Tag Archives: chronic illness

Reflecting on The Amazing Technicolour Pyjama Therapy by Emily Ackerman

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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.

Book Review: The Amazing Technicolour Pyjama Therapy by Emily Ackerman

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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.

The Isolation of Chronic Illness

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This is a processing post.

I was thinking this morning how long it is since I’ve seen an actual human being.  Then began to think back over how many I have seen in the last 10 days – it was less than five.  If you take out my family it was two – and one of them was my GP!  The other was a faithful friend who ‘gets it’ and knows how much I value contact.

You see, the problem with chronic illness is you can’t go out much.  You can’t think ‘I fancy doing’ and go and do it.  You can’t meet people for lunch, pop to the pub, go and mooch round the shops, or many other everyday activities – not easily and as a regular occurrence anyway.  You don’t reliably have the energy/someone to go with you to make it possible/the resources etc etc…  The actual wherewithal to just get out of the house may not be possible.  You can’t plan ahead because who knows if you’ll be having a good day or a bad day.  And actually once you get somewhere, you can’t stay long anyway!  Today, in desperation, I thought perhaps I’ll just take my book to the park to read for a change of scene.  But once I thought through if I could make it there, I remembered there probably wouldn’t be a seat comfortable enough for me to sit on.  I could take my own, but unless I want to sit in the car park, I’d have to carry it.  Hmmm… (and I know I’m lucky in that I can get out for brief excursions sometimes)

If you are ill with, for example, a cold or a broken leg it is for a short time.  You feel too ill to see anyone or do anything and when you’re better you’re back up and at ’em; or you can amuse yourself, because after all, we all crave some rest, or have a box-set we’ve been desperate to have time to watch.  If you have a chronic illness, that goes on and on.  You continually cannot do what you want to.

Another aspect is that if you are, perhaps, in hospital, or ill at home for a time, people come to see you.  It is an abnormal event and people come to sympathise and cheer.  People cannot continually do that if you are chronically ill.  They cannot be expected to.  It is not an abnormal event but how life is.  Everyone is busy in their own life, they see lots of people day in day out – probably too many, and peace is what is craved.  And to be honest, though lovely to see them, sometimes even the effort of someone coming to see you is just too exhausting – it’s a vicious circle.

It’s also difficult to know if someone with chronic illness is ‘more ill than normal’, because you don’t always see them around anyway!  So how can anyone know that a situation needs responding to?

All of which adds to an isolated and isolating situation.

I don’t have any answers.  I guess I’m just waving a bit of a flag.  Does anyone else have any answers or suggestions?  I know it must be much worse for others.