Friday, November 9, 2012

Deep Thoughts

You know that non-linear path of healing. Well, I continue on it's winding journey. People, I'm so tired. I'm so anxious. I feel so crappy. I've opted to take a long weekend (today as a sick day, Monday is a holiday) to try and establish a new equilibrium, one that moves the overall health barometer a few degrees more firmly into the right direction.

Since I'm awake pretty well constantly, I actually have a near-compulsive amount to share with you all on a wide variety of topics: knitting, sewing, body image, lingerie shop along follow ups (trust me, you're gonna love that post), food, holiday gift purchasing... The list goes on.

No doubt, it's a good sign that I have lots to say. It's a good sign that I've been able to go to work (even if I am a washed-up version of my work-self lately). It's a good sign that I've been off the prednisone for almost a week and I'm breathing (though not in the regular way). It's a good sign that I have picked up the pace on my crafting. It's a good sign that I can eat a wider variety of foods.

And yet, if on a scale of 1-10, regular-self healthy is a 10, I hover between a 4 and a 6 at any given time. Sure, I do hit an 8 occasionally, just as infrequently as I descend to a 3. Since I was at a 2 for a good month - I mean a terrible month - I realize that this is statistically relevant improvement and a move in the right direction. But I can barely stand this. It makes me want to flee from myself and there's nowhere to go.

The most prominent of the remaining issues are these:
  • My throat hurts ALL the time. Especially where the ulcers line on the left-side. While this seemed to be getting better, yesterday it all came back hard and hurty. To feel like things are moving backwards - even though, in truth, I have no idea what's happening, the path of healing is not linear (she says, like a mantra) - is distressing.
  • My throat is swollen. I haven't had stridor in 2 weeks, so thankfully, but I have had a couple of coughing episodes in the past few days that have moved me unpleasantly into its domain. Since I'm not on the prednisone, I worry. While I was on the prednisone, I worried. (That shit is serious and likely the cause of the ulcers and associated throat swelling.) My throat seems to be swollen no matter what. It's a matter of degrees and under what circumstances. Of course, it's much better to be my own self, managing the swelling and moving away from ulcers. But it's scary. It's like I am in constant dialogue with my throat. I sometimes feel that it's a mentally-unstable Hollywood starlet from the 50s and I'm a director, desperately trying to make that studio film. I've got to get this throat into rehab people. And method classes! :-)
  • The laryngeal mucous issue continues. Sure, it's better overall. Occasionally, it even goes away for a couple of hours. But it seems always to return, after food, and then - since the mucous is all but immovable from its perch in my swollen throat - I have to worry about it inducing coughing (which increases swelling) or blockages (requiring scary coughing to dislodge it just enough to restore breathing).
  • OMG I need to SLEEP. People, I can't drink booze. I can't eat anything remotely enjoyable. It hurts to talk. Singing is off the table (something I love to do that calms me down). The only mood-alteration option left, never mind that its health-restoring, is fucking sleep. Is it wrong to want to forget about this for a few hours at a time?? I have fantasies (hallucinations?) about doctors telling me that they can put me into a totally safe, medical coma for a week (like a spa! in a beautiful room in a beautiful locale - not that I'd know the difference) and when I wake (in the beautiful room in the beautiful locale) I'll be totally healthy and ready to go sit under an umbrella at terrific restaurant and drink an entire bottle of wine with a steak frites followed by a vat of chocolate mousse. No vegetables in sight!
  • I'm almost disinclined to mention anxiety in its own bullet. You can certainly read the anxiety that's woven into every sentence. For some, this would be debilitating, I imagine, but I am no stranger to anxiety. I have coping skills and, when it all gets to be too much, ativan. (Note to reader: You must not abuse this stuff. It's very addictive. I won't take it 2 days in a row. I'm on the lowest dose available and its primary benefit is to induce sleep... I am all for mood alteration, I'm a hedonist!, but not with controlled pharmaceuticals.)
I won't bother to detail the other things: blood sugar is weird so I shake sometimes or feel light-headed, eating challenges (what will work today?), ears that have been plugged for 2 months, the terrible mood that hits me sometimes which I cannot blame on prednisone any more but I sure can blame on feeling like shit, energy spikes and valleys.

Man, I really do sound like a mess!

Really, though, you should have seen me 3 weeks ago. I'm like a normal person by comparison. :-)

I recently learned that a former colleague contracted pertussis four years ago after an operation. Her coughing was so extreme that she had to be reoperated on to correct damage caused by it. She said it was the worst illness she's ever experienced and that she was beyond sick for 7 months.

When I heard this horrid story, part of me was so glad to know someone else who could relate. Though her experience was very different than mine (and much more serious!), here she is, 4 years later, alive and healthy. The other part of me has to believe that I will feel better more quickly than she. By her own admission, my colleague began her illness in a less hardy state.

I find it ironic that Public Health has only just started delivering flyers, and booking segments on the news, to warn people between 20 and 65 about an emerging potential health crisis: pertussis after lapsed vaccination. Those people should put me on a fucking poster. Especially now that I'm so attractively thin :-)

Yeah, I'm dramatic, but I come by it honestly. I have been this way my entire life. I bring it to every experience, minor or extreme. It infiltrates my every mode of expression. No doubt, you know this about me by now. People, for as long as I can remember, have told me I should have a television show. Or a role on Broadway. I reiterate this because I want you to know that I recognize there are SO many people struggling valiantly with serious, chronic or life-threatening illness in the most courageous and reserved fashion.

I am neither courageous nor reserved. I'm a freaked out wuss who talks about everything extrovertedly. For what it's worth, I sincerely wish that people struggling with serious, chronic or life-threatening illness would talk or write about it to their heart's content. I pray for people who struggle as such, if they have little else to comfort them at times, please speak.

I say to anyone who may fall into that camp: Your voice matters. Your experience is valuable, not only to you, but to everyone with whom you communicate. Illness is part of the fabric of human existence. You are not isolated, you are a front-line participant. We, all of us, exist in a continuum from birth to death and beyond. Speak loudly because you are a bellwether. Speak loudly because you shouldn't go through any life experience alone. Speak loudly because squeaky wheels get the grease. And everybody's wheels squeak eventually.

41 comments:

  1. I'm so sorry! I hope you feel better soon - a few years ago (I can't recall how many, but it was pre-kids, so at least six) I had what the doctor suspected was a mild case of pertussis. I only had the cough by the time I could get to see her - with stridor, gagging and vomiting. It was six months or so before I felt normal. And to this day, every cold I get comes with an extra week or two of horrible coughing.

    It will get better, and you will be yourself again.

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    1. Di, thank you for sharing your experience. I really appreciate hearing from others who have gone through this because it makes me feel hopeful about the return of health - and less alone! xo

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  2. For the throat ulcers/general soreness, you could see if your doctor could write you a script for Tantum (sorry, I can't remember the 'proper' name). (I can get it filled pretty easily at Shopper's so it's not a rare item).
    It's a mouth/throat rinse that not only heals ulcerations, but kind of numbs the area a bit too. Not enough to leave you drooling on yourself!
    It's really effective. I find it heals up my mouth ulcers in 4 or 5 days (instead of the 2+ weeks it takes if I do nothing).

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    1. I have it but I don't find it works. It makes my whole mouth go numb in a way that freaks me out. Also, the ulcers are down my throat farther than the rinse can actually hit. But thanks for that suggestion!

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    2. Oh, that's too bad - I find it numbs me less than a Cepacol/Strepsil lozenge does.
      But you may find a use for it yet!I got a sore on my arm, and found that applying Tantum to it worked great! Sped up the healing and no more itching.
      (I just realized that I sound like a bit of a Tantum freak. I find that a lot of doctors don't know about it, and it can make such a difference to someone's quality of life if they can use their mouth without agony. Thanks for letting me ramble!)

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    3. Oh, that's crazy cross-marketing :-)

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  3. Kristin,
    You can go on posting about being sick as much as you want. I'm sure it is useful in speeding your recovery (at least a little). That said, I'm so sorry for your continued frustration and discomfort. Take it easy this weekend and get some crafting done. That is the best therapy, IMHO.

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    1. xo. I agree that crafting is, in some ways, the best medicine. It takes my brain into another place (it IS mood altering, I suppose) and I can put my focus on something other than the way my body feels. My energy is pretty low today, but I intend to do some knitting later on.

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  4. I'm sorry to hear you're still not feeling great. I don't have any advice to suggest. I hope you manage to get some crafting done but I know sometimes I can't concentrate on anything if I'm ill. Oh dear - get well soon!

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    1. Knitting has been very helpful this week. Takes my mind off things... xo

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  5. Huh. I had a LOT of anxiety a week or two after my steroid treatment ceased. A LOT a lot. At the time, I thought it was just because I wasn't getting better/back to normal fast enough, but maybe there is a chemical/hormonal connection? I thoroughly relate to everything you said in this post! It's frustrating and scary to finally feel mostly better (an 8!) and then backslide within hours or overnight. Hang in there!

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    1. OK, it's so good to know that this may be some fall-out from those meds. xoxo

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  6. I don't know if this is factual, or just me, but if I have anything regarding stuffy nose, mucus-y stuff I have to avoid everything with dairy in it. For some reason it just makes the mucus thicker and more horrid to deal with. And have you tried one of those saline rinse things? I've also used those packets to gargle with for sore throat--taste is bad, but the relief is good without that horrible over-drying feel you can get from cough drops.

    Hopefully, the path to healing will become a little less tangled and a bit more linear soon!

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    1. Oh, I know. Dairy is a thing of the past - and it is, generally, my food-group of choice. How I miss it! (But not worth the misery right now.)

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  7. All I can say is, Wow! I'm so impressed by your ability to write such a thought-provoking post with everything you are still dealing with! Sending more healthy vibes your way!

    BTW, your last squeaky wheel comment really hits home for me. I was brought up to be anything but a squeaky wheel about EVERYTHING. You know, get along, don't complain, don't be argumentative, don't stand up for yourself, just get along! Yeah, at 45, I'm still working on undoing all that conditioning, though I still find I can regress back to my passive old self all too easily. Anyway, that was a little off-topic, but just came to mind. Julia

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    1. Julia: Thank you! Alas, I have always been a squeaky wheel, which was a bit of torment for my parents, I'm sure :-)

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  8. I can't speak to the pertussis, having not experienced it, but the anxiety alone can be totally debilitating. That I do know about. Just hold onto the fact that you are making progress towards full health, albeit in a long and rather obtuse fashion. Take it easy this weekend. Enjoy the break and be kind to yourself.

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    1. Thanks Evie xo. I'm a bit more positive today. That seems to be how it goes.

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  9. I must say that I look forward to your blog entries every day. Although, I am not experiencing Pertussis, I definitely have had the month from hell, myself. First, I have Fibromyalgia. Second, I fell during a dance rehearsal and fractured my right wrist in about 7 places, which required surgery (titanium plate, screws, and pins). Third, I caught a cold or flu bug last week, and I am pretty miserable blowing my nose and coughing up phlegm. So. it is actually nice to know that I can commiserate with someone right now. Keep those deep thoughts coming, and get better!

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    1. Elizabeth: Thank you for your comment! I can't imagine the wrist injury. Losing the use of your wrist for an extended period is a SERIOUS misery. Are you right handed?

      Also Fibromyalgia, I know, can be so debilitating when it's in full swing. I hope it's giving you a bit of a break in light of the other things you are managing right now.

      I'm happy you can commiserate! It's all about communicating. And I wish you well xo

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    2. Yes, Kristin, I am technically right-handed (due to Catholic School). However, I do quite well with my left, and I can even write. The worst thing is that I will have to endure a second surgery on Thu 11/15, to remove one of the pins. I will also have to wait awhile to get on with my knitting projects. The good news is that the cold is pretty much gone. Thanks for your thoughts, and I wish you well also! xo

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    3. Well, thank goodness for little mercies. Not that we should run out and get a gift basket for the nuns :-) I will think of you on Thursday, giving you lots of good vibes for a very easy surgery. At least the cold is gone! I am also going to give you good patience vibes. Keeping yourself from knitting too soon is likely going to take all of your resistance!

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  10. I've had this comment window open all afternoon and I start a thought and I lose it. I think I'm going a little crazy.

    A. Health is like that, non-linear. I'm glad you've got a 4 day weekend to rest up. If you are still feeling a 4-6 most times, a 4 day work week seems appropriate.

    B. People get through all kinds of crap just because they have to. You have managed on day at a time, one cough at a time and one breath at a time. High five for the long journey back to good health.

    C. I've said it before, it's your blog, you can write what you want. I almost turned into a Leslie Gore song there.

    D. Yay weekend!

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    1. You are so right - people get through all kinds of crap cuz they have to. I'm going to meditate on this.

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  11. I can't imagine it. Pertussis sounds like hell. I'm just starting to feel normal after a month of Bronchitis, which was a new experience for me. Get better soon.

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    1. M: I've read about your challenge - so sorry to hear you have also been sick. A month of bronchitis is pretty extreme. And that prednisone is something, yes?

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  12. I so enjoy your writing - and of course, really sorry you are suffering so much. I feel like I am right there with you, the way you describe your (NON-LINEAR) healing process. You ARE getting better. That much is clear. It's a tough path. Enjoy your long weekend, keep up the crafting and keep writing!

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    1. Thank you Robin! Non-linear is the watchword of the season :-) I'm glad you can see a progression! Sometimes, in the midst of it, you lose the forest for the trees.

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  13. So sorry you're still struggling with this (although it's perhaps not surprising you've had a setback given that you might have pushed a wee tiny bit this last week. . . )
    Interesting reading this as I have organized my 1st-year reading list this term around medicine/illness narratives. Writing it from the inside is important, not just for the healing but for letting the rest of us (including the med. professionals) know what it's like.

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    1. That is so bizarre. And I know it seems I did a lot last week, but it's still like nothing compared to my normal activity level. Sometimes I just have to move or I think misery will overwhelm me.

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  14. Jayzuzzz! I hope you are healing inside and out and back to yourself soon xx

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  15. Oh my dear, I'm soooooooo sorry to know you're struggling with illness.
    As you know I've been away of blogland and coming here to know you're feeling bad just makes me so sad.
    I hope you're feeling better and get well soon.
    Take care.
    Love
    xoxo

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  16. Feel better soon!! :) You are on your way up. Make sure you focus on all the gains you've made :)

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    1. I know - I swear I do that most of the time. Maybe, instead of complaining in blog posts I should focus more on the healing. :-)

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  17. Oh god, I know I'm late, but I'm so sorry. Health issues suck and I mean that literally. They suck your time, your energy and your joy. Keep taking small steps forward and keep writing!!

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  18. Honey, you've been kind of preoccupied with some serious situations of your own. I'm taking a page from your book (pun intended) and talking it through. I think it's my sanest choice. I'm thinking of you too xo

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  19. Sounds super shitty. I have been struggling with Sarcoidosis the last year and on the predisolone, myself, so know exactly what you mean about the insommnia/anxiety and how all consuming it can sometimes be.

    It WILL get better (has already!) and you need to take faith in that, if nothing else. It sounds flakey, but I really can't stress how important it is to keep up positive 'mind speak' on the whole thing.

    As a Canadian living in the UK I frequently scoff at the 'head in the sand/pull your socks up' mentality that they have here...but there is definitely something to be said for trying to stay positive and give yourself positive encouragement and reinforcement.

    I know I have found that the times I have been the most negative/anxious about my condition the worse I have felt. Once I realised what I was doing and actively started to tell myself 'I am ok' and will get better (am not dying- it is not the end of the world, etc)...well...I started to feel better.

    Maybe all coincidence or psychosomatic- but studies show that placebos can have an enormous effect on pain.

    Anyway. Long babble.

    You aren't alone. You will get better. Hang in there.
    L

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    1. I've heard about sarcoidosis and I am SOOO sorry you are going through that. OMG, that totally sucks (to completely understate the situation). That prednisone - while entirely necessary for you, as I know it was for me - is fucking hard. It was like wakefulness pervaded everything. And not in a pleasant way.

      Positive mind speak is tremendously important, as is getting comments like these where we can communicate and share our experiences. You are entirely right about the negative thoughts leading to worsened conditions but sometimes it's so hard to stop that loop. Especially if you're a ruminator like me.

      I'm glad that the English have given you a new skill :-)

      Have you tried very supported yoga? (I recommend the Iyengar method with a really good senior teacher.) The UK has some of the best Iyengar in the world. If you're in London, you'd have your pick of really good therapeutic yoga teachers.

      You hang in there too. And Jeez, knit something easy! :-)

      PS: Had weird dream about finding 2 lone skeins of your Habu yarn in the South Pacific.

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  20. He he! That is hilarious! At least you were sleeping...and finding fun things in warm places. What a great dream!

    ;-D

    It is funny, the only place I had heard of sarcoidosis before I got it was on House! I actually laughed when the specialist brought it up. Oop.

    I have generally avoided Yoga after a few tries when i was younger. I hyper-extend and found I was getting all sorts of issues with all the forward bends. I did go to Pilates the other day, which was good...but maybe a bit too intense. Have to work up to exercise a bit easier, I think. Am feeling a little dodgy again.

    Not sure if the English have taught me anything GOOD, though. Their version is more a denial of emotion than a recognition of positive mindspeak. All that repressed feeling then bursts out in negative ways... If you have ever been to London you'll know what I mean!! Eeesh!

    Anyway...off to check out your Bettie!

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