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Chronic fatigue - the prognosis

I've had many estimates from healthcare professionals over the years relating to a possible recovery from my mystery illness varying from 3 months (you'll get over it), to 1 year (think of it like glandular fever), to 10 years (this is how long it will take your immune system to adjust), to never (you have an incurable illness), and finally, to the more reliable, we don't know. During my most most recent meeting with someone who works with chronic fatigue patients I was told this:

10% don't recover
80% learn to manage their illness and live a meaningful life
10% fully recover

Is this good news or not? I guess, statistically, there's a chance of something, but my take home message was this: there's no going back.

People only hear what they want to hear

This is the flipside to the post I was trying to write yesterday - we only see what is relevant to the self. In the same way that we only see our self interest in our daily interactions, so too do other people. They are just seeing themselves in all things that they are doing. There's nothing wrong with that until we expect people to see things from our point of view and then a certain amount of frustration kicks in.

For example, when we have a conversation with someone we automatically assume they can see things from our point of view. It seems obvious to us what the truth is and they should agree with us or empathise with our situation. Not so. We all see things differently and from our own self centered perspective - it is impossible to do otherwise. In any situation, unless we are highly mindful, our brain automatically filters down information that we hear dependant on our past experiences and mood at the time. I might say "the sky is a lovely blue today" and differe…

We only see what is relevant to our self

This is quite an interesting insight into delusion and the self. Basically, as we go about our day to day lives we only pickup on things that our relevant to us or in some way relate to our internal experiences. Or, we only see what we want to see.

For example, my garage it is piled up with stuff. To my friend, he sees a pile of junk that probably needs to be thrown away or he might spot a fishing rod he might like, or a broken remote control car. My children might spot a trampoline or pogo stick or boxing gloves - things they might like to play with. I might be drawn to an old table that my grandmother used to own and have in her lounge because it has strong memories for me of the 70s and early 80s.

Now there's nothing wrong with this. The problem occurs when we think we are going round in our lives seeing things in a totally unbiased manner assuming that what we are seeing is somehow the real truth of what is going on. What we are actually seeing is our self in everything externa…

Delusion and the self

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If you've been following my efforts to explain delusion then you'll know that
a) it is necessary
b) there's a layer of interpretation between what we think is going on and what is actually going on


Now, here's the next step. The layer of interpretation is hugely complicated because it is doing hugely complicated things, and our whole lives are an investment in the way it operates. Not only this, because it has a model of how it thinks the world should behave it is then able to screen out large amounts of information and work in abstract ways. We can exist entirely inside our heads, like I am doing now, writing this.

This mental construction gives us a sense that we are separate from the world and we feel that there is something real causing the separation - our sense of self.

So, to summarise, because it is physically impossible to process all the information coming to our senses, we need to have something that cuts it down and chops it up for us. This activity of interpret…

There is always pleasure somewhere

This is based on the premise that if you alive then there is always pleasure somewhere in your body. It might not be easy to find and it might be masked by other problems in your experience. For example, my thinking mind has a habit of clamping down and locking on to difficult moments in life (stress) to the extent that nothing else can get a look in. Getting this mind to let go is tremendously arduous and requires a lot of patience, however the process of letting go generally begins with some inkling of pleasure (or freedom) somewhere in the body.

What is this pleasure?

It is the pleasure of being. The breath can find it, perhaps the breath is it. We breathe in, we breathe out, the body likes it, the mind lets go.

Who knows what will happen?

I don't, do you?

Chronic fatigue and mindfulness

Mindfulness is very popular these days (thanks mainly to the work of Jon Kabat Zinn)as a treatment for depression and our relationship to difficult illnesses. Mindfulness is simply paying attention to what is going on. There is everyday mindfulness which is fairly accessible to everyone where we just pay attention to something, and there is a kind of infused meditative mindfulness where what is going on flows through us. The mental quality of awareness is essentially the same in both cases.

How do we know we're being mindful? Just asking, "am I mindful?", automatically creates the correct level of awareness.

So, I use mindfulness quite a lot to relate to my situation and I'll give one example here, although there are many uses for mindfulness. When I'm having a particularly difficult time I like to ask, "where is it now?" This immediately takes me out of mental proliferation about my present difficulty, breaking up thoughts such as 'This is really bad…

Delusion

Delusion is current in my mind after being somewhat drawn short over the last week. Delusion is defined as a strong belief that is false, fanciful or not real in some way. It sounds like some kind of psychiatric condition except delusion is like gravity - an all pervasive force of nature that affects us all and that we are completely unaware of in our day to day lives.

How does that work?

In the case of gravity, when we stand up we don't think 'gravity is making me work hard, I feel my muscles straining under the demands of gravity', we just stand up and accept the world we live in. With delusion, our brains are designed to interpret and filter vast amounts of information so that we can make sense of the world and act according to our perceived needs. So, immediately there is a disconnect between what is going on in reality and what we think is going on - this is where delusion sets in.

Not all delusion is bad. For example, it is useful to believe that I'm still going to …

Chronic fatigue catch 22

I'm taking some punishment at the moment from my symptoms. Here's a thing:

- I wake up feeling quite under the weather - the brain doesn't want to get started, it's not good.
- I know I need to thoroughly relax and let myself wake up carefully.
- I have the thought "I don't want to feel like this yet again".
- I get kind of stuck in the thought and it will not let me relax.
- I need to let go and then I will feel OK. I can't let go.
- Now I get stuck in "trying" to let go. This makes this more difficult because I can't "try" to do anything with my brain all fogged up and not-quite-right.
- But I need to relax.
- But I don't want to be like this.
- And so on.

So I learn patience and the waiting begins.

Another word for equanimity

Balanced

I also liked quiescent, imperturbable, abiding (especially calm abiding), contented but balanced seems to be best. Are you balanced? Is anyone?

Another word for feeling good

Easefulness

Take a moment

In a way, this is the opposite state of mind to the 'I'll just do this' mode of thinking. As you complete one thing, such as brushing your teeth or chopping some vegetables, take a moment to reconnect to the world around you and the world inside you. Take a deep breath, see how your body is doing - is it tense? Ask yourself how you are feeling - happy, sad, or neither. What is your state of mind? Is it constantly reaching into the next moment or is it nice and easy? What are you thinking about? What is your intention in this moment? How are you entering the next moment?

Or, just find a space in your mind to relax and take it easy.

'I'll just do this' and chronic fatigue

Pacing is a very tricky thing to master and I still haven't managed total discipline in doing it. There are many distractions that draw us away from the refuge of the pacing routine. Here's one scenario that happens to me rather a lot:

1. I'll decide to do a task - say write a blog post. I'll plan it, set a time limit (even set an alarm), and then remember to stay controlled while I'm doing it.
2. I'll do the task. Sometimes I'll get a little buzz from doing it (if I like it), sometimes I'll feel slightly frustrated (if I don't like it).
3. Have you noticed what has happened? The feelings associated with the task have distracted me and my mind has moved on from the initial intention to something else.
4. Now, I'll say to myself - perhaps I'll just write some emails, or I'll just do some music or something else.
5. My alarm might go off, but I'll say - I'm just going to do this little thing.
6. Then I am lost.

Now I set a trap for myself…

Patience and chronic fatigue

Patience is a word that comes up a lot when you're living with chronic fatigue. There's a lot of situations to practice it - waiting for a diagnosis, waiting for an appointment, waiting at the appointment (I've had several waits lasting multiple, multiple hours), waiting for the latest difficulty to wear off, doing pacing, waiting to do something you enjoy but can't because you've run out of time, and so on. Sometimes time runs very slowly. Now think of yourself as a patient person and this is the opportunity to practice it, live it, understand it and totally comprehend it. There is a certain nobility to be extracted from it.

Chronic fatigue syndrome

Don't expect miracles. Have a ten year plan in mind.

Chronic fatigue syndrome - one thing to remember

There is no cure. There might be days when you feel cured , indeed I have the delusion of wellness when I ride my bicycle. I feel as clear as a bell as I coast along and I start planning my new life 'now that I feel better', then when I dismount I feel the life drain out of me and I realise that I have been fooled again. Now, as I ride along I try to remind myself that it is only 'bicycle wellness' and that there is no cure.

No cure also means that no-one knows what causes it. So there's no need to go through the trouble of beating yourself up with statements like 'if only I'd have lived my life differently', 'I should have done this', 'I shouldn't have done that', 'I should have realised', 'I'm to blame'. Forget all that, no-one knows. Better to deal with the cards we've been dealt.

Living with CFS - four things I have found useful

I guess everyone experiences chronic fatigue in a different way. In the early days there's not much you can do apart from live through it, but then there comes a point where you know you need to start attempting to be yourself again. Four things that have helped me tremendously are:

1. Meditation. This has helped me in many ways and, of all the journeys in my life, this has been the most profoundly amazing and illuminating.
2. Yoga (gentle exercise). This ironed out the creases in my gnarled, stressed body.
3. Diet. Changing my diet to super healthy has been very difficult but it has given me a sense of well being.
4. Pacing. This has been my fall back survival strategy.

I'll no doubt be going into these in more detail at some point.

Living with CFS - establishing a baseline of activity

This has been THE most useful exercise for me as I progress through the illness. A baseline of activity is a level of activity that allows you to exist with ease, i.e. you have a stable routine that doesn't leave you completely wrecked, allows you to have a normal sleep pattern, or otherwise cause you to experience anxiety that can't be easily processed. You're looking for a level of activity that leaves you with a sense of 'I can cope with this.'

The baseline of activity doesn't have to consist of much and indeed my baseline is quite basic. It involves an activity in the morning, an activity in the afternoon, and an activity in the evening (when I say activity I mean something that is not resting, I don't mean hiking up a mountain). I also try to schedule some 'outside' time once a day even if I don't feel like it. In between activities, I have different modes of resting - cup of tea resting, radio resting, TV resting (not for long), meditation …