the struggle

I would like to write an entry for this Wednesday’s walk…but I am struggling for inspiration. This is not a new thing by any means – I frequently struggle for inspiration, have struggled for inspiration – so perhaps this post could be valid after all.

I have always been creative, as a child drawing and doodling, making up stories, writing down stories, begging my sister to tell me stories (which always had a Lucy in them). For many years I simply assumed that I would, in fact, write stories always. The trouble is, I always get stuck. Something unnameable gets stuck in my throat and then – how do I write my story?

I used to want to write a novel. To be honest, that ambition has fallen away from me. I would still like to write, but…

This tiredness that I have to bear, have had to bear for what is now over half my life – it gets inside my head. My concentration slips, my memory closes down, and the weariness gets soul deep.

I first started suffering from CFS/ME at the age of 14. It’s tough to deal with as a teenager – I couldn’t stand the divide it put between me and my peers – and the lack of understanding I found in those of my own age group. It was a vicious cycle – the more misunderstood I felt, the less I enlarged on what the problems were, and had no wish to be identified by this thing I never asked for. So desperate was I not to become labelled by it, I volunteered very little information. I don’t think I would have known what to say even if I wanted to.

At first, my friends were understanding, but prolonged absence and the resulting distance made it more difficult. I clearly remember two of them talking in front of me about how they couldn’t just stay at home all day, how they would have to get out and go to school and see people – and I just felt clenched. It wasn’t something I could control. I just sat there listening, and feeling the exhaustion that they didn’t understand, feeling it dominate my life and dictate my actions.

There were these little moments of teasing about how often I wasn’t there. The moments weren’t all the time, but they were enough. Do you think I want this? Do you think I don’t hate it? Do you think that what you’re saying isn’t clobbering what little confidence I have left in myself? Gradually I stopped bothering to explain anything. I didn’t have the coherency, anyway. What do you do when your body betrays you?

It’s not like that now. Thankfully I haven’t felt misunderstood in that way for a long time. People accept it, even if they can’t grasp it, and support my decisions. But I still hate having to say it, to explain it. When something dominates your life, it’s hard to describe yourself without it. I am less stressed about doing so than I used to be. But. I love meeting new people by nature. Often I dread it, simply because of the elephant in my head, that will have to come out, and explain why my life cannot be easily labelled and pigeon holed.

But would I want it to be? Although this is a bad patch now, I think exacerbated by the medication I am on for my head and neck, there have been good times where I have felt relatively well. There have been times when I have known healing. The last few years’ relapse has held quite a sting for me at times. I’m still waiting for the new healing, but it hasn’t come yet.

Perhaps without it I would not know what I do now, see what I have seen, learnt what I have learned. Perhaps I am kinder, wiser, softer for it, not inclined to be judgemental, always wary of labelling others – distinguishing people for who they are, not what they do. Perhaps. Sometimes I think – have I not learned this lesson by now? Can’t I try a little living without it? Does that sound sad and pathetic?

I didn’t intend to write about this at all, and I’m not sure it fits the topic, but there you are. What am I supposed to be? I still feel, as I stretch my life around the fatigue, segment my days in order to control it. The fact is at 14 years old I never once imagined I would still be dealing with this 15 years later – and this last relapse has been one of the worst.

I feel I have no right to complain, and I probably don’t. But sometimes…I have to say it somewhere. We all need to scream, occasionally, metaphorically or not. We all need to open our hands and say: this is how I feel, right or not. I want to be better.

The fact is I can’t remember. I can’t remember what it feels like not to feel tired. I can no longer judge what is ‘normal’ as far as energy or strength or healthiness goes. I feel as if I am stretched so thinly – and not because there is so much to stretch over, but because there so little to stretch over with. The fact is I am afraid I will never feel strong again.

I started trying to explain why I struggle to write. This is only part of the reason why I struggle to write, when I desperately want to. But it is part of the reason I struggle to do a lot of things, when I desperately want to. But I am not the only person to struggle in the world. I am only one of millions.

Cry freedom then, for those who are wrapped in chains, much heavier than mine.

Today: 5/10, medium

10 thoughts on “the struggle

  1. Sally-Ann says:

    We all have different struggles in life and I feel that it helps to share those struggles. We may not understand completely how another is feeling, but we can offer a willingness to try and understand and we can offer friendship and compassion.Thank you for sharing your struggle.


  2. brunettekoala says:

    Oh Lucy it’s like you took the words right out of my mouth? keyboard?I so empathise with this. Having had CFS and my family just not understanding, my church not understanding how one day I can be full of beans, and the next day unable to move. And it’s not just been CFS, it’s been how closely that connected to ‘the possibly PMS, maybe endometriosis, we’re not sure’ that just causes me so much pain and misery and this feeling of not being in control of your own body. Friends not understanding. And me not knowing how to talk about it.Praying for you so much sister, and thank you for sharing and being so honest in this.It DOES make a difference.


  3. lynn says:

    oh lucy, it’s hard for me to know exactly what to write that isn’t trite or patronising because I have never suffered long-term ill health except I want to say that you shone through this post.You remind me of Job; who suffered much but then (in 42:5) had a revelation of God and his goodness. God is never any man’s debtor and you are surely safe and held in his arms. Your eyes WILL see him. Our chronology so frustrates me sometimes. We live in this time dimension that we know God is above. To know that healing and wholeness is in him and with him and through him and all around him – and yet we’re still here where all this bad stuff goes on…..I am comforted that he is the restorer and healer and we can ask and believe and ask and not doubt and ask and still know his goodness, with full and certain hope of healing even if it comes at a time we can’t see at the moment. Because he loves us.much love to youxx


  4. Lynnette Kraft says:

    Lucy, I had no idea you struggled in this way. I don’t have CFS, but I had a time in my life when I know I was struggling with it – or something very similiar. I cried every morning when I woke up because I felt like a truck ran over me – my body didn’t want to move. I had body aches, headaches, dizziness, but most of all – debilitating fatigue. I was depressed daily because of it too. It lasted about 10 months and when I got pregnant it went away.I now think that it was associated with adrenal fatigue. My oldest son also suffered with it in his teenage years (16-17). He’s healed now and doing fine.I say all of that to say – my heart goes out to you. Keep searching for the root of the problem though – In my personal research I’ve found that CFS is almost always a symptom of another problem (like B deficiency and/or adrenal fatigue…parasites, congested liver – or all of the above! Jared followed a very stict cleansing (drying) diet for 90 days and did colon, liver and parasite cleanses. He’s also been on adrenal support and B-complex vitamins and he really is healed. (Has been for about a year now) Have you looked into any of that?Well, I don’t mean to be a know it all. I know that the answers aren’t always the same, but I do want you to know that I have some information to share if you are interested. Okay? If you’ve already tried all of that – just ignore me. 🙂 I’ll pray for you as soon as I finish typing this – I promise.Love,LynnettePS When Abigail peeked over and saw me reading your blog she said, “I love her”. You’re a neat lady.


  5. Julie says:

    Thanks for sharing. My mother was diagnosed with CFS 17 years ago, although she seems to only have problems when she gets stressed. I can only imagine what it must be like for you. I'm sleep-deprived taking care of my youngest son & I feel like my brain doesn't even function and I have no energy. I couldn't imagine feeling like that for years.You will be in my prayers.


  6. angeljoy says:

    It seems it would be more of a challenge when trying to explain CFS to someone because it’s not a disability that can be seen or understood as well. I can imagine someone saying, “Tired? But of course darling, everyone is tired! You just have to push through!” I may have told you that my mom has been recently diagnosed with CFS. I have trouble understanding it, but it wipes her out. I pray you are healed. For good.


  7. Tricia says:

    There’s not much I can add to what others have already said, but I would say that I’m always eager to read your writing, and perhaps what you might be meant to do at some point is to write about your experience with CFS and the spiritual/emotional/physical challenges that it creates, to help minister to others who may be going through the same thing. I know this may come across as trite, but sometimes it’s when we’re weakest that God can use us the most.Many ((hugs)) to you. I’m praying for you.


  8. Linda says:

    Lucy, I have tried to send you a comment 3 times now,…and I got cut off,…so I will try again.First I want to say that I am sorry that you have CFS. And my heart breaks for what you go through. Second, I want you to know that I will pray for you my friend, as soon as I am done with this comment.And Third, I read Lynnette’s comment to you and I would encourage you to let her give you all of the info she has,…because she is telling the truth about my grandson Jared and how he is so much better because of the natural approach he took to his health issues. And Lynnette too. (It couldn’t hurt anything, and I am almost certain it could help)Lynnette has helped me, (and others) many times with natural/healthy remedies for health issues. And it is God that has led her down that path.I hope we don’t sound like “know- it- alls”,…or like we are making light of what you go through. Not meant to sound like that at all. Just hoping to be of some help to a dear Christian sister, if possible.If nothing else I want to encourage you in the Lord and remind you that if nobody else really knows or understands,…He surely does. And He loves you very much.You are the apple of His eye!You are Held In His Arms Lucy!Linda


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