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Living Lightly

A Journey Through Chronic Fatigue Syndrome (M.E.)

John Hunt Publishing Ltd.

My collapse

There was a time when my own family had to have appointments to see me in my busy schedule. I was busier than Job. I used to say to people that I burned my candle at both ends and four places in the middle! I was even proud of the fact.

And I liked to help everyone. The saying: 'If you want something done, ask a busy person', was never truer. And I couldn't say no to anyone who asked. It was as if I was playing a game of pride with myself to see how much I could do in one day, stretching the bounds of what was humanly possible. Every 10 minutes I had spare, I'd fill with one task or another. I took multi-tasking to a new level: I'd use the moments when I should have been overseeing my food cooking to practise piano, wash out a bin or sew a cushion. Needless to say, I often burned my pot dry when I got absorbed in another task, or two! But that was part of the buzz for me: to see how much I could fit in, like I was cheating time itself or at the very least, beating myself. It was as if I had a personal bet with myself to complete two tasks before the food burned. Not surprising I didn't always get it right. Nor did I think that I'd ever burn my own pot dry.

Perhaps it's my competitive nature that's partly to blame? Choosing to be in the teaching profession was also an indicator: teachers are control freaks who take planning and preparation to the nth degree. It's a prerequisite of the job which suited my 'A type' personality. It's of no surprise to see that Chronic Fatigue Syndrome and M.E. are really prevalent among teachers. At the time, I mused that my colleagues who purported to suffer from M.E. or CFS were a bit pathetic, or dare I say it, maybe attention seeking? You never think that it'll happen to you. As time has gone on, I have learned never to judge anyone else: 'There but for the grace of god go I.'

I suppose, looking back, I had an indication within myself that the energy output needed to maintain a high achievement rate was too great. But I was burning fast, like a rocket, an adrenalin junkie ... it felt so good to be 'doing' all the time. I felt high. Important. Like others might respect me better? I certainly respected myself best when I was achieving.

I was a 'lists person'. My list of things to do being systematically ticked off gave me great pleasure. Looking back, it's a sad kind of achievement. But immersed in it, I felt important, infallible, a success. But underlying it all, the toll was being marked up against this unachievable, non-existent goal I was setting myself.

When the cracks started to show, I didn't recognise them as warning signs: At my lunch break, I'd be puzzled that my arm shook so much bringing my fork to my mouth from a plate on my lap. I learned to tense my arm so food didn't fall off or so that others didn't notice (how concerned are we to appear capable and normal to others?). And then there were the cases of flu which I got, bringing an overheated brain, foggy thought processes, sore bones and sometimes a fever. What was also odd was that often I was the only person going down with flu. Why was that? I seemed to get this with a worrying frequency, which increased the more rundown I became as the school year ran on. January, February and March were the lowest months.

The holidays became vital to my recovery in order to start afresh, especially the summer months. However, 10 years ago, in the year that I turned 40, for the first time in my life I hit a wall. My marriage had broken down, I had moved into a new place on my own, I had health issues with fibroids causing heavy bleeding, lots of visits to gynaecology, a new relationship and I was concurrently working hard in the evenings after work and at weekends for a Chartered Teacher award. I had never experienced feeling burnt out before. My body had previously been a capable, tireless machine which would perform anything I wanted it to. I hadn't really thought about it or really appreciated it. Like a well-running car, you don't notice it. It's when it starts to speak to you in the voice of tiredness, when even after 9 or 10 hours' sleep you never seem to feel rested – that and the awful dislocated feeling of not being quite present in the proceedings. That was the first time that I realised something was wrong. Other people assured me that it was just my age catching up with me. My mother assured me that she'd hit the same wall at 40 after completing her honours degree, so I took it as a temporary glitch. If I rested up a while, then I'd be able to take up the reins again. Surely? So, I remember speaking to my boss to ask her not to set me up for any further training courses or CPD (continuing professional development) for a year.

However, me being me, it wasn't long before exciting new projects came to me and, you guessed it, I couldn't say no. Not that I wanted to say no. As far back as I can remember, I've always had a zest for life and immersing myself in creative projects, a spark which I shared with my younger sister. As children, she and I would beaver away on craft projects together by designing, sewing, knitting and building ideas that came to us. My mother encouraged us and kept a 'make-it' box full of waste boxes, paper and assorted junk for our projects. As we had very little money, we learned to be inventive. One time, in order to make an outfit for a wedding, I spent a prized 50p on fabric dye, to dye an old sheet to make into a long skirt onto which I sewed a chiffon frill (from an old scarf of my mum's), and I designed a herringbone belt laced at the waist in stiffened chiffon. My top was an old white jumper which I cut off at the underarms, turned it upside down so that the rib at the waist was now across my chest and used the sleeves for the hem and the straps. I wove my shoulder bag from strips of waste fabric, leaving long fringes of cloth hanging and attached a plaited strap. So the whole outfit cost me 50p! I got a great thrill out of thrift and inventiveness. I'm a fastidious worker and was most keen for anything I made not to look 'home-made'. This aspect of my character has been both a bugbear and a blessing. Sometimes, I could have got away with not quite putting in so much effort but I could always see the flaws (seams not lined up exactly, not well cut, lines not straight ...). So I worked harder than I should have perhaps at everything. My sister's style was a lot looser and flowing but she seemed to produce craft items with flair ... I just credited her as being the real artist here and I was only a good copyist, except when it came to dressmaking – that was my forte. It was no surprise to anyone when I set up my own dressmaking business after I graduated from Glasgow University.

Personal drive and motivation to achieve well for myself but to be recognised for my achievements too are my hallmarks. I take after my grandmother in this respect, who pulled herself from poverty and diphtheria into social status and wealth. She remained organised, problem-solving and thrifty to her death, a few years ago, at 94 years. Even as her body was failing her, she didn't get down-hearted but just remarked 'Well, I wonder, how can I get round this?' I respected her attitude to the changing demands which life placed on her and that she was indomitable to the last.

So with my own illness, I apply her approach: what can I make of the turn of events for me now? I believe that there is no coincidence, that I drove myself to illness over many years of not listening to my body, not choosing to pay heed to the tell-tale signs. Although, in my own defence, I neither recognised the signs for what they were nor had any will to do anything any differently than I was doing. Well, hell mend me. And it did. My own personal hell ensued.

That March 2010, I woke on the fateful day of my collapse and had difficulty thinking clearly. I had run 17 twilight courses for teachers end on to the school day between September and March, in addition to my daytime teaching post. And I was also secretary of a local environment group on a voluntary basis, giving up many hours of my time a week. I was burnt out. I had spoken to my boss the previous week saying I was stressed and asking for help to set up the IT, which she dismissed by saying 'Well, everyone else manages.' With that comment, I continued to deny what I was feeling; otherwise I would have been a failure to myself and my colleagues if I hadn't been able to cope. As I was later to realise, this need to prove oneself capable at all costs was key to understanding Chronic Fatigue Syndrome.

So there I was, the morning after running yet another course, waking feeling disconnected from the world around me, trying to process a simple choice like what clothes to wear. Normal tasks become cloudy and onerous when your thoughts won't work. I caught sight of myself in a mirror as I perched on the end of the bed, half dressed, and was struck by my ghastly pallor. Hands clasped either side of my face I spoke to my reflection, saying 'I don't feel well.' My reflection just stared back with glassy eyes that were too shiny to be healthy but didn't take charge and tell me to phone in sick. Unable to make any worthwhile decisions it was easier to roll along with the time-honoured habits. So with difficulty, I managed to dress myself, still thinking this would pass as I drove the 30 minutes to the school. I was aware of a fog in my brain while driving and nearly turned round for home more than twice. But what creatures of habit we are. We seek to fulfil duty unless the situation is dire. Funny thing is, when your thoughts are so foggy, your normal processing of what's dire, when to pack it in, or when to rest doesn't work. All that remains is this automaton, religiously, robotically attempting to go on with the primary mission, even in the face of sense or reason. Even when the primary mission should be overridden to one of self-preservation, you don't notice.

So I went on that morning, until break time, trying to appear as normal. All of my mental processing going into a façade of normality when all the while I felt a gnawing sense of unease and unreality, through a foggy tunnel, distant from the proceedings, clock-watching until break. And at break time, that's what I did – I broke down, crying to the head teacher, who could see I wasn't well, as any normal person would have, and sent me home. My GP (general practitioner/family doctor) that afternoon labelled it 'Stress' and offered me antidepressants which I declined. Even in my fogged state I knew I wasn't depressed. This was something else. Clutching my 4-week sick note, I went home to rest.

Rest doesn't describe the complete collapse which ensued. I was so low that I had to lie flat for weeks. Even lifting my head or going to the toilet were strenuous tasks. The heart beating inside my chest was sore, and breathing too was a great physical effort. My live-in partner at the time just said, 'I told you you were doing too much.' I regarded this as an unhelpful statement from a man who had employed a strategy of withdrawal from helping out in the house in order to force me into slowing down over the previous months. It didn't take a genius to work out that this would only give me more to do. Well, something inside me snapped and I thought, 'Well! Hung for a sheep as for a lamb' (a wonderful phrase which relates to the death penalty for stealing livestock: if your neck is on the line, you might as well make it worthwhile!) and asked him to leave. So within 1 week I collapsed, signed off ill indefinitely and ended a relationship which had been sour for over a year. Double whammy.

Luckily, I have a family who rallied round to help feed me and look after me. My body felt mortally heavy as every movement or thought tired me, and sent me reeling one step forward, four steps back. It felt like I was wading in tar at the bottom of a barrel because any movement was an extreme effort. What was worse was that feeling of being dead inside me. I had no energy to engage emotionally with the world. There was no joy or rest in my wracked body. Without my mother's and daughters' support and care over the many months it took for me to focus on rest and healing, I would still be at the bottom of that barrel. Extricating myself out of the sludge of tar coating the base of that barrel became my only goal.

You just never think that it'll be you. Lying there gave me lots of opportunities to look back and reflect. Would I do anything differently? What was the point of all this creative zeal and zest for life if you had to limit what brings you joy? And isn't 'Regret' a waste of precious energy? A dragging, sucking pull-down into the tar barrel, where you could wallow? So I realised that I didn't want to wallow. I had done exactly what I wanted with my life and nor would I have done anything differently. And in this too, I would use this breakdown to my greater wisdom and benefit. I had lots to learn from it. With this positive mindset, I'm not sure whether it was despite or because of the physical challenge I was now experiencing, I set about engaging with my new state to find out where it would lead me.

That's when wonderful words would appear in my head which, when I was able to pick up a pen, flowed out as poetry, a process like letting blood which stemmed from me without thought and pumped forth onto the page. I could clearly hear words being dictated to me to write. Words of wonder, comfort, joy. Words expressing melancholy but also words of hope. I knew without doubt that this situation which I was experiencing would bring me great wisdom if I were prepared to face myself fully and unashamedly. Indeed, I believe that we have nothing to be ashamed of. We are all developing wisdom through living our lives. A wisdom which grows from each encounter with ourselves, if we acknowledge the truth within us. God isn't judging us. It is only us who are. God knows that growing involves sometimes making unwise choices so that we can choose a wiser choice next time.

I found it really helpful to keep a journal to chart my healing progress. I suggest that you acquire a new notebook which is dedicated to recording your healing process. It's helpful to just let the pen flow. If you engage in a dialogue with yourself, you might be amazed with the insights you'll open up. Allow your body to 'speak' to you and write its responses.

You can record how 'light' you feel each morning. I used a smiley face system in the margin for an at-a-glance record of my energy levels each day: a big smile for a day with lots of energy; a flat-line smile for a day when I felt a bit flat; a sad face for a day when I was laid low with fatigue. This easy record helped me to recognise what strategies helped me and to pinpoint which activities or events were not conducive to healing my condition. So I was able to see over time that, even when it didn't feel like it, I was gradually improving.

Happy writing!

Affirmation: 'I allow myself to have complete rest.'

Cracks started to show!

I'd like to say that life was easy before my collapse. That everything had a place and a place for everything. But there wasn't perfection. Far from it. Indeed, it was the undercurrent of imperfection that was rippling through into my life that caused the breakdown.

But I get ahead of myself. Externally, I had everything that I needed: a fabulous career where I was respected, two healthy, talented daughters, a husband who provided for us, a comfortable home, a yoga class with students who looked up to me, and many other talents. I even thought to myself that I was happy.

The undercurrent of anger that ran through my life, I chose to overlook: if I didn't address it, it would cease to exist. In other words, I was denying myself. And the anger just would not go away. The older I got, coming up on my fortieth birthday, the louder my internal anger got. It even developed a sound and a voice. The internal scream, like the famous painting by Edvard Munch, grew and grew to fever pitch, the less I refused to acknowledge it. In company, I was afraid that if anyone came too close, they'd even hear the sound emanating from my head. How can a sound be so overwhelming and anyone else not hear it? That's the strange separatist nature of existence that I don't understand. I know that spiritually we're all linked through the Oneness of God, so why couldn't others sense my scream? But the strange thing is my family have subsequently told me that they didn't know what I was going through because I didn't speak. How can my exterior be so calm and so false as to belie my inner world and no-one else knew? Don't get me wrong. I would have been appalled if anyone had known about my inner struggle – I was so hell bent (interesting choice of words, Jenny) on appearing calm and in control. And also being in control of myself and situations around me. Naively, I thought that if I maintained external control I would have mastery over my internal struggle and it would all resolve itself. But it just wouldn't lie down and sit quiet.

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Excerpted from Living Lightly by Jenny Light. Copyright © 2014 Jenny Light. Excerpted by permission of John Hunt Publishing Ltd..
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