Managing ME

People often assume that medicine can cure M.E, or at least keep it under control. Unfortunately, they are wrong. While I can and do take many medicines to treat pain, insomnia and other symptoms, none of them will cure me or help me keep the fatigue at bay. The main symptom of M.E. for most people is Chronic Fatigue. The World Health Organisation says of this:

“Chronic fatigue syndrome (CFS) is a clinical diagnosis characterized by an unexplained persistent or relapsing chronic fatigue that is of at least six months’ duration, is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction of previous levels of occupational, educational, social, or personal activities.”

The important parts to note here are “not alleviated by rest” and “not the result of ongoing exertion”. The result of this is that when someone suffering with M.E. tries to do something important – such as going for a compulsory interview at the job centre – there will be a payback for that activity which will cause them a disproportionate amount of fatigue as well as many other symptoms that they might suffer from. The payback may not hit straight away, or there might be several stages to it, and it can last for days or weeks. Stress often has the same effect as physical activity, and can result in the same payback.

I have found only one successful way to alleviate these problems and keep the fatigue at bay, and that is pacing. When I was a patient at the M.E. clinic at Oldchurch Hospital back in 2005, pacing was the most important thing that they taught me, and in fact getting pacing right was the bulk of my treatment there. Pacing played a large part in getting me back into work at the end of 2006.  Now that I have had a serious relapse and have been well and truly in the “severe M.E.” category for a few months, I need to re-introduce pacing so that I can have some chance of getting my illness under control again. In fact, I should never have stopped pacing at all. For most sufferers, M.E. never really goes away, and without careful management it will strike back with a vengeance.

What is Pacing?

“Pacing is a technique used by many people with M.E. Pacing is about learning what activities your body will tolerate or cope with, without causing a relapse or a set back. It’s about taking a positive attitude to your recovery but discovering and recognising your limitations.” (Definition from action 4 me)

“Pacing is sometimes called adaptive pacing therapy (APT). Pacing is a strategy in which people with CFS/ME are encouraged to achieve a balance between rest and activity. This usually involves living within the limitations caused by the illness, but having some limited types of activity alternating with periods of rest.” (Definition from patient.co.uk)

The most important part of pacing is getting the right amount of rest. The M.E. clinic helped me divide my day into short periods of rest and activity. Every one to three hours of activity would be followed by half an hour of rest. Rest, in people with M.E. meaning lying still, not looking at anything or listening to anything that requires thought, and preferably not thinking about anything. Reading, television, radio and thinking can all be tiring to someone with M.E. Hell, I list sitting on the sofa quietly as an activity, not a rest! Not only that, but I was told not to sleep during rests. Sleeping in the day makes it harder to sleep properly at night. In my case I take a long time to wake up and recover from sleeping no matter when it is, so I definitely want to avoid sleeping in the day. To help me with my resting (and getting to sleep) I was taught breathing exercises and relaxation techniques that calm the mind down.

Some suggestions for achieving relaxation, taken from my hospital notes:

  • Soft, ambient music
  • Guided relaxation techniques such as:
    • Visualisation or guided imagery
    • Progressive or physical relaxation
    • Autogenic techniques
  • Diaphragmatic breathing
  • Warm bath/aromatherapy
  • Meditation

I was told to position myself very carefully so as to support all my limbs and joints for maximum rest. Here are some examples from the notes that they gave me. Note that everything is supported with pillows or cushions. That makes things hard for someone like me who can get very restless and want to change position a lot.

Rest position: crook lying
Crook lying
Rest position: side lying
Side lying
Rest position: long sitting
Long sitting

These are the techniques that I must start using again.

  • Limit each activity to an amount I can deal with without pushing through
  • Rest after each activity
  • Adopt relaxing positions while resting
  • Use breathing and relaxation techniques to clear my mind
  • Not sleep in the day
  • Try not to get so obsessed with anything that I spend too long on it at once
Because I have very little self control, I have made a new timetable which includes appropriate length activity and rest periods. I’m rubbish at stopping for rests, so I have put four rests into my day but it might have to be more. It is important for me that I stick to the timetable as closely as possible since I have a tendency to get absorbed in things and suddenly notice that I have been going for 16 hours and am now dead. (Probably.) The idea is that I smooth out the level of activity to make every day contain the same amount, but the timetable will have to be flexible to some extent because some days I might not be able to achieve even that level of activity. I might have to move getting dressed to later in the day, for example, or take an extra rest.
An example weekly plan for an ME patient
An example weekly plan for an ME patient
Once I have found a baseline of activity that I can keep up I can then experiment with slowly adding more activity and introducing exercise in to my routine. I need to build up the pace slowly and carefully, never pushing too far and causing relapse, but not letting myself slack either. Keeping going and not going too fast are both very important. I was taught all of this in 2005, and with the help of all of these techniques I was able to slowly regain enough control over my body to go back to work at the end of 2006. I was lucky though; many people are not able to regain that much of their health even when they are perfect at pacing. And ultimately, I got lazy and let the pacing slip. If I had still been keeping up a (less strict) regime of rests while working I might not have got quite so ill this time round.

Stop the world, I need a rest!

While I am sick at home the world doesn’t stop. There are weddings. There are big shows, music festivals and other events. There are protests that I want to attend. There are real-life meet-ups for groups that have been chatting over the internet. My intended schedule for the next month is hectic: First it is the Prescott Bike Festival, to raise money for Blood Bikes. The following weekend some friends are getting married, 180 miles away from here. The week after that, we’re up in court for non-payment of council tax. (Which we disagree that we owe, due to benefit chaos caused by attempting to do the right thing.) Over Easter my wife’s parents will be visiting, and we will have a big dinner together with my parents. The weekend after that I am visiting Brighton for the weekend to meet up with other politically aware people I talk to on twitter. Then there is a gospel choir performance a few days after that. On top of all this, I have jobs that I need to do such as some work on my wife’s motorbike. Oh, and I’m moving house in the next two months.

It just isn’t going to happen like that.

At the moment I can spend around eight hours per day out of bed, and not every day. I can’t predict when I can get out of bed, or when I can do anything that is expected of me. On many days I can choose to either have a shower, OR to wash the dishes, OR to do other things that I want to do. Given that, how can I do any of the big things I just listed? In reality, I have to prioritise. I have to choose what is viable, and what is really important to me. I have to acknowledge that a really big weekend will wipe me out for a week afterwards, likely leaving me unable to even get my own food and drink and struggling to reach the bathroom. Out of all that I listed above, the bike festival will depend entirely on how I feel that day, it is not practical for me to get to the wedding, since the travel and sleeping on a friends floor will destroy me, and I can’t afford it anyway. The visiting family, I can just about handle as I will disappear off to rest lots while they are here. The trip to Brighton, I am going to manage if it kills me. Unfortunately, it just might.

This is the reality of long-term sickness and disability. This is #disabilitynormal