Pacing, I think everyone with ME will agree, is difficult even for us adults to get our head around let alone get it through to a teen. Teenagers have that desire to “do” and become exceptionally frustrated when sick and they simply just can’t. So when they feel they have some energy they want to spend it all at once, to be able to “do” something they have longed for – spending time with their friends or to go out on a trip, to hell with the consequences! That’s great for when you are in that moment but then when the relapse/crash hits and they are in bed and suffering all that happiness and joy they experienced is forgotten because of the pain and discomfort of the relapse. Life for any sufferer is unfair, but watching a young person suffer and struggle, missing out on the fun, rough and tumble, adventures and excitement of childhood is just devastating.
I have struggled to explain pacing to the girls, it’s merits and long term promises. So far we have been fabulously unsuccessful at implementing it to a point where results can be seen. I am guilty myself of allowing them to participate in something knowing full well they will pay the price later – the worry being that they will not get the opportunity to do x with y again in the future – do you know what I mean?
THEN a very good friend shared this excellent article by Dr Sarah Myhill with me which explains everything we already know but set out so clearly that it makes perfect sense – and perhaps it will help me finally find a way to explain pacing more clearly to my girls and HOPEFULLY then (if we can put it into practice as set out by Dr Myhill, this is yet to be established) we could potentially reduce our episodes of Boom and Bust that we are currently experiencing.
For those of you who are unaware of who Dr Myhill is, she is a UK doctor who is respected for her knowledge and work with ME/CFS patients and has now become a leading specialist in this area. She has helped many people with all aspects of the illness from diet, supplements, symptoms relief and pacing.
I am presuming that by now everyone knows that with ME any form of exercise can have a very negative impact on the sufferers health but what many may not be aware of is that emotional stresses can have equal if not more of a negative impact on health too.
Of all the ME sufferers I have met, including my daughters, they are all people who are full of drive and prior to the illness were active and ambitious people – by no means “lazy” as they are often portrayed. The problem with this is that most ME patients are impatient to “get better” to improve their fatigue levels and so often end up in the boom/bust cycles because they push themselves beyond the limits their body can tolerate. This then also brings forth frustration and disappointment when they then have to stop and rest in order to climb back out of the relapse that the activity has created. Thus they don’t improve – their health stagnates into this cycle. The key to progress and regaining health is to pace – to limit what energy you use and stop all activity BEFORE you have used up all your energy reserves.
What causes this delayed fatigue is a question I wanted answering at the beginning of this illness and Dr Myhill answers my question beautifully – so I shall quote her directly…
“We now know why CFSs get delayed fatigue – it is because when they use up energy (ATP) faster than they can make it, there is a build up of ADP. Some is shunted into AMP, which is only recycled very slowly, if at all.
[Note: Dr. Myhill’s 2009 research paper – “Chronic fatigue syndrome and mitochondrial dysfunction” – suggests that in CFS the mitochondria’s normal ability to produce adenosine triphosphate (ATP) and recycle adenosine diphosphate (ADP) or adenosine monophosphate (AMP) to replenish the supply is compromised.]
Cells have to make brand new de novo ATP from D-ribose, but this only happens very slowly, 1 to 4 days. In the meantime, cells can get a small amount of ATP directly from glucose via anaerobic metabolism, but this produces lactic acid, which causes many of the muscle symptoms.”
The problem with many ME sufferers is that first off, at the beginning of each day, you have far less energy reserves than a fit and healthy person. Then throughout the day, just doing what healthy folk wouldn’t even consider an activity – tasks such as washing your face or cleaning your teeth, deplete their energy quite significantly. Then you have to account for going down stairs, eating, getting dressed etc – quite often by the time a person has washed, dressed and eaten breakfast they have pretty much used up most of their energy reserves for that day. Dr Myhill puts it far more eloquently, so I will quote her again…
“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.
• Furthermore, you are only allowed to spend a few pounds in one session – then rest.
If you start to get symptoms, then you are overdoing things. Often this means you have initially to do less – but with careful pacing you will end up doing more!
I also like all my CFSs to have a sleep in the day, even on a good day. Homo sapiens evolved in hot climates where it is normal to have a siesta in the afternoon. Most people experience an energy dip after lunch. Young babies and older people return to this more normal sleep pattern and ill people should do the same. An afternoon sleep is normal! I do!”
She notes that most sufferers compare themselves to how they were before they were sick – this is unrealistic and will lead to not achieving your goals. Accept what you are able to do on any given day – AND THEN DO LESS. That is the key to pacing – not easy though is it? How many times have you thought that even though you are tired you’ll “just get this done” so that you don’t have to do it tomorrow. That could be the task that tips you over and puts you back into relapse.
Also, I have to clarify that REST means just that – not to do anything at all, just to lie quietly flat on your bed – ALONE in your bedroom too, without any stimulation and relax. This means no mobile phones, not TV, no computers, no reading, no music in the background, no chatting to friends or family – just peace and quiet and time to relax as fully as you possibly can. Those activities I have just mentioned have to be rationed throughout the day and accounted for from your £100 you have to spend. Dr Myhill states that it is important to rest lying down flat on your bed as it makes pumping the blood around your body much easier and therefore is less stressful on the body. She also adds that a little caffeine has been shown to be helpful in this job too – so a little dark chocolate is encouraged, which is a bonus. She also states that it is VERY important that these rest periods are included into your daily programme so to build it into your routine, EVEN on the days when you feel more full of energy than usual, you must STILL take the time out and have this rest period.
The problem is – have you ever tried prising a mobile from a teenagers hand? I swear they are welded onto them!! AND then getting them to lie still and rest without hearing the words “but I’m bored!” “can’t I just have my music on” etc. Sounds such a simple thing to implement but not so easy in practice!
The next part though, is critical to effective pacing. To only do any activity IN SHORT BURSTS – I can hear the ensuing laughter from all parents with children with ME! This is the part I struggle most with as a parent caring for two teenagers with ME, when they have the energy they want to spend it all at once and are hugely resentful of me stepping in and saying “No, you must stop now and rest.” To quote Dr Myhill again she says “You will be more efficient if you do things for 10 to 40 minutes (whatever your window of time is), then rest for the same length of time.”
So, back to pacing – what are the steps…
Reduce all physical and mental activity to reach your baseline – what you are able to do each day without bring on a relapse/crash situation.
Add into your day the regular rest period, follow a good diet that suits your needs (Dr Myhill advises the Stoneage Diet) – we personally follow a high protein, low sugar, low fat, gluten free (where possible) high veg & fruit diet. Taking supplements where advised and any other medications. Get to the point where each and every day is the same, with very low levels of activity which are not causing any detrimental effect to your health – this is your baseline.
NOW this is the start of pacing, very slowly and gradually add in some activity to your day. Add the same amount of activity to each day AND NO MORE making sure that it does not cause any detriment to your health. If it does step it back again a little. When you are able to tolerate that small increase of activity each day without and detriment then step it up just a small amount.
Dr Myhill stresses that the key to this being effective is to VARY the activity you are doing on each day – this is in order to exercise different parts of your body and brain on each day. She also tells us that any visual activity is far more draining for the body than any audio activity. So when planning your activity this needs to be taken into account, for example; watching television would have to be for a shorter period than listening to music.
Physical activity/exercise has to be very carefully managed – initially just gentle stretches and increased only as and when no detrimental effects are experienced. We find gentle stretches in a warm bath or pool (if able) are very helpful as the water supports the body whilst exercising the muscles.
Very slowly and cautiously increase the physical and mental activity – always monitoring if any detriment is experienced. Any post exertional malaise experienced will indicate you are doing too much and so step it back a notch until no PEM is experienced.
A very useful tip is shared by Dr Myhill about managing activity, which she attributes to one of her patients, but is also something our ME Consultant asked the girls to do in relation to the people they interacted with, was to categorise activity into three groups;
This whole process of pacing is to help you find the balance within your day and to ensure that the energy input equals the energy output.
Some people find charting helpful – I am planning on charting the girls activities into the three categories and then planning their day around it – so days where they have appointments need balancing with periods of rest.
It has to be also noted – and something which was very much underlined by our ME Consultant. That when you become sick due to a viral or bacterial illness and have ME, this can in itself cause a relapse/crash situation. So, do not to be disheartened by this setback instead be aware that it will mean that you will have to plan in this situations to go right back to basics with regards to pacing – but to do this only once you have recovered from the illness – then with your pacing knowledge you have to build yourself back up again regarding activities you are able to do in a day.
We have been told that once you have mastered pacing that the crashes will become less severe and frequent because you learn to tune into your body, it’s needs and limits.
The most important message is to learn to ask and accept help and to learn and acknowledge your limits.
It’s not easy I know and I am aware that we have a long journey ahead of us – especially when teenage hormones and stubbornness are involved!
Wishing you all luck on your pacing journeys and will keep you posted on how we get on with ours.