Tag Archives: health

Reflecting on The Amazing Technicolour Pyjama Therapy by Emily Ackerman

So, after my review of The Amazing Technicolour Pyjama Therepy, I thought I’d share a few things that have made me think – after all, such a book is only any use if it changes something in you.

Perhaps some of these things are issues I should have ‘dealt with’ by now.  But grief and loss are like an onion, there are many many layers.  Just when you come to terms with one aspect, another is uncovered and needs facing.  The length of the situation also means strategies that have worked, no longer do, or things you had worked through need taking out and looking at again as time gives them a different hue.

There is much in this book that is thought provoking and challenging, these are some of the ones that hit me where I’m at, some of which I tweeted the quotes from.

“Look on managing your illness as useful work” (p25) That is all I can manage, however different I might like it to be – and that has to be OK.  Somehow, I have to find a way to be me, this new, alien, different me, outside of my role – whichever role that is.  What I can do now is different to what I could do.

That brings a huge sense of loss, and can go on doing so as those losses are re-enforced, or newly discovered for the first time.  I think new losses will be realised as life with chronic illness goes on, but when we come to them the loss has to be faced, stared straight in the eye, acknowledged and dealt with.  That doesn’t necessarily meant that you ‘get over’ it, but you have to find a way of living with, or else the pain becomes crippling – and were back to the Pile Under the Carpet again!

Life, reality, what I can and can’t do are very different; they look and feel so far from where I once was – a life I was quite happy with.  Somehow, this life has to become as useful and pleasurable.

So, I know I only function well for 30-45 minutes, beyond that I’m gone.  I know I’m better in the mornings, I don’t do afternoons at all (I sleep for a good couple of hours and if I don’t it’s not good) and I’m not much better in the mornings.  SO I deal in small chunks and I do it early.  What isn’t done by 11ish will not get done that day.  That is what I have learnt in being an expert on me 🙂

(Oh and try telling the DWP that managing your illness is a full-time job!!)

“love and forgiveness is costly because it means letting go of my version of the past” (p95) for most of us our past was precious.  We were having a whale of a time until chronic illness struck.  Being chronically ill is not generally a reaction to being miserable, or a pleasant escape from a life we were hating.

So, chronic illness brings up many emotions: guilt, anger, resentment, self-pity, bitterness, loss of confidence, frustration and fear are mentioned in the book.  Yup! And some…

But those emotions can easily become misdirected.  So much is lost, but am I blaming the wrong person?  Invisible illness brings with it a whole new set of possible misunderstandings – but they’re not necessarily anyone’s fault.  Calm explanation may be better than exploding – but that was never my strong point 😉

I need to take time to stare those losses in the face, acknowledge them, feel the pain; from then a new foundation can be built – not on the past, but the future.

“God is always on the move and he wants us to come too” (p117) has to speak in to that.  Whatever I have lost, there is a tomorrow.  Maybe not the one I envisaged or might have chosen, but one that God is in nonetheless – and he is still going to be working in and through me there.

“I should work at meeting my own daily challenges, not peek over the fence at my past or my neighbour” (p121) that might be far healthier!  My life is my life, only I am responsible for it.  This is how it is, and I am the only person that can live with it.  The past has gone, it would have anyway.  I can only deal with what is before me now.

“Worship is about God surely.  It’s about putting him first, focussing on him and clearing a space from other pursuits and concerns to consider his beauty.  It isn’t about how I feel, where I am or what I do with my body.” (p179) This is a biggie.  Having been a Presbyter in Circuit work, worship was the bread and butter of my life.  It challenged and inspired me – but I was also responsible for how I worshipped.  So much of my identity was tied up in worship and how it was led.  Now I have to find a way to engage with worship that works for me.  I can’t sing, sitting is not always comfortable, my attention span is assaulted – your average act of worship is difficult for me ‘get on board with’.

BUT that is all about me.  What about God?  Where is his ability to meet me where I am?

Wake up call – worship is not about me, or even what I can and can’t do.  It is a meeting with the holy God, a place of encounter, of healing (in it’s broadest sense), of finding peace and being challenged; of hearing from the God who is far bigger than anything I can or can’t do.

And then there are some things that are useful for others to know, things I’d like you to know, not to moan, but to perhaps help you to understand me and where I’m at better:

“The sick are exiled into a strange and scary place, leaving behind great chunks of their previous way of life.  It’s a lonely transition” (p2) I cannot emphaise enough the truth of this.  However ‘sorted’ I may come across, or not, I am in an incredibly lonely place.  However long I have been ill, the path goes on, and each twist and turn can be scary.  Each day is new and I am exiled in a land not of my choosing.

“Illness related fatigue is nothing like healthy tiredness. It’s like a very heavy wet blanket pulled over your head that squashes you flat” (p37) This is not just ‘being tired’ or in need of a rest.  This is an all consuming exhaustion that makes your head spin and your body shake.  Accompanying that is the inability to think straight, never mind make sensible decisions!  A sit down doesn’t make it better, neither necessarily does just sleep.  It is not possible to imagine or understand if you haven’t been there.This fatigue goes hand in hand with so much chronic illness, and adds to the delight of trying to cope.  Dealing with illness is hard, dealing with the practicalities are energy sapping and time consuming – doing it when you are already exhausted can be mind-blowingly difficult. I’ve linked to this before, but it explains this kind of fatigue so well.

“It’s painful to feel overlooked or misunderstood by members of your church” (p189) Sadly this is also a great pain and burden.  The place you want to belong, sometimes feels like the place you are most rejected or sidelined.  It is the place I should have so much to offer, and yet I can’t.  Not withstanding what I have said above about worship, church too can be a place of exile.

These things are particularly hard, when you thought people understood, only to realise again that they don’t.  Why should they?  They are not walking in my shoes, they have their own with their own pinches.

But unless we talk and keep on talking, how will any of us know?

These are just some of the nuggets this book contains.  I’m sure if I read it again different things will jump out.  There is more I could say, but why not read it and see what it has to say to you.

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Book Review: The Amazing Technicolour Pyjama Therapy by Emily Ackerman

The Amazing Technicolour Pyjama Therapy by Emily Ackerman was reccommended to me by someone else who suffers from chronic illness.  It is unusual to find a book that comes at ‘living with’ from a faith perspective, so I thought I would give it a go.

This post will review it, at some point I may write reflecting on what it says to me where I am.

Emily writes this book from her own perspective and experience of being a doctor before illness put an end to her professional career, so she writes with true understanding.  It is based, if you hadn’t guessed from the title (and I hadn’t – that’s how much brain fog I have!) around the story of Joseph – he of the Technicolour Dreamcoat fame, and the losses he had to face in his life.

There are chapters about a wide range of issues involved in facing life-changing issues.  Chapters range from working out how to get the rest that you need, family issues, work, church and faith, and a final one on facing terminal illness.  At all points practical, emotional and spiritual challenges are tackled.  The sub-title is ‘And Other Ways to Fight Back Against Life-Changing Illness’ and that is essentially what it is, a book to face the reality of where you are and perhaps find a (better) way to live with that.

The book is written with a very jaunty appearance.  An easy to read font, nice arty squiggles and some cartoons – which are very funny!  Each chapter is broken down into manageable chunks if that is all you can manage.  It is interspersed with helpful bible passages and at the end of each chapter there is a ‘For Reflection’ section, with questions to help you do just that.  Each chapter then concludes with some witty and poignant quotes.

But for all it’s jolly appearance, The Amazing Technicolour Pyjama Therapy is not an ‘easy read’.  Much of what it says is profound, and I had to keep stopping, sometimes for days, to let it sink in and work out what that meant for me.  The Reflective questions were particularly helpful with this.  This is not a book to jolly you along, or I didn’t find it so, but a book to make you really stop and think at where you are with your illness and it’s effect on your life.

Much of this book was very helpful.  However, I did find some of it a bit simplistic, for example regular comment is made on ‘choosing’ to think or behave differently.  If only it were that simple, I wouldn’t need to be reading this book!  Perhaps that’s something I need to work on… Or the comment that, “every believer will be useful in heaven” (p186), the kind of comment that I find really unhelpful, but it may be just what someone else needs to know.

I was also slightly disturbed by Chapter 11 on Healing, where I read a suggestion that sin can be the cause of our illness, or illness used as a discipline.  This is certainly not my theology.

However, it is always good for a book to have parts that bring you up short and think, ‘do I believe that?’ ‘What do I believe?’  And I was delighted to discover someone with the same analogy as mine of Sweeping Things Under the Carpet!

So, all in all, if you are looking for something to help you learn to ‘live with’ and even live well with this a useful book.  It will offer you practical advice as well as challenge attitudes.  It is going to keep me thinking for a while…

Thank you Emily for writing it.

Caring for The Battered and Broken

This is part three.  Having looked at health, or lack of it, and healing; how can someone on the outside help?

Pastorally we have to be prepared to be alongside people as they go into their own desert.  People need to be able to pour out to someone the fears that they have buried deep, or that are bubbling near the surface.  Just sharing those feelings with someone can make them less frightening, as they are acknowledged.  People may be reluctant to express such deep personal feelings that pain and suffering bring.  One of the privileges in life is being the one someone feels they can ‘let go’ to.  Someone ‘putting on a brave face’, may just have no opportunity, or tools, to face or express their fears.  They may need some company, some care, some holding.

Norman Autton in his book, Pain – An Exploration, makes the  comment that children should always be given permission to feel pain.  Adults too, particularly sometimes christians, need to know that there is no need to be brave or ‘cope’.   Feeling the pain is the only way it can be let out for healing.

Denis Duncan in Health and Healing: A Ministry to Wholeness reminds us that christian pastoral care, including to ourselves, is the acceptance of people where they are, in order to take them to where God wants them to be ‘warts and all’.  This is very positive, except that we can never take them.  What we can do is accompany them as they make the journey there themselves.

What anyone offering care needs is sensitivity.  Such comments as, ‘Every cloud has a silver lining’ are not particularly helpful when it doesn’t feel it.  It may ultimately become true, but takes reconciling to the situation first. There will undoubtedly be some positives to come from the suffering, but that does not remove the pain of the struggle.  It can be too easy to produce platitudes that nothing can separate us from the love of God, or that there is glory waiting beyond the tears.  I firmly believe that

all things work together for good for those who love God  (Rom 8:28),

but at times of struggle it was the last thing I wanted to hear.  Not because I no longer believed it, but at that time I could not assimilate it into my experience.  To glibly quote scripture references can show total lack of empathy and can appear to belittle the problem.

If we can, however use the bible sensitively and positively, there are many verses that do offer hope and comfort.  For example, Isaiah 43:1-2, reminds us that God is with us in situations that threaten to consume and overwhelm us; Psalm 23 speaks of the Psalmist’s assurance that God is with him in the valleys; and for me Habakkuk 3:17-20 encapsulates the acceptance and ability to live with having no answers, but finding something in that, and still being able to cling on because of his trust in God, when everything else has disappeared.

We should not be afraid to say that we have no answers, there is more honesty in that than trying to grope for quick-fix solutions.  And honesty is the one thing that is appreciated.  Sometimes nothing more is needed than a being with.

And that is the point I come to.  If it sounds positive, it has come from a place of great pain. Only the answer has survived on paper – but the pain was deep and life-transforming.  Ask those who were around me then how many times I preached on being in the desert – because that is where I was and all I could do.  I’m not trying to put just a positive spin on it, but to try to share some of what I learned, and in sharing it all again, it has helped me with where I find myself again.  Healing and wholeness are ongoing.  Living with ongoing illness regularly throws up new discoveries and realities to be assimilated. As does life for each one of us.

I hope sharing this has helped someone.  If you’ve got any comments, please share them below for everyone to share in.

I’ll leave you with my conclusion, that sixteen years on and a few crises later, still, I think, holds true:

So for me, both personally, and as a basis for pastoral care, there has to be the offer of healing and wholeness, whatever the state of our mind and body.  It may not be healing as we would like it or recognise it, but that does not mean it is not.

I believe firmly, passionately and with experience that we can lay our pain with the one who took our pain upon himself, and receive Life in its true fullness.  If we do not believe that what else have we to offer to a hurting world?

And so I return to my very practical definition of healing:

accepting all that we are, and all that we will never be, incorporating that into ‘me’ – and being able to live with it.