When Life Gives You Lemons

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.

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‘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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