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Action for ME
InterActions Monthly Update
August 2000
Everything you need to know about PACING
BACK TO BASICS - Pacing (from InterAction 27)
Pacing: Watch your overdraft!
In her recently updated book ME/CFS: A Practical Guide (reviewed in InterAction 27 and available from AfME website at www.afme.org/uk/SHOP ), Dr Anne MacIntyre gives advice on pacing. Here are some extracts from her new book:
(p124):
“Having ME/CFS has been likened to being a battery that cannot hold its charge. The battery may appear to be fully charged, but the light becomes dim very quickly when the torch is used. Another analogy I find helpful is to compare your store of energy to a bank account. When you are in overdraft (negative bank balance) you cannot spend energy or money without increasing the overdraft. When your bank balance is positive (or ‘in the black’ as opposed to ‘in the red’), you may feel confident about spending money.
But if your bank balance, though positive, is only £50, not £500, then spending money rashly quickly puts you back into overdraft. If you then continue to spend money, the day will come when your bank stops issuing you with any. Similarly, if with ME/CFS one day you feel better, and think you have a lot of energy, so go out and spend the little you have, you will quickly be exhausted. If you overspend your energy day after day, your body will eventually call in the overdraft and you may go into serious relapse and be unable to move.
(p125):The operative word for getting the right balance between exercise and rest, at any stage of the illness, is pacing. (p136):The most important rule of pacing is to stop before you become exhausted.
THINGS TO DO TO HELP YOU COPE WITH THE ILLNESS (p126)
Organise your lifestyle to allow more rest, and better pacing of activity
Stop activities which are unnecessary and wasteful of your energy
Improve the quality of your sleep [see ‘Tired but Wired’ in InterAction 25]
Accept your limitations
Get help and possibly treatment for depression, if present
Improve your nutrition, avoid low blood sugar [see InterAction 24, p15]
Avoid chemical pollution
Treat any allergies
Try and sort out sources of anxiety such as lack of money. Apply for any financial benefits you may be entitled to [call AfME welfare benefits lines for more advice]
Do not be shy about asking for help from friends or neighbours
Apply for things like walking aids to make life easier [see Boots’ ‘Active and Independent’ catalogue, £1 from UK stores]
Contact other people with ME/CFS for support, if you feel isolated, but do not compare yourself with others. Some will be more ill, some better; all have ups and downs like you. [Action for M.E.’s Head Office have a list of local UK groups]
(p127): In learning to cope with ME/CFS, half the battle is won if you can accept that you just cannot live at the same pace as you did before you became ill. To do this you need to realise that your worth is not measured by achievements in terms of being busy, earning money, athleticism or even being good at anything.
For those in partial recovery
(p324)…If it seems unrealistic that you will be able to return to your former job in spite of partial recovery, then consider a change of direction to something that is maybe less demanding physically, but which can utilise your skills in a new way. In summary (p325):
Your health must be the first priority
Accept that your presence at work is not essential
…Explore the possibility of part-time work, with the flexibility to rest if you need to
Do not squander energy on unnecessary activities outside of work
Planning for a rest during the day…may allow you to stay in work
(p125) The advice offered is not aimed at achieving a total cure, but rather to lessen the severity, encourage more remissions, and help you to achieve some gradual recovery and to live more comfortably with the condition…(p127): Of all these suggestions, physical and mental rest balancing rest with activity, and good nutrition are probably the more important.”
From Zoe Williams’ A-Z of ME Tips (£1 from Action for ME’s London office or free at www.members.aol.com/ZoeWill/index.html ):
Pacing
Split tasks into small manageable chunks and do a bit at a time. Think about how each activity might be done in a more energy efficient way; for example many things such as ironing and teeth brushing can be done sitting rather than standing.
Prioritise which jobs actually need to be done and do any vital things first in case you run out of steam. Use equipment which will save your energy such as a wheelchair. Use other people's energy and try not to feel shy about asking for help. If finance permits, employ people to do domestic jobs. You can be selective e.g. employ someone to dig the garden but you may do some of the lighter work such as planting out bedding plants.
Alternate activity and rest. It is better to listen to a talking book for half an hour, have an hour's rest, then listen to another half hour, than it is to do an hour in one go and feel very ill. A countdown timer will remind you to rest and may help to avoid doing too much, especially when doing something you enjoy or want to complete.
Also alternate different types of activity, particularly physical and mental tasks, so as not to overuse one faculty (e.g. brain, legs, arms). Many people find it helpful to keep a diary of their activities. Use it to learn about your individual illness, how much you are able to do and what things make your M.E. worse. Listen to your body and respect what it is trying to tell you. Never be afraid to decline an invitation or visitor or to refuse a request if you are not feeling well enough.
Try to be flexible and change plans according to how well you are. Plan big events carefully, preparing things in advance so that you can manage your illness as well as possible. Hunting for scissors or keys wastes valuable energy, so have homes for different items and try to keep organised.
When trying out a new activity, start by doing it for a short time that you know you can manage. If it is OK experiment with doing it for a bit longer next time, cautiously testing your limits. Be realistic about your limitations and don't over-estimate what you can do. It is sometimes recommended that people with M.E. should do only about 80% of what they think they can do. This leaves a bit of leeway for unpredictability and may actually give the body a better chance of improving. Cooking; Resting; Stairs; Wheelchairs MEA, 1A-Activity & Rest
Pacing
by Ingebjorg Midsem Dahl (written at age 18 in 1997)
You wake up one morning, knowing it will be a good day. You suddenly remember all the things you were too ill to do last week. You begin at the top of the list and before evening you are close to collapse. You spend the next two days in bed. On your next good day, the story repeats itself.
Does this sound familiar? We all know this frustrating roller coaster. There is, however, a way of stopping it. It is not a cure and it isn’t easy but chances are it will improve your quality of life considerably. This method is called pacing.
Pacing is based on several principles:
1) Listening to your body
2) Alternating rest and activity
3) Doing one thing at a time
4) Choosing low-energy activities
5) Using energy-saving devices
Listening to your body
This is perhaps the most important part of pacing.
Many PWC’s push themselves all the time. ‘I just have to walk to the next lamp post’. Most of us do it in a desperate attempt to keep up with our friends but some believe that exercise improves their CFIDS or are scared to become unfit. After a few months or years, we find out that exercise doesn’t make us better, on the contrary, it makes us worse. But then what? The doctors can’t give us a magic pill and alternative therapies have few lasting solutions. There are, however, coping techniques that offer relief and listening to your body is effective. Most of you will be familiar with the ‘I need to lie down FAST’ -feeling and other near-collapse sensations. If you think back, this feeling will usually have been precipitated by a least one warning sign - for instance any increase in symptoms. The trick is to stop whichever activity you were at the first warning sign.
After a period of rest you will then be able to do something else. Looking at symptoms as warning signs and not just a nuisance may seem weird at first but when you get used to it, it becomes a reflex and it keeps your level of symptoms down to a minimum. A Danish PWC wrote: ‘My back begins to hurt after a while when I sit on a straight-backed chair. Before, I would sit until the pain was so severe I had to lie down and it would take a long time before it went away. Now I lie down immediately when the pain begins. I have less pain and I don’t have to rest for as long’. In the beginning, you may have trouble reacting to the ‘small signs’ and be unsure about how long you can perform an activity. There is, however, a simple way to find out.
First, choose the activity you want to assess. I will use listening to music as an example, as this is something most of us can do. Second, take an objective look at your activity level. Will 15 minutes be too much - or could you manage 30? We decide the 15 minutes is enough and you listen to music for 15 minutes. How do you feel afterwards? Worse? If you feel fine, try the same amount of time tomorrow and reassess. If you feel worse, 15 minutes was too much. If you feel better tomorrow, try it again with just 10 minutes. When you have found out how much you can listen to music and have managed that amount without exacerbation every day for at least a week, you can try increasing. Try five minutes more one day. If you feel worse, go back to your previous level, if you feel fine, do it again tomorrow. Don’t increase the activity further until you can do it every day without getting worse. And please, don’t cheat yourself! That will just give you a relapse.
This method can be used for all activities. Buy a planner and write down how long you stay at each activity every day. This way it’s easy to monitor progress. Don’t forget that listening to your body also involves willingness to cut down on activities when you feel worse. It’s better to cancel a bad day and feel fine again the next, than to have many bad days in a row.
Alternating activity and rest
You might have asked yourself: ‘What do I do when my body tells me to stop whatever I was doing?’ Well, you rest. What is rest? Resting is lying down with your eyes closed in a quiet place. Watching TV, reading and listening to music are activities. Now you might think: ‘But that makes resting BORING!’ Well, yes, it does. This is where alternating activity and rest becomes important. Let’s assume that you can manage an hour of activity every day. If you do that hour all at once, you will be bored stiff for the next ten hours, probably being really exhausted from the activity. It’s much smarter to do 15 minutes of letter writing, 30-60 minutes of resting, 15 minutes of listening to music, rest again etc.
This also gives you the opportunity of assessing your activity level on an hour-to-hour basis. After 15 minutes of an activity, you might like to go on but after a few minutes of rest you might change your mind and think that resting was an excellent idea. If you are severely ill, your activity periods will be short (five minutes) and the rest periods in between much longer (60 minutes or more). When you improve, the activity periods will be longer and the rest periods shorter. Don’t make the rest periods too short and don’t begin an activity before you feel up to it. Again, cheating yourself is bound to fall back on you. You might choose to look upon ‘alternating activity with rest’ as ‘activity as a reward for boredom’. The English doctor Darrel Ho-Yen has good experiences with this in his patients.
Doing one thing at a time
My activity level is quite high but I can’t concentrate on even writing a postcard when listening to music. One could say that doing two things at a time takes up twice as much energy. You will feel worse much faster. Instead, one should listen to music, rest and then write the postcard. Your energy is precious, as you have so little of it and if you spread it out evenly over a day, you will enjoy it much more. This principle can be followed into the extremes. You must choose how rigidly you wish to do it but it is quite effective, so give it a chance.
Choosing low-energy activities
This part will be hard for many of you, especially if you were very physically active before your illness. How can one play soccer if one can hardly walk around the block? Some interests can be continued with a little bit of imagination. I learnt roller skating by rolling slowly a few meters down the parking lot, resting on a fence then rolling a little again. I did skiing, skating and swimming that way. Of course I couldn’t do it very often, I didn’t get very good at it and I of course envied the other kids who could go on for much longer than I but I got to try the stuff without severe relapses. Today, when I’m 18, I can look back on my 14 years of illness and say that I didn’t lose my childhood, it was just different from the others’.
You might not have the guts or self-control to stop sports-like activities before you collapse. The solution is of course to find new hobbies and interests. Try to look at this as an opportunity to learn new things. When finding new hobbies, it will be a good idea to choose some that can be done for short periods of time. Some crafts may take you so long to prepare that you are exhausted five minutes into the actual work. It’s better to find something that can be taken up and put down when you need it. If the activities you choose are low-energy enough, you will still be able to do them on a smaller scale, if you relapse.
You might like to do something ‘more serious’ than mere pastimes. With a language course on tape you can learn as little as a sentence a day. If you have trouble reading, books on tape are available and you might even be able to get a ‘tape friend’ instead of a pen friend! Watching TV and videos for much of the day may be tempting but my own experiences with these are that they are powerful stimulants. You don’t use your body but your mind, eyes and ears are constantly at work at the same time. Books on tape stimulate only one sense. Computer games can be dangerous, too, if overused. I once reactivated a virus by playing a computer game too much over four days and ended up with a nasty rash all over my body. The last spot of rash didn’t disappear until several years later! Use you own judgement and most importantly: Listen to your body. It will tell you how much ‘electronic stimulation’ you can handle.
Using energy-saving devices
The point of energy-saving devices is of course to save energy, especially on things you do often. I can only give general advice on this point, as different things help different people. Try making a brainstorming session, alone or with someone who knows you well. Go through what you do each day, what kinds of symptoms you get from it and think of different ways of doing these things. Be creative. Remember that some devices and techniques may have drawbacks. An example is a hands-free phone. It will save your arms but then you can talk much longer and talking takes up a lot of energy, too. In cases like this you must use your own judgement. Are you so ill that you can’t use a regular phone? Will you be able to control yourself and not talk too long?
Using a wheelchair
There is one particular energy-saving device I would like to mention: The wheelchair. It is undoubtedly the most hated and most loved of all energy-saving devices. It takes a lot of courage to get it and use it but those who have taken the step, usually never regret it. The wheelchair saves energy because you don’t have to walk. Don’t use that saved energy on pushing the chair yourself! Your arms will get just as tired as your legs. You must also remember that the vibrations from the chair may bother you more than you would first think and the sitting up in itself requires energy. A mall or a school is just as noisy in a wheelchair. When you get a wheelchair for the first time, try sitting in it at home at first. Then try a 10-minute ‘walk’ outside and assess as described under ‘Listen to your body’. Using a wheelchair has to be built up slowly like all other activities.
School
The topic of coping with school is so big it deserves it’s own article. I know that people from several countries may read this article and I don’t know the American school system very well, so I will just mention a few general principles. Generally speaking, there are three types of school attendance when you have CFIDS/ME:
Home tuition - either provided by school, paid for by parents, with parents as teachers or complemented by correspondence courses.
Part-time attendance
Full-time school
Some places it will even be possible to combine home tuition and part-time attendance. This would be useful when you have had home tuition for a while and part-time school seems possible. No matter what you choose to try, it’s very important to build it up slowly. Begin at a level you are absolutely sure you can manage. Also, your school will be much more pleased if you manage to increase the amount of lessons instead of getting worse and worse. Some places it is only possible to get a home tutor for a specific number of lessons per week, for instance five. This may be too much for you. If this is the case, discuss the problem with your home tutor and try to arrange it so that for instance two lessons are just social or with only a few minutes of work. It is very important to have a home tutor you can trust. In my experience, only a few YPWC’s are able to go to school full-time. Don’t attempt this if you have been away for a while. It is better to go part-time to begin with and build it up.
In summary
I hope this article has given you some means of coping with you CFIDS. I have personally had very good results using these techniques, although progress has been slow. English experiences with similar techniques seem to indicate that improvement will come faster the shorter you have been ill. This does not mean that there is a limit, a time when you just can’t improve. It is never too late to begin using coping techniques. Just be patient, don’t force the tempo and please, don’t expect miracles. If nothing else, pacing improves quality of life by flattening the course of the roller coaster and making it easier to plan ahead. Good luck!
Literature:
Moss, Jill: Somebody help me - a self-help guide for young sufferers from Myalgic Encephalomyelitis and their families, Sunbow Books, Sunbow House, 5 Medland, Woughton Park, Milton Keynes, MK6 3BH, England, 1995, ISBN 0 9525783 01, price £14.95
Ho-Yen, Dr Darrel: Better recovery from viral illnesses, (1994, ISBN 0-951109-03-0, £14 to AfME members) Dodona Books, Corriemuir, Viewhill, Culloden Moor, Inverness, IV2 5EA
Collinge, William: Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment, Putnam/Perigree, 1993 (in the UK, WHSmiths’ orderline: 0345 581549)
All books on ME related matters are available via the Action for M.E. website at www.afme.org.uk/SHOP
Action for M.E., Po Box 1302, Wells, Somerset, BA5 1YE, UK
tel. (0)1749 670799
fax. (0)1749 672561
website: www.afme.org.uk
e-mail info@afme.org.uk
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