A lament

Here is a post I wrote back in June 2015 but didn’t feel able to publish – now I do. It’s strange reading it how relevant it still seems, though a little less raw now as I’m becoming more adjusted to this new ‘normal’

NB this is not a post for pity or sympathy, it’s simply a post to put in to words some of my complicated experiences of grief relating to having a significant and longterm (chronic) illness – I hope it will help build understanding and put things into words for others who experience similar things but are unable to articulate them at this point in time.

It’s generally accepted that grief – our natural response to the experience of loss – has 5 stages:

Denialnumb, acting as if everything is ok, in survival mode, isolation

Angeragainst other people, yourself, God, the situation in general, people responsible, the unfairness of it all – at the root of the anger/frustration is pain

BargainingAsking questions, trying to understand why, attempts to regain control, e.g. ‘if only…’ or ‘what if…’

Depressionsadness, regret, worry, guilt, wondering ‘What’s the point?’

Acceptancelearning how to be at peace with the situation, accepting reality for what it is, recognising what has actually happened and learning how to live with it

They say that grief is not a linear process – it’s not like you go from one stage to the other in a neat order and when you get to the end someone pats you on the back and says “Congratulations, you have successfully grieved, here’s a certificate”.

In reality people might go from one stage to another and back again many times over, in any order, or stay in one stage for a long time or even experience several at once.

Any kind of grief is incredibly complex and every person will experience it differently – there’s no ‘right’ or ‘wrong’ way to grieve.

The stages aren’t meant as milestones you have to pass in order to get to the next level, they’re there to reassure people who are dealing with any kind of loss that the thoughts and feelings they’re experiencing are completely normal.

Having said that, I’m starting to wonder if grief associated with chronic (longterm) illness might have its own ‘normal’, partly because there are so many layers to the loss – every single part of your life has been ripped apart by your illness – and partly because it’s ongoing, so there’s no point of closure.

Some of the things affected by my experience of chronic (continuous and longterm) migraine include:

Lifestyle – my condition has significantly affected my job, my social life, my hobbies, my leisure activities, my finances, my holidays, my experiences of community and connection and what I’m able to do on a day-to-day basis.

Relationships – through nobody’s fault, my relationships with people have naturally changed since the unwelcome visitor of chronic illness was thrown into the mix, from being limited to when and how I do things to the awkwardness that it brings when neither of us knows what to say or do any more. And the guilt, however much people tell me not to, the guilt that other people are having to look after me, the guilt that other people are doing the things that I am meant to be doing and want to be doing, the guilt when I have to change plans, the guilt that I can’t be the wife, friend, daughter, colleague, that I want to be.

Identity – my experiences have shaken my identity to the core, challenging every aspect of who and what I am and why I’m here. They’ve made me ask questions I never wanted to ask and didn’t like the answers to, mainly because there are no answers. I’ve lost all my foundations and assumptions about life, myself and everything – I deeply miss the relative simplicity and certainty I used to have.

I’ve lost freedom, independence and opportunity,I’ve lost choice and control, I’ve lost all sense of safety and security, I’ve lost my identity and my purpose.

All of these things represent a loss, so I’m grieving for each of them in some way or another – usually in some crazy, confused and jumbled up way that makes sense to no one, least of all me!

On top of all of that I’m having to let go of my hopes and dreams for the future and grieve each one in turn. I’m even grieving for the innocence with which I dreamed those dreams and just assumed that life would turn out ok.

I’m also grieving the times when I could take my health for granted, when I never even realised what a wonderful gift it was – before the intense vulnerability that comes from knowing that I can no longer trust in my body and brain to do the things they’re meant to do – they’ve failed me and even if they get fixed this time around, that basic trust I once had has gone.

I’m grieving because now I know that my body is weak, my brain is faulty and because I’ve seen where my mind can take me on bad days.

I’m grieving for all the days I’ve lost so far, for birthdays, weddings, meals, dinner parties, gatherings, lunches, coffees and all the passing conversations that I’ve missed and for the loneliness that comes from being ill.

And I’m grieving for the days that stretch ahead, all the days to come that will continue to be an uphill struggle because that’s just the nature of the beast.

I’m grieving for all the time and energy spent on fighting battles no-one will ever see, and for all the things I wish I could have been doing instead.

I’m grieving the fact that I’m not one of the fortunate few who discovers their miracle cure, all the prayers for healing have not been answered, there’s no fairytale happy ending, just the dawning realisation that we’re in it for the long haul.

And I’m grieving for all the time I lost while holding on and longing so desperately for the life I wished I had, which meant that I couldn’t live the life I actually had.

I’m also mourning the realisation that there’s no going back – even if I was totally cured tomorrow I couldn’t go back to where I was because the world and it’s people have moved on since I’ve been gone. And even if they hadn’t, my experiences have rocked me so completely that I’m now a fundamentally different person.

I’m faced with the task of carving out a new place in a world that is both familiar and alien, with a body and brain that don’t work properly any more, in circumstances that I don’t want but can’t change, and I have to somehow wade through all these layers to come to some kind of place where I can move on.

But the grief will still be there as a companion on the journey. It never fully goes away, you just get more used to dealing with it and the pain begins to hurt less often. Grief has no time-limits and no ‘right’ or ‘wrong’ ways of working through it – grief will do what grief will do.

Given how many things are lost when longterm invisible illness takes hold, I think grief is probably quite an appropriate response. Maybe I shouldn’t be surprised when I feel a bit overwhelmed sometimes.

Everything has changed, but all is not lost.

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Blue Bird Scarf: An Analogy for Loss and Grief

Post written December 2015

Loss: the suffering that unites us all

We can probably all connect with a sense of loss, because we’ve all experienced it.

Whether it’s the loss of a loved one, by death or by separation;

The loss of an identity or purpose when a role or job is lost or changed;

The loss of a future hope or dream that’s no longer possible;

The loss of our freedom or choice when people or circumstances dictate things that are beyond our control;

Even if it’s just wondering where all those odd socks went, we probably all know something about loss. I lost my scarf in town today. It’s exciting that I was able to be out and about but I was gutted to have lost my scarf and I didn’t realise until I got home, so I had to get back on the bus and head back to town to retrace my steps.

I don’t know why but on the bus back in to town I felt an overwhelming sense of sadness and loss.

This illness has meant many losses; some big, some small and some so huge I’m only just starting to process them. Whether I like it or not, loss is very much at the front of my mind at the moment. 

And so I got to thinking of all the ways the scarf represented my loss, all the ways I was trying to brush off the sense of loss when actually it hurt, and all the things that we sometimes say when people are experiencing loss that might not be as helpful as we think. 

So here are the things I said to myself on the bus to try and tell myself it didn’t matter and I should pull myself together, and why it didn’t really help at all.

It’s helped me to understand loss in a different way and to know a bit more about what to say (or what not to say) to people who are hurting because of loss. I’ve shared it in case it helps other people too. (I know the analogy is trivial but it made more sense to me that day thinking about a scarf than it does reading formal books on grief etc so I hope you will forgive me).

“It’s only a scarf” – what looks like ‘only a scarf’ to the outside world means something to me, it makes me think of freedom and flying high and going to new places. It also represents all the other hurts and losses underneath. If I just lost a scarf and everything else in my life was hunky dory I doubt it would bother me so much. Things that bother us are rarely ‘only a scarf’.

“You have other scarves” – yes I do have other scarves, lovely scarves, but I don’t have any other scarves like that one. Nothing else in my life makes the loss ok, no matter how good or beautiful or great those things are.

“You can get a new scarf” – yes, I could get a new scarf, but I will never get another scarf exactly like that one. I’ll never get something with that exact same blue or that exact same green, with those exact same birds on. Nothing will ever replace the thing that I’ve lost.

“It could be worse” – yes, it could always be worse, I could get trampled by a raging baboon and then have to sit through an out of tune opera. But it could also be a whole lot better, I could find a winning lottery ticket and jet off to sip cocktails in the sun. Having somebody else point out the positives just makes me feel like a failure for feeling sad about something that I actually have every right to feel sad about. When things are going tough we want someone to listen, really listen. We will find the positives ourselves, when we are ready, and not because somebody else has tried to point them out to us with some annoying cliche.

“You can learn from this” – clearly I did learn from it, I’m even writing a blog post about it, but what we learn from an event doesn’t justify the event itself, it’s not the reason for the event happening. Bad stuff happens in life. Sometimes really bad stuff happens in life. Even if good stuff comes from bad stuff, it doesn’t make the bad stuff ok. It’s not the reason for the bad stuff happening in the first place, and trying to justify it in that way will just tie us up in unhelpful knots. We might choose to bring good out of a terrible situation or event but no outcome, however good, will ever justify the thing we had to go through to get to that place.

“It’ll be ok” – Will it? How do you know? Can you promise me that? Really? The experience of loss and grief shatters our very senses of being and knowing, the foundations and assumptions we’ve built our lives on are gone and we’re left wondering which way is up. The only thing I know for sure is that I don’t know anything for sure any more. All I want is to know that people will walk alongside me through this new uncertainty. I don’t need answers because I know there aren’t any, I just need people to be willing to come on the journey with me.

By that time I’d reached town and had to get off the bus, but there are probably plenty of other things I could add to the list, and probably plenty more you could add too if you were making a list of your own.

Fortunately I was lucky: after lots of trailing round town I eventually did find my blue bird scarf, thanks to some kind ladies in Boots.

Sitting on the bus, on my way home for the second time, I wondered what we’re left with if we want to support people going through loss and grief. 

So many of the things that feel ok to say at first sound empty and hollow once we’ve actually experienced grief and loss for ourselves.

As I sat on the bus with my favourite scarf wrapped snuggly around my shoulders I realised that it’s really quite simple – all we need to do is be there for people, ask how they’re doing and listen to their answer; be a comfort and walk alongside them. 

We don’t need posh words and fancy answers, we don’t need to worry about saying the right thing, it’s about how we listen not what we say (we often don’t need to say anything at all).

It’s just one human being connecting with another human being and allowing them to express their loss, whatever that loss might be.

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Life is a rollercoaster

The last few months have been a bit of a rollercoaster.

The best bits have been setting up a business and starting to do some work which has been really exciting.

I’m better than I was and able to do more which is amazing.

It’s great when I look how far I’ve come and frustrating when I look how far there still is to go, but I’m also very aware of friends and people I know going through really tough times at the minute and I’m incredibly grateful for all the things I do have in my life.

The down bits? I’ve recently lost two close family members: my lovely mum-in-law died very suddenly and totally unexpectedly in February, less than 12 hours after my grandma had also died. It’s been a total shock ¬†and completely devastating, turning everything upside down and inside out.

 

Lilies: my Mum-in-law’s favourite flower

 

There are several unpublished posts I’ve written previously about grief that I’ll probably be revisiting as things unfold.

At least I’m keeping my counsellor busy!

I’m hoping to be on here a bit more as some kind of new normality starts to form.

For now though, hello again.

I hope life is treating you well, or if it’s not that you are giving it some kind of kick-ass response in return!

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A hope and a future

I’ve not blogged for a while, a long time in fact. 

It’s been an intense few months of finally starting to come to terms with this new life I’ve been landed with and it’s left me a bit too raw to write publicly – but after a brilliant weekend away with an excellent group of young people and some really helpful conversations with various people, I’m feeling in a much stronger place to share a bit about where things are at.

With the help of friends, family, a counsellor and my ever-amazing husband I’ve started to wade through the countless layers of loss and grief. It’s been messy and painful and not at all pleasant but it’s a bit like the story we used to love my Dad telling us as kids ‘We’re going on a bear hunt’ – you can’t go round it, can’t go under it, got to go through it. So that’s what I’ve started to do. 

I’ve been angry and sad and numb and everything in between.

But the thing I’ve felt most is lost. 

I don’t know who I am any more. I don’t recognise this person I’ve become. I hate the limitations this body and this brain place upon me. I miss the things I used to be able to do, from the big and exciting to the small and  everyday.

And I miss feeling like my life has meaning, because for a long time I’ve been desperate to find some kind of meaning in all of this but there just isn’t any. It makes no sense, and it feels like my life makes no sense.

I’ve been feeling like I have no purpose, and that’s been really tough because we all need purpose. I can try and find purpose in the small things I’m able to do but it’s not enough, I’m just not satisfied with that. So I’ve been searching and trying and pushing myself harder than I should and then crashing harder and just getting more and more frustrated.

Then over the weekend away with the young people, my burnt-out life has been rekindled with fresh hope.

I’ve been encouraged to wait and to use this time in my life to learn and grow, because there’s always more going on than we can see and who knows what lies ahead.

We all have a purpose, even when things look bleak and we can’t even imagine what the future might hold.

My circumstances might mean that my path is going to look different to the conventional routes most people take in life, but I’m getting more ok with that. 

I still have a purpose and my life still has meaning, even if it isn’t turning out anything like how I expected it to.

I’m going to wait, even if I have to wait a really long time, and see what paths open up. Who knows, maybe they’ll go somewhere amazing…

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Progress :-)

It’s been a while since I’ve blogged, and fortunately that’s mainly for good reasons.

The combination of treatments is enabling me to feel like I have a quality of life at last – which is wonderful after being so constrained for so long.

On good days I’ve been able to go out with friends, go for day trips out, go to a wedding and generally do far more than I’ve been able to do for ages, which makes the bad days so much easier to deal with.

I had fun on Tuesday going to Liverpool to the north west neurology centre to get a greater occipital nerve block (injections in my head!) and an MRI scan, totally rocking the hospital gown look, oh yeah!

My husband came too and we managed to fit in a trip to the Albert Dock to eat some awesome burgers and pretend to be cultured at the Tate gallery (but instead just got thoroughly confused)

I’m finding everything feels like an amazing treat, even the tiniest things, and I’m just so pleased to be living this thing they call life

Hope you all have a good weekend – live every minute and do something awesome!

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What does migraine mean to me?

It’s migraine awareness week and The Migraine Trust have suggested that people share what migraine means to them, so here goes…

Migraine means regularly experiencing pain that made a broken foot seem so insignificant I didn’t even notice, but also discovering an inner strength beyond anything I ever thought possible

Migraine means losing the use of my left side on a regular basis and having to ask for help with simple things like taking off a jumper or cutting up a meal, but learning to see the funny side

Migraine means dropping things, bumping into things and randomly falling over, but still standing tall

Migraine means constantly seeing spots, tv-type static and flashes and squiggles of silver white light, but also seeing a far broader perspective on life than ever before

Migraine means being so sensitive to light that I live most of my life like a vampire, but also being far more sensitive to the people I meet and the things they’re going through

Migraine means losing the ability to speak or understand what people are saying, but also finding new and better ways to communicate

Migraine means losing control of every part of my life, even bodily functions like my bladder and my bowels, but also coming to a place where being out of control of my life is ok

Migraine means getting lost, even in my own home or street, but also finding parts of myself I never even knew existed

Migraine means watching my life fall apart, but also realising just how precious the life I have left really is

Migraine means feeling like Alice in Wonderland – sometimes it’s me shrinking or growing like a giant, sometimes it’s the things around me that appear to be changing – but also learning to understand and even embrace change in life instead of fearing it

Migraine means losing out on social events and missing people terribly, but also valuing my friends and family more highly than ever before

Migraine means working harder than I’ve ever worked in my life just to accomplish the simplest of tasks (completing a doctorate, working in Ugandan refugee camps and supporting some of the most difficult and damaged children in our society doesn’t even come close to the effort and energy it now takes to shower, cook a meal or have a conversation) but also knowing that the things I choose to ‘spend my spoons‘ on are really worthwhile

Migraine means not being able to remember things, process information or make decisions, but still deciding to look at each day with gratitude and to see every experience as an opportunity for growth

Migraine means not being able to work out money in shops any more, but also realising the things that really count have very little to do with money in the first place

Migraine means losing my driver’s license and feeling embarrassed using a disabled person’s bus pass, but also feeling grateful that I’m now able to get out of the house at all and glad I discovered the joy of triking

Migraine means losing my identity because I can’t do any of the things I used to, but also finding out that I’m valued just for being me and that the person I become is more important than the things I do

Migraine means getting frustrated at losing my freedom and independence, but also feeling more connected to those whose freedom is restricted in different ways

Migraine means feeling so dizzy and ill with vertigo that I don’t even know which way is up any more, but also finding out that people have stuck around even when life has been turned inside out and upside down

Migraine means having something else dictate what I can and can’t do and feeling like choice has been taken away, but also discovering that I always have a choice in how I respond to things

Migraine means fighting a daily battle, and smiling through it

Migraine means wanting to give up some days, but deciding to carry on

Migraine means walking through hell, and still holding on to hope

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My motor weakness test – ‘close your eyes, lift both arms to what feels like the same height, then open your eyes’. Some days they’re almost the same, on a really bad day the left barely leaves my side

PS Several people have asked recently – “Is it ok to ‘like’ your blog posts on facebook?!”

The answer is yes! I know by liking it you’re not saying you like the situation, I take a ‘like’ to mean a sign of support and encouragement.

Someone joked that facebook needs a ‘the situation sucks but we think you’re awesome’ button or something similar and I’ve often wanted one of these for other people’s posts, but until then the ‘like’ button will have to do!

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Mindful Mondays – All Aboard

One of the things I’ve learnt from my mindfulness practice is that our thoughts and feelings are something separate to the ‘core being’ (or whatever you want to call it) that does the thinking and the feeling.

Practicing mindfulness has given a bit more awareness that the thoughts and feelings I experience are not necessarily ‘true’.

This gives me the freedom to take a step back and observe them a bit more objectively.

I like to think of it like this:

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I imagine every thought or feeling is a bus passing by.

It’s up to me whether I get on it or just observe it and let it pass me by.

It’s very interesting (and sometimes quite funny) when I realise the ‘buses’ I board without a second’s hesitation, whisking me away before I’ve even realised what’s happened.

But at least by building awareness I can choose to get off at the next stop instead of getting carried too far away.

It’s been interesting to realise that my thoughts and feelings are not ‘me’, and they may not even be true.

I certainly don’t manage it all the time, but I’m learning lots about myself as I go and I figure that’s the main thing really. Worrying about getting it right is just another bus I can choose to board… or not.

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