Our advice on getting organized, stricter pacing and tackling delayed reactions in ME

This builds on advice by Dr Sarah Myhill published in "Emerge" Spring 2010 (Australian ME Magazine)

by Alison Bailey, ME recoverer and support leader

Rest is key to getting better from ME as all sufferers report that exercise which covers mental, physical, imaginative, or emotional energy output makes symptoms worse. In ME, I found to my astonishment that the concentration required for prayer is very strenuous and had to do it lying flat. Also at my worst, the concentration required for typing was too much (I did not have enough energy to put right my many typos either). Being able to type properly, was the first real sign of being on the mend.

This effect distinguishes ME from depression since exercise tends to improve the condition of people with depression. The problem in ME is that the desire remains (unlike depression), but the strength and endurance is not there. There is this difficult and sometimes dangerous mismatch which needs expert understanding and management.

Getting it wrong is self defeating

ME people tend to push themselves to what they feel is that day's limit of energy to make up for lost time, thereby undermining their chances of recovery. The type of personality who develops ME seems to be a "giver" and "trier" giving 150%, so there is a conflict between personality type and treatment. I hold that diet and allergy play a key role in getting better, but undermining the improvement from those, through over-exertion is really something to avoid. It's like going two steps forward and five back. One must get off the roller coaster of "boom and bust" in ME and ration activity to a similar level each day - enough to keep muscles in good shape but not enough to use all your energy.

Dr Sarah Myhill claims to knows why people with ME get delayed fatigue. I quote her : "it is because they use energy (ATP) faster than they came it so there is a build up of "ADP. Some is shunted into "AMP" which is only recycled slowly, if at all". Dr Myhill's recent research suggest that in ME, the mitochondria's normal ability to produce adenosine triphospate (ATP) and recycle adenosine diphospate (ADP) or adenosine monophosphate (AMP) to replenish the supply is compromised. Cells need to manufacture new ATP from D-ribose - but this only happens over 1-4 days. During that process, cells can get a small amount of ATP from glucose but this produces lactic acid, which cause many of the muscle symptoms and can cause long term muscle damage (resulting in permanent damage to muscles and nerves).

What do you have in your "bank of energy"?

In any bank account you can only spend what you put in there and you have to balance the input and output. It is also important to know how much you have in your account at any one time, to know whether to buy something or leave it until next month.
It is vital to work out what you can and cannot do, each day.

The example given is to imagine a normal person with one thousand pounds (money) or dollars energy. Those with ME have only 100-900 dollars/pounds, depending on their level of ME. They can only spend dollars in units of tens throughout the day, and then rest to "recharge" like a battery. If they get symptoms while they are doing something, it means they are doing too much. But with careful pacing they can end up doing more.

Siestas are good for you and afternoon sleeps for elderly and babies (and people from Italy) are normal. I know as I am married to someone brought up in Italy. They are called "power naps" and can be just 20 minutes long to be fully re-energized.

What counts as"rest" in ME?

Resting means complete rest from reading, calls, computers, talking and TV. Resting horizontal reduces the work the heart has to do. Caffeine helps the body scavenge AP so tea, coffee or dark chocolate can be helpful. However, I could not have coffee in ME due to excitation of the heart. I avoid it completely for that reason.

Rest fully on days you feel a bit better - it is like putting money into a savings account which help to get you better as it builds up. Overdoing it is like going overdrawn - paying interest on an overdraft - you pay interest for your errors. Just because you feel well one day does not mean you can overdo it the next.

Do things in short bursts. e.g. in slots of activity and take a rest afterwards. These periods can lengthen, but never spend more than 50 minutes at a computer - that is advice to people who are fit too. I can climb steep hills, without Nordic walking poles, if I rest after 20 steps (not even sitting). I often walk for a count of 20, then rest for a count of 20 etc. With Nordic walking poles I don't even notice hills at all now and have no reactions. I can also now carry weights such as a laptop and lunch bag, so long as I take rests e.g. I carry it for 100 yards then put it down.

It is sustained muscle drain that is really dangerous in ME. Of course, I would never try to pick up a sofa or something like two laden shopping bags, at once.

Rationing out your life

Arrange you life so that every day has about the same level of activity. Do only 70% of what you think you have energy to do. Go on the diet set out on this website. Sleep, be creative if you feel it is helping, listen to music (see my site), being with non-draining people etc.

Vary activity to keep all the parts of you brain in trim. Vary processing information (left brain) with listening to music (right brain). Ration TV watching. Design exercise that uses different groups of muscles, through stretching - without weights e.g. cooking, dressing, gentle walking, gentle cleaning etc. To determine whether what you are doing is the right level of activity, keep a note book on how you react the next day. I am almost completely better now, but I recently painted a room and felt terrible the next day, emotional etc. I had overdone lifting my arms and pushing - I had been too keen to see "the final effect".

Identify your "enemies" in ME

Treat impatience, emotionality, rampant curiosity, desire for new experiences and what the Church calls "carnal desires" as potential enemies in ME. This is a time to learn restraint, calm, reason, and the control of passions and desire. It is a chance to "master ones lower self" and become a person of true order and "reason".

Be rational about "energy crashes"

Separate activities into energy giving, energy draining and energy neutral. Mine are like this:

Energy giving: sleep, laughing, lying flat and "shutting down" for 20 mins, taking garlic, listing to great music, reading a good book (I can do that easily now), eating salads, making fresh orange juice, being close to nature, birdsong, watching nature programmes on TV and good films, getting letters from friends, singing and attending church

Energy draining: standing up for very long e.g. washing up, reaching upwards for long, getting cold for long, too many demands at once, climbing hills, carrying weights, using muscles too much, loud noises, violence, overwork, rushing to get dressed in time, driving at night (due to high concentration), interpersonal conflict, going on subway and underground

Energy neutral : work, eating, praying (now, but when I was very ill if was v draining)

Types of "crashes"

-There is a crash that can happen within minutes e.g. while climbing a hill and you feel very faint with weak legs
-There is a crash that can happen two hours latter because you ran for a bus (the most dangerous type, I think)
-There is a crash that can happen the next day
-There is a crash that can happen after several months of high stress (which could case a long term relapse)

If the last is the case, don't resign due to relapse but simply ask for your workload to become adjusted to your disability: you have considerable rights in the workplace under disability law.

Get Better Organized

Don't burn your one and only "candle" at both ends - it is an abuse of your body. Ask favours from others too - life should be about give and take, not all about you giving. So:

-Ask others to take their fair share. One way of doing this is too keep a diary of the hours you are active and all your activity each week and get your partner to do the same and compare the number of hours of rest you each have. If it is not equal or in your favour, as someone with a disability, then transfer activities It should be fair and respect you illness.
-Lower your standards e.g. being perfectly turned out, "house pride", wanting perfection. This does not ultimately contribute to life which is about good relationships, really.
-Get a dishwasher, and if you can afford it a cleaner to come in
-Simplify life e.g. keep meal recipe cards in a box file and take them randomly each week to avoid thought about food.
-Keep standardized shopping lists.
-Visit the supermarket once a week and go systematically down each aisle. Bees collect pollen systematically. Dont flit about wasting energy. Be rational.
-Accept meals from other e.g. on wheels
Arrange for food to be delivered if you cannot shop
-Use the freezer and microwave so you don't have to cook every night.
-Choose ready meals at the end of a hard week even if they cost more,. On Fridays, we have Marks and Spenders food which is gourmet ready prepared if rather costly. Not only does it give me a rest from cooking after a week's work, but it perks one up too.
-Give up all ironing e.g. wear teeshirts or drip dry shirts.
-Put in pace a routine by the clock. The body likes this. Sleep and east regularly. Choose a bedtime and stick to it.
-Get up at the same time each day without being rigid as you will need more rest if you are very tired.

The most effective people are orderly and live by a routine. The Italians think that if you do not eat at a certain time each day, your digestion labours.

Time and Motion analysis

There used to be time and motion experts who analysed how to make businesses more efficient. Try doing this on your own life. Where can you cut waste including wasted energy? Be flexible and try different "models" of living.