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From Disaster to a New Normal

Recently I heard a lady from the Australian Red Cross talking about how people adjust after they've experienced a natural disaster. In the first year they adjust physically – finding a new job, perhaps, or a new place to live – then in the next two years or so they adjust mentally and emotionally. Eventually they find themselves living 'normal life' again. This new normal could well be very different from the old one, but satisfying all the same.

As I listened I got very excited: what she described paralleled so well my experience of life after I developed CFS/ME. This is my story of how I adjusted to this disaster, first physically and then mentally and emotionally, and of what my new normal is like nine years on.

The Disaster

On the afternoon of February 25, 2003 I was supervising a group of students in a university lab when I started to feel like I just couldn't stand up properly. I felt increasingly unwell and eventually went home. I've never gone back.

Back then I was living an active life: only a couple of days earlier I'd spent the day exploring a local park on snowshoes. Now I felt very ill, was struggling to eat or drink and was finding any kind of movement difficult. I would lie in bed for hours, unable to even twitch my feet to make them more comfortable.

After six weeks I was diagnosed with glandular fever (erroneously, as later became apparent) and told this severe phase of illness would most likely last another six weeks. I cried. I didn't know how I'd cope with feeling this bad for that long.

About two months later I returned to New Zealand (from the US), intending to recuperate at home then return in the new year. I was quite unable to care for myself, and was concerned at the strain I was putting on my friends who were cooking all my meals and doing my laundry. Three months later, and with no improvement in my condition, I was diagnosed with Chronic Fatigue Syndrome by my GP.

Physical Adjustment

CFS/ME has greatly reduced my stamina: I can do more or less anything anyone else can do, but I can't do anything for very long and rapidly become exhausted. It also has a variety of other physical effects: for example, I become nauseous if I try to sit up for too long and I easily become much too hot or too cold. During the first year or so of my illness I learnt how to work around many of these physical limitations which greatly improved my wellbeing.

The first adjustment was in finding lower energy ways to achieve everyday tasks. I have always enjoyed reading but now found it very tiring to hold books. I began to listen to talking books and the radio instead. Showering was frightening, as my balance was poor and standing up was exhausting, so I began to shower sitting down. A physio prescribed me a walker so I could get around the house without falling. I now make use of many physical aids and adaptive technologies that enhance what I can do with the strength I have.

Secondly, I had to learn to manage within my 'energy envelope'. For the first six months or so I frequently overdid things: often falling in the house when I ran out of energy and often needing to spend days in bed with severe pain and flu-like symptoms as I recovered. Slowly I began to work out approximately how much I could reliably accomplish in a day and established a routine of three hour-long 'up times' per day with the rest of my time spent resting in bed. I also learned to plan my weeks so that there weren't too many demanding activities crowded together. Once these things were in place I found myself having far fewer really bad days and I have become extremely protective of my routine!

When I first became ill I struggled a lot to eat and drink such that I lost about 15kg in the first 8 months of illness. Sometimes I wondered if I was going to die. The weight loss eventually stopped: in part due to the gradual easing of stress as my new life started to take shape and in part by learning low-energy ways of eating. These days I always use light-weight cutlery and ask to be spoonfed on bad days. Ironically, once my weight loss stopped I promptly began to put weight on again! I was eventually able to halt this weight gain through a mixture of medication adjustments and the adoption of a low GI diet, but working out how to do that took another 3-4 years.

When I was first ill I also found that, whilst I was tired all the time, I often took many hours to get to sleep and I dozed frequently throughout the day. When I got married (nine months after I first got ill) this problem largely went away and I found that I could get to sleep relatively easily again although I still never woke feeling refreshed. I now take melatonin every night and am also on an antidepressant that helps me sleep more deeply. With these I sleep a lot better than I used to and am better able to get through the day.

Mental and Emotional Adjustment

As I learnt to manage my condition and my world stabilised, I was able to begin to adjust mentally and emotionally to what had happened to me. Some of this was achieved by learning to think and act differently but some of it was simply the healing brought by the passage of time.

As my illness dragged from months into years I began to realise that my CFS/ME had made it unlikely I'd ever have children of my own. I was too weak to safely hold any but the very youngest of babies and I was quite unable to look after myself, let alone anyone else! When young children came to visit I could generally enjoy their company, but after they'd gone the grief would well up and I'd often cry for hours. After three or four years, though, I noticed that I was crying less and was more and more able to simply enjoy having children around me.

I have found it best to not allow myself to dwell on the capabilities and the dreams for the future that CFS/ME has taken from me. I do not know if I will ever recover from this illness: there is currently no known cure and, whilst some people do spontaneously recover, not everyone does. In the light of this I have chosen to build a life that 'works' in this situation of illness rather than live in dreams that I have no way of realising. One consequence of this is that I'm gradually shedding objects from my old life – such as university textbooks or SCUBA gear – that I cannot use in my current state of health. Somehow letting go of them helps me to live in the life I've been given rather than simply waiting for the return of a life in which I could use them.

I've always been rather staunch so I struggle to accept that I'm no longer as robust as I used to be. I'm much more emotionally fragile than I was before, and easily become overwhelmed and overwrought. I often feel like screaming (and sometimes actually do), and cry over sad news stories. I also live with significant 'brain fog' that makes it hard for me to think straight. I sometimes struggle with feeling stupid because of this. Somehow these symptoms – more than the physical ones – have a tendency to feel like failures. Even after all these years I still sometimes feel like I must be a bad person because of the difficulty I have coping with conflict, understanding new ideas or even dealing with a loud dog barking outside.

When I was first ill I would have vivid nightmares several times a week in which I was too weak and slow to get away from something or someone dangerous. After about three years these dreams had largely tapered off. I think this was because I had significantly adjusted to my new reality and my illness no longer made me feel so unsafe. Similarly, for the first few years I used to cry tempestuously almost every day. I just couldn't cope, despite all the support I was receiving and the antidepressants I was taking. Now, whilst I still often get teary and miserable when I'm tired at the end of the day, uncontrollable sobbing is largely a thing of the past. Life generally feels copeable again.

The New Normal

When I first became ill the changes imposed on me felt devastating. I seemed to have gone from being 26 to being about 80 years old almost overnight. Gradually, though, and with much assistance from the people around me, I have been able to build a new life that fits my new reality.

I manage my illness by keeping myself to a strict routine, which requires both discipline and planning. Everything I do has to fit into the three hour-long 'up times' I have per day, so anything that takes longer than about 40 minutes has to be divided into shorter segments which I call 'little hops'. For example, if I want to bake some biscuits I might make the dough in the morning (first hop) but only actually bake them in the afternoon (second hop). Most things can be broken up like this but lots of things don't seem worthwhile when I work out just how many hops they'll take!

It is a difficult way to live and is often uncomfortably 'character-building'! I must constantly strive to keep myself in the small space between doing too little (which makes me bored and irritable) and doing too much. There is a lot of unpleasantness to endure and I am frequently frustrated at what I cannot do. I have had to swallow my pride and allow others to carry out much of my personal care. I also have to work hard at relationships as I am so dependent on others and live so intertwined with them. However it is a delight when I see the fruits that these years of weakness and dependence have grown in me and I give glory to God for this.

At the same time, with the gracious assistance of many people, I have been able to build a good life despite my ME/CFS. Most days I spend some time sewing or doing other craft work – something I rarely had time for when I was well – and I enjoy creating beautiful things either for our home or to give away. I have always enjoyed growing things and continue to take great satisfaction from growing vegetables, flowers and herbs from seed I have saved myself from the previous year's harvest.

I have gained a much deeper understanding of the world in which I live from the many I hours I spend every day flat on my back listening to the BBC World Service. From time to time I find ways to feed that understanding back into discussions of which I am a part. I also frequently have some kind of intellectual project 'on the go', such as the household carbon footprint auditing tool that my husband and I have developed.

Even though I have only been able to attend a service twice in the six years in which we have been members there, I am very involved in my church. I pray for the church, have sometimes helped in planning Sunday School lessons and generally bake a mammoth sultana cake for working bees. I enjoy meeting and keeping in touch with church folk either by email or by having them over.

Six weeks after I first got sick I was told that I might remain so for a further six weeks. I cried my heart out: I just didn't know how I would cope. Eight months after I got ill someone misheard me and thought I'd been sick eight years. I was horrified: I hadn't realised this illness could last so long. Now I've been ill not only eight years but nine and I feel that I have learned to live well with CFS/ME. I'm still daunted by the possibility that I may live this way to the end of my days but the idea doesn't really scare me any more. This life has become my new normal: a different life from what I expected, but a good one all the same.

Heather - April 2012