To Pace, or not to Pace? that is the Question

Very early on in my illness I was advised to ‘pace’ myself. Which very simply means: don’t do more than you can cope with. Pacing is one of the main pieces of advice given to CFS/ME sufferers, but whilst it sounds simple it is actually quite difficult to do. I think most of us like to finish a task before we sit down with a cup of tea. However when pacing, you must sit down and rest before finishing the task and then go back to it.

In the first few months of my illness I did an experiment to see what happened if I continuously pushed myself to do things. I tried pushing through the tiredness and the pain. I pushed myself for a week. After which I could take it no more and collapsed into bed, so far beyond the point of exhaustion I didn’t know what to do with myself. But I knew that fighting it was not going to help me. I had tested it – and it hadn’t worked, in fact it set me back a long way, and I was in bed for some time.  For me it was quite easy to decide that pushing myself was not an option, but putting it into practice is not so easy. I know many people with CFS/ME live their lives by pushing themselves to their limit, before collapsing with exhaustion, recovering and then doing it all again.

I am convinced (although I have no real evidence) that continuously overdoing it is detrimental to me and would delay my (hopefully) eventual recovery. So with this thought in mind I set about trying to pace myself. I had fairly mixed success to begin with. It requires a real change of attitude to leave tasks half done and come back to them later, and I can see why people struggle with it. My real breakthrough came when I went to some sessions for CFS/ME sufferers at the Royal National Hospital for Rheumatic Diseases (RHNRD). They gave me some fantastic practical strategies I could use to control and monitor my activity. They suggested an activity log that you coloured in differently for high energy activities, low energy activities, rest and sleep. Each person decided what was high or low level for them. Rest meant not actively doing things like browsing the internet or watching TV, but maybe sitting quietly with a cup of tea or listening to music. Everyone had to work out what was a suitable amount of high level activity per day for them. This was half of what they could do on a good day. The aim is to intersperse high and low level activities with rest throughout the day. You can see one of my better pacing weeks below. Ideally some of the blocks of yellow should have been broken up a bit more.

The CFS/ME service at the RNHRD have very kindly allowed me to include a blank copy of the activity log below if anyone wishes to use this to help with pacing. Or contact me through the comments section or facebook page and I can email you a copy.  There is also a copy available here with some more information.

Having established a baseline for high energy activity you can monitor how much high energy activity you do each day. And then you can gradually build up. So say you can do four hours a day (in a sensible and paced way with rests in between) after two weeks of doing this without any adverse effects you try adding on 10 or 15 minutes, if it’s ok you do another two weeks and then add on a bit more. And you just keep doing this. If you have a setback, you get a cold or something stressful happens, just reduce the baseline to a level that is ok and start gradually building up again. 

I have to admit that as my energy levels improved I’ve relied less and less on the activity log. But when my baseline was only two hours it was very useful. It also helped me develop a feel for what levels of activity were ok and what was too much. 

Action for ME have more information on Pacing here.

We All Need Our Beauty Sleep

One of the ironic things about CFS/ME is it makes you very tired, but unable to sleep. It’s very frustrating. I always think if I could sleep a bit better maybe I’d feel a bit better. But getting a good night’s sleep has always been difficult for me at the best of times; I’ve always been a bit of an insomniac. And since developing CFS/ME things have only got worse.

This is one of the most common symptoms of CFS/ME. And in some people it can become so problematic that they have ‘sleep reversal’ which essentially means they go to sleep in the early morning and wake up in the afternoon/evening. Fortunately I’m still on the same time as everyone else, but I could see how sleep reversal might happen. You go to bed later and later because you can’t sleep. Until one day you’re going to bed when everyone else is getting up.

I’ve always been pretty good with ‘sleep hygiene’ so just putting that back in place was the first thing I did. Sleep hygiene is just a series of things that you can do to help promote good healthy sleep. For example not reading or using a phone/computer whilst in bed – keep your bed for sleeping in. If you do things in bed where your brain is active, your brain gets confused and doesn’t realise that it should be turning off when you are in bed. Also, not drinking anything with caffeine in after six o’clock. Not eating your evening meal too late. Not using a computer in the hour before you go to bed (I’m really bad at this). Going to bed at the same time and getting up at the same time are also really important. I really like reading in bed, but I know if I do it regularly my sleep suffers, so I try to just do it very occasionally and randomly, and that seems ok.

So having put all the sleep hygiene measures into practice I still couldn’t sleep. Lying in bed absolutely shattered but unable to sleep is very annoying and distressing. You know you need sleep, but it just doesn’t happen. I talked to my doctor about it and as most doctors aren’t keen on prescribing sleeping tablets (they are generally addictive) she suggested I try taking some paracetamol before bed. For a while that helped, but the effect seemed to wear off. Next I tried taking chlorphenamine (Piriton) which is an antihistamine for treating hayfever and other allergic reactions. It has a side effect of being very sedating. And I did find it helpful for a while. In the end I started taking low dose amitriptyline, which is an antidepressant, but at low doses is useful for treating nerve pain and is also very sedating, so it is recommended for treating the sleep issues involved in CFS/ME. In fact it is considered the most effective way of dealing with the CFS/ME sleep issues. It makes me quite drowsy in the mornings, but I’m pretty drowsy anyway, so it’s difficult to know how much is the amitriptyline and how much is me. But the main thing is I sleep, often pretty well. The sedative effect does seem to have reduced with time, but it’s still effective enough to mean I get a decent night’s sleep for five out of seven nights. 

The other thing that has been very effective for me is Cranial Osteopathy. This has given me a dramatic improvement in my sleep patterns. It has helped me immensely, although the effect does wear off a bit a few weeks after treatment. 

The final thing that I have noticed is quite subtle. If I do too much I sleep badly and if I do too little I also sleep badly. I need to make myself tired, but not overdo it. This is an extremely hard balance to strike. In terms of my post about Energy Budgeting I need to spend all the money available to me exactly, with nothing or just one pound left over. If I am overdrawn I’ve overdone it and will have trouble sleeping. I’m slowly getting better at this balancing act, now that I am aware of it, but it’s not an easy thing to achieve.

‘[Sleep is] the golden chain that ties health and our bodies together.’  - Thomas Dekker