Living with pain and illness

Part 2 – Living with pain and illness

The title of Vidyamala Burch’s book, Living Well with Pain and Illness, sums up this second blog in the series: living well.

Those of us with chronic or long-term conditions generally don’t want to spend our lives ‘battling with’, ‘fighting against’, ‘suffering’ or any other helpful terms we seem to get lumbered with.  And yet these are the terms we hear and read all the time; even the well-meaning ‘you’re coping so well,’ seems limiting.  Is my life now reduced to coping?

All this terminology is negative, aggressive or submissive, hardly the environment in which to enjoy a fulfilling life.

So how do we change this?  Well, as usual, change starts with ourselves.  By changing how we relate to our condition we change the effect it has on us.  This isn’t easy or quick, like anything worthwhile it takes work, and I am not claiming that meditating every day will mean you can avoid any discomfort for the rest of your life.  I wouldn’t like you to get the false impression that I spend every day floating around in zen-like serenity either. I have a family, work, real life and chronic illness. But I have tools.

So here are some of the stages of living with chronic illness based on my own experience and the work of people such as Burch, J K Zinn, Dr. David Hamilton, Sharon Salzberg and others.

Stage 1 – Acceptance

Whenever I talk about this in groups I always feel a shudder go through the room.  We have a resistance to accepting that we are ill, maybe admitting there is an illness will be negative and we need to keep positive to get well. It’s true, we do need to keep positive but that doesn’t mean pretending that things are different from reality.

Acceptance isn’t about giving up, nor is it a ‘grin and bear it’ mindset and it has its own stages.  For me acceptance meant working through denial, anger, frustration and blame until I finally realised that wishing things were different or that someone would magic everything better wasn’t helping.  I had to learn to deal with what was.  I had to turn towards my pain, recognise it and stop fighting it because when we fight ourselves we can only lose.

Nor is acceptance a one-off activity. My experience (and that of many others I have spoken to) is that after this initial acceptance comes a pattern of daily acceptance.  Waking each day to pain and physical limitations means going through this process every morning, but I have learned that I have two choices: I accept the way things are and work with them (much more pleasant) or I stay angry, sad and frustrated (not pleasant at all).

Mental noting exercises can be very useful here, just noticing non-judgmentally how you feel about your pain or illness as well as noticing the way your body feels.  Mindful breathing including the three-minute breath and awareness breathing can be very helpful in acknowledging where we are each day or in each part of the day.  Are we pushing ourselves too much? Avoiding acceptance and storing up problems for later? Do we need rest?

Stage 2 – Letting go

Once we have accepted the way things are we have to let go of the way we think things should be or were going to be before we got ill. We go through a period of bereavement, sorrow at our lost future – and we need to let go of those negative feelings that crop up every day.

Human beings like the security of ‘knowing’ what the future will be like.  we make plans about our jobs, families, relationships, holidays and so on.  When chronic illness arrives (not planned) this throws a huge spanner in the planning area of the brain.  The future is uncertain, even today is uncertain.

So we learn to let go of the need for certainty. This is scary and in my own meditation practice I literally visualised myself jumping off cliffs and into deep ravines until I had overcome the fear of not knowing.  I completed lots of Hot Air Balloon meditations and similar; anything where I could visualise letting go of negative feelings and fear about the future until gradually the word ‘fear’ came up less and less in my consciousness. It still appears from time to time but I am able to accept the fear and then let it go, breathe it out, and so prevent being drawn into that feeling and being stuck with all the negative thoughts and worries that accompany it.

The decision to give up my career in teaching was difficult, I had worked hard to achieve what I had but it was no longer right for me.  I hoped that as this door closed another would open.  I was wrong.  So many doors opened that I was overwhelmed for a while, suddenly life was opening up to me with opportunities I had never imagined were there.  And I found that letting go of the idea of what I ‘should’ be doing, or ‘needed’ to do had allowed me to find where I am meant to be.

Stage 3 –Compassion, Kindness and Gratitude

The next stage I moved onto is where I am now: self-care.  This stage is a mixture of the above.  I learned to be compassionate with myself, to treat myself with the same level of kindness I would treat a child or someone who needed my care, or quite frankly any other human being would have had more kindness from me than I had been showing myself.

I complete regular compassionate body scans, I breathe kindness into my body and remember that it is doing the best it can.  I stop myself when I feel like berating my body for being too slow or too painful remembering that I am just wishing things were different.  Things are the way they are and wishing will not change that, just throw into larger relief the shadows of the monster I am hiding from.

Gratitude has become a major part of my ability to live well.  When I was lying in bed, unable to see to read, worrying about the side-effects of the medication I was on and only the radio for company, I heard an interview with a woman in Syria explaining how it was impossible to get basic medication. People were suffering not just from the obvious effects of war but from their long-term conditions which had previously been managed but were now crippling them with pain, people losing their eyesight because they couldn’t get access to the medication I was complaining about having to take.

I pictured myself in my comfortable bed with clean sheets, access to a bathroom with running water, all the medication I needed, nutritious food and hot drinks brought to me and realised I had no right to feel sorry for myself.  I realised two things then: everyone carries a burden – this is mine and I can choose how heavy or light I want to make it. Secondly, I don’t carry it alone and I have much to be grateful for.  Now I am grateful every time I make a cup of tea because there have been many occasions when that was not possible.

Regular Loving Kindness Meditations, Compassionate and Gratitude body scans, and using mantras and affirmations have become part of my daily practice. These help us feel less pain, and the pain we are aware of reminds us of the need for self-care.

So, practice loving yourself.  Consider what you would say to a best friend in your position and whether you need to change the way you talk to yourself.  Picture yourself as a mountain, able to withstand whatever changes the weather throws at you, feel yourself rooted deep in the earth and reaching up into the clear air of the sky remembering that it is OK to just be.