Writing Down Under

A collection of articles that have particular relevance to health, environment and social justice.

Chronic Fatigue Syndrome - How to Thrive - Part One

In the United States alone an estimated half million people suffer from Chronic Fatigue Immunodeficiency Syndrome (CFIDS) while the vast majority of cases remain undiagnosed. This represents millions of dollars in lost revenue for both individuals and the country.

Sleep:

For anyone with CFS, sleep is  the number one priority and there’s no doubt about it, I sleep a lot – at least ten hours a night. For others the minimum requirement is around eleven hours while some people prefer to sleep fewer hours at night and catnap throughout the day. You need to find the pattern that works best for you. There’s no formula that works for everyone although some experts advise you to go to bed at the same hour each night and get up at the same time each morning, regardless of how long you actually slept orthe quality of that sleep. This doesn’t work for me personally; nor does it work for the majority of people I’ve spoken to. After a bad night I try to sleep in the next day to make up for lost rest. That way, when I arise I can still function  at  a reasonable level for the remainder of the day. It's essential to listen to your own body and work around your own routine. I’m lucky enough to be able to work only in the afternoons so sleeping in is an option for me. Not everyone has that luxury but if you’re able to organize your day around your biorhythms it helps to optimize your ability to function.

Pacing:

Most CFS sufferers have been given the lecture on pacing. That is, doing a little at a time, resting between activities and staying within the ‘energy envelope’. Many however, don’t follow this advice, preferring to push themselves when they’re having a good day (or hour) to complete certain tasks, only to ‘crash’ shortly after. Once you crash, you’re down for the count so think about it – it’s just not worth it. You’ll achieve less in the long term and feel sicker than you really need to.

My house stays ‘reasonably’ clean and in order but if I’m at the limit of my energy, I ignore it. That’s right. I shut my eyes to anything that doesn’t absolutely have to be done and being a true Virgo – a neat freak – I find this quite difficult. Try mopping the bathroom floor one day, doing a load or two of washing the next, mop the kitchen another day and wipe the dust off the loungeroom furniture the next. Close the door to the bedroom and worry about it only when you have time. For me, this is often about once a year!

Remember that when you get to the end of your life, having a perfectly clean and tidy house will seem like a truly insignificant achievement. Put your time and energy into more important things. More on that later.

Lists:

Make lists for everything. Before you go to bed at night, write out the four most important things you need to do the next day and stick to it. Any more than four is going to be unrealistic and for people with CFS there are times when achieving even one item on the list will be a challenge. Number from one to four in order of priority.

In the same way, don’t rely on your memory throughout the day. I keep a tiny notebook with me at all times – at work, when I’m shopping, on the kitchen bench. When the kids remind me in the morning to pick them up after a school meeting I write it down. If I don’t they’re likely to find themselves waiting on street corners and texting me madly from their mobile phones – hoping I’ve actually remembered to turn mine on to receive their messages. You can see how messy this can get.

Buy two or three small notebooks, put one beside the bed for your nighttime list, one in the kitchen and one in your handbag or pocket. Put the day and date at the top of the page and list, list, list. I find this really helps to keep the stress levels down as things can become mighty complicated when I forget basic issues. It has a kind of dominoes effect on my day. Forgetting leads to stress which leads to more forgetting.

Supplements:

Once again it’s up to you to listen to your own body, experiment with medication and supplements and work out what’s beneficial for you. Find a good doctor – difficult I know but your local support group probably has a list of doctors other members have found to be sympathetic to the cause. It’s important not to self-medicate as many people with CFS have adverse reactions to common drugs.

As for vitamins and minerals, there are a few common supplements that seem to work for many. Among these is a good magnesium/calcium supplement, particularly for those who are prone to muscle pain. This is one supplement that works well for me and if I run out for a few days, the pain levels rise noticeably.

Undenatured whey powder has also been in the limelight recently and is recommended by some of the foremost experts on CFS. The whey contains important amino acids, the precursors of protein, which is essential for muscle development. Look for a brand that hasn’t been put through a heat process as heat renders much of the protein and amino acid content biologically inactive, meaning it won’t do you any good at all.

Given the nutrient-deficient quality of much of today’s food, an all round multivitamin containing antioxidants is also a good idea, not just for CFS sufferers but for the rest of the population as well. (Cut back on microwaving as much as possible as  microwaves can destroy nutrients.) Many people with CFS have sinus and hayfever problems and many have found that a mixture of garlic and horseradish with vitamin C can reduce infections.

Say No!

Stress exaccerbates the symptoms of any illness and has a devastating effect on CFS. While it doesn’t cause the illness it can certainly bring on a relapse faster than anything I know. Avoid it wherever possible. This means being able to say ‘no’, loudly and clearly, without the guilt – which is a stress in itself. You need to accept that you’re not able to help out at school tuckshops, working bees, babysitting for friends etc the way you used to. If you try to keep up you won’t cope. The formula is that simple.

It also pays to accept that your illness makes it nearly impossible to make and keep any kind of commitment. Instead of accepting invitations and other deadlines on a definite basis, learn to say, ‘I’d love to be there…if I’m well enough. I’ll phone you on the day.’ Real friends will have no problem with this and as for the rest? Does it really matter what they think?

Which brings me to the next issue. Emotional Vampires. These are the people who drain you; who, within ten minutes of meeting them, leave you feeling depleted, fatigued, stressed and most likely in pain. They demand all your time, a hundred percent of your attention and because their own emotional needs are so high, can actually draw on yours. You can ill afford to let them absorb it. We all know these kinds of people and struggle with them. Cut them out of your life or if you’re unable to do that because of family connections or a sense of obligation, at least limit your time with them – severely!

Honour your limits:

Most people waste endless amounts of time watching mediocre television shows, surfing the net, talking on the phone and engaging in all sorts of activities that will never get them where they really want to go in life. Face it, if you have CFS you don’t have the time or energy for these time wasters. That’s not to say you shouldn’t flop in front of a movie or simply read a book when you need your down time. Just be aware of where you put your time. If you have only X amount of time in which you function effectively, you can make conscious choices about how and where you put your energy.

And when you begin to feel ‘stretched’, stop! Even better, listen to your body and cease activity before you reach your limit. If you overdo it, you’ll be sick for the rest of the day and probably for the next two or three as well. It’s simply not worth it.

Eliminate toxins

As many people with CFS suffer from chemical sensitivities, removing toxic substances from the environment should be an obvious strategy. However, to my surprise, after speaking to other sufferers I learned that many of them aren’t aware of the effect chemicals are having on their health.

I can go from optimal functioning to debilitated in less than a minute based on who walks through the door and what perfume or deodorant they’re wearing. There are many aspects of the environment we can’t control, leaving us at their mercy, so it pays to control those we can. Switch to organic skin and personal care products where possible. While there are many to choose from, the definition of ‘organic’ can be fairly loose so read the labels carefully before buying. As a general rule, anything with a long name you can’t pronounce isn’t going to be good for you. At least buy fragrance free.

The same goes for household cleaning. Most bathroom cleaners contain bleaches and other nasties that leave a lot of people with CFS reeling. Substitute with simple mixtures like bicarbonate of soda and vinegar. You’ll be surprised how effective they can be. Replace furniture polishes with lavender oil and beeswax and bypass room and carpet deodorisers, window cleaners and fabric softeners altogether. A quick web or library search will turn up plenty of low cost natural alternatives.

It will take some time to work out the strategies that are best for you but the rule of thumb is to listen to your body. It will tell you who and what to avoid, what to eat, what supplements you respond to and when you need to slow down or stop. Develop an intimate relationship with your own body and you’ll find you become your own expert.

People with CFS can still lead productive, fulfilling lives. Of course

there will be relapses and health crises and sometimes you’ll let people down, including yourself – but who doesn’t? If however, you can get used to the idea of achieving goals slowly, bit by bit, you may even find your leisurely journey enjoyable. We all get there in the end. Whoever said that the phenomenal pace of the modern world is mandatory? Why can’t we dance, or tap our feet, to the beat of a different drum? Enjoy the moment, for in the end, that’s all any of us has.

Melinda has worked as a counselor for the CFS/ME/FM Society of Queensland and has suffered from the condition herself for eleven years. She is now pursuing a career in freelance writing.