It Is What It Is

January has felt like quite a difficult month. The thing I longed for most in the world at Christmas time was break from feeling so exhausted. Realistically I knew that was unlikely to happen, that Chronic Fatigue doesn’t take holidays, but I think there was a little part of me hoping for the miraculous to happen. So when it didn’t, when I returned to work after Christmas feeling even more exhausted than before, I was frustrated and disappointed.

There are situations in my life that I wish I could change. My health is not where I want it to be. If I’m really honest I am loosing faith that I will be able to get it to where I want it to be. And my confidence at work has taken another knock, and my emotions are quickly ranging from frustration, self-doubt, sadness and guilt. I have learnt once again that in the real world you don’t get marks for effort. And I’ll admit it is pretty hard to bounce back from the knocks when you’re just so exhausted to start off with.

I think I am going through a period of grieving at the moment. I am grieving for the energy and health I have lost, grieving for the future I want that seems perpetually just out of grasp, grieving for the days that have been lost and will be lost in a cloud of exhaustion.

I have been avidly watching the latest series of Sherlock and one particular piece of dialogue struck a chord in the second episode. After a particularly emotional episode, Sherlock embraces John  and says”It’s Okay” and John retorts “It’s not okay”. Sherlock replies “No, but it is what it is”.

I suppose if I’m going to be real with myself I’m not especially okay at the moment. The situations I’m struggling with health wise and otherwise are not okay. Sure I can make plans and try to make changes to make them better in the future. But that won’t make them okay right now. And that can be painful to accept.

We are taught to avoid pain at all costs. From a young age we learn to mask it and cover it up. We hide behind busyness and distraction, barely giving ourselves a moment to stop and think. We try to make it better, papering over our own and other’s pain with platitudes and bible verses.We are afraid of what it really means to sit with the pain inside us, to allow ourselves to feel it, to admit that we are hurting.

We need hope, we need not to loose ourselves in the darkness and hurt. But too often we force ourselves and others to move too quickly from the pain into the hope-filled chorus. We pretend we’ve reached our destination when really we’re still stumbling around in the dark.

Our pain, anguish and confusion demands to be felt. It needs to be experienced, worked through and brought to God. We can be too scared to trust him with the broken parts of ourselves. We forget that he knows us already. He knows us and everything we are going through, knows when the words we are saying do not reflect what’s going on inside. He is not a God afraid of our pain and our questions. In not openly and honestly bringing our pain to him we loose the opportunity to deepen our relationship with him and increase our trust in who he is.

I have a choice to make. I can either ignore these feelings and circumstances, try and find the right combination of words to make myself feel better. I can practice denial and avoidance, with a heavy dose of fake confidence. Or I can journey through the pain to arrive each day at acceptance.

Acceptance isn’t the same as giving up. It doesn’t mean things can’t or won’t change. But finding acceptance gives me the freedom to experience the moment as it is, without the weight of frustration and disappointment. It leaves my eyes open to find the little joys even on the hard days.

I have to learn to accept each day as it is now without loosing hope that tomorrow may be different.

A Letter To My Younger Self After a Depression Diagnosis

Dear Brave One,

I know you are scared. A Doctor has sat across from you and given you your first label to carry. You don’t yet full understand what Depression means, but you know enough of the weight of the word to figure out that it could set you on a different course. The temporary relief at being given a name for what has been happening to you, is outweighed by the fear of what the future may hold.

Your mind used to be your safe place, a place only for you. Your imagination could take you on endless adventures, you could store all the knowledge and memories you wanted, your mind was where you built your sense of who you are. But now this place is no longer safe and no longer just yours.

There is a darkness living there that scares you, a darkness that seems to have leached all the happiness out of the world. You no longer recognise this place that used to be your home or the person you have become. And now there are doctors and concerned family and friends all wanting access to your mind. They want to know your feelings, the exact landscape of your thoughts, they want to throw open doors to rooms you are not sure you want others to see.

Please hear me when I say: depression is not your fault. I know you blame yourself. That somehow this feels like a weakness or failure on your part.You feel like if you’d just been ‘stronger’ or tried harder then you would have been able to prevent this. Some days you have a hard time separating the illness from who you are, it can feel like depression has infected your character, made you less of a person. You struggle to escape the stigma around mental illness, because you carry a part of it within yourself.

I wish I could tell you that getting better will be easy, that in a few short months all this would be behind you and life would be recognisable again. But I won’t lie to you.

Recovery will be a long and difficult road. Sometimes you will take one step forwards only to take another two steps back. There will be nights where all you seem to have is the pain inside you, where all you can feel is the black hole like an open wound in the centre of you. You will have days where just existing feels like more than you can bear. When all you want to do is give up, to not have to wake to another morning. You will wonder how the future can ever be anything but darkness.

But little one, those days will pass. The emotions will fade and the pain will start to heal. You will find medication that helps and healthier coping strategies. You will discover that you have a strength inside of you that is greater than the darkness. You will keep showing up for each new day until one day the thought of tomorrow won’t fill you with dread. There will come a day when the hope, you have been fighting to find in the darkness, will ignite like fire within you. You will realise that it is the cracks in your heart that can let the light in.

Don’t try and do this on your own, you will need other people. You will need the friends who aren’t scared to ask difficult questions, those people who accept you as you are and love you even when you don’t love yourself. Let them in, let them love you. You will need the help of doctors and health professionals, you will need medication and therapy, you will need their care and advice. Trust them, they are there to help. You will need those people who say in quiet voices “I’ve walked this road too”, you will need a community of people who have fought the darkness and come out into the light again. You will need to know you are not alone.

You won’t believe me now but depression will leave behind some valuable gifts. You will come to understand yourself and the way your mind works better than you ever thought you could. You will grow a wisdom and a perspective on the world that comes from surviving those dark nights. The good times, that are coming, will be richer because you have known despair. You will learn that hope can be a powerful force for change.

And when depression has become part of your past, rather than your present, you will have a choice to make. You could choose to stop talking about it, to omit it from your vocabulary and tear the chapter from your story. Or you could choose to share this chapter to bring hope to others and fight the stigma. We both know which one you’ll choose.

I am proud of you. Proud of who you are and who you will be. This will be the fight of your life, but if you take it one day at a time, you can do it.

Choosing Hope Again

This is a post originally published on The Mighty.

Another year is drawing to a close. For me, like many others, this year has held it’s fair share of disappointments.

I thought 2016 would be the year I got my life back on track. It was a year where I took difficult decisions to try and get my Chronic Illness under control. I reluctantly reduced my hours at work and started a new treatment. I was expecting to see an improvement by Christmas. If I’m honest I was already making plans for what I might do in the New Year with my new found energy.

But the reality is the improvement this far has been so fractional that I have barely noticed it. I am faced with the disappointment of another year with the uncertainty of an illness that I still struggle to understand and manage. All the hope and aspirations I went into 2016 with, feel naive and foolish now.

Disappointment can be crushing. It leaves behind it’s own scars on our hearts. Scars that make us reluctant to hope again, unwilling to open our vulnerable hearts to the possibility of further pain. Our instinct is to harden our hearts, to build walls around those vulnerable parts of ourselves and lower our expectations.

If we don’t hope for better things then we can’t be disappointed again. If we expect only more trials and difficulties, then we won’t be let down. It feels safer not to choose hope.

At this dawn of another year, it would be all too easy to cross it off already. To abandon all my dreams and hopes here, accepting they have no place in this new life.

But I can’t live this life without hope.

The kind of hope I need isn’t ignorant of the hard realities of Chronic Illness. I know that no amount of hope will make this new year trouble free. There will be hard days ahead, days that will take more than hope to get through.

But I have to keep trusting that even on the difficult days there can be golden moments that make the struggle worth it. I have to keep remembering that I am and always will be more than an illness. I have to believe that some of my dreams for the future can still be fulfilled.

Hope reminds me that whilst the past is now set in stone, the future hasn’t been written yet. I cannot control what comes to pass. But I can choose the way I approach it.

I will choose hope again this year. Maybe I will be disappointed again. But I think it will be worth the risk.

When Tired Becomes More Than a Word

Since being diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ‘tired’ has become one of my most commonly used words. It’s a word we all use. Everyone gets tired, whether it’s at the end if a busy day, or as you drag yourself out of bed early in the morning, we all experience it. But the more I use the word the more I realise that what I mean when I say it, can be very different to what other people mean.

For me it has almost become like a code word, or shorthand, for the millions of other words that I keep trapped in my mouth. It’s as much about what I am not saying as what I’m saying.

To me those six letters are so much more than an adjective. It’s the ache in my muscles that weighs down my body, until it feels almost too bruised and heavy to move. It’s the sadness and guilt I feel when I have to cancel something I really wanted to do. ‘Tired’ is the thing I see when I look in the mirror. It is the paleness of my skin and dark circles round my eyes. ‘Tired’ is the darkness and weariness that sometimes creeps into my spirit, making me wonder how many more days like this I can take.

When I say ‘I’m tired’ I mean that this day will be hard. I will ride the roller coaster of being happy one hour and sad the next, because my emotional regulation has given up and gone home. My head will be filled with a fog so dense that forcing my brain to concentrate feels like a particular kind of torture. I will be irritable and say things I don’t mean, the words I want to say will get mislaid somewhere between my brain and my mouth. I will be endlessly frustrated with myself and my inability to ‘cope better’, when really I am frustrated with the direction my life has taken.

‘Tired’ is the black hole that I am being perpetually pulled in to. The opponent I have to fight, who has a fondness for changing the rules of the game when they feel like it. It haunts my good days and my bad days. It is the monster that I will sometimes let you catch a glimpse of, but will mostly keep hidden away. Some days I worry it is all I am and ever will be.

But whilst ‘tired’ is more than a word to me, I am more than those five letters.

I believe have a value that comes not from what I do or how I feel, but from who I am. I have no less worth on the days when I can’t get out of bed than on the days where I can pretend all is well. I am a daughter, a sister, a friend, and I am loved. I am creative, clever, empathetic, thoughtful and strong. I am so many other things before ‘tired’. There will be days when I will need reminding of that fact.

I may be tired today but I refuse to give up on the hope that tomorrow will be better. Maybe one day there will come a day when energy is no longer a distant memory.

In the mean time I  still have dreams to chase and I’m not done yet.

Dear Mr Tabloid Editor

I have been reading your articles about Anorexia for a while. You know the ones I mean, they have shocking headlines like ‘Girl nearly dies after living on just X calories a day’. The first picture is always a very thin girl, or guy. They’ll be dressed in clothes that looks about ready to fall off them. A picture that is designed to shock the reader and hook them into reading on, to find out how someone can survive being that thin.

I have read these stories from different places in my life. I read them when I myself was ill with Anorexia, trying to feel less alone. I read them now, from a place of recovery, wondering when the stigma will disappear. On the surface your articles look like a simple story of  Eating Disorder recovery, a much needed exercise in raising awareness. But every time you focus on  weight and calories, I fear you may be telling a more dangerous story.

I wish you would stop showing us before and after pictures. Displaying the skeletal form of him or her, just to prove they were really ill. As if the severity of a mental illness is directly linked to the amount they weigh. Please don’t describe to me their diet, just how many calories they ate. I don’t want to know what they allowed themselves to eat for breakfast lunch and dinner. I also don’t need to know what they are eating now they’re better. Please don’t make this about food as though this is just a diet gone wrong.

Tell me about them. Tell me who they are. Tell me the things they loved to do before they got sick. Tell me the stresses and factors that brought them to this place, where this need for control came from. Help me to understand that Anorexia  does not discriminate, happening to anyone for a vast number of reasons. Show your readers that anorexia is not really about food or weight. That deep down it is not about wanting to look like the most fashionable model or celebrity. Don’t paint the sufferers as selfish and  narcissistic. This isn’t a diet or a self-obsession. This is a mental illness.

Tell me what it felt like for them, what this mental illness felt like. Not what it looked like from the outside, but the agony of living through it. The torture of watching yourself fade away and be replaced by someone you do not recognise. To become a person who will lie in a heartbeat as though it’s second nature. Someone who feels utterly powerless to stop the heartache they are causing their family. Tell me what it was like to no longer be able to feel anything but the elation of not eating and the guilt of eating. Tell me how you live with the contradiction of being absolutely terrified and completely unwilling to stop what your doing.

Maybe the shocking photos will scare some sufferers into asking for help. But for others your photos become triggers with darker results.

There are people who are reading your article backwards. They start at the ‘recovered’ picture and believe themselves to be much bigger and fatter than the girl or boy in the photo. And then they work back to the anorexic shots, they see that skeletal figure and see how far they can go. They take note of the weight they were and the calories they were consuming, and see this as a recipe to follow and a challenge to take up. In their mind maybe they believe they’ll be able to stop before it gets that bad.

By printing their weight you are showing them how thin they could get without dying. You have told them the exact weight loss that deems your illness worthy of a newspaper article. They are reading your article and believing that whatever weight they are now doesn’t qualify them for help. That, by comparison, they aren’t really sick.

These people are likely already in the grips of the eating disorder, so you could say they are not your problem. Leave them to doctors and stretched eating disorder services. But you see Mr Editor, you have a chance to draw them in. Not with shocking photos and calorie intake, but with hope.

Instead of telling me what dress size or weight your subject is now they have recovered, tell me what recovery feels like to them.I want to hear about the first time they enjoyed food again with friends, the freedom that brought. I would love to hear more about the things they are able to do now, that they couldn’t when they were sick. The dreams they are now able to chase. Tell me that life in recovery is worth the battle to get there. Show me what inspires them to keep going on the difficult days. Paint a picture of life after Anorexia, not just another diet or meal plan, but a fulfilled and rich life. I need to hear that they can and will be so much more than the person who had an eating disorder.

You see, the truly beautiful thing about recovery is that your life can stop being about food or weight. That wonderful moment when you have gone your first hour, day or week without worrying about food. When you realise you can harness those traits and tendencies that made you ill, and use them to succeed in life. Recovery means that your life can tell a different story. A story that may have had some dark chapters but can continue on into the light.

Don’t get me wrong, I love that you are publishing stories about Anorexia and raising awareness. You are helping to start conversations and end the stigma that surrounds mental illness.

But there is power in how you tell a story.

Is it perhaps time that we tell our story differently?

When Words Aren’t Enough

I have a lot of empathy, I always have done. When I was younger I used to think of it as having an emotional antenna. I couldn’t be happy if I could tell there was someone else in the room who was sad. I could detect a change in someone’s mood before they had a chance to say a word. You would have called me a sensitive child. There were just so many feelings around me and it took time to learn how to regulate my own emotions, and to harness empathy into something that I could use, without it destroying me.

Empathy is different from Sympathy. Imagine your friend finds themselves down a dark chasm. Sympathy is when you stand at the top, out of the way, and shout down your words of encouragement. You may not realise it but you have maintained emotional distance from the person, offering insight from afar. Empathy on the other hand requires you to climb down into the chasm with them, to sit where they sit for a while. You imagine yourself in their shoes before you speak.

Empathy connects people, it builds teams and relationships. It can be the doorway to showing people they are not alone. It is what we look for when we’re feeling lost and misunderstood. Empathy can dissolve conflict and build bridges we hadn’t expected. It is undervalued but it is what a divided and fractured world needs most.

But having a lot of empathy can be painful. You open up your heart to experience not just your own pain, but an echo of the pain of others. The more you practice empathy, the more you realise that the world is full of pain and heartbreak, that you cannot cure. If you’re not careful this pain can weigh you down, leave your heart heavy and bruised. Empathy is my greatest strength but it also has the potential to be my biggest weakness.

I have good boundaries at work, I have to. I leave my clients behind when I walk out the office.I do not linger in the places that our telephone conversations may have taken me to.

But my friends come home with me. They are happily entangled in my life. I cannot help but carry an echo of their troubles with me. And sometimes no matter how much time you sit with them in these places, the right words do not come.

I haven’t written anything in a month, and I have been struggling to pin point why. But the more I think about it the more I wonder if it’s because my words haven’t felt enough lately. I know a lot of people who are walking difficult roads right now. And every time I have opened my mouth my words have felt feeble and insufficient.

I do not know what to say to the person who has had to walk away from a job they used to love. Or to the person who has had their life turned upset down and has to find the strength to rebuild again. I don’t know how to find words to bring comfort for those battling illness or faced with bereavement. Are there words for broken dreams, loneliness and pain? Every time I try to find them they sound so empty.

And yet I am writing again. I think perhaps it’s because I have realised that it is the very act of trying to find the words that matters. Of listening and sharing in the heart ache. That sometimes what you need is someone who cares enough sit with you in the silence. That when my words are wrong, maybe the heart behind them will shine through.

When words fail me, I have to trust that God can fill the spaces between my words. That where words leave behind emptiness, he can bring wholeness. That where they cannot shift the sorrow, he can bring hope. That he can fill my ineloquence or thoughtlessness with his wisdom.

Words will fade away. But perhaps you will still remember that someone climbed down and sat with you in the pain, that in that moment you weren’t alone. Maybe you can never be truly alone, for as long as we have empathy to share.

Retaking Ground

Deep down I knew I would be writing this post at some point this year. I’m quite surprised I’ve made it all the way to September, and as tempting as it was to delay this decision for another year, I can’t put it off any longer.

You see I’ve finally made the decision that I’m not well enough to work full time at the moment. Last week was my first week of working four days a week. It’s starting off initially as a four week trial and then we’re going to see where we go from there.

This probably doesn’t seem like a big deal, just a small change, some of you have been suggesting it for years. But for me it has been a painful decision to reach.

For nearly two years now I have fought tooth and nail to stay full time at work. My sole focus has been on getting through each week, fighting to make it through to Friday, without having time off. I have put so much effort into proving that I can do it, that I can manage my illness alongside my job. I have hoped that if I kept pushing forward, battling through each week, then maybe it would get easier.

And it’s all come undone a few times. I remember a week in May especially vividly. Our department was under pressure and we were behind. So for a week my normal rota was going out the window and I was going to do my most exhausting task all day every day. It was more than I was physically capable of and by the Thursday I had given every ounce of energy I had and could barely string a sentence together. I had to take the Friday off sick.

I remember the crushing failure I felt that week. It didn’t matter that I’d raised a red flag before the week began that this would make my fatigue unmanageable, trying to find a solution. The feeling didn’t take into account that the sacrifice that was being asked of me was much higher than my healthy team mates. I had failed. It was then that I learnt that when you put all your energy into work, you give it the power to break you into pieces. I have to be more than just a job, no matter how rewarding the work.

On the Saturday of that infamous week God spoke to me. I was sat in the park next to my flat enjoying the sunshine and watching people pass by. I saw this toddler enjoying her new found walking ability. She was going up and down this set of stairs, each time her dad tried to redirect her she would go back to the stairs. And each time she climbed the steps her dad was right there ready to catch her if she wobbled. I felt God say you are going up and down this same set of stairs, stuck in this cycle. Sooner or later you will tire of this and let me lead you down a new path.

I have realised that as I have been desperately pushing forward, fighting each new battle I have missed the fact that the ground I have left is falling into ruin behind me.I have been so focused on the goal of staying full time that I haven’t noticed the kind of life I am giving myself. I haven’t noticed that the cost has been too high. I have sacrificed my social life, my happiness and even some of my health for this goal. And it’s all been driven by fear. The fear that if I work less it will be like admitting defeat, the fear of loosing some of my financial security and fear that I will come to regret the decision. But the more I think about it the more I’m aware that my biggest fear is that, if I don’t do this, I will wake up in 5 or 10 years time and realise that I have sleep-walked through my life. That I have been too tired and too beaten down to enjoy what life has to offer.

I am incredibly determined, if something isn’t working then my instinct is to try harder. But trying harder hasn’t been working. I’ve always told myself that I would never push myself so hard as to put my mental and physical health on the line. But who was I kidding? My perfectionism and drive to succeed has always been higher than that for self preservation. I have pushed myself harder and longer than was ever really sensible.

So this is me trying to take some of my life back. My attempt to retake some of the ground I have lost to this illness. I am hoping to find a way to enjoy life again, to pick up some of the hobbies that I have let fall by the wayside. I am not expecting to feel better overnight, Chronic Fatigue doesn’t behave the same way as normal tiredness. Working less is unlikely to heal me. But I think this is an important step in getting some balance back in my life. It’s time to stop waiting for this to pass and to learn to embrace life in the midst of it.