Getting enough rest - an essential part of managing CFS
Rest is the single most important factor in allowing CFS sufferers (CFSs) to get better. An invariable feature of the history is that exercise (either mental, physical or emotional) makes the symptoms worse. Indeed, this distinguishes CFS from depression - exercise tends to improve people who are simply depressed. In CFS the desire is there but the performance is lacking. However, all CFSs tend to push themselves to their particular limit every day and therefore do not give themselves a chance to get better.
Most CFSs compare themselves to what they were like before their illness began. This is hopeless. It is vital to work out exactly how much you can or can't do in a day - and then do less.
Imagine that a normal healthy person has £1,000 worth of energy to spend in a day. The CFSs only have £100. What is more, this has to be spread out throughout the day in such a way that they have £20 "change" at the end. This will then allow recovery to occur.
It is also important to make each level of activity and rest the same every day. Most CFSs end up on "boom or bust" ie they rest up for a few days, do too much and crash again for a few more days. Whilst you are doing this, you will not get well.
Resting In The Day
Two points about proper rest.
- By resting, I mean complete rest from exercise, visitors, telephone calls, reading, computers, talking, child minding, noise and TV. All these count as activities which have to be carefully rationed through the day.
- The second point is to have a proper rest, when you actually go to bed, regularly in the day, EVEN ON A DAY WHEN YOU FEEL WELL. The fatigue in CFS is delayed. If you push yourself one day, expect to "pay" for it 12-36 hours later. So just because you feel well one day, don't overdo things or you will be worse off the next. I like all my patients to sleep in the afternoon.
One of my patients, Lydia Noor, has developed a useful technique for rest. Every activity is scored as to whether it is energy giving (e.g. sleep, lying in bed in a darkened room, meditation), energy taking (e.g. dressing, walking, talking, cooking, cleaning etc) or energy neutral (easy reading, easy TV, having a massage etc). Each day is scored in terms of time spent doing each activity and balanced out so energy input equals energy output. Everybody has their own balance. But one can quickly see if too much has been done on any one day, in which case a balancing is necessary. Doing it like this, on a chart, takes the guilt out of resting. It simply becomes a necessity like eating or drinking.
I can recommend Calibre Audio Library which is a registered charity providing audio MP3, CD or USB stick versions of books to the chronically sick.
CFS is defined by two symptoms - poor stamina and delayed fatigue. Actually if we overdo things, we all experience these symptoms! The point here is that there is a whole spectrum of CFSs - from those professional athletes who cannot do their marathons in less than 2 hours 12 mins, to sufferers who are bed-ridden. The principles of treating CFS also apply to normal people who wish to function at their most efficient!
Some CFSs can manage full time work, but very often are operating "on adrenaline" and crash when they give it up. This crash can last several weeks or months. Many can do some part-time work - in which case afternoon work is the best. Don't try to change the job you are in - never resign or you will lose valuable rights. I am happy to give sick notes, write to companies/bosses, do letters for early retirement and do supporting letters for DLA/PIP and ESA forms etc. I never used to charge for these letters, but because there is so much paper work now, I make a charge reflecting admin/time costs. Regarding Letters of support for DLA,PIP ESA etc, please email Caroline
If you work to your limit, then you should do very little outside work - spend the evenings and weekends resting.
The people who get CFS are those who "burn the candle at both ends". They hold down a demanding job, care for a family and are often active sportsmen/women. I see many top athletes with CFS - professional footballers, England cyclists and swimmers, decathletes, many county badminton, hockey, cricket and squash players and several quality marathon runners. These people are the very ones who find it difficult to ask favours of others. To recover you must:
- Ask other people to do things.
- Stop being house-proud.
- Get a cleaner and dish washer.
- Simplify your life.
- Accept offers of "meals on wheels" from others.
- Standardise shopping lists so you don't need to think each time.
- Arrange for as much food to be delivered as possible - e.g. have a standing order at the green grocer for £10 worth of fruit and vegetables a week, arrange the same with the fishman, with the butcher, milkman etc. Many city areas have organic food delivery. Shop online!
- Have standard menus every week so you don't need to think about what to eat.
- Choose foods requiring minimal preparation.
- Take advantage of a washing machine and drier.
- Give up ironing - a nonsensical, energy sapping waste of time and energy. Ironing came into fashion to kills nits and fleas in the seams of clothes and had a purpose once! I don't iron, but then I always was, and always will be, a scruff!
This seems like a perfect opportunity to include some more wisdom on the subject of pacing yourself. I am grateful to yet another CFS patient of mine, Sylvia Waites, for sharing these guidelines with me - and you!
THE TEN COMMANDMENTS FOR REDUCING STRESS
- Thou shalt not be perfect or try to be.
- Thou shalt not try to be all things to all people.
- Thou shalt leave things undone that ought to be done.
- Thou shalt not spread thyself too thin.
- Thou shalt learn to say "NO".
- Thou shalt schedule time for thyself, and for thy supporting network.
- Thou shalt switch off and do nothing regularly.
- Thou shalt be boring, untidy, inelegant and unattractive at times.
- Thou shalt not even feel guilty.
- Thou shalt not be thine own worst enemy, but thine own best friend.
For those who want to try to work out their optimum level of activity scientifically see Managing Energy Levels In CFS - systems analysis approach.
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