Tag Archives: pain

Spare a Thought

By Produnis (Own work) [CC BY-SA 4.0 (https://creativecommons.org/licenses/by-sa/4.0)%5D, via Wikimedia Commons
If you are celebrating this Christmas time, and why shouldn’t you?!, please spare a thought for those who aren’t or can’t…

for the person visibly struggling, and the one sat quietly in the corner;
for the one trying to make the best of it, and the one trying to pretend it isn’t happening;
for those whose pain and struggle we know of, and those who we have no idea of the burdens they carry;
for those who wish today was different and those for whom every day is the same – and not in a good way;
for those who don’t have food to eat, a roof over their head and don’t have the luxury of ‘being ready for Christmas’;
for those who have no one to buy gifts for, and those who have nothing to spare on such luxuries.

for the mourning, wishing that person was here;
for those with no answers, wondering when, or if, they will ever know;
for the scarred, and the scared, for whom today is just another day of fear;
for those for whom a change of routine is confusing and frightening;
for those who can see someone they love slipping from them;
for the chronically ill, for whom today is just another day of dealing with symptoms and managing treatment;
for those for whom today is just another day of work

for those who so want today to be different, and know it isn’t;
for those who want to join in, and can’t;
for those who wish they were somewhere else, and aren’t

And the food and the decorations and the celebrations make no difference, for today is just another day of pain, hurt, dealing with life…

Think of them and if there is anything you can do to make this Christmas different, or just hold them and remember not everyone is celebrating



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.

Happy Christmas?

“Happy Christmas”, the ubiquitous greeting of the season (or even worse “Merry Christmas”).

When did we come by this insistence on being happy in life?

Many people are in a circumstance that is far from happy – but still we think they should be. Especially linked to the ‘perfect’ family Christmas.

But life is not like that.  People are in pain, missing someone, missing anyone, alone, hungry, sad, struggling with bad news or any number of other situations that mean they are not ‘happy’ – but that does not mean Christmas, or more especially God, is not for them or with them – but it doesn’t have to be happy.

Today happens to be the Feast of the Holy Innocents. A Day to recall Herod’s fury at being outwitted by the Magi and God and takes it out on the infants of Bethlehem:

Matthew 2:13-18 (NIV)

The Escape to Egypt

13 When they had gone, an angel of the Lord appeared to Joseph in a dream.“Get up,” he said, “take the child and his mother and escape to Egypt. Stay there until I tell you, for Herod is going to search for the child to kill him.”

14 So he got up, took the child and his mother during the night and left for Egypt, 15 where he stayed until the death of Herod. And so was fulfilled what the Lord had said through the prophet: “Out of Egypt I called my son.”

16 When Herod realized that he had been outwitted by the Magi, he was furious, and he gave orders to kill all the boys in Bethlehem and its vicinity who were two years old and under, in accordance with the time he had learned from the Magi. 17 Then what was said through the prophet Jeremiah was fulfilled:

18 “A voice is heard in Ramah,

    weeping and great mourning,

Rachel weeping for her children

    and refusing to be comforted,

    because they are no more.”

Rachel is weeping.  She cannot be comforted.  There is no comfort for a child ripped from its parents in whatever circumstances.

Culturally we are rubbish at acknowledging people’s pain and anguish.  We certainly don’t like public displays of it.  Much easier if people could at least play along at being happy.  But that is not acknowledging real life.  Rachel is weeping.  That is how it is.  Real life and emotion are allowed.  There is no sticking plaster, no chivvying to cheer up, she is comfortless.  That is her reality – and it is ok to be so.  A healing will grow, she will be able to live with the raw pain, but not today.  Today is a day of pain and raw emotion.  And God is in that.  He sits with it, with her.  God holds her and all who mourn, and weeps too.  Our pain is God’s pain.

Surely, church should be the one place where we should be able to be real and honest, to open up to how it really is; but we are not much better at it.  We should give space for however people are feeling – bad and good.

Christmas has long been a struggle for me.  I know I am far from the only one.  This year is even worse, the Circle of Life has gone very wonky.  Yes there is hope and promise – but not today.  “Happy Christmas” grates.  Yet to be honest I’m not sure how you phrase it better.

Why do we have to be happy?  Yes I am grateful that God is born in human form, but does that mean I have to be ‘happy’, fixed grin, false jolliness and the lot?  Surely if the good news of God born among us means anything, it means that he is with us in the good times yes, but also in the dross and pain.  That is what the coming of Jesus, and the power of it, means to me – that he is with me however I feel.

I’m with Rachel in her pain.  So are many others.  I’m musing on a culturally acceptable way we can acknowledge that, and get away from the assumption that just because it’s Christmas everyone is having a fabulous time.

So I wish you the ongoing love, hope, peace and comfort of the Christ-child.  God born among us.  God with us – whatever the circumstances we find ourselves in, whatever time of the year.

Thank you Lord
for coming to earth,
for coming to reality,
for experiencing human life,
and indifferent.

Thank you
that your presence is not just for good days,
but for how it is;
that I don’t need to pretend,
or put on a good show
for you,
because you know.

Thank you
for your presence
in happiness and joy,
but also in pain
and weeping.

May I walk
in your presence,
and peace;
and know you with me
whatever the circumstances