Christmas is over and the New Year has not yet begun. All the rush and excitement is finished and we are caught in the in-between of festivities. Yet we can cherish these days for the quiet and rest they provide. Free from obligations, we can lie in late and indulge our lassitude. This social limbo is not a penance but a privilege.
For those with chronic illness and deteriorating conditions; however, life can be a sort of limbo, but not of the positive kind. We exist in a sort of shadow land between that of good health before and the fear of the future to come – a sort permanent dusk. The bright day is over and all that awaits is darkness.
For a long time, I felt this way: waiting for the next relapse, the next diminishment of my abilities. And each day that I was spared was a bitter-sweet reprieve. As anyone waiting for a decision knows, relief that the worse has not yet happened is tempered by the increased anxiety that it might. In my case, it was the belief that it will. Degenerative diseases are not known to go backwards. So I had to make a decision. I could despair or I could learn to rest in the uncertainty.
I chose the latter.
It has taken many years and a great deal of reading, talking and contemplation, but I am beginning to feel at least a little more comfortable in this gentle dusk. How? By adopting two very helpful techniques. The first is to live in the present. (For anyone interested in a brilliant guide to this kind of meditation theory, I recommend Eckhart Tolle’s The Power of Now.) When you are able, even for a moment to live in the now, during that time, fears for the future melt away. As a bonus, life feels infinitely more beautiful and precious.
The second, I suppose, is acceptance. With the affluence and privilege we enjoy in the West, we often feel affronted when things don’t go the way we expect. Those in less fortunate parts of the world are all too aware that life goes awry, health is precarious, life difficult and as a consequence are far better equipped to deal with life’s unpleasant surprises. And we can learn from them. Adversity is not to be denied or feared but embraced as something that simply is.
I kicked against my diagnosis for a long time – I had such plans! I was angry at the universe, fate, my own body for being so pathetic and weak. Of course, none of this helped me one iota. If anything, it made things worse.
The Liminal Space
Dawn and dusk are known as liminal spaces – an in-between time; a transition from one state to another. The word is derived from the Latin for threshold, so this place of waiting becomes a doorway to a new state of being.
In anthropology, it refers to the middle stage of a rite of passage. At this point, the participant has embarked on their journey but has not made the transition that will take him/her to their destination and the status that accompanies it.
Most of us are uncomfortable within the in-between, the liminal, but they are places where we get an opportunity to stop and think. As we head towards the New Year, we can use this time to do a good life-edit rather than make up resolutions we will break before the month is out. If we can learn to rest in the dusk, in uncertainty, life will offer up any number of solutions.
These are thresholds we can chose to cross or hover around. If we cross, we may well have to navigate the night for a while, but at the end, there is the promise of dawn.
‘Twas the week before Christmas, And all through the house, There was baking and wrapping – but – No sign of a spouse.
Sound familiar? As the great day approaches, mothers, wives and daughters up and down the country will be frantically working to make everything perfect for the holidays. We have set our standards high and are aghast at how little time is left.
Since MS affects two to three times more women than men, and women play the predominant role in Christmas preparations (apologies to those men who play a greater part), I thought I would dedicate this post to making a happier, fairer Christmas.
This is a rather drastic one, but may be the most effective of all. In 1975, Icelandic women held a one day strike in the home and the workplace. It was called Women’s Day Off and 90% of Icelandic women participated in, well, doing nothing: no child care, no housework and no paid employment. The following year, a law was passed guaranteeing equal pay. Perhaps Christmas Day could be our ‘day off’? Perhaps for that one day, the men and the children would take care of everything. No present could beat that!
But, in truth, I love the preparations for Christmas, as I’m sure do most women. What we need, I feel, is simply to bring it back to something manageable, that everyone can enjoy and that everyone can participate in.
The Quakers don’t celebrate Christmas. Well, many do, but are not really supposed to. This is not because they are not Christian or spiritual, but rather because every day is cause for celebration and thanksgiving.
What can we learn from the Quakers to make our Christmas special? I think it is this: It is a day we have been given as a gift; a precious parcel of time to enjoy and use purposefully. To keep it simple – avoiding extravagance and waste and sharing our abundance with those less fortunate. Teaching our families this, we can lessen our burden and increase their appreciation.
For those who seek something a little more lively and colourful, churches at this time of year open their doors to believers and unbelievers alike. Carol concerts and special services allow us to reconnect with the spiritual side of Christmas. The financial cost is small, but the rewards great.
We need do nothing but attend, perhaps sing a little and take a quiet moment to reflect, or pray. Perhaps we might bring a gift to more needy children and help re-balance the commercialisation of this period.
Green Christmas
Deck the halls – with greens from the garden!
I confess that I am delighted that being green has now become trendy. In the past, showing concern about the environment was a social kiss of death. No more! So what can we do to make Christmas a little greener and, as a bonus, more affordable and inclusive?
One idea is to only use brown or regular paper to wrap presents as the commercial wrap cannot be recycled. I like to adorn mine with Washi Tape (colourful low-tack tape) and/or stamps and stencils. Young children can have hours of fun creating papers – supervised by their dads, of course. This is a low cost activity with a practical result. And let the kids get involved in wrapping too. With carols as background music, it can be a very special time indeed.
Deck the Halls – with holly, evergreens, berries, mistletoe – whatever you can easily gather from your garden or winter walks. You’ll need gardening gloves and good secateurs and permission to gather anything outside your own fences. Farmers markets and green grocers often stock lovely winter foliage and flowers. Nature is beautiful as it is, but if you have the urge, you can go to town with ribbons and arrangements. Don’t forget to let the rest of the family join in, though!
I am very fortunate to live in an area of outstanding beauty – but having travelled all over the UK, I can’t actually think of a place that is more than 20 miles from somewhere equally gorgeous. So take advantage of what is on offer in the countryside and get the whole family outside for a long walk after dinner. It will give you all a much needed breath of fresh air, unplug the kids from their devices and provide a relaxed time to talk or simply admire the view.
A family Christmas
If I’m honest, when the children were little (and even not so little) just before the Christmas dinner, you could find me shedding a few tears in the kitchen. Overworked, hot and exhausted, I could barely find the energy for the final step. And the fault was as much mine as the family’s. Looking super efficient, having all the plans and menus etc is somewhat disempowering for the other members of the family. I had fallen for the biggest lie of all: that mothers are responsible for everything and failure to provide the perfect Christmas was the ultimate disgrace. Like everyone else, I’d seen the magazines and Sunday supplements and heard of friends who annually sewed their table mats and matching napkins etc. If there was ever a time for female competition to reach its zenith – it was now.
Well, enough of that. I shan’t be making a complete ginger bread cityscape this year; I shan’t be sewing napkins or making Christmas cake. There are plenty of people who can do these things better than I can, and if I want something special, I shall buy it from one of the many excellent artists and artisans who are trying to earn a living from the same. I love making things and have made most of my cards and some of my presents – but this has been a joy and not a chore. The rule is: if you don’t want to do it, don’t.
Delegate! Think of it as empowering other family members. Christmas activities often fall along gender lines with the males doing the tree and fairy lights and all things technical. Perhaps use this opportunity to teach the girls to do the same and get the boys to help with icing and baking. One of my best Christmases was making a slightly wonky ginger bread castle (complete with Playmobile knights) with my son. Piping icing arrow slits was hilarious. And when other family members are asked to join in the with the fun stuff, they will be more willing to help with more mundane tasks such as peeling vegetables. With everyone in the kitchen and favourite drinks and snacks on hand, even this can become part of the festivities.
Okay, we won’t be winning The Great British Bake Off any time soon – but we did enjoy ourselves!
Keep it simple! Christmas is about spending time together as a family and sharing that most fundamental form of love – a shared meal. Christmas lunch should be special – but it doesn’t need to slavishly follow tradition or break the bank. Agree on what special foods you all love and make your own traditions. Having friends and family over? Well, ask them to contribute one of their favourites. This is normal in the US and I’m glad to see the idea catching on in the UK too. By lessening the load on the host, you will be increasing the pleasure for all.
Games and activities. Once the meal is over, resist the temptation to switch on the TV. Children seldom get the opportunity to play with busy parents, so don’t miss the chance now. Let the kids be the games masters and select and organise the entertainment. Mayhem will doubtless ensue, but hopefully, it will be of a happy kind and at the end, sitting down to a family movie will let everyone wind down and relax.
A perfect Christmas may be a noble ideal, but not a very realistic one-at least if you are me. But we can all achieve a memorable day where every member of the family plays an important part and is reminded that the true spirit of Christmas lies in giving. So I leave you for this year with the wish that you have a day filled with love and laughter. Merry Christmas!
There are few experiences more pleasurable than singing. And Christmas offers us endless opportunities to indulge. With weekly carol concerts and choirs in the street, how can we resist the desire to open our throats and ‘make a joyful noise’?
This post is an ode to song, to choirs and choral fellowship. You don’t have to be an Elvis or an Adele to enjoy singing. You don’t have to be physically able. You don’t have to be young. Singing is the most democratic of activities.
For me the answer is obvious, because it is enjoyable. Once a week, I go to choir and meet up with a collection of people who are warm, welcoming and enthusiastic about music. Further, it is the opportunity to achieve something as a group; to work together to create something beautiful – literally out of thin air.
Here is a space where we can express any range of emotions with absolute gusto. When we covered ‘This is me’ from The Greatest Showman, each of us found resonance with our own insecurities and imperfections. And together, we were empowered to chorus, ‘Look out ’cause here I come!’
Later, when we sang ‘Bring Him Home’ from Les Miserables, there were quite a few tears in the room from those whose loved ones were not coming home. Were the tears a source of embarrassment? Not at all. We all gave and received hugs and carried on. We found catharsis in the act of singing our grief and having it acknowledged both in the words of the song and by our friends.
One of the most acknowledged benefits of choir is that of creating friendships. There are numerous people I love in choir and some I meet outside the group, but one person particularly has been my companion and support throughout these difficult years. Is it likely I would have befriended a 75 year-old woman from the opposite end of town under any other circumstances? I doubt it. But choir brought us together.
For me, these Abba lyrics sum it up:
Who can live without it?
I ask in all honesty, what would life be?
Without a song or a dance, what are we?
Thank you for the music, Abba
Somewhat surprisingly, in addition to the personal enjoyment element, singing in a choir is physically and psychologically good for you. There has been extensive research in this area and far too much to write here – but these are some of the highlights.
Physical health Benefits
It helps your heart – improving ‘cardiovascular fitness’ and ‘improving lung function’ (Gresham.ac.uk) by making your lungs stronger and easing breathing difficulties . It also helps regulate your heart rate and lowers blood pressure. If you are suffering from a chronic condition, singing may well provide the work-out you need.
Surprisingly, it also boosts the immune system. It may not replace the flu shot, but is a painless way of keeping germs at bay.
There are many more benefits, but this one speaks for all of them. A 2008 Harvard study showed that singing in a choir increased life expectancy!
Psychological benefits
A no side-effect happy pill. When singing, the body releases endorphins which make you feel more cheerful, reduce stress and anxiety. The deep breathing involved only serves to strengthen these benefits.
Being a member of a choir enhances a sense of well-being and belonging
It allows us to express our creative side and if applicable, release our inner diva!
A resounding rendition of the Hallelujah Chorus will inevitably result in a sense of awe which in turn boosts empathy and generosity. Choir singing isn’t just good for you; it’s good for everyone.
Choosing a choir
The good news is that there is a choir out there for everyone. Near me, there are classical, gospel, church, contemporary and rock choirs. Many do a mixture of styles and the best way to see if they are for you is to attend a concert and see if they suit.
I’m a member of a community choir and it contains a mix of very experienced singers and those less confident. We are given sheet music if we ask for it, but most people learn from their CDs/Choir Player App. The results may not be perfect, though I think they are pretty good. Below is a charity video my choir made. I’ll let you judge for yourself.
My choir showing what a community choir can do!
And even if you decide a choir is not for you, I do encourage you to sing – if only in the shower.
As December sets in, the days begin to shorten ever more rapidly, compressing down to a mere eight hours of sunlight when the Earth tilts the furthest from the sun on the winter solstice.
With the weather often dismal, the skies an impenetrable grey, it seems as though dawn and dusk are interchangeable – a long, dull ache separating the night.
To combat this, almost all cultures have created winter festivals that celebrate light to combat the gloom and expel its accompanying sadness. Yet, this very insistence on jollity can itself be a burden for those who find this period of year a difficult one.
Christmas is presented as a time of family reunion, friendship and conviviality, but for many it will be a bitter-sweet reminder of those they have lost. My brother died when he was a young man and I have spent every Christmas since becoming a little unhinged (which fortunately my husband understands) until I have visited the cemetery and laid an evergreen wreath. This year, it will be for my father too. Blessed are those who will not be grieving someone this Christmas.
With the focus on parties and socialising, those suffering from isolation are isolated further. Harsh weather conditions make mobility even more of a mine-field and fragile health will cause many to stay indoors to avoid the risks of cold and flu. But in doing so, they will miss the tonic of friendship which fends off melancholy.
Unfortunately, depression will strike most of us at some point in our lives. Usually, we can shrug it off, but if it continues, we need to have the courage to ask for (and if appropriate) offer help. In certain instances, it is related to the weather. Seasonal Affective Disorder (SAD) is most common during the winter months and is worsened by staying inside. If your depression is seasonal, the NHS gives helpful information here: https://www.nhs.uk/conditions/seasonal-affective-disorder-sad/ If your depression has gone beyond what you feel able to cope with, contact your GP or an organisation such as The Samaritans https://www.samaritans.org/how-we-can-help/contact-samaritan/.
The great masters knew that the best way to perceive darkness was through the addition of light – that as a sort of optical yin and yang, they were inseparable from each other.
And this is the essence of this post. No-one’s life is composed of solely happy, carefree days any more than a year is filled with temperate, summer ones. Our days, like the weather, shift and change, fleeting as the clouds on the horizon. The assumption that because it is the Christmas season, we will be happy is as misconceived as it is dangerous.
We know very well that this is a period of real mental trial for many. If I have been a bit of a downer in this post, I apologise, but I didn’t want to go full swing into the Christmas period (which I love) without first giving voice to my concerns.
Dark days are not to be shunned and those who experience them outcast. They are reminders of the transitory nature of things and as such to be welcomed and acknowledged with the same grace as any other part of our lives.
So, if you are struggling at this time of year, please know that you are not alone. We just need to hold fast. Brighter days are coming.
As this is Thanksgiving weekend, I thought that an A-Z of gratitude would be in order. In the US, Thanksgiving is a time of reunions, excessive eating and American football, but here we can simply focus on the important bit.
Giving thanks – even when it feels like there is little to be thankful for.
I know that when life is really hard, it is difficult to find a way to show gratitude. Worse still is when people tell you to be grateful. The, ‘It could be worse…’ conversation that then goes on to recount some truly tragic experience someone is going through, does not help anyone. Those stories are often sad and there is no harm in showing empathy, but they are not our stories – and even more unlikely to be the speaker’s.
Recently, after my daughter-in-law told me about her father’s truly desperate childhood, I said that I felt bad complaining about my situation. She laughed and said, very wisely, that there are always those worse off and that in no way diminishes the difficulties I have had to face. She is definitely on my gratitude list.
After my big relapse and diagnosis, I confess I struggled to find much to be thankful for: the losses seemed too great and too irredeemable. The kindness of hospital staff, friends and my husband kept me from despair and I realised that contrary to current social tendencies to moan about what we lack, I would start from the ground up and be grateful for whatever I had. My experiences with cancer have only reinforced this. There is nothing like having to come to terms with the possibility of premature death to make you happy to draw breath each morning.
So, starting from the basis of, I am alive, I worked with that. I am alive and have all my limbs – even if some are not cooperating; I am alive and have an amazing body that breathes and pumps blood and repairs itself without my even noticing. Jon Kabat-Zinn pointed out rather brilliantly that if you are alive, there is more right with you than wrong. I think that Nina Simone expresses this perfectly in her song ‘Ain’t Got No, I Got Life’. There is much that she doesn’t have, but what she does is the miraculous part. If I had an anthem for those first frightening weeks it was this. I’ll share the final verse.
I got my arms, got my hands / Got my fingers, got my legs Got my feet, got my toes/ Got my liver/ Got my blood I’ve got life/ I’ve got my freedom/ Ohhh/ I’ve got life!
Nina Simone, ‘Ain’t Got No, I Got Life’
A-Z of Gratitude
My husband came across this while listening to a podcast and passed it on to me. I later discovered that it is a popular activity at Thanksgiving where you go around the table and think of something to be thankful for beginning with the assigned letter. This is a game that I recommend everyone play.
For me, I like to practice this before I go to sleep (it is wonderfully soporific!) Here’s the first few letters of my A-Z:
A – the apple tree in the garden that maps the seasons B – Baby Sofia – my granddaughter C – choir – my happy place D – The duvet. What is more delightful than the warm hug of a duvet on a winter night?
I continue on through the alphabet until I drop off to sleep with a little smile playing on my lips. On bad nights, I may do two or even three rounds of the alphabet thinking of different things each time. What better way to fall into oblivion than with the realisation that you have 26 (52? 84?) things to be grateful for!
In addition to being an aid to insomnia, there are significant mental health benefits too. Studies have shown that deliberately noting those things we should be grateful for will make life better. According to Psychology Today, ‘Expressing gratitude even when nothing especially gratefulness-triggering is going on can increase your well-being and help regulate stress,’ Andrea Brandt.
Pass it on
Once we get into the habit of feeling gratitude, we can expand the experience to thanking others for their contribution to our happiness. A short thank you note sincerely written, a card or an email, can bring a disproportionate amount of delight to the recipient. Whilst it is true that misery, like a cold, is contagious, so too is the reverse. Those who genuinely feel grateful for whatever blessings they have tend to bring the same attitude to others. A smile evokes a smile; joy sparks joy.
And don’t be afraid to fake it. Bizarrely, smiling from pleasure or smiling because you force your mouth into that position is interpreted the same way by the brain and provides the same positive outcomes. So break out that grin!
There is no doubt that Thanksgiving is a wonderful holiday, but it seems foolish to give thanks only once a year. By making this a daily habit, you will make your world a place for which you have a deep and abiding sense of gratitude. And as a bonus, you will help others feel the same way too.
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.
Few things improve our mood better than a good swim Photo by Haley Phelps on Unsplash
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.
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
Warming butternut and ginger soup with toasted seeds
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.
Hey presto! pesto – a quick and delicious meal
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.
Toasted sesame and chocolate power balls – perfect for satisfying sweet cravings and giving an energy boost when you need it.
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.)
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!
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
Jon Kabat-Zinn’s insightful book
‘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.
