Sunday, October 21, 2012

Long and Winding

The path of this illness is assuredly not linear. At least not in any comforting way. After 36 hrs of feeling less acutely ill - more oxygenated on beginning the steroids - yesterday I actually felt horrendous once again.

To its credit, the prednisone prevents the inspirational stridor, more or less, during the day - that, plus hydration, plus inertia, plus the tiniest vitamins I can stand to take, plus (theoretical ingestion of) food. At night, however, all bets are off.

I won't go into the minutiae, and I will optimistically suggest that there seems to have been a notable change in the last 8 hours in terms of the quantity and viscosity of mucous surrounding my larynx -  (again, can't afford to read too much into anything) - but yesterday evening and last night were incredibly difficult.

Being woken from sleep in the grip of suffocation is, quite simply, a horror. When I think of babies and young children going through this, well, I have no words.

No question, this illness is presenting more extremely in me than it does in many (though not all) adults. But I'm truly amazed by how sick I feel.

When all of this is over, I do intend to write a post for any adult sufferer who finds him- or herself desperate from sickness and afraid in the middle of the night (or day).

Right now, all I can do is talk it through in the easier moments.

I am phenomenally tired. After a stridor fit, which compels me to jump up and disjointedly walk until it subsides, I'm almost too exhausted to find my way back to bed. In truth, the stridor seems to happen as I wake from sleep even in the day, but I have to sleep occasionally. I imagine that, the reason I shake after these attacks is a combo of fear, lack of oxygen and adrenaline, but I've only ever felt this way once before - immediately after an unmedicated delivery of my child (which was not without complications).  After the fit, it's all I can do to keep myself awake, because I'm fucking afraid. To mitigate things, I do manage to get a couple of hours of rest in the day (over a few naps).

Scott talks me through it in the moment. So does Hilary. The two of them have been rallying me through the acute phase, giving me confidence. In times like this, that confidence is gold. Family and friends send cards, email and call on a regular basis to offer additional support. I am SO grateful.

I won't lie, my spirits have been very low. By comparison, the broken foot incident of 2010 was a psychological piece of cake. Exhaustion is unkind. Inertia is dulling. I have little mental energy to do anything other than shore myself up for the next challenge.  Scott forced me to walk up the block yesterday to get a coffee. Happy note to reader: Black coffee is a bronchostimulator and its tarry acridness can help to dislodge mucous. I have spent quite a bit of time on the back porch lately, inhaling cold air, which weirdly seems to help. Walking was like sitting 2.0. It was stupidly tiring, but I did feel more human than I have in a while. Today, he tells me we're going out again - this time down the block. Since we live in hipsterville Toronto, there's espresso 5 minutes in every direction.

At any rate, these TMI sickie posts are partly to leave me with a chronicle of the experience (this is the way I chart my life), partly to keep you all posted (as you've been so wonderful with emails and comments), partly to continue in the vane of the PSA, and partly to occupy my time.

Right now, I do feel optimistic. I know I am getting better. I know that this will leave me with a new perspective on my world, and myself. The only way out is through. So onward.

40 comments:

  1. What you're going through sounds horrifying -- it must have been so discouraging to feel a lapse back into the disease's grip after feeling the symptoms abate for a while with the prednisone. I'm sending you buckets of sympathy and also sincere admiration for the way you're weathering this and preserving optimism -- which is going to pay off soon, I know. Meanwhile, so impressed with how well you write, even in your exhaustion.

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    1. Thank you Frances. Writing keeps me grounded which, right now, is a freakin' boon. It normalizes something horrible - at least for a little while...

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  2. Having suffered with the stridor, and still suffering with cough issues, one thing that seems to help is putting pressure on your windpipe with a fingertip. For some reason it seems to interrupt the loop your body gets into with the coughing. Do it right above the collarbone.
    Agree, waking up choking is the pits.
    I think all the coughing creates a weak spot in your windpipe and it now collapses when you start coughing.
    Healing to you!

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    1. Mel: I've noticed this too! Thank you for sharing your experience. xo

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  3. I also have a concoction that I drink....when I remember it I'll send it to you. :-)
    I just remembered that I massage my throat rather firmly with my fingertips when the coughing fit starts. Seems to help it not collapse.

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  4. HUGS - I'm so sorry you're dealing with this and so glad you're coming through it. And it will end. Hang in there.

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  5. This sounds absolutely terrifying! Several years ago, I remember getting really really sick to the point where I had absolutely no energy to do anything but lay in bed. I collapsed in the bathroom at one point and would have been unable to get up or do anything if my dad had not heard me and come and carried me back to bed. AWFUL! So I can only imagine how you are feeling and what you are going through! But if there's a fighter out there that can live through an illness like this, its you! My best energetic thoughts and get wells go out to you. We're all here for you! Get well soon girl!

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    1. Sunni, thank you for this comment. It's good to know that others get sick, and recover. Even though it's really scary now, I will get better, just like you. And I so appreciate your kind words. Sometimes I don't feel like such a fighter.

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  6. Oh, friend. I'm so sorry to hear that you are still struggling so much with this illness. What you describe sounds terrifying and miserable. For what it's worth, I'm sending you lots of sympathy and get well vibes.

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    1. Ray: Thank you! I'm taking your positive vibes!

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  7. So sorry this thing still has such a grip on you. One day at a time. You have a lot of support behind you - hope that helps a little!

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    1. It helps tremendously Cactus. Thank you for commenting.

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  8. Sigh....so sorry to hear you're struggling with this illness. You are such a trooper and an inspiration. Your candidness and honesty is appreciated. Some situations just suck and it needs to be set. I'm hoping and praying for a 180 for you! Hang in there Lady!!!

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    1. Well, you know honesty is my thing :-) Thanks Victoria.

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  9. I've not had pertussis but I am an asthmatic. When I would have acute attacks, my dad especially, would sit beside me and rub my back while we waited for medication to take hold. Somehow, it helped me calm down and not panic because of the lack of air and suffocating feeling. He also didn't crowd me when he was rubbing slowly up and down my ribcage. Circling, slow and steady calming motion.

    I don't know if anyone is doing this for you or if it will help but there you go. I hope this subsides quickly and you heal faster than fast. Take care.

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    1. That's a great story. After an attack, I feel the need to hold Scott's hand (and I'm not a hand-holdy person, esp. in the middle of the night). It just helps me to regain my equilibrium. To stop panicking. You're so right. Wishing you open and happy lungs, Miriam.

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  10. Kristin, Ugh, I was hoping there'd be some good news and am very sorry to hear you're still suffering and experiencing horrifying feelings of suffocation. I am sending hugs and love. xoxo

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    1. Thanks Susan. I think the scenario just has to progress, and it will. Your hugs and love are so appreciated.xo

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  11. I can only echo what has already been said, but hopefully sending healthy thoughts will somehow help you feel better. I'm so sorry you're still going through this! Julia

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    1. Julia: Thank you! These thoughts help so much. The power of support is incredible.

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  12. I am still thinking of you, like everyone else!

    Your posts about it are (weirdly) fascinating - and the thing that struck me is when you reminded us of how terrifying it would be for babies and children.

    I'm sorry it's so upsetting (and uncomfortable) for you, too. Though each time you post something, you're a little closer to recovery :-)

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  13. Thank you Kat. I think of babies and children near frequently, while this is happening. I can't believe they go through this with no words, no experience of the world. I only hope that's better in some way, though I can't see how it would be.

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  14. A resounding yes! for the mini-walks to coffee, the fresh air, the windpipe pressure and the physical reassurance of a loved one. Having a plan that gives some semblance of control is a big help in overcoming the terror I think. Good wishes on continuing to find the path through this nasty maze. I had no idea that pertussis could hit adults like this. Elle

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    1. Elle: Neither did I. I'd never given pertussis more than a passing thought. And then I thought of it as something that kids got in the 50s. Thanks for your good wishes.

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  15. Kristin, you are such a joyful (and joy-giving) blogger; I hate to hear how you've been suffering.

    I can't wait to have you back healthy -- as I'm sure you can't either! Thinking of you and sending you good vibes and lots of deep, relaxed, breathing.

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    1. Peter: What a lovely comment. Thank you so much for your words. I think everyone's good vibes must be helping. I did have a less scary night last night. xo

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  16. Kristin, it is encouraging that you went out for a walk and also, to read your detailed experience with pertussis. Your honesty is a form of strength and don't worry about writing a TMO sickie post. If just leaving a comment cheers you a little bit, then we can do that. Thinking of you and hoping to tug you along to better health soon.

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    1. Thanks R! I did actually sleep - if fitfully - better last night (and with less scariness) than I have in a long time. It makes me optimistic. As do these lovely comments.

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  17. Hang in there---I'm glad you're over the worst, even if it is two steps forward and one (or one and a half) back. It sounds horrifying (and way, way worse than Swine Flu was, by the way.)

    Makes me want to run out and get a booster shot right away...

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    1. Just do it, T. Run out and get the booster. Unless you don't need it, of course. Let your doctor advise you.

      BTW, I totally forgot about swine flu until this moment.

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  18. I hope you are feeling well soon!

    Pertussis was going round through the Australian winter too; luckily no one in my family caught it, although my mum spent the better part of a month in hospital over winter with breathing problems due to fluid on her lungs among other things. When she came out of hospital for the second time she was gaunt and too exhausted to look after herself; we brought her to stay at our place so we could make sure she was eating 3 varied, healthy meals a day and sleeping / resting enough. Interestingly this did seem to make a real, discernible difference to her health - she was seeing her GP and specialists a couple of times a week and they commented on her recovery and asked what she was doing :-). Oh, and even though you feel terrible, going for a walk is supposed to be great for your lungs too - only as much as you can manage though, of course!

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  19. Hope you are feeling really well soon!

    Pertussis was going round in our winter too (Sydney), and I felt very lucky no one in my family caught it - although my mum ended up spending the better part of a month in and out of hospital with fluid on the lungs and dreadful breathing problems anyway (from what is probably lupus, except that lupus is very hard to diagnose). In hospital her bed was cranked up at about 30 - 45 degrees to help her breathing - and I remember doing this with books under the mattress for my babies when they had a cold - so if you can prop something under the top end of your mattress to angle your body a little that might make a big difference at night. The other thing is that when you're sick like this you need the people around you are able to look after you - when my mum was discharged from hospital the first time and went to her own home, her health got worse again till 10 days later she was being taken back to hospital in an ambulance - but when she was discharged the second time to our place where we could feed her 3 good meals a day and let her rest and sleep as much as she needed, her health really improved. Good luck!

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    1. Gabrielle: I sleep in the bed in a highly engineered fashion with about 10 different sized pillows angling me in certain ways. It's not very comfortable - but if I don't choke, hey, I'm not complaining. My friends are really rallying around me, as is my husband (though, in truth, he's very tired at this point, doing all the work and barely sleeping). My family all lives in the States so I can't rely on them to come over and bring meals etc. Of course, they would if they could and my mother wants to come but I really hope I'm going to get better very soon so that won't be necessary.

      Two friends brought me things on the weekend. Hilary is coming back with more healthy, prepared meals (the last batch really helped us because it was a way for Scott and M to eat without going to extra effort). Eating for me right now is a bit complicated, but I have benefited from many of the things she has brought.

      Thanks for your comment. xo

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  20. This stinks! You're sleeping with your head elevated, right, which might help a tad? Can you get more steroids?

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    1. Yes, sleeping on a ramp of pillows. It's ridiculous :-) I don't think I'll need more steroids. I'm on a pretty long course - a month over all. So they think that should take me through the worst of the throat issues.

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  21. Kristin,
    I hope you continue to get better. I know the back and forth is very frustrating. I'm happy Scott is getting you out a little. This type of thing always makes me much more simpathetic to those that are chronically ill. My dad has been going through some health problems and I have to say I've been less than patient with him. You remind me to make renewed efforts to support him. Thanks for that reminder.

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    1. Oh, Victoria, I know what you mean. I have so much sympathy now for the challenges of the chronically ill. I mean, I've always imagined that it would be horrible to manage long-standing illness, but seeing how even a short stint of feeling intensely ill can take its toll, I have a whole new respect. I really hope to take that away with me and never forget it. xo

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  22. Hey Kristin, I hope you're all right (and getting better). I'm used to checking in on you (almost) daily through your posts. Let us know how you're faring!

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    1. Uta: Thank you for this comment. I've just posted an update today. Apologies for being all chatty and then disappearing. I was hoping to write next about something fun and creative rather than sickness update. But I am feeling slowly better, as that post describes. Thank you for all of your good health vibes xoxo

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