Half-Life

Of the many and varied irritations of my MS, fatigue is the worst. It shortens my day to a mere twelve hours and addles my brain for many more. On really bad days, I stumble through a fog of sleepiness until it finally lifts, leaving me a few precious hours to achieve anything.

Of course, we all feel tired sometimes, but chronic fatigue is more like illness than a need for rest. Imagine a bad hang-over combined with jet lag, all your limbs filled with lead and you’ll get the picture. And frustratingly, it is not cured by a good night’s rest (sometimes you wake up fatigued) nor a quiet day, though this helps. It simply needs time to dissipate.

Helpful habits

That said, I have developed some habits that at least lesson its ill effects. I have worked on a sleep routine that allows for both maximum sleep/rest and minimum fatigue interference during the day. Shortly after the dog goes to bed at nine pm, so do I. My husband reads to me (excellent way to relax) and I eventually nod off. Ironically, no matter how exhausted I am, sleep seldom comes quickly and I lie for some time listening enviously to my husband’s gentle snores.

When I finally do get to sleep, it is often interrupted by my night cough, dead/painful limbs or other irritations. However, by staying in bed until nine the following morning, I’ve usually had enough rest to face the day.

Since not too much happens in the evening or night-time, I get my rest without missing out. Though I would like to see an evening movie or play, a matinee is a better option.

Nap time

You might think that a ten or eleven hour ‘sleep’ would be enough for anyone. But sadly, no. As for toddlers and grannies, nap time is a must and I get cranky or over-tired if I miss my post-lunch doze. Hermione has one then too and ensures that I do not exceed the half hour mark. Most of us benefit from a post-prandial power nap, so whether you have fatigue of not, a sneaky fifteen minutes will do you good!

You can’t do everything

As a naturally busy person, not being able to do all the things that I enjoy is a source of great frustration. I want to be like my friends who regularly travel up to London for an exhibition or a show or even both. I want to be like the ones who go on wonderful hikes across the countryside and still have the energy to do the same the next day. I would like to be able to hold a conversation with someone for more than two hours without being exhausted afterwards.

But as the song says, ‘You can’t always get what you want.’ On special occasions, I will stretch my limits, but the price will need to be paid after. I suspect that after travelling to Maine for my son’s wedding, I may need to sleep for a week!

But you can do something

It’s taken me a long time to accept the limitations that MS puts on my life-style and I have not always faced it with good grace. There has been much swearing and a desire to throw china. Even now, I am not totally Zen about it, but I am more accepting.

What has helped the most is the realisation that no matter how fit and well you are, your life is not entirely your own. Perhaps you have a job, or family or responsibilities that take up your time. Few of us really have all day except after retirement. At fifty-nine, I had hoped to be pursuing a career, but no-one wants someone who falls asleep at their desk. So I gradually wound down my teaching and retired.

Unlike most of my peers, I have a twelve hour day in which I can do some things. Perhaps I can’t do wildly exciting things, but I can do much.

Yesterday, I took a friend to the amazing Barbara Hepworth exhibition at the Towner gallery here in Eastbourne. The day before I enjoyed a coffee with a friend over-looking East Dean green in the sunshine. It was idyllic. On Monday, my craft friends came and made me laugh.

It is a privilege to be able to pursue art and writing, to help others and to enjoy my garden. All these would be denied me working full-time in an office. It seems that MS has its up-side after all.

Embrace the moment

Most of all, my condition and the knowledge that it will reduce my life-expectancy somewhat, has not made me indifferent but rather greedy for life. If I am awake, I plan to enjoy every minute.

Very few hours are spent on social media except to communicate with those I care about. Little more than an hour is spent on television in the evening. Anything not terribly important (read housework) is kept to a minimum. Because in the end, we are all time poor. What matters is taking the hours we are given and enjoying them for the blessing they are.

I could write more, but it’s time for my nap!