M.E. myself and I: Pacing, thoughts I’ve picked up over the years

Over the past ten years so many ideas with M.E. seem to have changed; afternoon naps, GET, CBT, the Lightning Process to name a few that have gone in and out of fashion with doctors but pacing seems to be one that’s always there and also isn’t offered as a miracle cure unlike some of the others. I have seen a few different versions of it but it seems to boil down to the same thing, resting when you need to and not pushing yourself too much. That last bit is the part I struggle on, especially on good days where I feel like I can do everything or on days where I have to do things and it’s not really possible to rest, you can’t really stop in the middle of a meal out with family and lie down in the middle of the restaurant to listen to soothing music.

I’ve said in a previous post but I’ll repeat it anyway, I am not a doctor and have no medical expertise at all. This post is just what I’ve learned from the past ten years with M.E. and shouldn’t be used as a rule, mainly just as ideas if anything and possibly as somewhere to start for google or asking someone who is medically trained if you haven’t tried pacing.

Some methods I’ve heard of use things like green, yellow and red to show whether something you do has no effect, a little, or a lot after you’ve done it and including a certain amount of each colour in your daily routine depending on what you’re recommended and how able you are to do them. Another method was to label things with ‘cognitive energy’ and ‘physical energy’ and then use this to highlight what you think each activity is and how much each affects you, then work out how much of each you’re doing and how much you should do in a day. These both seem like good methods, I haven’t used either properly though to comment really, the second I did talk to an occupational therapist about four or five years ago but my listening to old TV shows didn’t seem to work very well in it. It doesn’t matter how you do it but I think that pacing is a useful tool for learning to cope with M.E. and manage the symptoms.

The main thing I’ve learnt about pacing is to find a base level, the level of activity that you can manage without it affecting you and causing problems. This base level changes quite a bit for me but I’ve found a fairly good routine of what I can manage in a day without it having a knock on effect the next day. It did take me a few years to work this out though, I’d do more than I should on a good day and then it just knocked me back and I’d be in bed for a week because I hadn’t realised I was doing too much. When I was first diagnosed the neurologist I saw called this boom and bust, I’m not sure if it’s the term they use any more but the graph looks a bit like a heartrate monitor screen with all these jagged ups and downs though not as regular. The idea is to get something more like a straight line, or at least wavy with small changes rather than huge ones.

Talking about overdoing it leads to one thing I learned, and this took some time as well, that people kept repeating but I didn’t truly get for a few years and it was to listen to your body. When we’re ill without M.E. we try to keep going, push through because we know it’s going to go away, even if it’s with the help of medicine. It was hard for me to retrain my brain into not thinking like this, to learn to recognise that a certain pain or headache means I have to have a bit of a rest whereas this other pain means I can do this much more and it’ll mean tomorrow I’m in bed but it might be worth it if this thing I’m doing is important.

Sometimes a trade off or compromise between what you should be doing with pacing and what you actually do has to be found, at least in my experience. I know that going to visit my grandparents in Wales three hours away will leave me in bed for a while but I don’t see them often so it’s worth it, or working towards a deadline for my degree I work later to get it done but will spend a week afterwards in bed resting. I know this is going against everything that pacing says to do but it’s not always a perfect world where you can pace things properly and you have to learn how much each big thing will affect you on the days after to work out whether it’s worth it. I find in these cases if it’s possible then short rests as and when I can help a bit to lessen the after effects, I think 20 minutes is the optimum rest time I was told at one point so your body isn’t getting too close to sleep mode but had enough time to recharge a bit. Fitting ten minute rests here and there, even if it’s taking a pillow and leaning against it in the car and closing your eyes as a bit of a rest, is easier in these situations than getting a proper one.

Resting is a huge part of pacing and I was told that resting should be lying in a dark room, or at least nowhere too bright, with either nothing at all or some soothing music. I know this may work for some people but for me the relaxation music and sounds just make me restless and my mind wanders so I get no rest at all. I think that if you can relax to them then this is great, use them and there are a lot of apps around for your phone for free that have great nature sounds and quiet music but if these don’t then I found some other suggestions that work for me and don’t seem to sap any energy at all. I’ve found that laying down and listening, not watching, an old TV show I know back to front is a good way, have some headphones in and a DVD player, if possible a laptop where you can actually turn off the screen, and listen. I’ve always found that having Friends on in the background when I studied for GCSEs helped, I don’t do well in complete silence or being able to hear random sounds every now and then as I end up concentrating on them so something where I can hear this in the background and have watched so many times it’s almost white noise really helped.

I found over the past few years that ASMR videos help me relax a lot, sometimes too much as I can fall asleep, though a lot of the channels I like are more crinkly paper and opening things that aren’t technically ASMR channels, RR Cherry Pie is a good example of this. If you haven’t heard of ASMR, I hadn’t until youtube and then only by accident, it’s some kind of automatic response some people’s bodies have to certain noises, like crinkling bags, rain, whispering, scratching and anything like that really. I think that sentence is about as vague as it can get but to be honest I don’t really understand it that much apart from the fact it makes me feel nice. I get a feeling almost like pins and needles but nice down the back of my neck and my arms and it’s really relaxing if I sit there and listen to or watch these videos. It almost feels like I imaging being hypnotised would feel like, where you can feel your whole body relaxing without you having to do anything.

I think the most important thing about this pacing is to make sure you get the balance right for you and listen to your body. Also sometimes you have to be selfish. This probably sounds weird but I found that when I stopped trying to please everyone else and go and do everything because I felt bad saying no then I managed to improve my pacing and get it more even. Learning to speak up and say when we need a break is another thing I learned, though I still find that bit hard today sometimes. We become good at hiding when we’re in pain or feeling so fatigued we should be lying down so others may not notice, especially if they’re not with us all the time, so saying when you need to rest on a bench or go to another quieter place is important.

This post turned out longer than I intended, I hope it’s not too rambly and that at least some of it has helped someone. Have you tried pacing and heard of any other pacing techniques or have any tips you’d like to share? I’d love to hear from you, it might be something I haven’t heard of and could try. Either leave a comment below or email thoughtfulpigeon@hotmail.com if you want.

Looking at this post, all the posts in this series, they feel a bit bare compared to my others. I have considered doing some illustrations or finding photos for them to make them a bit brighter. What do you think? Stick with the plain writing or add some pictures and colour?

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2 thoughts on “M.E. myself and I: Pacing, thoughts I’ve picked up over the years

  1. Thanks for a great post 🙂 I’ve had ME suggested to me, as a reason for my illnesses. But I think perhaps, it’s just a combination of a lot of physical issues, alongside my PTSD, that’s taken it’s toll. I can really see the benefit of pacing though and I do it myself, it’s especially helpful when it comes to dealing with chronic pain, but I find that it also helps alot with stress.

    With regards to ‘jazzing up’ your posts…I’ve felt like this so many times too! But I’m a writer, so I think using the outlet that best allows me to express myself is ultimately the best one. I like the ‘clean’ look to it, also. If you do decide to add some images etc., then do it because you want to – not because everyone else is. I like your blog just the way it is 🙂

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    • Thanks for reading, I think it’s hard to know if M.E. is a possibility as there are no tests for it and it’s sort of one of those things that if things can’t be explained by another illness you sort of get put in the category. Some doctors seem to not want to diagnose it at all but I’ve known people who were diagnosed with it who actually had something else that explained it and was found a year or so later.

      Yeah, I think I’ll stick with no pictures unless I have some that naturally fit. I guess it’s because I’ve always done graphic design and art so it’s kind of weird doing something with no pictures or colours in it.

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