Pacing

This won’t necessarily fit in with the official version of what pacing is, but it’s how I’ve come to see and understand the idea/technique.

Quick-Notes:

  1. Pacing is a technique that helps people manage their ME/CFS
  2. It’s about finding balance, and doing what you can when you can
  3. Most of the work has to be done by the sufferer, although there are ways other people can help, and there are professionals who can offer advice and assistance
  4. It’s an ongoing process to manage the condition, not a quick fix, not a cure

How to describe pacing? Pacing is (in theory) like becoming an adult: you have to accept things are different than before and that you’re not finished learning, become responsible for your own actions and decisions, be aware of yourself and what you’re doing, understand that actions have consequences, and on occasion be prepared to bargain & compromise. It’s also alike in that while guidelines and advice can be given, it’s up to the individual to work out how best to apply the concept to their own life.

Acceptance. This is sort of the first step, because if you don’t accept you have this condition – that you can’t carry on like you used to and that there will be unexpected ups and downs – then you’re not going to be able to get on with adapting and learning how to manage it. Unfortunately that’s where the advice ends: you have to work out how to come to terms with having ME/CFS for yourself.

Learning. As with any condition, there are many new things you’re going to have to learn. There are general practicalities: what the condition is, how it affects you, what potential treatments are, what your triggers, warning signs and limits are, how to deal with physical symptoms and what lifestyle changes these may necessitate. There are more personal considerations: how your character will help/hinder you, dealing with related emotional issues, telling family and friends and coping with their reactions, ditto for strangers. It doesn’t end there either, because if you have the condition for a long time your symptoms may alter, either in severity or type.

Responsibility. Although there will be people offering advice and support, you have to take responsibility for finding out what works for you, because there’s no checklist or or set of rules for ME/CFS. What works for one person may not work for another. It’s up to you to try things or not, to find out information, to implement suggestions, to keep going. It’s also only right (and means you’re a nice person) if you accept responsibility in another way – don’t blame other people when you suffer a set-back. If you went in to work, went out with friends, stayed up a bit later, that was your decision. Because everyone knows. . .

Actions have consequences.

Bargain & compromise. This can be a dicey business, but if you have a line-up of things you really want to do, you may decide (or may have to) implement these options. For example, you have a part-time job Monday, Tuesday, Friday. It’s your friend’s birthday and they want you to come out at the weekend. You always go out with your mum on Thursday. You know you’ve already been overdoing it a bit recently and there’s that bug going round the office. What do you do? Ignore your warning signs and do it all? You end up near-enough housebound for two weeks at least. Your other options? A) choose one or two activities which are the most important and excuse yourself from the rest. B) take it one day at a time, doing whatever is planned but taking it as easy as possible and being ready to call a halt if you get worse. C) decide you’ll do x even though you know you’ll probably suffer for it, leave y early, and rearrange z for another time.

Awareness. You have to become aware of how you’re feeling because no-one else can do that for you. Only you can know if you’re feeling run-down, and you have to be strong enough to follow through on that knowledge – if you think you’ve had enough say so, do something about it, stick to your decision. (Unless you really start feeling better or decide it’s worth the risk)

Honesty is also an important element of pacing. You need to be honest with yourself and others about how you’re feeling: don’t pretend nothing’s wrong if it is, because you’ll suffer in the end; but when you can do things – even little things – then do so because it will probably make you and the people around you feel better, more positive.

Google’s definition of ‘pace’ is to: walk at a steady speed, especially without a particular destination and as an expression of anxiety or annoyance. Well what you want with ME/CFS is to keep on at a steady maintainable speed, and setting goals might not be the best idea to achieve that. (Although that also depends on your personality and what the goals are I guess) The anxiety and annoyance you get for free, and will make themselves known without any say-so from you!

In the end pacing is about balance – you can’t do everything you used to, but if you take care you can shave off the major lows you have probably been suffering and establish a new ‘normal’. For the technique to be most effective it should become a way of life, almost instinctive. You sense your warning signs and heed them, and you don’t deliberately do more than you know you can handle unless you’re willing to accept the consequences. . . In other words, you do what you can when you can.

Warning Signs

Quick-notes:

  1. Be self-aware but not self-obsessed. Know your warning signs.
  2. Don’t panic – they’re an opportunity not a sentence
  3. Do something. Other than ignoring them.

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I have found that before I suffer a full-blown ME/CFS episode, there are certain warning signs. You want to learn what these are if you can. Because once you can recognise your warning signs it offers a measure of control: you have the knowledge that you’re heading toward an episode, you can make an effort to ease the severity of it, or if you spot the signs early enough, possibly prevent it altogether.

This is (I think) part of a coping technique called pacing.

Although I now know my main warning signs, (gradual withdrawal into myself, start doing less, posture and way of moving alters) I don’t always spot them, or at least, I don’t spot them as quickly as other people do! And those other people can help you (again) in finding out what your warning signs are – you can ask them if they’ve noticed any changes right before you feel worse, or if they’ve ever suspected you’re getting ill before you actually do. They might not even realise they’re noticing these things until you mention it.

The difficulty is, if you’re anything like me you don’t want to be constantly thinking about how you’re feeling when you’re well. You want to forget about all that as much as possible and just get on with things. Tough tootsies. With this condition you have to become more aware of your body and what messages it’s sending, or you’re only going to run yourself into the ground over and over again.sign-1358288_640

I’m not saying record every change or evaluate how you’re feeling as soon as you wake up every day, just every once in a while (the timing depending on your own condition) take a moment to check for those warning signs, and if you notice them don’t freak out! Don’t stop everything and take to your bed. Just maybe take things a little easier for a couple of days.

Think of this a chance to change the future, not a set-in-stone prophecy of what’s coming.

So what do you need look out for? How do you work out what your own warning signs are? Here’s a few ideas:

  • Physical activity – how much are you doing, do activities tire you more, has the speed of your movements slowed at all, have you done something recently that might trigger an episode, are you moving as smoothly as usual
  • Sociability – are you joining in as much as is usual for you, talking, going out
  • Sleep – has it changed, are you sleeping more, less, feeling tired earlier in the evening
  • Attitude and emotions – do you suddenly not feel like doing things, are your emotions veering toward the negative
  • Posture – are you tending to slump in a chair when normally you sit more upright
  • Eating – how much are you eating, are you craving certain foods more, have you stopped snacking between meals (if you usually do)
  • Mental activity – have your thoughts slowed, how’s your concentration, has your speech changed
  • Pain – are you getting aches, an uncomfortable feeling in the joints, headaches

road-sign-663368_640.jpgLikely your warning signs will be as individual and unique as your condition, so you’ll have to work that part out for yourself. Maybe with some help from your friends! As previously mentioned, spotting these things in yourself doesn’t guarantee you’re going into an ME/CFS episode. If you do something about you might avoid it or – look on the bright side – you might be adapting to the changing season or be coming down with a mere cold! (Not that colds are anything to joke about when you have ME/CFS, but they don’t always turn into more)

So that’s warning signs. The idea isn’t to bury yourself with them or to fixate all your attention on yourself, but to use the technique as a tool to monitor your condition and maybe give you back a bit of control. And if it doesn’t work for you, don’t use it. Keep looking until you find something that does.

 

A Very Guilty Pleasure

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“Guilty Pleasure: something, such as a film, television programme, or piece of music, that one enjoys despite feeling that it is not generally held in high regard.” Google

I would personally expand this to: anything you derive enjoyment from but that you feel embarrassed, guilty, or ashamed to admit to others.

Everyone has guilty pleasures. It could be something you watch or listen to, activities or hobbies, things you eat, things you buy. I know I have various guilty pleasures and – shock horror – not all of them are related to ME/CFS. In fact I’d say the majority have nothing whatsoever to do with the condition. However, the one I’m going to share with you today does.

Shared experiences are important to people. Having just one other person understand what you’re going through, how you’re feeling, makes you feel that little bit less alone, maybe not quite so different. It’s a bit of a weird thing though, because although people can go through the same things – an illness, the highs and lows of a particular job, the triumph of achievement, the loss of someone they love – each person will ultimately experience and react to the event in slightly different ways. And no-one can really know how someone else feels.

For ME/CFS sufferers that dual weirdness of knowing/not knowing goes double, because even if someone else has the condition (and knowing you’re not the only one is something of a comfort) you will most likely have very different symptoms from each other. Also, depending on your situation and personality, you cope differently.

I am getting to the guilty pleasure bit, honest.

A few years ago there was a Christmas bug going round, and two people I know got it. I think it was the same one because they got ill about the same time, got better about the same time, and had similar symptoms bar one. One of them said it was like their brain stopped working: couldn’t concentrate, had difficulty finding words and talking, basically they struggled to do much of anything. The other said they could think but had no energy.

I said, put the two of you together and that’s how I feel when I get ME/CFS ill. Only it tends to last twice as long as you’ve had it. They stared at me. So long I started to worry. Suddenly I was engulfed by sympathy and questions and wow, they never knew. . .watercolor-1904317_640.jpg

More recently I overheard someone talking. They were saying they’d been feeling so tired the last few weeks- No, not tired. Drained. Like it was too much even to think of doing something, and nothing helped. I was about to go on my way when I heard them continue with: ‘if this is anything like how she feels I don’t know how she stands it.’

I knew they were talking about me. It made me feel like crying.

So that is perhaps my worst guilty pleasure. I don’t want other people to feel bad or be ill, and I certainly don’t get any enjoyment from their suffering, but  I can’t help feeling a certain thrill of something when I think someone really realises a measure of what I go through with ME/CFS. I wouldn’t wish this condition on anyone but at the same time, if they could feel it just for a day, a week, people would have such a better understanding – and appreciation – for it. It’s one of those things, ‘if you could walk a mile in my shoes. . .’

(Images from Pixabay)

 

Symptom: Psychological & Emotional Issues

The main psychological and emotional issues faced by sufferers of ME/CFS are:

  • Depression
  • Anxiety
  • Emotional Liability

Depression is a separate illness in itself, but as with other conditions many of the symptoms are similar to those of ME/CFS. (Similar but not indistinguishable – there are differences to look for.) For example, depression can make your feel fatigued and disconnected, you can have difficulty concentrating or get aches and pains with no obvious physical cause. Sound familiar? These days there is a lot of information around on depression, the top site when I searched being

Mind: the mental health charity.

There you will find information on many types of mental health issues including depression and anxiety, and suggestions for where to look next if you think you might need more information, help or support.

Unlike depression and anxiety, I had never heard of emotional liability until I read ‘Living with ME’ by Dr Charles Shepherd. In this book he explains that emotional liability is when,

“. . .the emotional state and mood may start to fluctuate widely, often for no apparent reason. . .”

Although it is sometimes connected to the frustrations of living with ME/CFS. Unexpected tears, irrational anger, or sudden low spirits can all be part of it.

Bizarre as it may sound, having a possible explanation – even if there’s no treatment – may make a person feel better simply because there is a reason for how they’re feeling. I experienced it when I was first diagnosed: the relief of having an explanation and knowing I wasn’t making up how badly I felt, of having someone say it was ok. It happened again when I started researching the condition recently: when I read about emotional liability I had one of those ‘that is so me!’ moments, where before I’d thought I was just being bad tempered. Then again, maybe I was. . .!

Put another way, although I’ve lived with this condition for years I hadn’t realised how many different things it can affect both physically and emotionally, and that there are levels and nuances between clinically depressed and low spirits. I’m not physically better for knowing this, and it doesn’t stop me feeling bad, but it has given me some sort of reassurance/comfort/positivity/solid ground from which to face the difficult times.

ME, My Family, and I

I’ve been told (by people trying to be helpful) that I shouldn’t let my condition define me: I am not my syndrome. Probably anyone with a chronic condition or life-altering circumstance hears that at some point.

  • Don’t let _____ define you
  • You are not your _______
  • ______ doesn’t change who you are

All very positive and encouraging.

All (in my case and I suspect many others) completely untrue.

How do I know this? Because how could something you’ve had to alter your whole way of life for not alter your personality somehow too. It’s like saying having a baby won’t change you or your life. Yes it will. The important thing is not to let it become the one and only focus. You need hobbies, interests, distractions. . .

Think of it as a question of adaptation. Can you adapt to this circumstance while keeping the essence of you intact? My difficulty comes when the changes are hard to pinpoint. Do I dislike large gatherings because I’m naturally an introvert and prefer my own company, or is it because I don’t do well with crowds or noise anymore and I’ve got used to being on my own because of the ME/CFS? Would I have done a different course at university – gone to a different university altogether – if I hadn’t had to be practical about my health issues?

Where do I end and the ME/CFS begin?

Does this question come up because I’ve had ME/CFS since childhood, or does anyone who’s dealt with it for years have the same confusion?

As well as the personality wrangling and useless questions of ‘what if’, this issue also brings with it a certain amount of fear. What happens if/when I get better? Thinking about getting better when you’re ill may (consciously or unconsciously) occupy a fair amount of time, but what you may not consider because it’s just too frightening is – what happens if this condition does goes away? That safety-net, that logical reason for why you haven’t done things, is gone. Now what? Those things you said you missed and wanted to do, suddenly you can do them. That’s kinda scary. Not to mention the fear that you’ll be okay for a while and then suffer a relapse, because ME/CFS is never completely gone.

So what can you do about all this? I guess it’s like that thing says about accepting what you can’t change, working to change what you can, and being able to tell the difference between the two.

I can’t change the years I’ve lived with this condition, or to a large extent whether or not I recover, or the fact that I rely on my family for a lot of support. I can try to think about why I’m doing or not doing things, acknowledge when it’s plain fear holding me back, and try not to let it. I can remember to do normal things with my family to make sure our interactions aren’t all health-related. I can work on accepting that although ME/CFS still has – and may always have – a huge impact on me and those around me, what they say is at least partly true: my syndrome isn’t all there is to me.

My life is a three-part orchestra not always playing the same tune:

ME, my family, and I

Now I just have to figure out how to turn the cacophony into a harmony. Easy right?

A Condition of Variability

So far I haven’t covered in detail the most characteristic aspect of ME/CFS:

Variability

Cause, symptoms, treatments, they all vary from person to person so that in effect everyone has a unique condition. Added to this, there are fluctuations in the severity of symptoms both long-term and short-term.

  • Long-term – symptoms and their severity may alter, usually lessening if the person is coping well, but there can also be relapses where symptoms become worse than ever.
  • Short-term – often the person appears perfectly well, then without much (if any) warning they can become severely restricted in their activities.

In-between these two extremes there can exist the feeling of being ‘not quite right’. This in-between stage can persist for months at a time without the person developing the extreme pain, fatigue, etc that are commonly held to be the most disabling symptoms. (More on these three stages later)

This variability makes ME/CFS a difficult condition. Difficult to diagnose, to try and treat, to research, to live with. Difficult to believe in. (It’s easier to accept and understand when there’s a visible symptom, less so when there isn’t, and it gets even harder when the sufferer can go from living their life to incapable of cooking a meal within a single hour.)

So although variability isn’t in itself a symptom, I think it’s a major part of ME/CFS, and learning to accept that – that changes can be fast and unexpected – is an important step in coping. Also to be aware that your syndrome may not stay exactly the same the whole time you have it – when I was younger I got quite a lot of joint pain and headaches; recently  I realised I don’t get those symptoms so much but the brain fog seems worse and I’m more sensitive to noise.

True variations? Or something I’m picking up on since I started researching current thinking?