Down the Chronic Illness Rabbit Hole

I feel awful about not keeping up with things here on my blog. I decided late last summer that I would be posting at least twice a week and that I would be talking about things that would be helpful and hopeful to other people with chronic illness. Then winter rolled around and I started down the Chronic Illness Rabbit Hole.

You know what I mean, when all the little tricks you have to pull yourself out of a flare or pick yourself up don’t just do not work, they seem to make things worse. The times when you feel like you’ve finally reached the bottom and feel just as awful as you could ever feel, only to wake-up the next day and discover a whole new level horrible. I feel like I’ve been traveling down this particular rabbit hole for months. In reality I skirted the edge for a while, started to fall and clawed my way out a few times only to have the ground give way underneath me again. But as I’m sure anyone who’s been in the hole will agree, it doesn’t matter how far you’ve fallen or for how long, it’s always too long.

Logic would say I should call my doctor. The one who told me it was vitally important to immediately go get my hip x-rayed, then didn’t follow-up for more tests after getting the results for 3 weeks. Which was more than 2 weeks ago and I’m still waiting to find out details about the additional tests. (I’m guessing it’s nothing important – and since it’s gotten better, and worse and better again it really might be inflammation/flare like I tried to tell them.) If you’ve read about my experiences with the new doctor you know I don’t have a great deal of trust in her or her office, this latest…hiccup…fiasco…call it what you will…is not helping.

She hasn’t seemed at all interested in anything to do with my Fibro. She hasn’t really asked about my quality of life or interested in how I’m doing in a total sense. I did fill out a questionnaire at my last visit (granted it was my 2nd with her practice and we have no background or relationship yet) that asked some quality of life and general wellbeing questions, but she never followed-up on them. Her intern didn’t follow-up on them. Why have me go through the exercise of filling out a whole page of questions about ability to walk up and down stairs, fatigue, etc. and then not even look at them?

So why should I call? I’m not having specific or steady inflammation in any particular joint (though there is some wide-spread inflammation), and thankfully I’m not in a ton of pain. I’m not having specific symptoms that she’s found acceptable in the two conversations we’ve had. I just feel like hell. 24 hours a day. No energy. No strength. Just hell.

This isn’t really about her or her office. Maybe it should be. Maybe I should call. But this is more about that nasty little hole you get sucked into when your illness rages on and on and on.

Part of you tries to rage against it. But we know that doesn’t necessarily make things any better — more often than not it makes things worse. Part of you wants to crawl deep inside that hole and hide until you feel better — but not doing anything doesn’t help in the long run either, it just makes it harder to crawl out of the hole. You get up each day and do the best you can to survive and try to figure out how to get out of the hole.

Here I am, not the farthest down I’ve ever been, but definitely further down than I’d like to be. All I can say is that I’m doing the best I can. My focus has to be taking care of the day-to-day things like getting my kids to school  and making sure they’re fed each day and in bed at night. As much as I want to reach out, to be part of the world, sharing with others and helping others going through the same things, I really need to spend my energy (or my spoons if your familiar with the term) on taking care of the absolute our needs and try not to feel too guilty about all the things not getting done.

I’m interested in hearing from you. What do you do when you find yourself going down the Chronic Illness Rabbit Hole? Share your thoughts below in the comments.


Book Review: Laughter Was God’s Idea: Stories about Healing Humor

In the e-book Laughter Was God’s Idea: Stories About Healing Humor by Chaplin Jack Hanson (published by Catch the Spirit of Appalachia, Inc.), Hanson draws on his years of experience as a Hospital Chaplin and minister to demonstrate how humor, and laughter in particular, can have a huge impact on the health and well-being of people. He also gives examples of how laughter is a gift from God supported by scripture and scholarly studies.

Laughter Was God's Idea: Sotries About Healing Humor book Cover

Laughter Was God’s Idea: Stories About Healing Humor by Chaplin Jack Hinson

Chaplin Hanson has thoroughly researched the idea of laughter as it relates to both religion and medicine. At times the book felt like a research paper or a study on the subject and was a little difficult to get through. Clergy, or individuals in the medical field, could find the information very valuable, but the average reader with more of passing interest in the subject may get weighed down in the detail. The book is  filled with antidotes Chaplin Hanson collected over the years. The later part of the book is primarily stories of his experiences in the hospital and as a guest Chaplin. Many of them come from articles he wrote for the hospital’s monthly newsletter and seem to appear in the book just as they did in the newsletter. While I appreciate the fact that he’s sharing words of wisdom from field, it was a little distracting to read references to times or locations that could have been easily edited to be more timeless. The antidotes are amusing, very family friendly and support the points being made.

My biggest criticism is a bit of a pet peeve. Chaplin Hanson switches between formal and informal writing styles, specifically when it comes to quoting people. Nearly everyone quoted in the book speaks so formally they sound more like they’re from 1813 than 2013. I find it difficult to believe that none of these individuals use contractions or any kind of slang. There were times when the language was so formal that it was distracting from the content. I know that this is something I have a problem with, other readers may not think its a big deal. Personally, I think it makes the book feel like it doesn’t know whether it’s supposed to a more formal guide-book for the Clergy or an uplifting collection of stories for the lay person. Overall I enjoyed Laughter Was God’s Idea: Stories about Healing. Chaplin Hanson makes a strong case for the importance of laughter for our health and that God has a sense of humor and wants people to laugh too. His passion for caring not only for patients, but for their families and the doctors and nurses around them is more than obvious, it’s admirable. It’s clear that he’s changed lives and that this book is his way of passing on all that he’s learned. I highly recommend this book to those who are involved in Pastoral Care, Hospital Chaplaincy and those in the medical field.