat/Bad Fat

It seems that not all fats are created equal and for those with autoimmune diseases, it is best to avoid saturated and trans fats. These are fats that are solid at room temperature or highly processed fats. Even ‘healthy’ fats, if cooked above 180 degrees can become problematic.

Fatty foods, as anyone on a diet will tell you are, of course, the most delicious, but cutting them out does not require compromising on taste. I now dry fry (without fat) just about everything, or steam it or bake it in the oven with a drizzle of olive oil. And you can add oils after cooking if you want a little of that delicious buttery taste. Walnut oil is as close as I can get to butter and is utterly divine with corn on the cob and popcorn.

Good fats, polyunsaturated fats high in omega 3 such as fish and flax seed oil, actually help those with MS by actively suppressing inflammation, so I take the recommended dose (20-40 ml) of flax seed oil a day. I find it quite pleasant and happily swallow mine at breakfast and dinner. Others slosh it on salads or veggies after cooking. But whatever you do, don’t heat it!

So does it work?

Yes, is the simple answer. I’ve been on the diet for four years now (I just dived straight in once I was convinced and never looked back). I haven’t had any relapses and many of my more troublesome symptoms have diminished or disappeared altogether. In addition, despite not being able to do any cardio-vascular exercise until recently, at a recent heart check, I discovered that my heart was five years younger than my age – in other words, in great shape.

The diet also ensures that we keep our weight more stable. (Initially, you may lose a lot and then balance out at a healthy weight for you.) And keeping a healthy weight is good for us both physically and psychologically. In addition, it is likely to improve the health of your teeth, your hair and skin.

When I was in treatment for cancer, my husband looked up suitable diets and discovered that the one I was already on pretty much covered it and while writing this, I looked up the World Health Organisation guidelines. Like most other diets, they allow small amounts of lean meats, but once again a serious restriction of saturated fats, trans fats and processed foods is recommended. And by avoiding highly processed foods, you are likely to avoid excess sugar and salt.

So I cannot help but encourage everyone to try to increase their intake of fruit and vegetables (five is seriously at the low end), decrease their intake of fats and enjoy a much healthier life. Bon appetit!

I should not be writing this. One is not supposed to proselytise about the joys of meditation and convert others to the cause. I know this and I understand why. Mindfulness and meditation are not the quick fixes that we read about in every magazine, nor are they a cure for all ills (at least not in the way most of us will interpret that); they are ancient, spiritual practices that take a lifetime to master. And even then, the prize of enlightenment is not guaranteed.

So why am I still typing? Well, because for me, at least, it has brought so much to my life that is good. It has provided me with a safe place to rest whilst the storm of the last few years has raged about me. It has guided me through some pretty scary waters and been a constant and steady source of light in the darkness. And no matter what happens to me in the future; its challenge and comfort will always be there.

I began meditating some time before my MS diagnosis, as a way of coping with chronic back pain and anxiety about my family. At first I did those five minute guided exercises from the internet and found it incredibly difficult. Because, as I discovered, mindfulness/meditation is not emptying the mind, as it is popularly conceived to be, but focusing it. Focusing on whatever it is that is your object and resisting the urge to make up a shopping list, daydream, worry etc.

As my practice and reading progressed, I also learned that it is about listening to yourself, accepting yourself and allowing thoughts to come and go without giving them too much attention. It is, in brief, about becoming present to the present moment.

With my MS diagnosis, things became a little more urgent. By then, I had been attending an excellent meditation class with a wonderful teacher, but travelling there was becoming difficult. So I had to find another way.

I had been recommended a rather heavy book that dealt with living with chronic health conditions and used mindfulness at its core. This was Jon Kabat-Zinn’s Full Catastrophe Living. It took me a while to read the 600 odd pages, but perhaps that was good preparation for what was to come.

His main recommendation was that you spend forty to forty-five minutes every day for eight weeks doing some form of meditation: body scan, yoga, breathing, etc and that this would seriously reboot your brain. I committed myself to doing it (I wasn’t capable of doing a lot else at the time!) and it certainly did something. No, I was not instantly enlightened, nor a better or superior person, but there was a shift in what I will call my consciousness and I have never looked at the world quite the same way since. Of course, any practice must be maintained, and though I confess to not always doing my forty-five minutes formal meditation, I aspire to doing a great deal of informal and some formal every day.

As with everything it seems, meditation practice is a paradox.

The goal of no goal

‘To bring calmness to the mind and body requires that at a certain point we be willing to let go of wanting anything at all to happen and accept things as they are and ourselves as we are with an open and receptive heart. This inner peace and acceptance lie at the heart of both health and wisdom.’ Jon Kabat-Zinn

This ‘inner peace and acceptance’ are at the core of any healing powers of meditation. As we sit in stillness, our minds get a break from the frantic stress of illness and as we learn to accept our situation, we also learn not to fight our struggling bodies, but to love them – imperfections and all. When we can do that, our frustrations melt away and our joy at simply being alive, at this moment, come to the fore.

Have I cracked this? No, of course not! I have good days and bad days. There are times when I am able to still my mind for only a few seconds and others when I happily drift in the womb of consciousness for a few minutes. But as quoted above, the outcome is not the point. The point is to turn up: to engage in the practice and keep bringing the mind back to the present. It is a reminder, over and over, that we live in the now and that memories of the past or fears of the future are no more substantial than a dream.

Despite recent media coverage of mental health issues, it remains the last taboo. Sex, cancer, ageing and even dying are no longer spoken of in hushed whispers, but anxiety, depression and mental incapacity? That’s another matter.

• 

‘Not waving but drowning’

For those diagnosed with a chronic illness, there is bound to be a psychological impact and yet it is one that is rarely addressed by health care professionals. My GP sweetly offered counselling for my husband (which at least showed an understanding that my partner’s life was going to change too) but unfortunately, not for me.

I’d been struggling with anxiety and depression for some time and had found partial relief through Cognitive Behaviour Therapy (Visit https://www.nhs.uk/conditions/cognitive-behavioural-therapy-cbt/ for a more in-depth explanation). But after my relapse, I definitely felt that more help was needed.

Through my reading, it became clear that one of the best ways of coping with illness is to remove the malaise (ill-ease) element. This would require a psychological remedy and it seemed that therapy, with a counsellor or a psychiatrist, was the best option.

For me, it was going to be a clearing out of all the old psychological baggage to make some space for coping with my new reality. Indeed, it would be vital to get me into the best mental health state to optimise my recovery. And if I were going to pursue meditation as a serious option (which I was), this elimination of the mind’s debris was also a prerequisite.

The Talking Cure

I was somewhat familiar with therapy, as I had been referred for bereavement counselling after the sudden death of my younger brother when he was just twenty-years-old. Its capacity to change the unbearable into the acceptable made me a believer in its efficacy.

So what does counselling entail? In contrast to a common misconception, it does not involve having a cosy chat with a sympathetic listener who comes up with solutions for all your problems. A good counsellor will guide you to work out your own issues. This will be achieved through one-to-one conversations and often ‘homework’ in the form of exercises or journal writing. It is most certainly not for the faint-hearted. At times, it is excruciatingly painful. I joked with my husband that my sessions were a form of ritual disembowelment. And there is a reason why no self-respecting counsellor would have a desk devoid of tissues.

But as with everything, the more you devote yourself to the process; the more you are willing to confront your demons, no matter how terrifying they feel, the more likely it is that you will achieve a positive outcome.

And if you are curious as to what counselling is actually like, I’d recommend reading Counselling for Toads: A Psychological Adventure by Robert de Board. He uses the characters from Wind in the Willows to give a brilliant, easily accessible description of the process.

Unfortunately, counselling is expensive, but those living in the UK should be able to ask for it for free through the NHS. (For further information, visit: https://www.nhs.uk/conditions/Counselling/.) Most people will be referred by their GP, but you can access services independently. I chose to go privately, and it was money well spent.

Choosing a counsellor

Like shoes, it’s important to get a good fit. Most counsellors will not expect you to book further sessions until you have shown that you are compatible. It is crucial that you are, as the Italians say, ‘sympatico’. If you do not get along, feel absolute trust and faith in your counsellor, say ‘thank you and good-bye’. There will be someone out there who is perfect for you.

For most of us, cost will also be an issue. Psychiatrists are more extensively trained and so more expensive. Counsellors and psychologists come in all sorts of price ranges with more not necessarily meaning better. What is important is that they are the right one for you and that you can afford to attend for as long as you need to. For the majority, a few months will suffice and your counsellor should be working towards making themselves redundant if they are doing their job properly.

For those who are not quite sure about the counselling route, but who think they might benefit from a little support, there are numerous other options: YouTube talks/Internet information, books, journal writing and even family and friends. Though, with the last it is important to remember that they are not trained to deal with mental health issues nor might they be comfortable with what you want to say. Friends and family can be great, but try not to overburden them, as they will have plenty in their own lives to deal with! Equally, try to resist the temptation to have them solve your problems – only you can do that.

Before you begin

If you think that counselling might be a help, talk to your GP. Sometimes, with MS, anxiety and depression have a physiological cause when nerve damage in the brain results in these symptoms. Certain drugs (especially steroids) used in the treatment of the disease can also have psychological side-effects. For more information on this, visit: https://www.mssociety.org.uk/about-ms/signs-and-symptoms/mental-health/causes-of-mental-health-problems And it may be that you need prescription drugs in the short term to help you to manage. Only you can decide the appropriate path.

But what is most important is recognising that ‘Mind, body, spirit’ is not simply something used to advertise spa treatments. Our minds and our bodies are one organism, not two, and neglecting one will only impact negatively on the other. We need to nourish and protect our whole body. And with stress contributing so heavily to MS and any other number of serious conditions, it’s about time we started talking.

When the future seems impossibly bleak, a natural response is to turn inwards and fall, unresisting, into the warm embrace of despair. We tell ourselves that no-one can possibly understand our situation. We assume that as this disease is incurable, no-one can help. We convince ourselves that there is nothing we can do.

And there is a certain seductiveness to this, because it absolves us of any responsibility. If all is lost before we even begin, then why bother? I confess that for a while, I took this attitude. In my more melodramatic moments, I convinced myself that my life was, in all but name, finished. All I had to do was wait. But at fifty-one, that wait could be a long one.

And then through the kind introduction of a mutual friend, came the perfect person to challenge my inertia. He had also recently been diagnosed with MS, though no-one could possibly have guessed it.

A Glimmer of Light

He arrived full of positive energy and good will. His excellent health and cheerful disposition was itself a tonic. The fact that he was still working and enjoying life in ways I had not dreamed possible piqued my curiosity. What did he know that I didn’t?

What he knew about was the Overcoming Multiple Sclerosis programme. He’d read the book, gone on a retreat and was following the life-style guidelines faithfully. If he was an example of what you could achieve, then this was certainly worth a look!

He gave me a copy of Overcoming Multiple Sclerosis and some life-affirming DVDs of people surmounting any number of impossible situations from infertility to advanced cancer. My outlook shifted: was it really true that no outcome was certain, that everything was possible? I was determined to find out. What, after all, did I have to lose?

I started with the DVDs, as they required little effort, then I began on the book.

With my less than optimal brain state, it took me quite a while, but what it promised was extraordinary. It would require a total life-edit and, at least initially, a tremendous amount of self-discipline, but anything that was going to help keep me out of a wheel-chair was surely worth pursuing.

It argued that by following a restricted (but not impossible) diet and making changes to daily living by including exercise and meditation, the progression of the disease could be slowed and in some cases reversed.

Since I am a terrible sceptic about all things medical, I was delighted to see that nothing passed muster without rigorous medical testing. And most of it just made sense.

In truth, there was nothing in the programme that was anything but life-enriching. It required no membership fee (in fact the book in the UK and Ireland is free on request); it required nothing of you except that you try and in return promised a great deal of support. There was an informative website, ambassadors who organised local meet-ups, learning days and retreats.

Here was what I had been craving most: people who understood; people who wanted to help and people who, most importantly, were going to give me some guidelines on what to do.

For me, there are four pillars of the OMS life-style: therapy, diet, exercise and meditation and I will cover each of these in detail in their own posts, but if you want to get ahead and read the full seven-step programme, I suggest you visit the website at : https://overcomingms.org

By embarking on the programme, I felt as though I had stepped out of the darkness and into the light. Of course, there were moments when I wavered and even despaired. But as time went on and my healing became ever more apparent, these moments of anguish became shorter and more infrequent. So join with me in making our best lives. Whatever it takes.

The Hero’s Journey

The hero’s journey is a tale as old as time. Homer knew it; Shakespeare made some of the world’s greatest literature out of it, and George Lucas transformed it into a multi-million dollar industry with his Star Wars movies.

Joseph Campbell, the great myth scholar, mapped this monomyth and gave it the title above.

The journey is simply a metaphor for life and how we face ‘the slings and arrows of outrageous fortune’ will determine whether we emerge a hero or a villain.

And if you are asking yourself what archetypal myth structures have to do with you, the answer is everything.

This ancient story-line is a ‘how to’ manual for life and if we know how to read it, and follow it, then we can make our lives meaningful and purposeful no matter what the situation.

A life compass

How to be a hero

When we conjure the idea of a hero, we tend to think of superhuman attributes of strength, wisdom and prowess. But we are thinking of the hero after they have completed their journey – not as they begin. Cast your mind back to the start of the tale and they are just like you and me: flawed, uncertain, hesitant or downright unwilling to engage. What will set them apart is the courage to set off on the adventure – face the unknown, ask for assistance and keep faith.

If you will bear with me, I’d like to sketch out my own journey and how I feel it fits this model for life. This blog is part of the adventure and if it is successful, I hope it will serve as a companion for your own odyssey.

The Everyday World

This is where it starts. In my pre-MS world, I was, until my children left home, a busy at-home mum, part-time teacher and volunteer. In all aspects of my life, I was someone who felt they were a productive member of society. I had value.

All this was to change, instantly and irrevocably , on the occasion of my last and most damaging relapse. It occurred at the end of a morning’s teaching. When I left the classroom, I had no idea that I was never going to be able to return.

The Call to Adventure

After days in hospital and endless tests, I was diagnosed with MS. Hurtling, Alice-like, down the rabbit hole, I entered a whole new world filled with canes, wheelchairs, bed rest and exhaustion.

Lying there, unable to use my legs, my self-image collapsed. Where I had been a fit, strong and capable woman, I was now an invalid. It was, quite frankly, terrifying.

Accepting the Call

This was the cross-roads and my choice was clear. Accept the call or recoil from it and in doing so seal my fate.

I chose to accept, though nothing in life had prepared me for this (despite what all those Shakespeare plays and fairy tales had tried to teach me). Could I prove that I could overcome adversity? I could only try.

Thanks to modern science and sheer good fortune, I was able to recover sensation in my legs, but I lost pretty much all my ability to function as a modern human. I slept for hours and swam through a fog of fatigue. My ability to concentrate was minimal and every task was a Herculean effort. Part of me wanted to lie down and succumb to what I had been told was an inevitable decline. Initially diagnosed with relapsing primary progressive MS the prognosis was dire: rapid slide into total disability and perhaps premature death.

I hung on to the consolation that I was not dead yet and if I could make my remaining years any better, I had an obligation to at least try. So each day, I would attempt to stay awake a little longer, write a few more emails, read more than a page. And each day, these tasks became microscopically easier until after six months, I could read a novel, type without more errors than correct words and walk without wanting to cry with pain.

Each tiny victory became the basis for the next effort. It turned out I had been misdiagnosed and that my MS was the less severe form of relapsing remitting. My future was much more hopeful and I sighed with relief that I had not succumbed to despair and inaction.

The Helpers

We all need help. In the first instance, it was nurses, doctors and medical professionals who enabled me to take my first baby steps in my new world. Out of hospital, I had to find my own.

For me, with my sons abroad, it came down to my husband and an army of caring, practical friends. But it also came from MS websites and programmes, physios, therapists and any number of kind souls who in some way smoothed my path.

The Ordeals

Living with MS – or any chronic disease – is to be constantly tested. Unlike our mythic heroes, we do not engage in our last battle and return home triumphant to our prize and happy ever after union. But we do get our reward – a sense of self-esteem built upon solid foundations.

Home

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Which leaves us with the penultimate stage: returning home with the knowledge to save others. Sounds ambitious? Well, it is. If, on our life-changing journey, we have acquired wisdom, compassion and courage, we are the very best equipped to heal our world.

The Quest

And this is our quest: to cope with affliction with grace and dignity and through our behaviour to inspire others to do likewise. We can do this quietly and discretely. We have much more power for good than we can possibly imagine. And if we fail to meet our goals? Well, there is always tomorrow.

So I ask you to join me in working towards being true alchemists: turning suffering into kindness, pain into the gold of compassion. Let us be the hero of our own unique story. Let us begin.

Everyone knows the saying, ‘When life gives you lemons, make lemonade’, well, life has donated a bumper crop to me over the last five years and I am doing my very best to transform them into something palatable.

It began in 2015 when I was diagnosed with MS following years of strange symptoms and multiple trips to the doctor.

Then, just over a year ago, I was diagnosed with triple negative breast cancer.

Was life trying to tell me something? Perhaps.

Under the circumstances, it might seem reasonable to assume that my time was effectively ‘up’. What, after all, did I have to look forward to? My MS is incurable and degenerative. And, having done the research, I knew just how extensively it would strip me of my physical and mental abilities, leaving me a shell of my former self.

My cancer was caught very early and my treatment started straight away, but the odds of survival were at best around 80% even after chemo and radiotherapy. This sounds good until you turn it around. One in five people in my situation won’t make it to ten years. I was fifty-four at diagnosis, so a pension no longer seemed something to worry about.

Depressing though this might seem, I do believe that life was trying to tell me something and not that there was no point in even trying any more. Perhaps it is simply my inner optimist speaking, but I genuinely feel that it was giving me an opportunity to reevaluate everything; to see that there is, in fact, another way to live, a way that, for however long I’ve got will be more fulfilling and more valuable than the one I’ve had to leave behind.

So join me in exploring how to make the best of life with chronic illness and specifically MS.

I shan’t be preaching at you, but I would like to share any and all the things I have found that make life easier or at least more bearable.

Real lemonade, like life, is bitter sweet, but no less delicious for it.

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