Myasthenia nearly killed me

In January 2019, Myasthenia nearly killed me, and one day, it probably will. That's a bit dramatic. What I really mean is that as I grow older, the vulnerability I have is quite serious - Myasthenia Gravis. That's not likely to go away, so it's something I need to be able to manage and live with. But to begin where it started for me, rather odd and inexplicable things had begun to happen to me over the Christmas period of 2018. My right eyelid began to droop. A day later I found that I unaccountably could not chew my food, and had difficulty swallowing.

Very suddenly, over the next two days, I found I had developed double vision, and rapidly after that, I could not read. I found that my arm muscles suddenly stopped working; I could not raise them to put on or take off a shirt, pants, trousers or any article of clothing. I had insufficient arm or leg strength to walk without a great struggle more than five yards. One night, I had a nightmare, haunted by nightmares, helpless, vulnerable to attack, the attack of the virus. The image was as if I was being attacked by a demon king, all powerful, ready to sweep me away into death.

In little over ten days I had changed dramatically from an elderly person who was recovering pretty well from two broken hips in the Spring of 2017, to someone who could not function at all, essentially a bed-ridden invalid.

My GP gave me an emergency referral to Kings College Hospital outpatients, which in turn immediately admitted me to acute intensive inpatient care, where I was given the diagnosis of Myasthenia Gravis. Once there and in this already gravely weakened state, I contracted a really severe flu; I felt I was fighting for my life, had really to hang on in there. I felt exhausted, confused, totally bewildered, down and out.

I felt I was in a life and death struggle, indeed I was. One night, I had a nightmare. I felt woozy, weak and helpless, scared and ready to die. The dream was of a demon king, amassing his forces to overwhelm me and take me away to a place from which I would never return.

In the morning, I did wake up, wet with sweat, shivering and alone. I could scarcely believe I was alive. But I was, weak, feeble, hardly able to walk, dressed in a standard issue hospital gown. Gradually, day merged into day. The hospital routine began to take over, focused on meals, good bad and indifferent, mostly the latter! There was no treatment as such, no vaccine. My vital signs were being monitored, three or four times a day, blood oxygenation levels very low. I'd constantly thank nursing staff, who'd respond, 'just doing my job'. Which of course, they were. What I didn't realise at the time was that they themselves were just as much at risk, more so in fact. It was recognised that Covid_19 was an air born infection, and every time a patient coughed, staff must have flinched and shuddered, themselves subject to infection.

Fortunately, I found that the medication I was taking was beginning to work, and that a lot of the active symptoms like my eyelids drooping, inability to chew my food, or swallow, or to move my arms or legs, began to improve.

Throughout March, things steadily got better and I was hoping that I would be able to recover much of the way of life I had lost so dramatically, only to have a further quite serious relapse in April.

This required a further series of antibiotics; when the chest infection I had contracted cleared up, I was left with dramatic and continuous exhaustion. Although I had no active symptoms, I was in bed resting much of the time. I had retired six months previously, and had dreams of having a full and active retirement. Nothing I had previously taken for granted such as my quality of life, my links and relationships to family and friends, my prospects of a relatively stable and healthy older age, all this has been transformed fundamentally.

Taking a difficult condition for granted is never possible. Without wanting to demonise it, it can strike out at me with a vengeance, leaving me completely flattened. This is what happened to me in late August 2024. With inevitable ups and downs, I was able to function relatively normally for seven or eight years. I was seeing friends and family, pursuing long term interests and hobbies like Yoga and Tai Chi and Chi Kung. Grace was there beside me, helping to make my life bearable and enjoyable. To use the time-honoured phrase, 'life wasn't too bad'; in fact, it was pretty good!

But August 2024 changed all that, It brought back traumatic memories of when I had first developed Myasthenia Gravis, how helpless to control my own body, how difficult it was to regard hospital as anything other than anxiety and trepidation. I was consumed by memories of how my life had fallen apart.

It set me an enormous challenges in terms of my sense of self and identity. The pressure to act and respond with self-pity and depression: ‘poor me’ – is enormous. Equally, the traditional British custom of stiff upper lip and soldier on stoically seems inadequate, because it can easily equate to a denial of the problem.

I feel that to talk about ‘me’ to others is useful, but can, quite easily, bore people, and I don't want to be part of an elderly person conversation where one exchange 'how is your leg/knee/ Myasthenia conversations. There's a life to be led out there, and I want to lead it.

So, for me the challenge has been to find some kind of ‘golden mean’ where I avoid both not talking about it at all, or talking about it too much! In addition, for me as a spiritual person, if there is to be a way forward and to come to terms with Myasthenia constructively, I have to find an approach which has a spiritual, and realistically positive dimension. I had started going to church, up the hill at St Catherine's Hatcham after I retired. This was in part pragmatic, and I had gone off and on over the years. But then I listened listening to the sermons and finding much to enjoy and reflect on, much meaning. So I began a developing and enriching relationship with my local church.

In one of the sermons, our Vicar took as the subject of her sermon. the unnamed man in the parable which occurs in St John's gospel, chapter 5, and took place near the 'Sheep Gate', in Jerusalem, close to the pool called Bethzatha. The gospel story recounts how this man had been paralysed for thirty eight years. He could never get into the healing waters of the pool in time so was unable at any stage to immerse himself in the healing waters. Jesus asked him whether he wanted to be healed, which he did. " Then Jesus said to him: "Get up! Pick up your mat and walk. At once, the man was cured, he picked up his mat, and walked."

Why did this parable have such an impact upon me? To begin with I felt I had been struck down and paralysed in a deeply alarming manner. In my case, I had recovered through medical care and the love of my wife. But it did feel like a miracle, albeit a modern miracle of science and medicine.

What this paralyzed man in the story must also have had however, is something quite remarkable: the quality of hope undimmed after a lifetime of disappointment. I do not think too many miracles of this nature happen in these modern times of the twenty first century, but the quality of hope is just as important. It sets out an essential element of the human condition.

The truth is that the central feature of our life on earth, is that we all, whatever our age, or background or condition, whether we have one of the modern scourges such as the cancers, my condition Myasthenia, or are perfectly healthy until a healthy old age, we all as the 23rd psalm says, ‘walk through the valley of the shadow of death’. And for all of us, death is our final destination. But fear of the living death of Myasthenia has been banished; it is no more, Thank God.

The Lord is my shepherd: I shall not want. He maketh me to lie down in green pastures; He leadeth me beside the still waters. He restoreth my soul; He leadeth me in the paths of righteousness for His name’s sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil: For Thou art with me; Thy rod and Thy staff they comfort me. Thou preparest a table before me, in the presence of mine enemies; My cup runneth over. Surely goodness and mercy shall follow me all the days of my life, and I will dwell in the house of the Lord for ever.

Nobody can change what has happened in the past, but with hope in our hearts, we can all change our approach to events in the future; to travel with hope is much better than to simply to arrive at an unknown destination.

A few weeks ago, I had another acute episode. I had felt for several weeks that I wasn't well, Myasthenically speaking. I was more tired than usual, was less mobile, and a bit more grumpy! I was sufficiently concerned to go to my local hospital A & E, and ask them to check out my symptoms.

This time it's worked out very differently

Understanding Myasthenia: Do I control Myasthenia or does it control me?

I have to acknowledge to begin with that Myasthenia, like any other chronic health condition, is essentially unmanageable in the sense that it is caused by an ongoing, and persistent physiological and bio-chemical bodily dysfunction, that is likely to persist for life.

In the case of Myasthenia, it is an auto-immune disease that causes muscle weakness and excessive muscle fatigue, in which the defect is in the immune system. A healthy, normally functioning immune system produces anti-bodies against bacteria and viruses; when the immune system goes wrong it can produce anti-bodies that attack this capacity for protection, by attacking the protein acetylcholine (AChR). This means that when the central nervous system signals muscle activation, the ability to receive this signal is much reduced or eliminated.

Medication

Nobody likes to take medication, I hate the stuff. But in my case like for many reluctant patients, I do, regularly and meticulously, not because I want to, but because it's essential for me to live a reasonably active life. Myyasthenia is one of the many ways in which the body can go wrong. Having googled and wiki'd my way through to a basic understanding, it would seem that Anti-cholinesterase drugs such as Pyridostigmine prevent the breakdown of acetylcholine and so improve the strength of signal activating the muscle. Its effects are short term, and hence medication has to be repeated every four hours, 24/7.

For a long while, I had to take Steroids such as Prednisolone suppress the immune system are taken on a daily basis, and in so doing limit the production of the dysfunctional anti-bodies which attack AChR. Unfortunately, by so doing they also reduce the efficacy of the immune system as a whole, which means that a person with Myasthenia also has to deal with a less effective immune system, and so is more prone to suffer from conditions such as osteoporosis and greater risk of colds and flu in the winter. My consultant, for these reasons, advised me to come off it if I could. I was surprised how difficult it was to come off it, and how long it took, but after about a year's effort, eventually I did.

Despite these disadvantages, ‘keeping on taking the tablets’ is certainly the first and most important thing for a person suffering from Myasthenia to do.

Yoga and Quigong

I have been interested in and practiced Yoga since my early teens and in Tai Chi and Chi Kung from my thirties onwards. What these practices have in common is that they all involve working with the body, in a slow concentrated way. They all promote flexibility and relaxation, and ensure physical movement to occur in the least effortful way possible. From the point of view of Myasthenia, my theory is that any approach which helps reduce muscular tension should thereby making my muscle control more efficient and less effortful, and therefore help to reduce the constant battle with exhaustion which is perhaps the major ongoing difficulty with dealing with myasthenia.

It is difficult to know whether Yoga and Tai Chi actually do help. The bottom line is perhaps that I am sure they do not actually hinder and if they do help 1% or whatever, then that is 1% better than not doing them at all! I have enjoyed these approaches all my life, and the arrival of myasthenia in my life has given me a very good reason to practice them all the more diligently, and at a deeper level.

Doing my research on my disease, I've found that Myasthenia depletes the effectiveness of the body though disabling the muscular fascia from passing messages from brain to the body’s muscles. Muscular fascia is the layer of connective tissue underlying the skin through which the central nervous system sends messages for a particular muscle group to move in a particular way.

Vleeming (2011) states ‘fascia is your soft skeleton. It is a flexible, sturdy substance that surrounds and penetrates every muscle, coats every bone, covers every organ, and envelops every nerve. Fascia keeps everything separate yet interconnected at the same time”. Superficial fascia lies directly under the skin, separating the skin from the muscles, allowing for the two layers to slide with respect to each other. Deep fascia is a “deep, well organised fibrous layer that covers the muscles…with the innermost aspect peeling away to form a discrete pocket around each muscle, and muscle groups”. It is in this layer that the brain communicates directly to the muscles. It would seem therefore that it is the deep fascia which is particularly crucial for Myasthenia, in that it is in this fascial layer that the Central Nervous System connects with a particular muscle group and in which its communication across the synaptic junction is impeded.

My theory is that anything I can do in facilitating and easing communication between the brain and my muscles may help my illness. I have experimented with receiving deep tissue massage which acts directly on the muscle fascia and reduces tension there. Again, it is difficult to know so far how much it has actually improved my condition but it is actually quite enjoyable and doesn’t seem to be doing any harm!

Reflection

In the ICU ward, they carried out comparative blood tests and concluded that I had Covid19. I was put on high volumes of oxygen, and intravenous anti-biotics to manage my lung infection. To my shame and great regret, I was projectile coughing and sneezing on staff. I remember that one staff member ‘lost it’ with me and told me point blank that I was putting her life at risk. She was right. Try as I might though, in those early days, I could not help it. I still felt I was in the full grip of the virus.

Once in hospital, my blood oxygenation levels were regularly checked. They were extremely low, and accordingly I had to receive a constant flow of oxygen to boost my blood saturation levels. Over the ensuing weeks, I continued to suffer from breathlessness, a lung infection, profound exhaustion, bodily weakness and lack of balance.

I had a general feeling of being all used up and expended. It was very difficult not to feel depressed and hopeless. I was still very weak, and I could sense how deeply inside my lungs the virus had reached. I did not know to what extent my lungs might recover, or whether they would be permanently damaged. I had no idea how I was going to get out of this. But one way or another, I was going to try all the time, every second of every day, no matter what.

Something that I still grapple with is why I survived and so many people in the UK and round the world died. At the time of writing in mid-summer 2021, there have been around 200 million Covid cases and over four million mortalities. In the UK alone there have been so far nearly six million cases and over 130,000 deaths.

So why did I survive, when so many didn’t? Why me? There’s nothing special about me, whilst many of those who have died were I am sure very special indeed. The only thing I can think of is that I have found that throughout my life, whatever happens to me, almost ruthlessly, I stay positive. I fight to remain hopeful, that if I really do dig inside myself as deep as I can, I have the best chance of ensuring that whatever difficult or trying things are happening in my life, things will get better. But doesn’t everybody stay positive, fight to survive? Of course they do. Maybe this is what is called the survival instinct. I think everybody has it.

So many people who were living a full life, with the full support of family and friends, who had fought the disease with all their might, still died of it. I have to accept that my survival is just a mystery, especially since I wasn’t in very good shape. I was seventy-five years old, and within a two-year period had broken both my hips, and developed a severe disability called Myasthenia Gravis, a major symptom of which is profound exhaustion coupled with muscular weakness and poor coordination. Fortunately, it can be well controlled by medication.

At the personal level, the only answer I could give to myself, was to be as grateful every single day, and be as thankful as I can be for this and every day. I think it was this sense of survival and gratitude that propelled me forward. I tried then, and try now, to take a step forwards every day, however small.

Becoming Calmer

My state of mind gradually returned to something resembling peace and tranquillity.

How was I to get out from this emotional roller-coaster of exhaustion and irritability?

Becoming calmer was for me the first priority and going some way towards achieving it perhaps my first step towards recovery. I kept on plugging away at my own spiritual practice. Gradually, it began to have an effect on me, and my state of mind gradually returned to something resembling peace and tranquillity; It had taken a huge effort.

Gradually our relationship returned more akin to our more usual state of closeness and harmony. We had gone through so much, but mutual exhaustion from Covid-19 had accentuated our differences and separateness. Gradually, we were able to recover our sense of sharing, deep communication, love and friendship between us. She is my life blood. I could not before, and cannot after, imagine my life without her; but for a while, it felt like we were throwing it away.

If prayer was my first resort in recovering a sense of calmness and peace of mind, this was strengthened and deepened by my other spiritual practices of Yoga, Chi Kung and Tai Chi. So far as Chi King is concerned, I have practiced an approach called the six healing sounds, since my twenties. Reconnecting with it now was difficult as my concentration and attention levels were very low to begin with, but I persevered.

This form of Chi Kung contains a few slow movements of the whole body, similar to Tai Chi, with fewer movements involved, but practiced with full attention to the flow of the breath, and visualising an ‘inner smile’.

I was also attempting to re-establish my yoga practice which I had been doing since I was a teenager. I was deeply dismayed to find how weak I was and how poor my balance. My back was very stiff and I could transition between my different postures or asanas with great difficulty. I found my lungs and consequently breathing, which had been attacked so fiercely by Covid-19, was still a problem. My breathing had become very shallow, and I was still hearing a rasp in my chest. I very easily got twitches and strains in my back which was very frustrating as it meant I had simply to rest for a while until my back was pain-free again.

Gradually my back became more resilient and I could practice more fluently. However, I was still having trouble with breathlessness, and my chest was wheezing constantly. I resorted to a form of yoga called Pranayama, which focuses on strengthening the lungs through enhancing the flow of the breath. Pranayama emphasises full inhalation and full exhalation, through a vast repertoire of breathing exercises. It was exactly what I needed when I had been inactive for so long, with my lungs compromised through the impact of the virus. I had made a start. Gradually I have become less bothered by breathlessness. In order to help me monitor my levels of oxygenation, I acquired online a blood oxygenation monitor. These started off at well below 90% but over a year later now average around 96/97%.

Another vital element in my physical reconditioning was a Japanese form of whole-body massage called Shiatzu. This is usually performed by a Shiatzu practitioner, but there is a more limited but still useful form of it which one can practice on oneself. Because of the ongoing challenge I have to face every day with Myasthenia Gravis, this form of self-healing has become an indispensable part of my daily routine. I think it has played an important part in enhancing the inter-connectedness of my ligaments, muscle tone and balance.

All these physical and spiritual disciplines take time, usually about ninety minutes a day at least. But given my pre-existing condition of Myasthenia Gravis, they are essential to keep me going.

Back Home

When I was finally discharged after about a month, I felt suddenly utterly on my own. From being surrounded by the loving care and attention of all the NHS staff, that security blanket of continual care and close monitoring had disappeared overnight, and it was just the three of us at home on our own. When I had broken both my hips eighteen months previously, there had been a programme of follow up and community support which helped substantially to aid my recovery. None of this was initially in place for aftercare for Covid-19. This was a new disease, ferocious in its impact upon individuals, their families and the services themselves. So initially, there was nothing. A year on, the situation is very different. Many hospitals including my own in South East London, now have extensive follow up programmes.

The first steps

If I was in shock, then so was my wife. She had had received a telephone consultation from a hospital consultant who thought it likely she had Covid-19 too, but not requiring emergency hospital admission. So, we had both had Covid-19; probably our daughter had had it too, in that she was experiencing one of the key symptoms, the disappearance of her sense of smell and taste.

We were a household ravaged with Covid-19 and its consequences... Immediately after discharge back home, it was a real struggle, both because of her own exhaustion, and mine. I was actually quite irritable, snappy and demanding towards her. In these early weeks of my return back home, I don’t think I really appreciated how exhausted she herself was; initially I had just realised that I was. Paradoxically, I was effusively grateful towards her all the time. The first time she made my breakfast favourite, scrambled egg on toast with smoked salmon, I burst into tears of gratitude. She was nevertheless, physically weak, and emotionally traumatised by her own experience of it. Yet suddenly, she had to take on nursing me, whilst still struggling to recover herself.

I felt I was an intolerable burden on her, at a time when she herself was so exhausted. It was vital that somehow or another, I had to find a way out, to make progress. I could not continue this emotional roller coaster of highs and lows: it was exhausting both of us. I decided to return as fast as I could to my own form of spirituality, with the hope that this would at least, hopefully, calm me down. I had for many decades been a ‘part-time Christian’, somewhat half-hearted in that I would rarely go to church. Also, I had alongside that since young practiced Yoga and a form of Taoist meditation called Chi Kung: my own idiosyncratic spiritual practice. I decided to renew all this as much as I could, so far as my limited energy allowed. So far as prayer is concerned, I recited the Lord’s prayer, many times, as deeply and intensely as I could, as a kind of mantra.

At the time, it felt as if I, indeed the whole Covid-stricken world, was in a mental and spiritual desert. I started reciting the 23rd psalm, again as a kind of mantra, seeking respite from its poetry and in its evocation of the good shepherd, who I hoped was, at some level, still present. However, it felt to me that He had gone missing in action, as if he himself had succumbed to a vicious attack of this virus at the heart of the Covid pandemic. I am not a convinced ‘believer’; I am an agnostic tilting towards a belief or a hope that we are not entirely alone in the universe, but uncertain of the theological fine print. Do we have a ‘Good Shepherd’ who looks after us? I do not know for sure, but I hope so. This led me to write the following poem. 

The 23rd Psalm in the time of the Covid pandemic

The virus stalks us, walks beside us

Through the valley of the shadows of death,

Squeezing life from every breath.

Our fears grow ever nearer,

Like a huge dark remorseless blade,

Scything through the cornfield of our hopes and dreams.

We seem mere human leavings, scattered,

Abandoned and alone.

Yet in my inner landscape,

I lie down in green pastures beside still waters.

I hear the lapping of the waves of a great sea

Of peace, and love and beauty.

Yet I weep, and fear the evil all around me.

A shepherd guides this flock

Of frightened sheep,

Into a temporary haven,

Or at least, lulls us into unquiet sleep.

I do not wish to dream.

Nightmares beckon to claim me back

To those dark hidden regions

Where legions of haunted memories wrack.