What I mean when I say, “I’m tired”

Today I took my two younger children out to a farm park. When I got back I spent an hour painting furniture. Then I cooked our dinner.

Just an ordinary day in the life of a mum, right?

Yup. Except that by dinner-time my arms and legs were trembling with tiredness, and it was all I could do to eat. By the time I’d put my daughter to bed, I was so tired even breathing felt like an effort.

Because although, in one sense, I am an ordinary mum, in another, profound sense I am not. I am a mum with a chronic health condition.

My Crohn’s disease is in remission. I am so thankful for that. But while that means I am very happily living without daily diarrhoea and sickness, it doesn’t mean I get to live without some of the other symptoms … tiredness and bowel pain being two of them.

It’s the tiredness I want to focus on, because it is the one symptom that is so hard to explain. When people say, “I’m tired,” it can mean so many different things. Having a newborn baby introduces a whole new level of meaning to the phrase! Having two toddlers at home is yet another dimension! I’ve experienced the desperation and horror of both 🙂

But living with a chronic condition … this is a tiredness so profound that it can feel hard to breathe.

For me, right now, the worst thing about it is the lack of understanding from other people. My husband is wonderful, believes me when I say that I am too tired to pick up the toys on the living room floor, too tired to read, too tired to clean.

Not everyone is so kind.

I know what ordinary tiredness feels like, and how, most of the time, it can be pushed through. Or how, if you just sit down for ten minutes, it passes. But this is not like that. It feels as though the bones in my arms and legs have turned to lead. Moving them is hard work. It feels as though my rib-cage is weighted, as though when I breathe in I am having to lift bricks resting on my chest.

It gets me down. Very down. Because I don’t like my house being a mess. I don’t like not cleaning the kitchen sink for two weeks because by the time I’ve done the basic essentials like emptying the dishwasher and cooking dinner, I’m out of energy. I don’t like telling my kids I’m too tired to play with them. I don’t like choosing a freezer-to-oven meal yet again because the healthy, home-cooked option is too hard. I don’t like saying to friends that going out in the evening is too much at the moment.

It makes me sad and angry that just taking my kids out for a couple of hours leaves me wiped out. I hate what this condition has stolen from me.

I get upset that my weight has crept up and up over the past two years because when I’m down I eat, and I have no spare energy for proper exercise. I joined a weight-loss programme last year, but decided that the stress and extra work of preparing meals from scratch was making me tired and irritable, and though I loved the impact on my body, I decided that, right now, being there for my kids is more important than how I feel about my body (and fitting in with a cultural stereotype of what is beautiful).

This is not meant to be a complaint. I’m writing this so that, if you too are living with a chronic condition, you have something to show those who do not understand you. Sometimes it helps to read something by a third party.

So if a loved one or friend of yours has just shared this with you, read more into their ‘I’m tired’ than how you feel after a long day’s work. Instead, remember the last time you were properly ill, and the first few days of recovery (when you’re well enough to be out of bed, but doing ordinary things leaves you wanting to crawl back into bed). That’s the level I (and your loved one) live at most days. We can manage ordinary things, so it looks like we’re ok. I can hoover my house, clean my bathroom … but then I have to stop and rest, or I’d have nothing left for my kids when they come home.

I’m constantly having to choose, to make sacrifices, to conserve my small allowance of energy, making it stretch. I make choices most people don’t have to weigh up: Do I sort out the pile of laundry or take my toddler to the park today? Do I go to the supermarket or arrange to meet another mum and toddler? I want to do both, but I know it will be too much.

Sometimes I choose something knowing I will suffer for it (like today), because I’m sick of this tiredness ruling my life. But I can only do that so often.

And what makes it 100 times worse is when people don’t understand, don’t even try to understand. It leaves me drained and upset when people judge me as a failure, assume I’m lazy, weak, ill-disciplined … and I have no opportunity to correct them. When people ask how you are, you can hardly launch into a long explanation of how you feel, so “I’m quite tired at the moment”, has to suffice. It barely scratches the surface.p1000669

But it humbles me, which is a good thing, and I am learning to rest in the fact that God knows I am doing everything in my power to please him. I am learning to be happy that he understands, he knows. But every now and then, someone else’s complete lack of understand really, really hurts.

So if you know someone with a chronic condition, be kind. Remember times you have felt like even ordinary life was too much, and how frustrating it was for you, just for two or three days. Let the person have a little moan every now and then, maybe even cry on your shoulder. Leave out the judgement on their house, appearance and life choices. Perhaps they hate having crumbs on the floor as much as you do, but don’t have the choice of whether to leave them another day or not. Have a bit of compassion for them. Because now you know what they mean when they say, “I’m tired”.

Advertisements

Doubt and Silence

I am in an ugly season, of doubt and silence.

I am weary to my core, and have nothing left to give but the relentless days keep coming. The sun keeps rising. Children need dressing and feeding, and leave me no space to turn inwards, or even upwards.

My husband has a back injury that has recurred five times in the past two years. Each time he suffers terrible pain for weeks. He can’t sleep, and he recedes (understandably) into a cave out of my reach. We drift through the days, which become fuller for me, as the help I depend on from him has to stop.

My body is weary. My stomach is playing up, causing nights of pain and nausea, but I must get up in the morning to care for the toddler and get the older two to school, because my husband can’t do those things right now. I ache for breathing space; I feel my lungs are compressed by the days and hours and the pressure of carrying children and housework and husband and church.

My prayers are desperate, like the chirping of a helpless chick. Wordless, most of the time, a bewildered wail. Help. Help.

It feels as though the help does not come. I feel alone.

I have been through times of grief, times of struggle before. I have watched others struggle through bereavement, illness, and just hard days. We can be so tempted to come to sufferers with words, layering up clichés of supposed hope, which often injure and deepen the sorrow.

God works all things for good. This may be true, but in great grief we just can’t see it.

God’s power is made perfect in weakness. Yes, but I’m not experiencing God’s power right now.

Sometimes we just want someone to sit with us, to grieve with us. To sit in silence.

The Lord is good to those whose hope is in him, to the one who seeks him;

it is good to wait quietly for the salvation of the Lord.

It is good for a man to bear the yoke while he is young.

Let him sit alone in silence, for the Lord has laid it on him. 

Lamentations 3:25-28

Perhaps, when God’s silence is most profound, this is what he is doing. For we know he knows our grief. We know he tasted sorrow and loneliness and pain to the dregs. We saw him weep in Gethsemane. Alone.

Perhaps his silence is that of companionship, where the pain is beyond words. Perhaps the tears are rolling down his cheeks in sympathy. Perhaps he is sitting right there all along, in silence.

Behind the emetophobia

Emetophobia is a fear of vomiting (or someone else vomiting).

I have suffered from it for as long as I can remember. I have encountered many who also suffer from it. A big part of it is shame, and a sense that you are somehow pathetic for not being able to just get on with being sick and then move on, like the rest of the population.

I have had therapy which helped me to overcome some of the fear. But I would still rather almost anything happen to me than catch a sickness bug.

I fear being sick more than anything else. (For some emetophobes the fear is broader – others vomiting near them, watching a vomiting scene on TV, even hearing or seeing the word written).

If you are like me, and fear being sick, it is quite possible that you share another trait with me – being a highly sensitive person.

An HSP has a brain which processes stimuli at a far deeper level than the average person. In real terms this means that experiences will be more intense, whether physical or emotional.

I believe this is why vomiting is something I avoid at all costs. Every single sense is stimulated unpleasantly: taste, smell, sight, hearing and touch. For the HSP it is an absolute bombardment of misery, and utterly out of their control.

No one likes being sick. Most people avoid it if possible. But for the HSP it is overwhelming.

Realising that this is part of who I am has helped. This is not going to go away, and that is discouraging. But the reason I hate it so much is not because I am weaker than everyone else, or just pathetic. It’s not because I did something wrong earlier in my life. It’s not because I suffered a traumatic experience. It’s just because of who I am.

And being highly sensitive, for me, has a massive upside. I am also incredibly sensitive to the many pleasant sensations that this world affords. I feel uplifted just by walking past a garden of beautiful flowers, or a peaceful river. I experience deep joy in watching my children play or holding my husband’s hand. And spiritual joys perhaps are easier to come by … one of the problems that seems to be exhibited by western Christians is a lack of wonder at the character of God. Yet I rarely struggle to find those emotions – perhaps they are closer to the surface than for the average person.2014-06-23 20.53.14

So although sickness is traumatic and awful, it really only lasts a few moments. It is far outweighed by the joys and pleasures that are just as intense and far more lasting. I just need to remember to focus on those, instead of fearing the worst all the time.

Why is life so hard?

“I had such a hard day yesterday. I felt exhausted and out of sorts. In the end I let the older two watch TV and had a bath while the little one played on the floor!”

“I’ve finally started to feel better after the flu, instead of utterly drained by the end of the day.”

Two comments I’ve heard from two friends in the past. And my inner response each time: “But that’s how I feel almost every day!”

I’ve been aware for a long time that I don’t seem able to cope with as much of life as many of my friends. I have put it down to various things … insomnia, post-natal depression, Crohn’s disease.

But I think I have finally found the real reason. I can’t put into words the sense of illumination that I experienced upon discovering the term ‘highly sensitive person‘.

I dislike the term intensely. It brings to mind shrinking violets, hot-house orchids, and people who fuss incessantly because everything isn’t ‘just so’.

But as I read through the list of characteristics, stumbled upon during an innocuous internet search, I could feel my inner self screaming with excitement: This is me!!

I have always reacted more intensely to pain and unpleasant sensations, crying more easily, and tiring more easily than many of my friends. I think deeply and intensely about everything, from which coffee to choose at the cafe, to why I am here and the meaning of suffering.

As I have thought through the implications of this trait, I can see how it has affected every area of my life, from infancy when my poor mother had to put my shoes on six times until there were absolutely no wrinkles in my socks, to my depression in my early twenties, to my current struggles as a mother of three.

I have always felt that unpleasant sense of being somehow less than other people, and perhaps this is because only 15-25% of the population would identify as highly sensitive, and among those there would be a spectrum. I suspect I am on the more extreme end, as I identified with every single trait, many of them strongly.

I think for people who are not very sensitive (which is about 40% of the population according to the research done by Aron), it would be very difficult to understand those who are. And I don’t think the chosen label helps very much with that. All it means is that my brain processes stimuli far more intensely, which means, practically, I will feel sensations and emotions more intensely.

The trait has been likened to autism (though it is not connected), in that the highly sensitive person will struggle to filter out things that the average person can. So an average person can filter out the extraneous noises in a room, while a highly sensitive person will have a harder time doing that.

What does it mean in real terms?

When I was a child, being hit on the head by a stray football in the yard would shake me up for a long time, even as a teenager. I would watch other kids laugh it off and carry on playing, while for me the pain throbbed, and I would be bombarded by emotions: shame and humiliation, especially as tears welled up in my eyes and I experienced fear that others were going to notice and laugh; an overwhelming urge to run away and hide somewhere quiet until my heart stopped pounding and the pain subsided; as well as a profound sense of shock. Netball was a tortuous experience. My instinct was always to duck rather than catch the ball, leading to mockery and disdain from my fellows and even, sometimes, the teachers.

I remember adults expressing extreme irritation and impatience towards me, as I began crying yet again, or failed to throw myself into whichever experience they had decided would be good for me, including running through freezing hail, mud and rain, flinging myself with abandon over a hard and heavy pole, and practicing throwing and catching a hard missile that threatened to slam into the side of my head at any moment.

I can see how, if you are less sensitive, a child who cries easily, startles easily, and is cautious must seem a bit pathetic and fragile.

I feel an intense pity for my child-self, and for any child who is trying to grow up in such an intense world, and a world so intent on admiring and exalting those who are bold and confident.

I’m hoping to write a series of blog entries about this, exploring how it has affected different areas of my life, starting with my emetophobia, in the hope that it will help others affected by the same trait, and also that it will help me process my life and find new reasons for joy in it.

Because although it is easy to see this trait as a negative thing (and believe me, I often wish I could be ‘normal’ and cope more easily with ordinary life), it has a wonderful flip-side. Although unpleasant experiences are felt more intensely and can lead to a life of avoidance, the highly sensitive person will also experience the highs and joys more intensely. They are quicker to appreciate beauty in nature, art and human expression. Sweetness is sweeter, joy is deeper, and pleasure more intense for the highly sensitive person. 49 Bute Park

I have often felt different for this reason too – my heart soars at the sight of mountains, oceans, sky, trees, flowers, babies. (Of course, this is not to say that the ordinarily sensitive cannot experience such joy also, just that it may be easier for the HSP to access these pleasures).

So although this trait comes with a hefty dose of negative, I wouldn’t exchange it. The joys are too great for that.

Dry ground

When the soil is dry, plants are driven to push their roots deeper and deeper to find water. It makes them stronger in the end, though the long summer may be hard to endure.

08 St Fagans Garden

A dry spell in our garden has just ended. Rain is falling, sinking into earth and pattering on leaves.

In the next dry spell, their roots will be that much closer to water.

I am in a spiritually dry spell. After a winter spent at an oasis of God’s nearness, I am feeling lost and a bit bewildered. God’s arms seemed to encircle me, his presence seemed so near, and now I pray and I feel I am speaking to an empty room. My heart is heavy, and it is hard to lift it high to God.

But our feelings are no measure of our circumstance.

The truth is, I am firmly planted in the love of God. His nearness is as certain as the ground beneath my feet. I must learn to trust in the certainty of his promise, of his character, instead of how I feel.

I put roots down, seeking water, seeking spiritual life. I return again to old texts that have encouraged me before, seeking the silver trickles that once refreshed me. I seek new sources of life, thirsting for the living water that does not run dry.

Christians have written often of the strangeness of these times. Why does God withhold the rain, the sense of his presence? Why do we have to endure dry ground?

In our emotion-reliant culture, it is more important than ever that followers of Jesus have deep roots, strong foundations. We have a rockbed of truth that never moves, and we must take our stand firmly on that, not on feelings.

God is faithful, when I am not. God is good, all the time. God is loving, in a way we can barely understand.

These truths must be the source of my life, my strength, not how I feel about them.

And is it possible that I have been seeking nearness with God, merely to enjoy the heady emotions that follow? Surely God himself should be my heart’s desire, whether he chooses to bless me or not.

Whom have I in heaven but you?

And earth has nothing I desire besides you.

(Psalm 73:25)

Lent and chocolate

Lent has begun.

I know because my Facebook feed and my inbox are both studded with ideas on how to keep Lent this year.

Do a kind deed every day. Give up sugar.

Call me a cynic but I’m feeling frustrated.

Lent has been relaunched recently in the Protestant church. I actually love the idea, and have really enjoyed using it over the last few years to prepare my heart and mind for Easter.

But I can’t help feeling that the general approach to lent is a bit wide of the mark.

Lent is not found in the Bible anywhere. Nor is Easter or Christmas for that matter. I love these celebrations, and find them key anchors for my faith through the year, times when I particularly focus my thoughts and prayers on Jesus and his immense love for us. Yet the Protestant in me always remembers that these things are man made, and while they may be beneficial they are not mandatory. Let them serve our faith, not enslave us.

08-0412My second, and bigger bugbear, is the question of how we keep Lent.

Traditionally it was a period of fasting, when rich foods were rejected, and Christians took time to consider their mortality, and the cost of their sins. It was a time to remember the sufferings of Christ, and join him in them by giving up luxuries and spending additional time in prayer.

Perhaps the problem is that the Western church has let go of fasting as a habit, and doesn’t really understand what it means.

For a long time I thought of fasting as pretty much raising my voice in prayer. Holy shouting. It was like me saying, “God, look how much I care about this. Now you have to listen to me.”

I was wrong. Fasting is not a spiritual loudhailer, a holy lever to put added pressure on God to act. God will act in his own time and in his own way. Our prayers are means to his ends.

So what is fasting for then?

Fasting is for us. It is a servant. When we fast, we are meant to give up things that distract us from pursuing God. Historically, preparing food was time consuming. It would take up most of the housewife’s time, to grind grain, sift flour, knead bread, set it to rise, and then bake it. To take a day off from preparing food would free up a great deal of time for her to kneel and meet with God.

Fasting reminds us of our dependence on God. I’ve tried once or twice to go a day without food, and by 10 a.m. I’m regretting my decision. I’m hungry, I’m irritable, and craving something, anything to take away the hunger.

I’ve often been baffled by the story of the temptation of Jesus, and how he survived for forty days in wilderness. A similar story exists about Elijah, who travelled for miles at a great pace, for forty days. God’s Spirit sustained him. And Jesus tells Satan, “Man shall not live by bread alone”.

Our lives are a gift from God. He can sustain us without food, if it pleases him. Food, in the end, is a signpost of our real need, our true hunger. Am I hungry for God in the way that I am hungry for food? If I miss my morning prayer time, do I feel it? Do I miss God when I go hours or days without prayer?

Fasting encourages us to ask these questions.

 

I am considering how I will prepare for Easter this year. I love Lent. I love the period of forty days to prepare my soul to celebrate it’s liberation.

But I will not give up chocolate. This seems to completely miss the point of lent, of fasting. Giving up chocolate is a pretty self-centred thing to do. It almost always springs from a desire to cut calories and conform myself to the idols of this age. The whole purpose of fasting is to take our eyes off ourselves and fix them more firmly on Jesus. It is to give something up, something necessary, something precious, to free up space in my life for Jesus.

Maybe I will give up social media. Or TV. Or one of the multitudinous outlets for entertainment that clutter up our lives.

How will my soul be by Easter if I spent an hour with God instead of watching TV every night?

How will my soul feel by Easter if I spent my morning lie-in reading the Gospel of John and praying, instead of sleeping?

One final point, which I completely attribute to Edith Schaeffer. However you spent lent, whatever you choose to fast, do not let it be a slave. Edith writes in her book, ‘The Life of Prayer’, that when they held a fast day in L’Abri, she always ensured there was a light meal laid out in the dining hall so that those who were distracted by hunger could be refreshed and then return to prayer. The point is not to starve ourselves abstractly, but to give up the distraction of preparing food and eating to give the time more fully to Jesus. This is pointless if all we can think about is burgers. Better to eat simply, perhaps just on toast or soup, and pray with a clear head, than to complete a religious exercise only to give yourself mental brownie points.

Whatever you do this Lent, whether you keep it at all, I pray that your soul will feast on Jesus, and be refreshed.

I came across that viral picture of Drake, today, the little boy battling cancer in the USA.

My heart skipped a beat.

I wanted to leave the image, return to my cosy comfort-zone. I made myself look back. I made myself honour his bravery and his suffering by reading his story.

Such images, such stories, break through comfortable Christianity. They force me to confront the reality of the world. Such stories rescue us from easy answers to the big questions, the questions that have stumped philosophers through the ages. There can be no neat answer to such an appalling tragedy.

If I’m honest, such an image makes my faith skip a beat.

My belief system is thrown into context. What does a poor carpenter from a forgotten corner of the world have to do with Drake? With the suffering in Yemen? With anyone broken and sad and in pain and having lost everything?

It seems unbelievable suddenly. Does God really care? Is there even a God, if such things are allowed to be?

I think through the alternatives: there is no God. Then there is no question. Suffering is not a problem, it just is. Cancer has no higher meaning. It is just part of this cycle of living and dying that will continue ad infinitum. If you are lucky enough to have avoided bad genes or contagion then enjoy yourself and spare a thought for those whose lives are soaked in suffering. This is all they have.

Other religions … with other gods sometimes suffering is repayment. I must have done something terrible to deserve this. I must redeem myself by doing better. What a terrible burden to bear.

With God … I am not sure God provides an answer to suffering. I suspect because no answer would satisfy. Who is going to listen and then go, “Oh sure, ok; I understand. That’s why my little boy can’t eat and is having to take poison daily. I see now, it’s ok.”

Everything in us resists suffering. We know, deep inside, that this is not meant to be.

I prayed for Drake. I prayed for his mother. I didn’t know what to pray – I have never had to watch my sons suffer so much. It’s unimaginable. I suddenly realised that God knows. He watched his son, his only son, be beaten and bruised. He watched him cry out, “My God, my God, why have you abandoned me?”

 

So as I prayed for Drake’s mother I realised, God can comfort her. He knows. He knows what she is going through, to watch helpless while her son suffers. And Jesus knows what Drake is going through. He knows what it feels to be in pain, to want it to stop, to think you cannot go on, but to keep on breathing anyway.

His arms are open wide, so that if Drake’s medication fails he can step into those welcoming arms and be free from pain and suffering. His arms are wide open, so that if Drake’s medication works, that little boy can run to him for comfort and help on the days when it’s unbearable, and know that one day he can be strong and live for the one who did die.

This is something offered by no other religion, a God, transcendent and holy, yet who knows pain. Who has walked my road, and walks it with me. Who has drunk the cup of suffering to its dregs.

This doesn’t answer the philosophical question, I know that. But it offers something I find nowhere else. Suffering alone is probably the worst thing imaginable. Jesus suffered alone, so that he could stand by me when I suffer.