Haunted

Mostly I live my life in the present and try to avoid dwelling too much on what has gone before. But some days the past weighs heavy on me and my mind lingers in all the days that have been. We often talk about people having skeletons in their closet. But I don’t think my closet contains anything as solid or silent as skeletons.  I have ghosts.

They are the pale reflections of the people I used to be. My Anorexic self, the girl who thrived off control and lived for emptiness. I feel her draw near sometimes, in the careless words of a friend, in the images on my television screen or the feel of my bones through my skin. She whispers that I will never be good enough. That no one can ever accept me with the baggage I carry. She promises freedom in her embrace, a way to control the uncontrollable. She reminds me of the seeming simplicity of the days that went before, when the only goal was seeing the number on the scale decrease, when your happiness depended only on the next dress size down.

Or the ghost of my depressed self. The girl who could not see beyond her own pain, beyond the gaping hole at the centre of herself. She visits when the days seem dark and the future stretches vast and uncertain. She whispers that there can be no solutions, no coping strategies, no victories. She believes one of the few certainties of life is that there will be pain. She reminds me how easy it is to forget that life is worth living.

And it’s strange. Few of the people I see every day knew these versions of me. I fumble for the words to speak of this haunting, but I am too afraid they won’t understand. And I wonder if it’s possible to understand the present me without understanding my ghosts. Will you understand why I hate targets if you didn’t know the hell on earth my perfectionism took me to? Will you get my sarcasm if you don’t know the scars it’s covering up? But then can one human being ever fully understand another?

And maybe recovery from mental illness is like this. Getting better doesn’t mean you forget what has gone before. You still look in the mirror and see different versions of yourself. You can’t flick through a photo album without being transported back to who you were on those days.

Underneath everything aren’t we all haunted by something? The bad decision we made when we were young, the words we wish had never left our mouths, or the person we let slip through our fingers? When you look in the mirror do you see only the person in front of you? Or all the other faces you have been, the masks you have worn and discarded? Can you ever forget the things your eyes have seen or your hands have touched? Is freedom found in embracing your past or denying it?

I don’t believe I am defined by my past but I also don’t believe it is possible to escape it entirely. I’m not sure you can have walked these roads and not be reminded of them every once in a while.

I am trying not to be afraid of my ghosts. They are a part of me, the hurting and scared parts of my past. I will not run away from them. Their influence threads through my history into my present. They fought for me, maybe in the wrong direction, and with an arsenal that they never should have chosen for the battle. But they kept fighting. It’s too late to punish or forget them. Perhaps the only way to quiet their voices is to forgive and comfort them, each time they make an appearance.

Breath in, breathe out. Feeling the air fill my lungs, the slow rise and fall of my chest. I am alive, full of life in this very moment. The past may throw up it’s spectres like dreams in the night. But they cannot hold me. Each day is a new page to be written. And those ghost girls pass the pen to me, waiting for me to write a different story.

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The Questions Without Answers

I am sitting with a fair amount of uncertainty at the moment. I have had all the treatment for my ME that our health service can offer. I have done my course of CBT and I don’t have any more energy than I started. I now work four days a week, with one of them working from home, and I have yet to see a significant improvement.

Life is still challenging. I still have to battle my way to the end of each week. I still long for my body to remember what energy feels like. I am not better. And I’m struggling to know how to get better. I know I need to get from A to B, but most days it feels like someone has planted a massive mountain in between. All I can see is the climb to one of the many summits.

There are questions I really want answers to. Questions I ask myself daily or others ask me. Questions like: why aren’t things getting better? What are you going to do next? How long will this last? What is God’s purpose in this?

And in the place of answers there is silence.  Those spaces, where the words should be, open up like chasms within me. Turning into voids that suck away my hope. Some days I try to plug them with my own words. But the holes go too deep and my words sound uncertain and feeble. I fear that if I get too close to the edge I will trip into the depths and won’t be able to climb out again.

I like certainty. I want things to be black or white, with no grey areas. There has to be a right answer somewhere. But real life isn’t like that. Our problems and the choices we make are messy and complicated. We see the world through the lens of our own bias. We may never have enough information to know if a decision was the right one to make.  We may wait years to understand why something in our lives had to happen the way it did. There isn’t always a clear answer.

And sometimes we don’t get an answer at all. Sometimes the most God gives us is the privilege of asking our questions to him. He doesn’t promise to answer them, or at least not in the way we might expect. We are not God. He is not accountable to us and does not have to justify his actions.

We all have to sit with the uncertainty of those questions that don’t seem to have answers. Why are some taken from the world so young? Why are some lives blighted by suffering? Why is one person healed and another left sick? We all have our own questions we would dearly love answered. We all have our own spaces in our hearts, where the answers should be, testing our faith and trust.

All I am left to say is I don’t know. I don’t know why things aren’t getting better. I don’t know what I do next. I don’t know how long this season will last. I don’t know what God’s purpose is in this.

But God does know. And there are some things I know about him. He is wise and all powerful. He is sovereign over every aspect of my life and who I am. And he loves me, more than I can ever fully understand.

I don’t have the answers. But I am trying to let trust and grace build a bridge over the chasm of my uncertainty. To bring me to rest in the things I know to be true.

Worn

It’s been a tough week. I packed far too much into June, and whilst they were lovely things that I don’t regret doing, my body was very cross with me by the time I reached last weekend. It has been a week of enforced rest to try and appease my weak and weary body. I should have been at a big family gathering this weekend but instead I have been rotating from my bed to the sofa. It has brought home to me just how fragile life with a Chronic illness can be. The line between doing enough and too much can be so hard to judge at times, but the punishment when you cross it can be debilitating.

I am feeling worn down and worn out. It’s like I’ve got a puncture somewhere and the life is slowly dripping out of me. It is hard to keep track of hope when every day seems to be the same, as the weeks turn into months and the months to years. Maintaining normal life is a daily battle and sometimes I’m not sure I’m winning the war. There are times when I just don’t know how many more days like this I’ve got in me. I want to move forward but every step is like trudging through treacle and  I’m loosing all sense of direction.

My faith is feeling worn down too. It’s being tested at those weak points, whose threads have been teased at time and time again. It is struggling to find the same enthusiasm to trust God on day four hundred as it did on day one. A faith that is still grappling with a God who is almighty and able to heal, but chooses not to. It is hard to feel his love when you look back at the struggles and storms this last decade has held. Are we not done yet? When will we reach those green pastures?

My faith is both the steel that goes through me and the rope that I can use to tie myself up in knots. It goes deep, through all I am, but is messy with some sharp edges that I still get stuck on. From the outside I don’t think it looks how you would expect.

It’s like a marriage that you are determined to keep working at, but sometimes communication shuts down and you doubt their love. It’s the mirror that shows both the best and worst of yourself at the same time. It’s the father who promises to stay with you and do the best for you, but sometimes leads you down paths that cut your feet and leave you battered and bruised.

I often feel like a fraud among other Christians because my faith doesn’t look as shiny or enthusiastic as I think it should. When you don’t have the energy for life, you know every shade of apathy. I know there are things I should care about, that I just don’t care about right now. So many of the worship songs feel empty to me in this place. I look around at people worshipping around me and feel a rising feeling of panic. Tears spill out of my eyes, not holy tears at how wonderful God is, tears because I’m hurting and worship has always been the place I can be real with Him. But I don’t want my tears to wet the floor of crowded halls or church buildings, betraying me and opening wounds I don’t know how to heal.

It is hard to keep track of who you are, when some days your greatest achievement is that you got dressed and showered. Every task suddenly looks meaningless when pitted against the sheer mass of exhaustion. I know if I clean the bathroom it will be dirty again in a week, so is it really worth my last ounce of energy? If I go for a walk I will need to lie down afterwards, is sunshine that precious? Can I afford to spend energy cooking nice meals when I will be hungry again in a few hours? When it comes down to it, is anything worth it?

I keep smiling because that is what I’m supposed to do. I am the actress starring in the play of my life. If the façade slips my world could start unravelling. I am not sure the person you see when you look at me is who I am inside. I am not an inspiration for keeping going, my feet are moving forwards because they are scared of what happens when they have to stop. Each day is a mixture of successes and failures, but it is the failures that will keep me awake at night.

This worn-down state is a lonely place to be. All the people who love you tell you it’ll be okay and desperately want you to believe it. And so you pretend their words are the salve that they are intended to be. You act like you believe them even on the days when all platitudes feel like some kind of cruel joke. When you are so tired you want the world to stop turning, you feel so horribly alone.

As sometimes happens there is one song that could be my heart’s cry right now. It’s a song called ‘Worn’ by Tenth Avenue North. All the words ring true to me but the chorus is especially poignant:

“And I know that you can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn

I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
‘Cause I’m worn”

In my weakness I have to keep choosing to look to the one with the power to redeem this situation. The one who can heal my body and my heart. I don’t understand what his purpose is in this, but I know him to be faithful and trustworthy. He’s still in control of my life.

I know these feelings will pass. And that my emotions are as always a poor judge of truth. I know God hasn’t left me even on the days that he feels distant. In my head I know it will be okay, even when my heart begs to differ.

But this will take some time. Be patient with me. My smile may be forced for a while and that’s okay. I have to work my way through this, to give myself space to feel the array of emotions and then let them fade. This exhausting roller-coaster of grief and frustration at my illness, has to run its course. When it does I hope to arrive at a place that looks more like acceptance.

“ We are hard pressed on every side, but not crushed; perplexed, but not in despair;  persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body.  For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body.  So then, death is at work in us, but life is at work in you.”

2 Corinthians 4:8-12

The Things I Don’t Let You See

An edit of this post was published on The Mighty

I am lucky enough to be able to work part-time whilst managing my Chronic Illness. To do so means I have to keep a lot hidden from view, behind a more presentable mask. I do my best to smile through the bad days and to not let my symptoms show.

If you catch me at the right moment I might give you an honest response when you see me at work and ask “How are you?”. And I see confusion cloud your face when my answer doesn’t match up with what you were expecting. Sometimes I have to hold my tongue as you correct my response or offer your own assessment on how I am doing.

I can see how easy it is to imagine that the me you see here at work, extends beyond 5pm into my evenings and days off. That this put together functioning person continues into an active social life. To think that this elaborate façade is all there is to me.

But what I need you to understand is that you only see the very best of me. There is much more I will never let you see.

You don’t see the isolation, the days spent propped up on my bed desperately trying to refresh my weary body. When no amount of inactivity can make my body remember how to store energy. You won’t know just how boring and frustrating rest can be, when it is forced upon you. When your companions are head aches, muscle pain and the characters on the television. On those days you try not to open Facebook because seeing all those happy smiling faces leaves you feeling horribly alone. It is as though you are moving in slow motion, whilst the rest of the world is speeding past.

I don’t let you see the fear. How terrifying it is to have a body that is seemingly out of control. To not have any idea what the future holds and watch you life deviate from what you had planned. I get worried when each new thing I try to help, doesn’t make my symptoms better. Or panic when my memory fails and important things like my postcode slip out of my mind. You don’t see how afraid I am that there will come a day when I can no longer force my body to go into work. That this job may be another thing that my illness will take from me.

I don’t let you see the times when tears fill my eyes at my desk because my brain is so tired and so full of fog that the noise in the office feels like a special kind of torture. Or the days where I don’t leave this floor because stairs would just be a step too far. Or when I have had to stand up longer than my muscles could cope with and I sink into my chair, my body shaking from the effort of it. All the time knowing I’m going home to a flat that I will be too tired to clean and to food I don’t have the energy to cook.

And when you see me at a social event. You don’t see the careful planning that has gone into minimising the damage. How I’ve tried to ration my energy all day to save it for this. You won’t see the inevitable crash afterwards, because no amount of preparation ever prevents the fallout. You can’t know that I will be paying for this outing for days or even weeks to come. That sometimes the worry about how high the cost will be, can stop me from enjoying whatever it is I’m doing in the first place.

And I don’t expect you to know all this. I know there are many parts of your life that I also don’t see. I don’t know what your smile is covering.

But I would ask that you stop for a moment when I tell you how I’m doing. Before you dismiss my words and give your own opinion on my situation. Stop and remember that there are parts of my life that you don’t see. And I will try and remember the same for you.

Finding The Horizon

The thing that gets to you about living with Chronic Fatigue is not that every day is acutely bad, but rather that every day is the same. Each day I wake up exhausted, I battle through the day, to then go to bed with my head and body aching from the weight of fatigue. You can get overwhelmed when the days seem to stretch before you without end.

It’s like I’m swimming across the ocean, every day forcing my muscles to inch forward against the currents. But after so many days you become disorientated. What’s one more stroke against the vastness of the ocean? How do you know the shore is even still there when you can’t see it? What if this ocean never ends?

I think in the early months of this year I lost my sense of direction. I have been so consumed by the struggle of persevering that I didn’t notice how much of myself I was loosing along the way. Somewhere along the line, feeling unable to cope with my illness became feeling unable to cope with life. I didn’t want to swim any more.

My mind was having a hard time coping with the pressure of all those days swimming. I couldn’t see the horizon, all I could see was water. I didn’t know what I was swimming towards, or if I would ever reach it.

Where is the line between exhaustion and depression? I think sometimes when the weight of the days, months and years has become too much. Too much for a tired mind, one can slip into the other. I didn’t want to have to keep coping. I was frustrated with a body that I couldn’t control and a brain that was always full of fog. The gulf between who I was and who I wanted to be seemed ever wider. The storm was making the waves come up over my head, threatening to engulf me.

And it’s hard. It’s hard to keep trusting in a God who can do the miraculous but doesn’t always. It’s hard to sit in Christian settings and hear stories of amazing transformation and wonder if maybe God doesn’t love you as much as them.

I think the reality is that as I try and let go of some of the guilt I have been carrying there may first be anger that takes it’s place. If it isn’t my fault, than why me? If God is for me then why has life been so hard?

I know that God can calm the storms I come up against, like he did for the disciples all those years ago. But sometimes he asks us to trust that it’s enough that he’s simply in the boat. And that doesn’t always feel like enough.

April and May have been brighter so far. I have increased my medication for the first time in years. And whilst it has hurt my pride, it has brightened my world. Some more colour has come back into my life. I only realised how much had drained away once it had come back.

I am realising how important it will be for me to fix my eyes on the horizon. Especially on the days where the ocean, I am swimming in, seems endless.

My horizon has to be who God is and who I am in him. It is the truth of his promises, the enormity of his love and grace, the freedom that is mine in him. The vastness of his faithfulness stretches across as far as the eye can see.

And as I watch the horizon, I know that breakthrough will come. One day I will see land rising out of the skyline, rising up like freedom, magnificent and longed for. I won’t be swimming for ever. There will come a day when I will feel sand beneath my feet and my tired muscles will awaken with strength again.

Maybe I will find there was purpose in my swimming. Maybe I will have my own transformation tale to tell. Maybe you will too.

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The Hardest Part of Acceptance

An edited version of this post was published on The Mighty

On the surface, I look like I have come to terms with my Chronic Illness diagnosis. I have learnt how to advocate for myself and found words to explain my illness to those around me. I have found some ways to cope and am adapting to live my life around it. However, there is one part of accepting my illness that I am still struggling with.

I am finding it hard to accept that it is not my fault.

 I know I am not supposed to blame myself.  I would never dream of blaming someone else for their illness. I would be the first to correct anyone else in my position. I know the blame I carry is neither rational or justified. So why can’t I shake the feeling of guilt?

Having a Chronic Illness is like being set up to fail, and I have never been very good at failure. A diagnosis doesn’t come with an instruction booklet. No one tells you how to manage your days, what to do and what not to do. But people around you expect you to have all the answers. It’s like being forced into a tournament, but no one will tell you what game you’re playing or what the rules are. Every time you think you’ve got it and start to believe you’re winning, the rules change and you’re back to square one. And it seems you are only competing against yourself, the better, healthier version of yourself,
trying to get back to who you used to be.

Yet even my best efforts cannot keep my symptoms at bay. A good day for me is still not as good as I or others would like it to be. I am learning to cope by trial and error. And a year post diagnosis it still feels like my errors are more noticeable than my successes.

I blame myself for the days I don’t succeed in managing, thinking “Surely by now I should have got to grips with this.” I feel responsible for every day off work, every cancelled plan, every time I hibernate and abandon communication. I feel guilty for the times I push myself too far and experience the inevitable crash. Or for the days when perhaps I could have pushed myself further but was too afraid of failing. I blame myself for every missed target at work. I am critical of every time the brain fog rips my concentration to shreds. There seems no one else to blame when every change or concession I make, yields no improvement. I am constantly comparing myself to everyone around me and finding myself lacking.

It doesn’t help that I have an illness that has become increasingly shrouded in controversy. Half the medical community still seem determined to treat Myalgic Encephalomyelitis as a mental illness. It is an illness still so poorly understood, under-researched and under-funded, despite the thousands of people affected. Whilst there have been some advances in research to show a biological basis for this illness, this is having little impact on local treatments options.

There are still many doctors who would dismiss me with “it’s all in your head”. My diagnosis came with a course of Cognitive Behaviour Therapy, and once that is finished there will be nothing else they can offer me. They believe my debilitating fatigue is a result of my body being de-conditioned, having too much rest and unhelpful thought patterns. I worry how many people in my life think the same. I am being taught not to trust what my body is telling me. It’s hard to know who I am supposed to be listening to.

In such a climate, it is difficult to validate your feelings and to ask for the help you need. I can fall into the trap of over analysing every feeling, to fear I am misinterpreting every ache and pain. I would give a great deal of money to swap bodies with someone for a day. I long to have someone else confirm my experience, to see my illness through their eyes. And I would love to remind myself of what healthy feels like, to experience a day
without fatigue. It has been so long now that the goal, of a healthy life, gets harder and harder to picture.

I don’t know what the road ahead looks like. The future has become hard to predict. Some days it feels like improvement is just around the next corner, other days it could be a million miles away.

The truth is I am so very tired. I know I am carrying a weight too heavy for my weary body. I cannot do anything about my diagnosis. But I think it is time to learn to lay down the burden of guilt and blame that is pulling me to the ground.

I know it won’t be as simple as saying a few significant words and leaving that suitcase of guilt behind me forever.  I know every time I set it down I can choose to pick it back up again. Maybe it will always be there, tempting me on the bad days. However, at those moments I will try to hold out kind and compassionate words to myself, rather than blame. I am human and flawed, I will make mistakes and get it wrong. But every fall will be a chance to get back up and try again.

Sunday’s Coming

I love Good Friday. Not only is it a great opportunity to remember Jesus’ death on the cross, and the sheer extravagance of his grace and mercy to us. But Good Friday to me perfectly captures the tension between being part of the world and the suffering that can involve, and seeing God’s perfect plans revealed.

Every year I am struck by what Good Friday meant to the disciples. It’s easy to gloss over the pain of this day, because we know what comes next. But for the disciples they watched Jesus die an agonising death. They did not understand that this was a crucial part of God’s redeeming plan. They must have thought that it was all over. Their teacher and saviour has been taken from them, when they were only just beginning to understand who he was. They went from performing incredible miracles to hiding in locked rooms, fearing for their lives. They were grieving and confused, scared and alone. It looked like the darkness of the world had won, that evil, corruption and betrayal had conquered love.

And I think I love this day because often we can find ourselves where the disciples are. In our own lives we can find ourselves in dark valleys where it seems like God’s plans have failed. We can feel seemingly alone with our pain and confusion, crying tears of fear and desperation. There are days when the night is dark and God’s goodness can be hard to see through the blackness that obscures our vision. And we only have to turn on the news to see the fruit of evil and hate in every corner of the world. Sometimes it can seem like the world is full of the cries of the suffering and afraid.

But the story does not end with Good Friday. I heard a great sermon at my church recently which quoted a story told by Tony Campolo. He was one of seven preachers preaching back to back on Good Friday. He thought he’d done a great job with his sermon and wasn’t expecting anyone else to top it. But then the next pastor cam up and had the congregation in uproar with just one line, “It’s Friday, but Sundays coming.” He said:

“It was Friday. The cynics were looking at the world and saying, ‘As things have been so they shall be. You can’t change anything in this world; you can’t change anything.’ But those cynics didn’t know it was only Friday. Sunday’s coming!”

 It was Friday! And on Friday those forces that oppress the poor and make the poor suffer were in control. But that was Friday! Sunday’s coming!

It was Friday, and on Friday Pilate thought he had washed his hands of a lot of trouble. The Pharisees were strutting around, laughing and poking each other in the ribs. They thought they were back in charge of things, but they didn’t know it was only Friday! Sunday’s coming”…

At the end of his message he just tipped his head back and yelled, “IT’S FRIDAY!” And all five hundred people in the church yelled back as one, “BUT SUNDAY’S COMING!”

And in that one phrase we have the good news of the gospel. We are living in the in-between, the time between Jesus’ resurrection and his coming again in glory. The Fridays of our lives may be difficult and dark. They may bring us to our knees and steal our hope and joy. But we know that Sunday is coming.

Good Friday reminds us that no matter how hopeless a situation may appear, we can’t always see what is right around the corner. Even if we feel our lives are a series of black Fridays, we mustn’t loose sight of the fact that Sunday will come when all will be made right. We may have to wait more than three days for it, but Sunday is coming, of that we can be sure.