Chronic illness/self worth

Discussion in 'All Other Discussions' started by Gina B, Dec 19, 2011.

  1. Gina B

    Gina B
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    Warning: Long, personal muse and request for advice to follow!

    This is an issue I struggle with and know that some of my BB friends also have chronic illness and pain, so I'm looking for some advice on how you manage the day-to-day of living with chronic pain.

    What probably bothers me most is that during a flare, I feel pretty useless. I have an extreme amount of inflammation that meds aren't able to keep in control and loss of blood, which my body is replacing so that's good, but when it's bad, I sleep a LOT, as in all night and a good portion of the day, then struggle to stay focused when I absolutely must stay up. This gives my husband extra work at home and affects me being able to do very much work outside the home. It really hit hard when I had to leave work unexpectedly (first time at this job) the other day to go to the hospital.

    It means not being able to make commitments at church because I don't know if I'll be in a flare. There's stuff I feel like I could be doing to help my family, help the church, help the kids in the classroom. You know...LIVE! This doesn't feel like living, like contributing in the way a person should be able to both in the Christian world or simply as a human being in society.

    How do you deal with those feelings? Have you found things you can do as a believer to still be a witness and share your faith or help out your church/community that do not require you to disappoint people? For example, there was a need for a cook for a camp and I agreed to do it, then couldn't because I ended up in a flare when the time came. I'd been very excited and the pastor had been very grateful as nobody else was available. I felt completely horrible and simply no longer agree to stuff for fear I'll have to back out.

    It makes for a very lonely existence, just staying in the background, living in fear of when the next flare hits, etc.. I don't struggle much with depression, but do get upset when people mistake my lack of involvement and need for sleep for depression and suggest I get therapy or something. I do get depressed sometimes, but don't feel it is anything abnormal and I still WANT to do stuff, I'm just limited and that frustrates me more than depresses me. There's some fear involved as my inflammation levels put me at imminent risk of a heart attack or stroke, so the doctor told me to avoid stress (HA!) and that means any kind of stress, even the good kind so I tend to try to be more flat emotionally as even getting very joyful, such as really enjoying watching kids perform a play, getting exciting over an opportunity one of my kids has, or even just laughing a lot usually sets my heart off (part of the inflammation includes an enlarged heart) and it could take days to get back to normal.

    Spiritually? I'm starting to get back on track, but do admit that for a while, the spiritual side of things went backwards and I lost my zest for studying theology and praying, talking to God on a regular basis. It stopped being a habit and just felt pointless, but that's starting to go away. Still, it's a shameful place compared to where I used to be, still trying to climb back up. My pastor advised to just keep doing things like before even when I don't want to until it ends, and that advice was really good and seems as if things are at the beginning of returning to normal.

    Still, it isn't easy and it is to the point the realization that this may not be something that gets resolved anytime soon, if ever, is really setting in so now I need to figure out how to live with it, around it, through it instead of waiting for it to go away and don't quite know how to start. The realization really stinks, but having to leave work the other day and sleeping more than I ever have really was a wake up call to quit waiting for it to magically go away and start dealing with it.
     
  2. Scarlett O.

    Scarlett O.
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    Gina, I’m glad that you brought this up.

    My pain is not as chronic as yours as far as daily pain, but it is chronic in terms of its regular patterning over the past decades.

    I do understand about depression. I go to that dark place every now and again when my meds don’t control the migraines. And without going into much detail on a public forum, I also have tremendous back pain and lower abdominal pain a few days monthly due to abnormal female issues that cannot be rectified without having complete hysterectomy. Pain and more that exceeds the norm and interferes with normal living and thinking.

    The crazy thing is that I have found that while pain indeed intensifies the anxiety and depressed mood – the anxiety and depression intensifies the pain! So it’s a stupid vicious cycle!!

    The other is that when I am about to collapse from pain – literally – I don’t “look” sick. Then I have to deal with people who don’t understand and they always make me wonder if they think that I am faking. Just two months ago, I was practicing with the praise band at my church. It’s just me and 5 men. I was about to pass out. My hands were shaking and I could barely play. My mind had turned to a mixture of anxiety and rage and fear. We had been practicing for an hour and a half and had about 45 minutes left. I HAD to leave. Blood was running down my leg into my shoe and the pain was crippling. What was I supposed to say?

    I just looked at the guitarist and said, “I’m not feeling well, I’ve got to leave.”

    “Not feeling well.” What a joke of an understatement.

    I was depressed for two days – worried to death what those guys thought. But you see, that’s the kicker. That’s what anxiety does. It makes you not reason rationally.

    In a few days, I was fine and gave no thought as to what they must have thought.

    For me, the self-worth issues from pain stem from worrying senselessly about what others think about why I may miss work for a couple of days or have to forgo a commitment that I have made. My ailments aren't something that I can readily talk to the general public about. It isn't good form to discuss these things. It doesn't help that I can't talk to anyone about this. But when I STOP focusing my attention on the occasional disappointment that I may cause others, then the anxiety subsides. This irrational fear of worrying about whether of not others think I am lazy, faking, or insincere about the pain is just that – an irrational and stupid fear that comes from the devil.

    It has to be a purposeful act of the mind for me. When I am in intense pain, I have to purposefully meditate on the fact that there MILLIONS of people who suffer far worse than I do and suffer every single day of their lives.

    I have to purposefully remind myself that the woman with the issue of blood in the Bible didn’t get the relief of not suffering most of the month. She bled profusely like I bleed, but hers was EVERYDAY for 12 years. I have to focus on that fact that there are people who suffer crippling migraines for weeks and weeks at a time - not just days.

    I have to purposefully sleep. When the body that is going through pain or illness craves sleep, then sleep! And I have to purposefully meditate on the things that God is going have for me to do when I feel better.

    But the biggest thing that I have to push away from my mind is the fear of what others think of me during these times.

    The Bible speaks a lot about the mind, Gina. I did a personal study on that a few months ago. It was a revelation. I'm still praying for you today.
     
    #2 Scarlett O., Dec 19, 2011
    Last edited: Dec 19, 2011
  3. DiamondLady

    DiamondLady
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    I have fibromyalgia. I NEVER look sick, but there are days the pain is so bad I feel like the scene in Raiders of the Lost Ark when Marion asks Indy where it doesn't hurt and he points to the tip of his nose. Yesterday was one of those days. I've learned that stress causes me to flare and if I can keep the stress level low in my life, that while I have pain, it is manageable. I've learned to live with the manageable pain. My husband helps me in so many ways, I take naps when I'm tired and I've learned to cut back on things I volunteer for as I am OCD and a type A personality so I want things perfect, which causes stress...vicious circle. I'm learning that not everything HAS to be perfect ALL the time...this one has been a hard lesson to learn, but the trade off has been less pain-filled days. I learned it vividly and hard one day when I was in a snit because something I'd planned had been changed (at church). I was walking down the hallway towards our bedroom and God spoke to me and said, "You know, not everything HAS to be YOUR way." The message was received, loud and clear, I've learned to let go and know that God can, and will, work it out. It's been freeing for me.

    Like Scarlett I remember the women in the Bible, the woman with the issue of blood and the woman who walked bent over...I think that's the story that changed my outlook for me. I was studying to teach one day when I reread her story and realized that the only thing she had looked at for so many years was the dirt of the ground and the first thing she saw when she was healed was the face of the Master. It rang a bell with me, that I needed to stop looking at my "disease" (fibromyalgia) and start looking at the Master, that there were lessons in my illness for me to learn, that God allowed it into my life to teach me something.

    I no longer worry about what other people think. If they can not understand then the issue is theirs, not mine. I have given people the spoon analogy (you can find it on the internet) to read...sometimes it helps, other times it doesn't. As for my house, I hired a lovely young lady from our church who is supporting two children on her own to come and clean every couple of weeks and to help me with the harder jobs. She's a delight and we've grown to love the kids like our grandkids....sometimes extra benefits come our way. We've learned to adjust many things in our life, but we've also learned that we have much more time to spend together as a benefit.

    I had uterine cancer three years ago, every day since then is a gift...a precious gift. I will pray for you, Gina.
     
  4. Jim1999

    Jim1999
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    As most of you know, I am the victim of four strokes caused by diabetes that went out of control some 11 or so years ago. I lost my speech, short-term memory and was paralyzed down the right side and my left hand as well. With help from three doctors, a faithful wife and English stubbornness, I have learned to live with certain handicaps.

    Three years to the day, I preached my first sermon in my Kingston church. The church was packed to overflowing....I think they wanted to see a "dead-man" talk! I typed my sermon in full and took it into pulpit so I could read it. Wife testified that in 35 minutes, I never once looked at my notes and preached fairly fluidly. Praise God from Whom all blessings flow.

    I wake up each morning and recite: "This is the day the Lord has made, I WILL be glad and rejoice in it." I have no option,,I will be glad. That is my remedy. I just keep pushing on and take each day as it comes.

    I still have paralyses, speech and memory problems, but manage. I eat 6 small meals each day, all measured to meet 1200 calories a day. My weight and diabetes is under control and my blood pressure is at 140/80. I do take regular medications.

    I can't offer remedies for any of you folk, but can sympathize with you. There are always frustrating days as you can imagine for someone who knew nothing but preaching, teaching and physicality all his life. Again, I simply recite the scripture above,,,"This IS the day the Lord has made.........." and get on with it.

    Cheers, and God bless you all,

    Jim
     
  5. Scarlett O.

    Scarlett O.
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    Thank you, Jim. :applause:
     
  6. DiamondLady

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    AMEN, Jim....amen.
     
  7. Benjamin

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    I would say your pastor is on to something. There is what is known as the "Chronic Pain Cycle" which has been drilled into my head for the last years. It goes like this: Pain -> Muscle guarding -> Poor Mechanics, and then back to Pain -> Muscle guarding -> Poor Mechanics, in a circular pattern that results in a downward spiral. The idea is to break the Chronic Pain Cycle and this is done through movement in regards to inflammation, usually guided exercise, which also releases endorphins that also helps one cope with pain better.

    My 2 cents

    [​IMG]
     
    #7 Benjamin, Dec 19, 2011
    Last edited by a moderator: Dec 19, 2011
  8. Gina B

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    I'm grateful for all these replies. Thank you!

    Jim, after my first series of migraines, I had to work on my speech and regaining strength on one side. It took a couple years to be able to walk, hold cups, etc. without it being noticeable. That is a hard thing to deal with...couldn't write except on a keyboard and couldn't eat in public, often hid even at home so I could eat with my hands since fine motor skills were rough for a time. I am glad to hear you've worked through your even more intense issue and come out on top!

    Scarlett, funny you should bring up that story in the Bible. It's been on my mind a lot. Just a few days ago I finished reading a book called "The First Stone, Diary of Mary Magdalene" by Bodie and Brock Thoene. It's considered fiction, but it's historical fiction with extremely strong historical facts throughout. That's really what triggered me back into prayer even though it seems not to be doing much (maybe it's keeping me alive though?) and got me thinking of the healing miracles in the Bible and how we have a Physician. Now that I'm sitting here thinking about it more, there were plenty of people healed that weren't even following him yet or that had been too physically ill to do things for God's glory, yet they were healed and God cared about them anyhow.

    I'd started getting into the very wrong mindset that maybe, just maybe, things with God might be the same as I see so often in the corporate church. Those who are able to do things...give money, get really involved and such, are regarded as being more needed and those that aren't, well, they don't get noticed much because they aren't seen as able to contribute much so they just get a little pity here and there and not really taken as a serious part of the church...even their ideas don't have as much weight as the ideas of those that can do more. That got me thinking about the Bible and how most people there DID physical stuff. They traveled, taught, cooked, built, and were very involved.

    Guess I needed the reminder that Yeshua came for people equally, didn't suffer more on the cross for one more than the other, no matter their station or ability. So I guess that must mean we each matter equally and are equally loved. Okay, maybe not equally loved since it seems at least one disciple was loved more than the others, but still, matter as much if He'd do the same for each.
     
  9. billwald

    billwald
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    My back has given me a pain for 40 years. Most of the time it is not acute. A shot of booze lets me cut pain pill usage in half.
     

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