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Discoveries of a chronically-fatigued Katy
So this blog is a bit different because I have a specific audience in mind, but please feel free to listen in. Much of the time I feel the things Jesus is drawing my attention to are helpful for all of us, and I want to share them out like handfuls of treasure for whoever wants to collect them. But this one is a little different. I sort of want to put a light here in a dark cave because when I came to that place myself I didn’t really know where I was. It took me a while but I did find lights there that people had left for me. The nature of chronic illness is that most of us are limited in ways that make it difficult to connect with each other. But it was in books and writing and messages from people who have gone before me that I was able to find some light to illuminate the new space I was in. Thank you to all who left lights for me.
And this is for you - you who have newly found that you have ‘the stucks’; you who are wrestling with it and of course, my forgetful self.
Firstly, I am so sorry. It is horrible. The descent is particularly tough if you don’t feel like you’ve reached the bottom yet. I have chronic fatigue. (I know, a proper diagnosis from a real doctor, and that took a loooong time!) Maybe you have something else, maybe you are as yet ‘unlabelled’. I cannot tell you what your experience will be or of the experiences of others. I can only tell my story and hope that it can provide a little light for your own.
The first few months of descending into this dark and secret place were so confusing. My body was suddenly not responding to sleep and coffee the way it should. There was no return from tiredness, each day only further adding to the previous days tiredness. My body was learning a new leaden weight and my thoughts were blurring together.
- this was me three years ago, the beginning of the virus that never went away
Emotionally, I was scrabbling frantically to avoid and retreat. I was determined to resist this horrible physical change, whatever way I could - denial; fighting by trying to get well; finding an explanation so I could control it and fix it... The last thing I wanted was to listen to my body or to accept that I didn’t know what was going on or how long it would last. Obviously all those reactions are sensible and reasonable in the face of what I saw as a big fat brick wall. Perhaps we have to go through them as humans. I was so scared of being ‘ill’ and what that would mean for me. But if you are facing a brick wall of stuckness, here are some things I have found on the other side...
Watching the world pass by
It’s not a brick wall. It’s an underground world. One of the things I have found hardest about my walk with chronic fatigue, is the invisibility of it. I can feel forgotten by the world, left out of all the things that I classically think of as good about my life. At the start, as the initial tired edges became a whole tired reality I started missing more and more things that I enjoyed, and eventually I was missing out on everything: days out, playing with my children, reading. Eventually even my ability to have a conversation with Sam with any coherent sentences disappeared. My ability to pray. My ability to get out of bed. That’s the full stucks. And it felt like a kind of death. A death of all the stuff I loved and enjoyed and wanted to use to create my life.
But I’ll tell you what I found. I found Jesus there. I found that Jesus doesn’t need a world to give you everything, because he has everything inside him. I found that there was a secret world I had never fully explored before. He gave me the whole world in himself. Practically, this looked like a lot of daydreaming, with little else I could manage. But Jesus was with me in my dreams and my heart was lifted in a way that no cliche or positive thinking could do.
“If I make my bed in the depths, you are there.” Psalm 139
Being no good to no one
You are not less when you are doing less. This one is easy to believe in theory but incredibly painful to hold on to in my weakness. When I am active and contributing I feel more valuable, because I can see that my life has purpose, that I am making a difference. This is good. But God doesn’t EVER change his view on my value. My performance or contribution is irrelevant. His love is the only perfectly unconditional love in the history of time, as we see over and over and over in the Bible. “If we are faithless, he remains faithful, for he cannot disown himself.” 2 Timothy 2:13 If he changes his mind, he self-combusts. What we do doesn’t affect his love. He is beautifully, perfectly immovable. His love is solid as a rock. So he isn’t half as bothered by me lying in bed as I am. He hates that I hate it. But he isn’t worried about my failure to do anything useful. He likes being with me.
It is good to learn this. It takes the pressure off. It is probably the thing I struggle most to believe and hold as I get a smudge of energy back: straight away off I race to DO something. That’s great, but it doesn’t change how God sees me. I am not more worthwhile the days I manage to get up. He just loves and loves and loves. So we can just enjoy being loved, under the blanket or not.
Living small
It’s really hard not to be seen. To live an invisible life that barely brushes the lives of others. To be misunderstood or perhaps forgotten by other people. Long days stretch out with nothing and no one in them. It is monotonous and you have no energy for connecting and yet you long to be seen and held.
Living small is a different way of living. It is a beautiful, powerful, precious way of living.
This is probably my favourite verse for dealing with my cfs. “The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance. I will praise the Lord who counsels me; even at night my heart instructs me. I have set the Lord always before me. Because he is at my right hand, I will not be shaken.” Psalm 16:6
Don’t get me wrong. Being too tired to go downstairs is horrible. It is not ‘pleasant.’ But God can make a bed a sailing boat and a tomb the beginning of a whole new world. This is a resurrection miracle, not just a silver lining.
This is not me guilding a cage. It is not a cage. It is his hand.
What God did for me, is doing for me, is teaching me to spend time with him in deeper ways than I ever have before. How to do things that lovers do, like silence and staring. These are the deep things. Like a pebble thrown into a lake, the ripples on the surface are small and maybe my life looks insignificant or even absent. But the movement is all in the deep.
All by myself on my own
As well as learning a bit more about how to be held, learning a bit more how to be loved, in this quiet place, I have also come face to face with someone I used to avoid. Me.
For me this is one of the hardest things of all. It is also one of the places I have experience the most healing. I didn’t really like myself before I got sick, I often don’t like myself now. But we ARE talking! And I am listening to those parts of myself that I had locked away. And I’ve discovered in embracing my inner bad guy, that God really likes her. God isn’t looking for my perfection, he’s looking for Me. For my whole, imperfect, weak, confused, doubtful self. So I better let her be seen so she can be loved too.
Being on your own a lot is hard. But for me it was the beginning of something really powerful: accepting myself, which enables me to accept the acceptance of God. He offers this always, but we can’t feel it if we cut limbs off or put them in cupboards.
So precious deconstructed one, you have not been forgotten. You are not a waste. This time is not being deleted. Lean into Jesus and his love for you. For the wind and waves obey him, and when he doesn’t take them away, he teaches us to ride on them.
Katy x
(c) words, recordings and images, Katy Durdant-Hollamby 2021
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