Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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CFS turned my spiritual life, and my church world, upside down

Discussion in 'Spirituality and ME/CFS' started by Jody, Dec 29, 2009.

  1. Jody

    Jody Senior Member

    I hear that.
  2. StacyA


    Hi! This is my first post and my first time on this forum. Having a rough day, needed some support, and found this thread.

    I don't have time right now to post much, but I'm just so glad I did find this thread! I've been a Christian since I was 7, and I'm now 47, so that's a long time! Grew up Southern Baptist, and would still consider myself fairly aligned with that doctrine, although not as hardcore, lol.

    But I am so totally struggling with my faith right now. I don't feel like I'm in danger of losing it (at the moment), but I have really been in some dark places of the soul lately. I haven't been officially diagnosed with anything, but I highly suspect I have CFS, maybe dysautonomia, too. For the last three years I've been chronically sick (mostly sinus infections) all fall/winter, and this past winter I had strep throat for 2-1/2 months. It sounds silly over something as no-big-deal as strep, but I really thought God had abandoned me, or at least just turned His face from me.

    I have so much guilt from this disease -- I sing on the Praise Team at my church, but have missed so much over the last three years. They're nice about it, say it's just a bonus when I can be there, but when I can come sing, it's not because I feel particularly worshipful that I do it. It's a duty. It's because I love to sing. I can't "feel" the worship most of the time, but I do love God and so it's my "sacrifice of praise."

    I guess I would say I'm in the middle of trying to figure out how all this horrible health fits in with being a Christian. I had the elders of my church come pray over me last January, and about a week later was when I got the strep. I blamed myself for not having enough faith. Then I yelled at God for not hearing me. Since then I've mostly reconciled to the fact that He does hear and He does care, but I really, really am not happy with the idea that I have to suffer in order to grow into the person He wants me to be.

    My pastor (who is awesome) has me reading Streams in the Desert devotionals every day. They're comforting on one level, but I'm still angry about having to feel like this all the time. My family is going on a vacation to England and Norway in a week, and I just don't see how I can do it. I'm exhausted. I'm praying that all will be well and I won't ruin it for everybody. I want to go, but I'm so afraid of this. I am so hoping God will get me through it.

    Okay, starting to get emotional now, and I have to take my son to his dad's work so they can head out to the airport for a weeklong thing my son is doing in North Dakota (I live in Texas). I don't want him to go (he's 16), and will miss him, so this is not a good day.

    At least I do feel, right now, that God understands me. Just wish I knew how that worked, exactly.
  3. Sunday

    Sunday Senior Member

    Boy, I so understand that feeling of really really not being happy about having to suffer in order to grow. I think I have enough character, thank you. All I will say is that my understanding is that the divine force, whatever you want to call it, doesn't want us to push: not ourselves, not others. A lot of our culture militates against this, but I am coming to understand that to take care of ourselves is to do holy work, because we are all, everything is a part of spirit.

    Sorry if I'm not being too coherent, these things are hard to say. But I will also add that being angry or worried or whatever - when I stomp those feelings down, that's when I get into trouble. But I don't believe in just letting them loose on whoever happens to be handy, either. I'm practicing feeling my feelings and then allowing the divine flow to take them away. I've been following some of Anisa Aven's work lately and find it very helpful; you might too. Try googling her.

    What I would say, what I wish I had said to myself, is to listen to your body. Your body is your soul's voice.

    By the way, there's an old saying, "When we sing, we pray twice." Maybe you could just allow yourself to have a crappy attitude and sing anyway, and just let what happens happen? I miss singing with others so much; I can't be in a performing group for the same reasons as you, but if I had a local casual singing group I'd be there in a flash.

    You're not alone This kind of thing gets you way way beyond the platitudes. If you can ease off on the guilt even a little, that would be good, because it uses a lot of your energy and it's not all that great for other people to be around, either. I try distracting myself, the way I would a two-year-old: I don't try to STOP being guilty, just send my thoughts another direction. Or turn it over.
  4. StacyA


    My problem is I THINK too much. I'm always wrestling with something in my head. Usually about what a spiritual screw-up I am. Wrestling with the fact that Jesus is supposed to be all about grace, but I grew up in a fairly legalistic setting and really struggle with grace (I believe in it, just have trouble applying it in my daily life). I'm also going through this thing with wondering why there rarely seems to be a let-up. I have baggage -- my oldest brother was suicidal for several years when I was growing up, which turned our family upside-down. I wore a back brace in jr. high and high school (although in HS it was only at night) for scoliosis. I had an emotionally abusive boyfriend for several years as a young adult. Then things turned around -- I met the love of my life, we got married, it looked like sunshine and roses from then on. But then I had a baby, and our marriage has been difficult ever since. We used to be best friends, now we love each other but we have major issues. When I was raising my son (well, I'm still raising him, he's almost 17), the second round of CFS kicked in (I had a nasty bout of it for a couple of years in college), and I thought I would die from exhaustion. I didn't understand why God didn't heal me -- I had faith, I knew He loved me, so why wouldn't He heal me? I actually grew a lot spiritually during that time, because I had to get from perplexity and sort-of having my feelings hurt by God to realizing that He is God, and He is the one who is to be in control of my life, not me. So life kinda went on with that fatigue, we moved back to Texas to be closer to my parents, and although I love it here, my spiritual life has taken the biggest battering yet. I still struggle with the CFS, as well as some other things that may or may not be related.

    I just do not get how God thinks I can work on my relationship with Him when I have massive brain fog. Things that don't matter so much are fairly easy to do (scrapbooking, writing, doing family history), but anything of any huge importance saps all the energy out of me in every way possible in about five minutes. I can't concentrate enough to have much of a prayer life. I read my Bible every day, but half the time I can't really focus on it. So, if I'm supposed to be growing as a Christian, why am I plagued with this stupid health thing that keeps me from being able to focus on it? I've read several of the earlier entries in this thread and it seems like people are saying they grew closer to God through this illness. I have to fight like a maniac just to keep my head above water, spiritually speaking.

    So I feel like I'm on a battlefield and I've been trampled into the mud so many times I don't know where I end and the mud begins. I struggle to get up, I can do it for awhile, and then I'm down again.

    I know about resting in God, but I don't think I really know how to do it. I was raised that you WORK on your relationship with God. You don't work for salvation, that's by grace, but in order to really please God, you have to prove you love him by WORKING at it. I can't work at it right now. I'd rather escape into my stories or my other hobbies, or just goofing off on the internet than work on my relationship with God because it is too danged hard to do at this point in my life. I know -- intellectually at least -- that God loves me no matter what. Sometimes I get it that He understands what I'm going through and isn't expecting me to do much. But usually I just feel like a total failure as a Christian. I used to be so strong in my faith, and now I'm just hanging on by my fingernails.

    Whew, that made me tired just thinking about it all! So bottom line -- I know Jesus loves me. I just wish I could figure out what I'm supposed to be doing right now. Suffering just seems so ... unproductive, especially when I don't seem to be getting anything positive out of it.
  5. judderwocky

    judderwocky Senior Member

    I think it was Delores Williams that said we all have a period when our faith moves us into the wilderness. Where forces outside of our control force us to re-examine the essence of who we are and what we are promised in this world. Like Hagar - protected by God, and yet treated bitterly by her masters - we occupy a strange spiritual place. We must face times when the weight of the world forces us to move from the fascinations of men... their great creation of civilizations and treasures... and into a sacred space. I think for many of us our CFS is our journey into the wilderness.

    Hagar is an interesting character in the Bible. She was a foreign born female slave in the Hebrew testament. In this sense, she has no power. Yet she is also the only person in the Bible to name God.

    Genesis 16: 13-14 (Hagar) gave this name to the LORD who spoke to her: "You are the God who sees me," for she said, "I have now seen [c] the One who sees me."

    There is always strength in the face of suffering. It stems from our endurance, and the audacity of meeting God in that place of vulnerability.
  6. awdbawl


    You might just be my CFS twin, LOL!

    Here I thought I was the only one! :Retro smile:

    Are you sure you're not my alter-ego? :eek: :D

    I call it "subsistance faith," or when I'm really in a cynical mood, "beef jerky faith.":rolleyes:

    AMMMMMEN, wummun! I keep thinking, OK, I know God is billions of times wiser than me, and who am I to question Him, puny dustspeck that I am, but if I were running the universe, would I take one of my most productive workers and allow her to be afflicted with something that renders her basically a couch potato (which is utter anathema to the core of her soul)?!? Is this good management of human resources?!?:Retro mad:

    Anyway, thank you for your outstanding post, that sounds like you are cut from exactly the same cloth as me. What an encouragement!


  7. awdbawl


    Wasteland would be more like it. GRRRR! ;)

    Fasssscinating stuff, Judder! I never noticed that about that passage. It echoes Job 23
    Behold, I go forward, but he is not there,
    and backward, but I do not perceive him;
    9 on the left hand when he is working, I do not behold him;
    he turns to the right hand, but I do not see him.
    10 But he knows the way that I take;
    when he has tried me, I shall come out as gold.

    Still, I don't like the smelting process! {thumbs down}
  8. Andrew

    Andrew Senior Member

    Los Angeles, USA
    I'm reading the recent messages here and not sure which one to reply to. When I talk to God every day and read the Bible I feel better. But I drift in and out. The best I seem to manage lately is daily thanks to God for giving me a new day. And it would not be that hard to do more. Really, all I have to do is rest here on the couch and talk to God for awhile. How hard is that? It is much easier than trying to figure out my latest hobby-related difficulty.

    I used to have a friend with CFS and we would talk on the phone about the Bible, pray for each other, etc. That helped me keep my connection with God. I've lost touch with her, though. And online stuff is not a way I seem to connect with this.

    So I sit here waiting for it to all kick in again. I know it will, eventually. But the fact remains that I could kick it in gear right now. Or, at least, I could try to.
  9. Martlet

    Martlet Senior Member

    Near St Louis, MO
    I just popped into this section to see what's been happening and I wanted to say that I totally understand those who are finding prayer difficult. I was in exactly that place when I was at my sickest and used a little booklet called The Miracle Hour to help me stay on track. I loved it because it breaks everything down into five minute segments. Later, when I was healed, I met the author and told her how her little booklet had helped me through some of the darkest times. She cried!

    But I also wanted to say that it is easy to be hard on ourselves, especially when our parents were in any way overly demanding, whether it was our school performance, our behaviour at home or our relationship with God. Fortunately though, God is not nearly so legalistic as some of His children! Many was the time when I would nod off, even a couple of minutes into any of those five minute segments, or my mind would wander all over the place until I remembered that I was "supposed" to be praying. Then I would smile, apologise to the Lord and get back to it. Or not. The thing is, we are talking about a relationship here. Not just any old relationship, but a relationship with the Creator who knows exactly how we work, how illness affects us, how our minds wander, and loves us just as we are. It isn't the succeeding that matters, but the attempt to pray. Just like when our children brought or still bring us pictures they drew at school. Pretty pathetic little pictures of vaguely-recognisable houses and people out of proportion, but we love them because they come from our children. That is how our Father in Heaven responds to our pathetic little attempts to pray, and because He knows us, He sent us the Holy Spirit to pray in us when we cannot. Know that! When we want to pray and fail, the Holy Spirit is communicating with the Father and with Jesus from within each and every baptised Christian. No exceptions. So we can rest in that knowledge.

    I don't know why we suffer. I think that's got to be one of the oldest questions asked by mankind, but suffering, when linked to Jesus' suffering on the cross, is not without merit. We can offer our pain to God, particularly when we are praying for the salvation of another. Not easy to do but if it was, then it wouldn't be suffering.

    Finally, for those who feel that they are not being good Christians because of CFS/ME, I really think it is the "accuser of the brethren" having a go at you, because when the Holy Spirit convicts, He always does it gently while showing us another way. That raging voice is the scumbag, old "snatch" who wants to rob us of our peace. Don't let him. Just turn your gaze back to Jesus and yes, if necessary, fall asleep in His arms. He has no problem with that.

    I'll be praying for you. Please offer one for me,'cos I am always in need.
    awdbawl likes this.
  10. Enid

    Enid Senior Member

    Always there all Religions. But let us fight for no confusion of levels. Too many suffer..

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