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