Recovery from long-term illness can bring challenges of its own, but there are ways to ease the transition back to health.
Getting back to health
It was supposed to be a lavish, lakeside celebration with friends and fireworks. In the months coming up to the year 2000, I had envisaged marking the millennium with a night that I'd never forget. As it turned out, I was right about that, but for all the wrong reasons.
Struck down with the flu, I spent a miserable evening at my parents' house instead, huddled inside with a rug over my knees. At the time, I viewed it as little more than a disappointment. What I didn't realise was that it was the start of a protracted battle with myalgic encephalomyelitis (ME), an illness that was to wipe out much of my 30s, destroying my career as a lawyer and ruining my social life. As I watched my world contract to a miserable shadow of what it had been, I looked enviously at friends brimming with energy and longed for the day when I could join them in a normal life.
Over a decade later, I can finally say that I've got my mojo back. Although I still have to be careful with my energy levels and have the occasional relapse, I no longer have to break each afternoon to sleep off the fatigue that used to thwart each day. I have launched a new career as a journalist and am able to work part-time, alongside raising my children. I socialise, go to parties and even throw the occasional one myself, and I'm strong enough to exercise several times a week. In short, I'm one of the lucky ones.
Yet for all the positives, my recovery has brought problems of its own. In common with many patients recovering from serious or long-term conditions, I've discovered the voyage back to health isn't all plain sailing.
The main struggle is learning what normal feels like. It's 11 years since I was last fully healthy, and I've just plain forgotten what that means. When I'm feeling tired, I find it difficult to gauge whether it's normal tiredness or more worrying fatigue; after all, I'm older than I was and perhaps can't expect to feel as perky at 43 as I did at 33.
This becomes a particular challenge when I'm exercising. I'm wary of pushing myself too far and lapsing back into ill health, but at the same time don't want to use my medical history as an excuse. If I find myself flagging in an exercise class, I don't know if feeling weak is typical for a 40-something trying to work out, or a sign that it's time to stop.
On a more profound level, being ill reduced me to a state of childlike dependence and changed the dynamics of my relationship with my husband. If I was too exhausted to think straight, he would make decisions for me. If I was too tired to contemplate going out, he would make my excuses. At times he had to be both mother and father to our children and take responsibility for all of us. I leaned on him heavily; thankfully, he had strong shoulders.
As I got better, he had to get used to me taking my rightful place in the family once again. It took a lot of patience and understanding as we all adjusted to the transition.
Dr Melanie C Schlatter, a consultant health psychologist at the Well Woman Clinic in Dubai, tells me that it's not uncommon for couples to find it hard when one partner has had to shoulder the burdens of both husband and wife.
"There can be a lot of resentment that builds up, as they've taken on roles that maybe they never wanted to or have had double duties, and it takes a lot of compassion and understanding to adjust to that."
Being ill also gave me a cast-iron excuse to avoid doing things I didn't want to do. I began to fall back on my condition to get out of daunting tasks and challenges and even, on occasion, to avoid some social functions. As I recovered, I would I find myself panicking at the responsibilities that good health had brought. There were no more excuses and sometimes I missed the safety blanket of my illness. This, too, is quite common, according to Schlatter: "The way you've come to terms with your illness has become comfortable. Just as you adapted to the illness in the first place, it's now a process of reversing that, and it can be difficult. Whether it's down to things you've managed to get out of, or things or people that you can avoid, it's almost a convenience to have something to fall back on. Of course, you can be absolutely tired, worn down or in pain, but it can be a little bit handy at times."
For others it can be more extreme.
"I've dealt with a lot of cancer patients who have been given the all clear. Once they're told they're fine and they don't need the check-ups as much, they can go into a bit of a spin. If there have been a lot of medical appointments and tests and check-ups, or even support groups, when they get to that point where they don't need them, it's almost like a grief process."
For all the problems, though, the prospect of beginning another new year reminds me how far I've come, and this year I'm going to make sure I enjoy it.
- Set realistic goals for what you can do. When you've been ill, you desperately want to feel good again and can easily overdo it, so give yourself permission to have a break.
- Check in with yourself each day. Write down what gave you energy, and monitor yourself just as you did when you were ill.
- Explain to others that you're taking things at your own pace. Those around you need to know how you are so they can match their expectations to yours.
- If you have children, keep communicating, otherwise they may draw their own, wrong conclusions. You can set joint goals for things you'll do together when you're well enough.