Category Archives: ME-CFS

The sounds of silence

In the months since I last wrote in my blog, I have spent a considerable amount of time in solitude. I’ve had to. An exacerbation of ME/CFS symptoms including migraine, dizziness, nausea and brain fog have made it essential. For much of January and February, I was rarely far from my bed. I struggled with any form of socialising and spent most of my days entirely alone. When my husband was home in the evenings, our conversation was reduced largely to the bare necessities.

Since then, I have seen a slow improvement, but have also weathered the relentless pain and broken nights that have accompanied the onset of a frozen shoulder. As a result, my blog has remained silent.

Silence. I’ve written about it before: https://ripplesinthewind.wordpress.com/2014/07/02/silence/

In that post, I made the point that silence is not empty. In fact, if we stop to listen to them, the sounds of silence can speak much louder than words because words so often get lost, falling over themselves in a cacophony of human jabber that communicates little and hence, paradoxically, is silent.

My words like silent raindrops fell
And echoed in the wells of silence

(Paul Simon, ‘The Sounds of Silence’)

We need true silence in order to distinguish one voice from another and hear what it has to say. Yet prolonged silence can be difficult precisely because of this. It compels us to hear voices that perhaps we would prefer not to hear. With only ourselves for company, we become subject to all the fears and distortions that can be dreamed up by the human mind, together with the worst (and best) manifestations of our own human nature.

Back in January, I picked up a book that had been left on my bookshelf a couple of years previously by a friend. I picked it up primarily because I was bored. I hadn’t the energy to write, draw or communicate. So, thinking that on this particular day I might at least be able to read, I picked up the book: Taken on Trust – the story of Terry Waite’s captivity in the Lebanon. It’s not a book I had read before. When he wrote it, I was busy having children. But the more I read, the more I became fascinated by the similarities and differences in our experiences. He spoke of the long days and nights in which time seemed to have no meaning, separated as he was from the world outside. He spoke of his attempts to exercise – walking up and down and round and round until the steps became miles – and of his sense of frustration when he was chained to a wall and could no longer do this. He spoke of living for months without books. No books! And here I was reading his book because it was the best means I had of holding on to my own sanity!

Towards the end of his time in captivity, he became seriously ill with  some kind of chest infection and it was then that he says he came closest to being overwhelmed by what he describes as self-pity. Initially, this surprised me. Up to that point, his freedom and personhood had been violated in so many ways that I didn’t expect illness to make so much impact. Yet it did.

Self-pity. I know what he means. I know it only too well. But the more I thought about it, the more I wondered about that word self-pity. In the garden of Gethsemane, Jesus is ‘overwhelmed with sorrow.’ Is that self-pity, I wonder? He asks his friends to watch with him. Is that self-pity? He prays that he might not have to face the end that he knows is coming. Is that self-pity? Or is it more about a deepening realisation of one’s own vulnerability and hence a very human need for help, support and protection? And if it’s about a human need for help and support, is having that need really such a despicable thing that we must label it as self-pity and strive to hide it?

The sounds of silence.

Voices that can echo so loudly with vulnerability and inadequacy that it becomes hard to distinguish between them. At what point does the cry of genuine human need become the cry of self-pity? Who is able to make that judgement? As a child once put it:

pain is lonleyness because know one noes what I feel

(From ‘In Times of Pain’ by Jane Grayshon)

Brian Keenan, in The Evil Cradling (his own account of life as a hostage in Lebanon), is a good deal more open than Terry about the horrors of being at the mercy of nothing but your own mind. With nothing else to occupy it, the mind can and does torture us with all manner of distorted perceptions. However, because his time in solitary confinement was limited, Brian is also able to speak of the enormous strength and comfort that he gained from the companionship of someone who shared his cell and hence could walk the journey with him.

Having someone with whom to share even a little of the pain makes all the difference. There have been times in the past few months when I have been overwhelmed to the point of tears by the warmth, kindness and respect of folks who have shown me that they care, even if they haven’t always known how to help. Just by their presence, they help hold the shattered fragments of my being together far more effectively than they know.

I wish I could be more profound in my spiritual life. I am still very much a child in my understanding of my faith. I have no deep thoughts, no great insights, no outstanding qualities. I am a very ordinary man chained to a wall and attempting to struggle through another day of boredom and uncertainty.

(Terry Waite)

To me, this says it all. Those of us who face such difficulties are not heroes and would not want to be thought of as such. We are just ordinary people living what has to be lived because it has to be lived. We don’t deserve admiration and we don’t want it. Nor do we want pity. But, at least for me, kindness and respect are like gold in a world where everyone from the psychiatrist and politician to the local quack seem to be clamouring with opinions about what is wrong with me and how I could be or should be living my life.

People talking without speaking
People hearing without listening

(Paul Simon, ‘The Sounds of Silence’)

In such a world, I am profoundly grateful for all those who have walked beside me. I would not be without them. However, I also know that there is a sense in which the journey can only be mine. No-one can walk it for me. That’s why I need the silence. Not just because I am sick or because my brain cannot cope with input, though this may be true as well. But because I need to be able to hear my own voice in order to find my way through. And because, beyond that, in the darkness, whether I hear it or not, there plays the silent music of hope, the gentle rhythm of grace, the fiery heartbeat of God inviting us to dance.

Hello darkness, my old friend
I’ve come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence…

(Paul Simon)

Disclaimer: I cannot say what was in Paul Simon’s mind when he wrote the song. The above is simply one interpretation of his words.

Colours of day

Among my Christmas presents this year were two colouring books. As a result, I have been rediscovering just how relaxing a hobby this is. Headaches have become a real problem in recent weeks – often triggered by even the smallest amount of ‘input’. Colouring, however, seems to be one of the few activities that does not exacerbate them.

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A picture from the Dazzling Patterns colouring book by Beverley Lawson

There is also something very therapeutic about filling a page with colour when the outside world seems to be filled with mostly grey and muddy brown.

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Octopus from Millie Marotta’s Animal Kingdom

I am using a lot of orange in this one, which is odd because I’m not very keen on orange. But it’s an octopus sort of colour and it most certainly makes a change from the relentless grey we’ve seen through October, November and December.

And now, even the world outside seems to have become bored with grey. In the last few days, the weather here in Somerset has turned cold and clear. Where other parts of the country have seen rain, sleet or snow, we have had almost unbroken sunshine. I took this photo yesterday afternoon, out on the Levels:

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No ice, no snow, no rain, no floods. Just the late afternoon sun, a bitter wind and a beautiful blue sky 🙂

‘We’ll never see it again, I shouldn’t wonder. You may have blotted it out and turned it dark like this, for all I know. Nothing more likely. But I know I was there once. I’ve seen the sky full of stars. I’ve seen the sun coming up out of the sea of a morning and sinking behind the mountains at night. And I’ve seen him up in the midday sky when I couldn’t look at him for brightness.’ (Puddleglum, in response to the Queen of the Underland, in The Silver Chair by C.S. Lewis)

No need to say goodbye?

‘Remember, remember, the 5th of November…’

Whether it’s gunpowder, treason and plot, whether it’s the saints of old, whether it’s members of the armed forces, or whether it’s simply those we have known and loved, early November in the UK is traditionally a time of remembrance. It’s the time of year when the veil between our world and the spirit world is said to be at its thinnest. Hence the spectres of Halloween. It’s also a time of preparation for the darkness and frugality of the winter season (in a world without air travel and supermarkets) and for celebrating the awe and beauty of…

Autumn trees

Autumn leaves

Death.

In an odd sort of back-to-front way, it’s also a time of new beginnings. However you look at it, what was is passing away. The long, carefree days of sunshine, growth and wellbeing that the summer brought us are fading into the darkness of winter. Those who celebrate the Pagan festival of Samhain often see this as a time for letting go.

This is all very interesting to me because it was at just this time of year when I caught the virus that was to make me seriously ill with ME. On 31st October 2001, I spent the day with my family on the beach at Burnham-on-Sea. That night I fell ill and nothing was ever going to be quite the same again.

Over the years since, this anniversary has faded in and out of consciousness. The first year it was particularly significant, marking the end of what had been the most difficult year of my life. I remember facing November very much in the spirit of a new beginning. I had hope that the coming year would not be as hard as the one I had just been through and a new confidence that, even if it was, I could now live through it. There was some fear of the approaching winter, because of the viral illnesses that so often come with it, but there was also a new sense of inner strength.

Three years later, I chose to celebrate the anniversary by doing something I’d not been able to do since falling ill. I went to see a film at the cinema. Since then, there have been years when I have marked it and years when I have not. Last year, for example, the day passed without my even noticing. On the whole, however, the movement from October to November has come to have far more significance for me than January 1st has ever had.

This year, for some reason that I feel unable to fully explain, I felt an overwhelming desire to go back to Burnham and say goodbye – goodbye to the Ros that once was. It’s not the first time I have felt this. Our church holds a memorial service at this time of year to remember those who have died. Two or three years into the ME, I remember having to fight the temptation to write my own name in the book of remembrance so that it could be read out during that service. It wouldn’t have been appropriate, of course. I knew that. But I so wanted to do it. If I could have held a funeral for my old self, I would have done. But I didn’t know how and there was no-one to help. On the rare occasions when I voiced such feelings to others, I was met with complete incomprehension: ‘But you’re still you. You haven’t become someone else…’ or ‘But this is not forever. You will get better…’

Well, 14 years on, it’s looking pretty much like forever to me. Even if my health were miraculously restored tomorrow, I wouldn’t be the same person that I was back then. My body has aged. My children have grown up and moved on. My life and my relationships have been changed irrevocably. In that sense, the losses have been very real for all of us. Of course, there have been gains, too. But the fact remains that I will never climb the mountains, build the sandcastles, watch the films, share the hugs, or do any of the countless other things with my children that perhaps we might otherwise have done, had I not been ill.

So, this year, I decided to do what (in face of such complete incomprehension from others) I had never quite dared to do before. I decided to go back to Burnham and say goodbye. Properly. Perhaps it was the fact of not having been so well that triggered the desire? Perhaps it was something much deeper? But one warm, sunny afternoon towards the end of October, I went.

I drove myself there – a route I haven’t driven for 14 years. I wasn’t even sure that I could do it safely. These days, I rarely drive more than 30 minutes from home and this journey was to take me 50 minutes each way. However, I felt relatively well – better than I’d felt for some weeks – and the inner prompting was so strong that backing out just didn’t seem like an option.

When I arrived, I drove down to the lighthouse end of the beach and parked on the sea front. I don’t remember much of that last fateful day, but I do remember that we walked out to the lighthouse and that I was carrying my youngest daughter because she had come down with a fever while we were out. We didn’t know it at the time, but I would never do this again.

This time, I walked down on to the sand and looked at the lighthouse for a few moments, remembering. Then I stooped down and wrote ‘Goodbye Ros’ in big letters in the sand. As I wrote, it occurred to me that the real meaning of those words is, ‘God bless you, Ros’ and that seemed like a fitting parting. I thought again of that last day on the beach in the autumn of 2001 and remembered how, that summer, I had run with a friend’s dog for a mile across a beach in Northern Ireland – running just for the sheer joy of being able to run.

Suddenly, to my complete surprise, I was sitting on the beach sobbing. Not with pain, but with joy. I was overwhelmed with it – a deep, deep thankfulness for all that those 37 years of good health had given me. It was a powerful moment. A liberating moment. A moment of pure grace. For 14 years, I had not been able to remember those days without pain. Indeed, I had learnt not to remember them for precisely that reason. Suddenly, I was remembering them with joy. It was a special moment. I had not come expecting such a gift.

After that, I wrote two more words in the sand: ‘Thank You’. Then I sat for a long time just looking out to sea. And then I wrote, ‘Welcome to all that I can now be’.

Remembering.

I used to think loss was something that one was supposed to get over. Why do we punish ourselves with that thought, I wonder? Anyone who has ever been there knows it’s not true. As I have discovered, learning to live with loss is learning to live with just that. Loss doesn’t go away. Rather, he’s like the most annoying of good friends. You know the kind of people I mean. The ones you get to know really well. The ones who think they can turn up on the doorstep quite unexpectedly – often when you least want them.

On Burnham beach, as on many other occasions in the past 14 years, I discovered that it’s only when I open the door, welcoming him in and even embracing him, that I find Grace, smiling broadly, sitting at my table, too. That’s why I needed to say goodbye.

How are you?

People who know me well will have heard me say that this is a question I have long hated. The reasons go something like this:

Friend: How are you?
Me: (Actually, I’m ill. Still. In fact, this week, I feel crap. Do you want to know this or don’t you want to know this? If you don’t want to know this, why are you even bothering to ask?) I’m OK. How are you?

I hate it because, for me, it’s a question that lacks honesty. From time to time it’s been suggested to me that I’m reading too much into this. It’s a polite greeting. Nothing more. So why don’t I just treat it as such?

Well, that’s a good question. Where I live, for example, it’s quite common to be greeted with “Alright?” to which (or so I am told) the correct response is “Alright?” It’s an essentially meaningless exchange along much the same lines as “Hello”. We might as well say “Fluzbot” or something, except, of course, that “Fluzbot” is not a word any of us are familiar with, which makes it slightly risky. After all, it might mean “You swine!”. You never know! Usually, however, expression and tone tell us all we need to know. It’s like two dogs wagging their tails:

A: (Smiling) Fluzbot? (I’m friend not foe!)
B: (Smiling) Fluzbot! (Me too!)
A and B: (Good. That’s settled then.)

The intent is simply to put one another at ease.

So far, so good. However, it seems to me that the “How are you?” question, at least among friends, doesn’t operate on quite the same level as this. Rather, it has a range of acceptable responses from “Fine, thank you…” all the way through to “I’ve had a rotten cold this week…” That’s why it’s problematic. Whilst there are a range of acceptable responses, a response is acceptable only in so far as it is perceived to be “normal”. It’s “normal” to be well. It’s “normal” to have a cold and get better. It’s “not normal” to live in the shadowy lands of bereavement or chronic illness. These are not the stuff of polite conversation. They are disturbing places. Places we would rather not go. You can tell this by the way the question may change when a person is known to be recently bereaved. Those who want to show they care will ask it differently. It’s as if the inhabitants of this shadowy land need special acknowledgement. They are “not normal”, so they must be specifically invited to speak. Even when they do, they still risk dismissal and they know it. It’s a risky business emerging from the shadowy land.

The shadowy land. In depth psychology, the “shadow” is representative of all the things about ourselves that we would rather not acknowledge, but instead seek to hide or destroy. In its worst form, this is seen as being worked out in events such as the Holocaust, where the alien, the sick and the criminal were systematically dehumanised and destroyed. Rightly, we are shocked by such events. We dare not believe that we are capable of such things. And yet… yet there is a very real sense in which we continue to push those “other” from us into the shadows. The “migrants” are just one example. LGBT folks would be another.

Back at the beginning of my illness, the very first time I went out in my wheelchair, I had the following conversation with someone I knew:

Me: Hello!
Friend: (With apparent concern) Hello! What on earth has happened to you?
Me: I had a virus and now I can’t walk.
(Short silence)
Friend: (Looking at wheelchair) Well, don’t get too used to it!

It’s a conversation I’ve always remembered because it underlined for me the reality that I was now facing. In her world, people with viruses got better. Hence the only plausible explanation for my use of a wheelchair must be that I was getting some kind of kick out of it. In other words, that there was something not quite right about me. Hence in just those few brief words she informed me of my future place in the world. Life in the shadows had begun.

Interestingly, it was only this morning that the full significance of the words she used struck me. The fact is, I have “got used to it”. I have had to “get used to it”, as has my family. Not getting used to it has only ever been an option for those the shadow has not touched.

How are you?

The question invites and expects answers that fit in the safe, comfortable world of normality. When most folks say, “I’m fine, thank you”, the chances are that at least some of the time this will be true. However, when I say it, it’s never true. So, effectively, the real me disappears into the shadows. Repeatedly. On the other hand, if I do reply more honestly, I risk the averted eyes, the shuffling feet or the cheery brush-offs that tell me that the shadows is actually where I belong. That’s why I hate the question. Day after day, week after week, month after month and year after year it acts as a continual challenge to my right to exist. And if that sounds overly dramatic, I don’t care. I am weary of it.

So what’s to be done? Well, frankly, I don’t know. No doubt, the question will continue to be asked and life will continue in the shadows, where those of us with chronic illnesses will plot and scheme for the destruction of the rest of humankind… 😉 Alternatively, we could try the court jester approach and attempt to reclaim the question through humour:

Friend: How are you today, Ros?
Me: (With an evil grin) I’m sorry. My brain is a bit slow today. Could you repeat the question?

More suggestions welcome…

Juggle struggle

About a month ago, I was pondering life, as one does, and decided I would try to learn to juggle. I wasn’t sure how well my brain would cope with this. Speedy processing hasn’t been its strong point since I’ve had the ME. However, nearly 14 years on, I thought it might be good for it to learn a new skill – especially a physical one. I also thought juggling might be a good way of giving my body a little extra exercise, since it uses the arms rather than the legs.

As far as exercise is concerned, my plan seems to be working. Juggling definitely increases my heart rate. As far as learning a new skill is concerned, things are looking rather less promising. I mean, you’d have thought the balls would be delighted to be rescued from their unfortunate fate? You’d think they would rush into my hands in gratitude, rather than suffer yet another blow to the head? But no. I cannot seem to convince them to give up their unwavering attraction to the floor. They are loyal to the end.

Nonetheless, my efforts seem to be providing plenty of entertainment for the rest of the family. I am told that the expressions on my face when I began this project were a picture in themselves. Clearly, getting my brain to think about something it wasn’t used to thinking about involved a lot of grinding and clanking of some very rusty gears and cogs. This grinding and clanking had scarcely begun before more well-oiled minds began to apply themselves to the task. Indeed, my greatest achievement so far is teaching my daughter to do this thing… with the result that my already accomplished husband is now refining his skill so as to stay one step ahead. Like I said, hours of entertainment all round.

Meanwhile, my own efforts have not been entirely in vain. Progress is slow, but it’s happening. My main problem at the moment seems to be persuading my (non-dominant) left hand to let go of a ball once it’s caught it. Having persuaded it to do that, there’s then the small matter of persuading it to throw said ball rather than just dropping it. I’m getting there, but progress isn’t helped by the fact that my brain will simply give up after 5 minutes or so of practice. More than that, when adding each new step, I’ve discovered that it can only be accomplished once or twice first thing in the morning and then can’t be practised again until the next day. With those kind of limits, it’s been something of a surprise that I’ve managed to make any progress at all. Yet I have. The brain is a remarkable piece of machinery.

Anyway, since I’m still a long way from being sufficiently accomplished to show off my skill, I thought I’d leave you in the hands of an expert. Perhaps, one day…

Now you see ME…

Or do you? A good friend of mine teases me quite regularly about whether my existence is real or virtual, particularly when I have been absent from church. Whilst I generally take this good-natured teasing in the spirit in which it is meant, there are times when I can’t help feeling that it touches on something very real. When Dietrich Bonhoeffer was in prison during WW2, he wrote a poem: Who am I? Through it, he makes the point that what others see in a person can be very different from what they know of themselves. There is a sense in which even a face to face meeting can be ‘virtual’. The me that you see may be only a small part of the me that I experience.

Last Friday and Saturday, for example, I took part in an annual musical production put on by members of our Methodist Circuit. I sang, I acted and I played the flute. So what people saw was someone who was able to take a fully active role in a performance lasting an hour and a half. The only thing that set me apart from the rest of the cast was the fact that I spent most of the performance seated. Otherwise, I looked very ordinary. However, what people did not see is what happened afterwards.

Normally, I wouldn’t take the time to enlighten them. After 13 years, this stuff has become so much a part of my life that I don’t consider it worthy of comment. However, since this week is ME Awareness Week, I thought that, for once, I would tell it as it really is.

On Sunday morning, I stayed in bed until lunch time. When I did get up, I could barely walk. I had completely lost my appetite and felt dizzy and sick. I did not get dressed and spent the afternoon on the sofa. At dinner time, I struggled to sit at the table because I felt so weak. During the afternoon and evening, for want of anything better to do, I spent some time reading an essay of my daughter’s in order to check her punctuation. On a good day, I would have no difficulty with this at all. However, on Sunday, it took every last scrap of my remaining energy. I probably shouldn’t have done it. I went to bed with a headache.

On Monday morning, I still couldn’t walk and I still felt dizzy and sick. If you think how you might feel if you were really, really nervous… and going down with the ‘flu at the same time… then you might begin to get the feeling of what I am talking about. Again, I didn’t get up until lunch time. By late afternoon, I was able to wander a few paces out to the garden, where I sat on a small stool in the sunshine and planted two courgette plants. After that, I had a bath. That was it – the sum total of my physical expenditure for that day. The clean dishes remained in the dishwasher. The dirty dishes remained stacked up on the side. I did spend a bit of time on my laptop, but I also spent a lot of time with my eyes closed, resting. I was also having a lot of trouble seeing clearly. My glasses, which seemed fine last week, felt as if they didn’t belong to me.

Yesterday morning, I felt worse than I did Monday. I tried getting up three times before I was successful. I stayed on the sofa pretty much all afternoon and eventually felt well enough to read a book. I also spent a short while on my laptop.

Over both Monday and Tuesday, my communication with others virtually ceased. I said little more than a couple of dozen words to my husband. I sent the two emails necessary to rearrange an appointment. I made maybe half a dozen short comments on Facebook. That was it. For most of the day, putting words together was just too much effort. For some reason, that I don’t fully understand, it takes a lot more brain power than just reading.

This morning, I felt somewhat better. I had a morning appointment for a B12 jab and (unusually) felt a bit wobbly when I came back from that. However, generally speaking, today has been a better day. The dirty dishes have finally found their way into the dishwasher. I’ve repotted my pepper plants. I’m writing this. And I can see again. Things are looking up 🙂

To members of close family, all this is only too familiar. A few of my close friends have seen me in a similar state of collapse. Most have not. They see ME and yet they do not see ME (though some will remember the days when I only ever went out in a wheelchair). The fact is that most of the reality happens behind closed doors, leaving many with the impression that I’m a good deal more able than is actually the case and that ME is mostly about ‘feeling tired’.

This time, the cause of my collapse was primarily nervous tension. Basically, I was stupidly nervous about playing my flute in public. That’s all. But it set off a domino effect in my neuro-immune system, causing it to run away with itself. Something, somewhere, forgot to turn itself off. I can suffer the same kind of effect from a long car journey or just from walking more than about 150m (total) in a day on several consecutive days. Earlier in the illness, even just watching a film could do it – and the effects would last much longer. Earlier still and the kind of day I’ve described here would have been counted as an extremely good day. Indeed, I might have longed for such days.

Some doctors have commented that people with ME are less able than AIDS or cancer patients. When I have heard this, I have always assumed that they were referring to people with ME who are considerably less well than I am now. There are, for example, people with ME who are unable to move at all and are fed by means of a drip. I am very far from being in that state. In fact, these days I tend to think of myself as doing pretty well. I don’t suffer much pain any more and I rejoice in the fact that I can do so much more than I used to be able to do. So I don’t even think about comparing myself with a cancer patient.

However, 2 months ago, my father died of advanced prostate cancer. I accept that he was very fortunate. Whilst he suffered a fair bit of pain and discomfort in the last 6-8 months of his life, he was able to remain active almost to the end. Less than three months before he died, he played a round of golf. Two or three weeks later, he was still able to potter around the kitchen for much longer than I am able to and was still happily trying to solve a complex maths problem of the sort I have long forgotten how to do. I am extremely grateful for this. I know some people have it a lot worse and I would not have wanted him to go through months of debilitating illness. I know only too well what that’s like. Nonetheless, I found it extremely sobering to be faced with the fact that it was only in the last 6-8 weeks of his life that he was less able than I am now. It’s a reality I prefer not to think about.

We see and yet we do not see. Much of the reality that is ME remains hidden. Those who suffer most spend most of their lives out of sight and out of mind. Whilst cancer research attracts a huge amount of support, rarely do we ever hear of people raising money for ME research. Yet…

  • ME affects an estimated quarter of a million people in the UK, making it twice as prevalent in the UK as MS and three times as prevalent as HIV or breast cancer.
  • It is one of the most common causes of long-term school absence.
  • More than half of sufferers are too ill to work, a quarter severely affected to the point of being bedridden or housebound, often for years or decades. This amount to billions of pounds of lost productivity not to mention welfare costs each year globally.
  • Although the cause is not currently known many neurological and immunological abnormalities have been found. The symptoms are extremely debilitating and the most severely affected may be tube-fed, oxygen dependent and require round the clock care.
  • There is currently no cure or proven treatment for ME. The NHS offers only psychosocial treatments despite substantial evidence to suggest these treatments may be harmful for a significant percentage of patients.
  • There are no recognised tests to aid diagnosis. Yet delay in diagnosis or inaccurate advice in the early stages of illness dramatically increase the likelihood of permanent disability.
  • The mortality rate for ME is estimated at around 3-6 percent. The recovery rate is estimated to be similar. Lack of adequate research mean no accurate figures exist for either.
  • Biomedical research is chronically underfunded compared to equivalent conditions. More money is spent globally on research into male pattern balding than is spent on ME research.
  • Studies have found ME to be as/more disabling than MS, Lupus, heart disease and cancer. In its severe form, specialists have described ME as being more disabling than AIDS and terminal cancer until the final days of life.

This is why AYME have called their campaign for ME Awareness Week, ‘Now you see ME’. What is not seen needs to be seen.

So, now, if you have seen, please, please help others to see. And, if you are able, please also give something to ME Research (or the equivalent in your country). There are ‘hidden’ people out there who are desperately in need of help.

Time will tell

Back in the spring, I planted some bell pepper seeds. I can’t remember when this was. Around March, I think. I had never grown bell peppers before, so this was to be a whole new experience. I watered them and then I waited.

The days and weeks went by and two little seedlings appeared.  As they grew taller, I planted them out into larger pots. Then I waited again.

Over the summer, I have appreciated their greening presence in my kitchen. I enjoy watching things grow. But what I didn’t know when I planted them was just how long it would be before we would see any fruit. Or, more significantly, how long it would take for each fruit to ripen. Again, I waited.

I began to wonder if maybe the secret was to stop watching them.

Then…

A long time later…

Last week, in fact…

Red Pepper

Red Pepper

We picked our very first home grown red pepper!

There are several more green ones on the plants in various stages of development. However, green peppers don’t really suit my stomach, so I am hoping that there is still enough autumn sunshine for at least some of them to ripen to red in the coming weeks. Only time will tell. So, once again, I am waiting.

Meanwhile, my potted cyclamen has spent the summer outside. The summer seems to be its resting time and it likes the relative cool of the patio for this, rather than the kitchen window sill. Just recently, however, it has started to flower again. So I brought it back inside.

Cyclamen

Cyclamen

Then I discovered that it wasn’t alone.

Snail

Snail

I discovered our visitor soon after I brought the cyclamen in. Later, to my surprise, I counted no less than seven little snails in or on the pot, all smaller than my little finger nail. Thinking that perhaps my kitchen wasn’t the best home for a family of snails, I took them back outside where they could have the freedom to roam. Two days later, an eighth was spotted by my daughter, who named him Oliver. Yesterday, I spotted yet another!

At the moment, Oliver and his companion seem quite happy lodging at the base of the cyclamen pot. Having found a source of water (the kitchen sink) and a suitable crevice in which to while away the daylight hours, they don’t seem to have much interest in exploring the rest of the kitchen. One day soon, I will give in to sense and take them outside. Eventually, they will probably be caught eating my vegetables. However, right now, I’ve decided I like having them around. They don’t appear to do much. But that’s the point. Like the peppers, they remind me that there is a time and a season for everything (Ecclesiastes 3) – an important thing to remember when living with ME/CFS.

In contrast, Rudyard Kipling spoke of the ‘unforgiving’ minute that needs to be filled with sixty seconds distance run.

Unforgiving? Really?

Since when did the time who tells become so impatient?

(Updates on the snails: https://ripplesinthewind.wordpress.com/2014/09/24/snail-adventures/ and https://ripplesinthewind.wordpress.com/2014/11/14/the-sound-of-a-wild-snail-eating-2/ )