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.


7 thoughts on “Down the Chronic Illness Rabbit Hole

  1. We can only do what we can. Sometimes the rabbit hole get mighty slippery and getting out is a problem. I have no answers except I’m too damned ornery to let the b****tards win. It takes its toll on you all the time but I have no other way to ‘fight it’. In fact fighting gets me nowhere. I’m trying ‘acceptance’ and pulling all the pain, angst and everything into a giant helium balloon and letting it go. Can’t tell you how effective it is yet.
    Blessings Susan x

    • I waffle between acceptance and fight most of the time actually. Sometimes I sink in to stupidity when I do something I obviously shouyldn’t. The day-to-day ups and downs and bad days I’ve come to expect and can handle. It’s these extended bad stretches, the long term flares, that really get to me.

      • I can really understand at present. For two weeks I wake with this feeling that white hot pincers are shredding my neck, shoulder and arms, Over and over. In between times (after I’m reduced to semi consciousness, they just ache, hideously. Nothing really works. Heat packs burn like hell but must ese it enough for my mind to run away… don’t know how else to describe it. Doctor wont answer calls (the Lyme guy) and my GO wont deal with anything related to Lyme… good place to get stuck. That rabbit holes looks inviting at times.
        Sorry, his wasn’t meant as a pity me response. I do hope things turn around for you soon.
        Blessings Susan x

  2. Just hang in there. We are all in the same boat and you’re not alone. It’s so frustrating! The best thing you can do is accept where you are and just know that maybe tomorrow will be better. Fighting against it makes it worse, even though that is our natural reaction. Sending prayers for you.

    • Thanks! I’ve had a few more of the tangible/measurable/quantifiable symptoms that the my doctor seems to like over the last few days. So I have a feeling I’m going to start doing better in the near future or I’m going to get a 3rd meeting with my doctor. Either way all I can do is go with the flow.

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