Graded activity/pacing: progress update

Graded activity is a way of learning to manage chronic pain or illness by finding your baseline (the amount of activity you can do without exacerbating symptoms) and then gradually extending the difficulty, very slowly over time.  The aim is to be able to do the things that matter to you without causing flare ups.  Pacing is a strategy for avoiding a  boom and bust cycle which you do a lot on good days and then very little on bad days.  The idea is to even out your energy use and reserves so you can have a little more predictability.  I’ve been practising both strategies for a little while and here is the latest update on how that’s going.

Computer

  • No problems last week so increasing to 14 minutes from today.
  • Using wrist braces and fingerless gloves.  Still learning touch typing to reduce neck pain from looking down at the keyboard.

Walking

I haven’t been pacing with walking up to now.   Just walking until I get tired.  I would like to increase my fitness so I’m going to start timing how long I walk and taking rest breaks.  I’m starting at 7 minutes which is how long it takes to get to my allotment plot and I can usually do that comfortably.

Hoeing

  • I’m still in the phase where my muscles are getting used to the activity and if I don’t pay attention to what I’m doing my posture slumps forward.
  • I’m hoeing the ground outside now in a bed that has already been dug over and isn’t needed for planting any time soon.  This reduces the temptation to rush or overwork.
  • I’m going to continue making tiny 5 second increases every few days so that I build up stamina slowly without provoking a flare up in pain.

Mindful Movement

  • I’m increasing by a minute to 5 minutes and I’m following the movements provided by my audiologist (Qi Gong style movements).

Breaks

My energy level has been much more consistent since changing to 15 minute breaks between each activity.  This has slowed my day down but hopefully I’ll be able to build up over time.  And if not then I am still happier if I don’t wind up resting in bed as often – and fingers crossed it seems to be okay as far as that’s concerned.

CFT: Understanding my personal story

I believe that having self-compassion is essential if I’m going to live a meaningful life with chronic illness. Unfortunately I’m not very good at it. I think developing self-compassion can encourage us to take good care of ourselves, to be accepting of our limitations and appreciative of our efforts.

For some of us self-compassion isn’t something we developed as we grew up, or we lost it along the way. Instead we have an extremely vocal and opinionated inner critic. This critical voice is always pointing out our failings, worrying about our weaknesses and generally making life even harder than it needs to be. I’m engaging with Compassion Focused Therapy (CFT) to learn to be as kind to myself as I would want to be to others.

A note of caution:

Some people find that when they practice self-compassion, their pain actually increases at first.
Kristin Neff

I discovered this exercise through a course in Compassion Focused Therapy. It wasn’t designed as a stand-alone exercise but as part of a self-help book or counselling programme.

If you’re interested in trying this exercise or exploring Compassion Focused Therapy yourself you might first like to read these tips for practice from Kristin Neff.

Why examine our personal stories?

Paul Gilbert explains that we can get stuck with an overactive or overprotective threat system if underlying fears or beliefs are being triggered in a particular situation. Identifying our underlying fears and beliefs, and where they come from can:

1) Change how we label the fears

2) Encourage a compassionate response

He says:

“The point I’m making here is that the reason some people can get stuck in the threat/self-protection system and not be able to settle it down may be because there are sets of interconnected frightening themes or memories at play. Notice that, once we understood Kim*, we were much less likely to see her fear as a ‘pathology’ or ‘illness’ in the medical sense, or that it was just about her being irrational or having faulty thinking. Notice, too, that your understanding will naturally pull you into a position of compassionate feeling, where the focus is on seeing clearly how and why the threat/self-protection system is playing up (i.e. only doing its best) and exploring how to reassure it and settle it.”

Paul Gilbert The Compassionate Mind (p. 146)

*’Kim’ is a case study. The details of her story aren’t important here.

I have found this helpful because I think I have had a tendency to see my coping strategies as being part of my personality. While I do see my tendency to worry and perfectionism as a coping strategy that can be useful (but also causes a lot of problems) I also tend to think of it as a trait – that I am a worrier and I am a perfectionist by nature. Adopting Paul Gilbert’s understanding of coping strategies as a response to an underlying fear or belief makes me feel like I have a bit more freedom to change (although I think that’s going to be very difficult to put into practice). I can also see that this will give me a much kinder way of responding when my perfectionist tendency is getting in the way. Instead of getting cross with myself for wasting time on unimportant details, I can remind myself that this is just a way of trying to protect myself, and that I have a much better alternative in my soothing techniques.

Investigating my fears, beliefs and experience around illness

In chapter 4 of Mary Welford’s book, The Compassionate Mind Approach to Self-Confidence, there is a diagram that can be used as a template for making sense of our experience, fears and beliefs and coping strategies. The example below is exploring my easily provoked anxiety that I’m not doing enough to get better and so somehow my health problems are my fault.

After doing the exercise:

  • I can see how my fears have developed out of childhood experiences and cultural environment. They make sense in this context.
  • I can argue against all my fears rationally. I can see that they aren’t supported by evidence or experience but that doesn’t seem to change how I feel. This exercise helps me see that my fears go back a long time and have deep roots so won’t easily be unsettled. And while they might not fit with the evidence, they do make some sense on some level.
  • Likewise the coping strategies worked or made sense at some point. But now circumstances have changed and I want to find new and better ways of coping.
  • I felt a great deal of sadness doing this exercise. And I felt quite exposed and vulnerable talking about my fears and beliefs.
  • Quite a powerful antidote to the idea that there is some fundamental flaw in my personality or make-up that leads to me feeling so bad about myself.

My fears and beliefs around chronic illness:

  • I won’t be believed
  • It will turn out that other people were right not to believe me – I’m weak or ‘got above myself’ and made myself ill.
  • My illness is my fault.
  • I’m not doing enough to get well.
  • I’m letting other people down.

The powerful way some of these beliefs generate threat and fear is their connection to two core beliefs:

  • I’m not good enough (and I have to compensate for this or I’ll be rejected)
  • I’m to blame/will be blamed if things go wrong I mustn’t make mistakes or I’ll be rejected)

Understanding Others

As I was looking at my diagram I realised I could use this diagram to think about why people might say unhelpful things. One phrase I have often heard but find very unhelpful is “if it was me I’d do anything to get better”. I’ve added it to my ‘Past Experiences’ column. It links to fear that I’m not doing enough, or that people don’t think I’m doing enough and so they will criticise or reject me. At the moment my unhelpful coping mechanism is to worry and ruminate. I also feel irritated by the lack of understanding and the implicit criticism. I though using this diagram might be a way of putting myself in someone else’s shoes and trying to imaging what might make them voice such a thought.

I tried putting ‘saying “if it was me I’d do anything”‘ in the strategies column to see if it would help me to imagine the kind of experiences, fears and beliefs might produce this response. I hoped that thinking of the phrase as someone else’s coping strategy might make it feel less of a personal criticism.

I was able to put together a plausible (though not necessarily true) story as to why someone might believe or say that. The story I came up with is that it is frightening to think that anyone of us can get ill and have huge changes to our career, or physical ability and our lifestyle thrown upon us. It might make sense to protect yourself from this reality by reassuring yourself that if it happened to you, you’d find a way to keep your ‘normal’ life. And you’d succeed because you would try anything until you did.

Unfortunately, while that belief might be comforting to them, the unintentional consequence is that it implies that the state of our health reflects our willpower and determination. It also puts pressure on those with chronic conditions to continually demonstrate that they are trying. Even if the best medical evidence says there isn’t anything useful left to do.

Understanding this doesn’t make it acceptable. It’s not okay to talk to someone with a chronic illness in a way that might make them feel criticised or judged. But it does make it feel less personal. I don’t know if it will be less irritating or hurtful to hear in the future, but I am hoping this might make it easier for me to feel confident in sticking to my own approach. In the past I have found myself questioning whether I am doing the right thing and feeling guilt or shame that I don’t have my illness under control.

Reflections

Kristin Neff was right to warn that self-compassion can feel worse before it feels better. Even typing out these fears again makes me feel awful. There’s a knot in my stomach. I feel very agitated and want to walk away from the task. Allowing some of this stuff to come to the surface is difficult and painful. I want to push it away and cover it up again. On the other hand I came into Compassion Focused Therapy for a good reason – I felt really bad about myself, didn’t feel I was coping well, and didn’t want to carry on like that.

I believe exploring this compassionate approach is worthwhile for me despite being very hard going at times. Exposing the underlying fears and beliefs is uncomfortable but it allows me to begin to confront them. Additionally, my methods of coping either don’t work well (e.g. self-criticism, procrastination, worrying) or aren’t available now I’m ill (e.g. perfectionism, over work). The diagram helps me see that my beliefs and coping strategies make sense, or did at the time they developed, but now I’m ready for new ones.

Working through this exercise has made me see the value of learning the soothing rhythm breathing technique before moving onto these exercises. In the group we revisited soothing breathing techniques every week, and in different variations so we could each find a way that works for us. I’m glad I put time into practise at home.

I also see why CFT self-help materials often come with advice to engage in them with the support of a counsellor. I had the opportunity to go through my diagram with a counselor and or was very helpful.

Pacing Update

The aim of pacing is to find the approximate length of time that I can work at something without causing a flare up in my symptoms. The principles of pacing are to avoid a cycle of boom and bust and to stop before you need a break. A few months ago I worked out my starting baselines for various activities. I’m working on gradually increasing my baselines by one minute a week for just a couple of activities at a time.

I haven’t tried to extend my baselines (the amount of activity I can be fairly confident won’t increase my pain or fatigue) for weeks.  I’ve had setbacks with both migraine and fibromyalgia symptoms and it’s been a slow up and down process to get back to where I was.  This week I feel ready to try reviewing and adjusting my baselines in the three areas I’m working on.

Last week I adjusted the pattern of my breaks so I now take a 115 minute break after each activity.  This has meant reducing the amount of activity I aim for in a day but I seem to be suffering less with fatigue.  I am still always battling the temptation to try and do a little more.  I wish I had more patience!

Mindful movement

I increased the timer to 4 minutes for mindful movement (movements based on Qi Gong). I’m finding the movement much more comfortable and can increase the variety of movement as well as the length of time.  Each time I start with the simplest movement and progress gently.

Using the computer

I’ve increased my time at the computer to 13 minutes.  I seemed to be doing okay with 12 minutes in terms of pain in my hands and forearms.  I’m doing okay in terms of fatigue as long as I take a 15 minute break each time.  I hope in time I’ll able to reduce the length of the break.

Cultivating my allotment with a hoe

I’ve been doing bicep exercises for the last couple of weeks, gradually building up my strength.  I’ve also been practising my posture using a mop or a hoe on light loose soil.  This week I’m beginning to practise using the hoe on slightly heavier bare soil.  I needed some help from my partner who prepared the ground for me so I can very gradually increase the intensity of the activity and control the amount of effort required.  I managed 30 seconds today with no increase in pain so I’ll take that as my starting baseline.

How not to cope with a setback

Forget there is a setback plan, try to get back to ‘normal’ as quickly as possible, then have half a bar of chocolate and a third of a bottle of wine because what’s the point in trying to be good if you end up feeling horrible anyway?

Still it’s a new week, so I’m going to attempt a new start. Dig out the set back plan, ease myself back into good routines and habits and remind myself that set backs are always going to be a part of chronic illness, no matter how careful I am.

And it’s not the end of the world if I mess up sometimes.

What is Compassion Focused Therapy?

Compassion Focused Therapy (CFT) is an offshoot of CBT.  It was designed for people with high levels of self-criticism or shame.   It is supposed to be helpful for people who can reason against their fears or beliefs but who find that their feelings don’t change.

The theory behind CFT is that we have evolved a set of mental systems because they helped our ancestors survive.   The relevant ones are the drive and motivation system (search for something, feel rewarded, want to search again), the threat and protect system (recognise danger and activate the fight/flight/freeze response) and the soothing and contentment system.  Due to our genes, our early experiences and our environment some of us have overdeveloped threat systems and undeveloped soothing systems.  CFT teaches us to redress the balance by developing our soothing system.  There are a core set of exercises which include meditations, imagination and imagery and thinking through beliefs and coping mechanisms.

There are self-help resources available and I’ve linked to a few below. CFT exercises can touch on difficult and painful issues and memories so a lot of resources suggest it may be better to work with a therapist.  That was true in my case.

How good is the evidence for CFT?

2014 study says there isn’t enough of the kind of research necessary to consider CFT to be evidence based. Studies have been conducted but they generally have too few people participating in them, or other limitations. This means that we don’t know if CFT is better than existing treatments.

My personal experience with CFT: 

It has been difficult, bringing up some difficult emotions but I feel it is worth it to soften that critical voice in my head and to learn to look after myself better and more kindly.  I started with CFT in one to one high intensity CBT sessions where we talked through some of my early experiences, my beliefs, fears and my feelings about myself.  I’ve found the group therapy sessions I’m currently going to really helpful.  The theory and techniques are introduced gradually and repeated so it’s not too threatening and I’m gradually opening up to a new way of thinking.  I can see there’s an awful lot of work to be done and it’s going to take a lot of time and patience.  But I’m really looking to forward to having a calmer more compassionate way of talking to myself and responding to mistakes and difficulties.

How do I think CFT fits into self-management of chronic illness?

  • A chance to develop new or better coping strategies if our old ones are no longer accessible.  For example, worrying, perfectionism, and over-preparing are not ideal ways of coping but they may have been okay in the past.  But they take up far too much precious time and energy for a chronically ill person.
  • An antidote to criticism and judgement from ourselves, people around us and in the media.
  • Learn to support ourselves in doing what is best for ourselves, even when it is hard.
  • Learn to support ourselves in accepting and coming to terms with the changes to our lives.
  • Learning to alleviate anxiety and fear.
  • Learning to address unhelpful beliefs with understanding and kindness.

Resources

  • Compassionate Mind Foundation
  • Paul Gilbert, Overcoming Depression A long and detailed book that I found really helpful. It’s written clearly, with some memorable turns of phrase and exercises to practise with.  This is my favourite because it strikes the right balance of depth of explanation and practical exercises for me.
  • Mary Welford, A Compassionate Mind Approach to Building Self-Compassion A shorter, easier read than Overcoming Depression with exercises to work through. Some of the exercises on thinking about where my lack of confidence had come from were emotionally challenging. I was glad I had covered some of this with a counsellor before reading the book.
  • Paul Gilbert, The Compassionate Mind (I’m only half way through this book so far) I like reading about the background to how the therapy was developed and where research is going.  However, there may be more detailed theory here than some people will enjoy.  I like that Paul Gilbert acknowledges the role of our culture and social context in producing an environment that isn’t supportive of compassion.
  • Kristen Neff website Meditations and exercises
  • Chris Germer website Meditations and exercises
  • CCI Self-Compassion A series of 7 workbooks (PDF) introducing concepts and exercises for building self-compassion.

Soothing breathing

I have encountered soothing breathing exercises as part on my one-to-one counselling and when reading self-help Compassion Focused Therapy (CFT) books.  It’s not something that I persisted with though.  Developing a soothing breathing technique or form of imagery that helps us to feel calm, soothed and steady has been the main practical exercise for the first 5 weeks of my group therapy.  This soothing practice came alongside getting to grips with the theory and principles of CFT.

Now that we are getting into applying the theory to understanding our own experiences and fears I think I understand the importance of learning soothing rhythm breathing first.  Thinking about the lack of compassion I have for myself, how critical I am of myself and how I came to be this was raises a lot of sadness, and some fears to the surface.  Being able to calm myself is really helpful in being able to do think about and discuss these thoughts and feelings, without feeling overwhelmed or crushed by them.

I’ve practised soothing breathing rhythm on most days since we were introduced to it in the first week.  I’ve also experimented with scent, imagery and holding an object.  I’ve discovered I like the scent of lavender because I associate it with relaxation and it encourages me to inhale deeply.  I also like to hold a pebble in my hand.  The shape and texture gives me something to focus my attention on if I’m having a hard time settling down.  After practising for several weeks I have noticed I find it easier to calm myself and soothe the effects of anxiety or stress in my mind and body and to get a little relief.  I used soothing rhythm breathing during an extremely stressful event last week and coped much better than usual.

Pacing progress update

The aim of pacing is to find the approximate length of time that I can work at something without causing a flare up in my symptoms. The principles of pacing are to avoid a cycle of boom and bust and to stop before you need a break. A few months ago I worked out my starting baselines for various activities. I’m working on gradually increasing my baselines by one minute a week for two activities at a time.

Pacing:

Overall I’m starting to see benefits from pacing my activities to reduce flare ups in fatigue and pain. I still struggle with some of the drawbacks. For example, I can’t get into a ‘flow state‘ when I’m only engaging in something for a maximum of 8 minutes at a time. And it’s taking a lot of time, thought and energy to implement pacing in my life.

I’ve been doing some problem solving around the various issues as they arise which makes things a little easier. I can also see an improvement in terms of how comfortable I am as I’m aggravating the pain and dizziness less. This is particularly noticeable towards the end of the day. I have to go to bed less during the day to sleep. Though I still have scheduled rest breaks where I lie down to relax or meditate and I still do to bed at the onset of a migraine.

The changes:

Flow:

I’ve experimented with grouping tasks into sets of 4. I have a 3 minute break after each task to check in, and a longer relaxation period of around 25 minutes after each set of 4. I’m aiming to group activities so I keep some continuity in where my mind is at throughout each set, and variety in how I use my body from one task to the next. Pairing activities that I do regularly reduces the planning and decisions that need to be made each day.

  • Planning (computer) / Balance exercises
  • Reading or dictation / housework
  • Writing (computer) / dictation or thinking

Frustration with the timer:

Each morning I have started breaking down tasks I plan to do that day into smaller steps that match the time I’m allowed by my pacing strategy. This seems to reduce the frustration that comes from constantly being interrupted by the timer when I’m in the middle of something. Hopefully as time goes on I’ll get better at estimating the time needed for different tasks.

New baselines:

  • Housework
    • I’ve settled at 8 minutes at a time for general housework. I did try a week at 9 minutes but was getting very tired sometimes so reduced it back to 8 minutes. I’m planning to leave housework at this level for now.
    • I noticed I was getting very sore muscles after jobs involving stirring or scrubbing despite keeping to my time limit. I’ve made a separate category for housework involving intensive/ repetitive movement. This category has a starting baseline of 1 minute.
    • I’m alternating housework with reading or dictation which can be done with my feet up and head supported so I don’t overuse muscles. This allows me to process what I’m thinking about while doing the housework and to give my muscles a break while I read or record my thoughts.
  • Computer
    • Using wrist splints reduces pain.
    • Currently up to 8 minutes. I’ll see how that goes this week.

You can see how long it’s taken me to get to this stage in the pictures of my record sheets below. On the one hand, I’m happy that I have doubled the amount of time I can spend at the computer in two months. On the other hand, it’s taken two months and I can still only do 8 minutes which is a long way off what I want. This is where my self-compassion course, and the support of a health professional in setting and persevering with the pacing process has been so valuable. I’ve also appreciated encouragement and support from the people around me. I’m not sure I could have persevered without it.

Baseline Record Sheet: Computer
Baseline Record Sheet: Housework

Mindfulness:

  • More aware that I do need to pay attention when doing housework.
    • Thinking about how I’m going to lift something and if it’s a good idea
    • Noticing any muscles or joint aching or fatigue
    • Thinking about whether to continue with a plan or stop and change to another activity or rest.
  • I much preferred it when I could do housework on autopilot with my mind on something more interesting.

Finally – I can see some progress with pacing!

The aim of pacing is to find the approximate length of time that I can work at something without causing a flare up in my symptoms. The principles of pacing are to avoid a cycle of boom and bust by stopping before you need a break. A few months ago I worked out my baselines for various activities. I’m working on gradually increasing my baselines by one minute a week for two activities at a time.

The activities I have been working on are housework and using the computer. At the start of this week I increased the time spent on housework to 9 minutes, and time spent at the computer to 7 minutes

Using the computer is still comfortable, as long as I wear my wrist splint. This means I can increase the time allowed for the computer to 8 minutes. I do need to make sure I alternate using the computer with something away from my desk and making very light use of my hands. Dictation, reading, or using my whiteboard could all be good activities to alternate with the PC so I can keep my train of thought going while not aggravating any one particular symptom for too long.

I really want to increase time allocated to housework to 10 minutes as it’s a round number, but I felt tired few times after the 9 minutes this week. I also need to take care during the 9 minutes if I’m doing repetitive actions like stirring a saucepan or scrubbing or cleaning the bath. Several times doing activities like these within the 9 minutes has produced aching muscles and painful joints.

So I’m going to leave housework at an untidy 9 minutes. I’m also going to make a new category in my pacing list for repetitive housework tasks. I’ll start this at a baseline of 1 minutes and build up slowly from there.

Pacing like this is still frustrating although I am more accepting of it and it’s becoming a habit. I can see some benefit though. I’ve less pain in my hands particularly and while I’m tired at the end of the day, I’m not sleeping as much in the daytime.

Practising… Self-Compassion 4

Week 4: Compassion vs. Criticism

I believe that having self-compassion is essential if I’m going to live a meaningful life with chronic illness.  Unfortunately I’m not very good at it.  I think self-compassion is so important because it’s an attitude that encourages us to take good care of ourselves, to recognise how difficult life with a chronic condition can be, to be accepting of our limitations and appreciative of our efforts. 

For some of us (including myself) self-compassion isn’t something we developed as we grew up.  Instead we have an extremely vocal and opinionated inner critic.  This critical voice is always pointing out our failings, worrying about our weaknesses and generally making life even harder than it needs to be.  Continue reading Practising… Self-Compassion 4