Meditations on those with chronic illnesses

I have just a couple of thoughts today that I offer to the reader not for sympathy but, rather, for scientific observation and reflection.
I’ve been dealing with a case of bronchitis that became pneumonia. I tried to teach through it, do grant reviews, finish a book chapter, etc. but was finally ordered by my pulmonologist to recuperative bedrest at home for approximately four weeks.
When told I’d be confined to bed for a month, I thought that it would be great – that I’d get two papers and a grant renewal done and still have plenty of time for blog posts I’ve been wanting to get to, finish writing a couple of songs to take to the studio, get all the tax documents together, maybe learn a little CSS and webpage design and get around to a hosted personal website for the domain I’ve had for a year, etc.
After 10 days now, I’ve really done nothing more than read for short periods and sleep for long periods, with energy only for one blog post, a paragraph or two on a paper, and arranging for my classes to be taught. Twitter works, though, as 140 characters is about the limit. To be really sick – to the point of not being able to concentrate for more than 10 min – is a foreign concept. And I’m not actually *really* sick like other folks with chronic illnesses, cancer, etc.
To be unable to make your body do what you want it to is frustrating enough, especially when your little girl wants to go play in an infrequent snowfall of significance.
But I find it remarkable that an illness having nothing to do with the CNS can wreak such havoc on cognition, concentration, and motivation.
Some people might think, “wow, you’ve had 10 days to do *anything* you want,” but it blows me away that 10 days have passed and I’ve done jack shit.
So today, my heart goes out to all of those who suffer with chronic illnesses every day. You have my admiration and respect.

27 thoughts on “Meditations on those with chronic illnesses

  1. Best wishes for a speedy recovery. Went through pneumonia myself about 10yrs ago. It was awful, & it literally took months to feel I was back to full strength. Hope it’s much less than that for you.

  2. Pneumonia really really sucks. I missed six weeks of school in the eighth grade due to pneumonia. This in the early 1970s before VCRs, so I could not do what we do in our house when sick (play lots of DVDs). I tried watching whatever silly movies came on, and fell asleep. Plus I read my little sister’s books because I could not focus my eyes on little print or anything very complicated The fifth week was Spring Break, and I had enough strength to work on my homework, which I continued during the sixth week.
    Yes, I understand how yucky it is to be very sick. Fortunately I have only ever been sick only for a week at at time at the most. The best sick-leave I had was when I broke my ankle and had to stay home while the walking cast dried. I was mostly immobile, but my head was clear enough I managed to read an entire 500 page book.
    Rest and get well. Get some DVDs of an amusing television series with lots of episodes on one disk so you don’t have to get up and change them. The last time I was sick I watched the science fiction Farscape series (it has muppets!).

  3. Try not to attempt what you’re too weak to do, Abel, and rest. I doubt the doctor mean for you to work in bed, I’m sure he meant mental rest as well. That said, do as you’re freaking told and freaking chill!
    Still holding a good thought for you, my friend.

  4. I appreciate the point you’re making. This was a great and thoughtful post, and as a long-time lurker with chronic illness, I just wanted to thank you for it. Thank you for your thoughtful blogging–I’ve long enjoyed it. I wish you all the best in recovery and speedy health.
    I am going to mention something now only because my memory is poor, not to put you on the spot when you’re having a rough time. I don’t expect an answer or that you have an obligation to read this or respond because a stranger said something on the internet. I ask because I believe navigating these points is useful for people when they have a personal shift in perspective and experience some of the realities of navigating chronic illness and disability.
    When you are feeling up to it and are well, you might consider parsing–for yourself and not necessarily publicly–what you mean by ‘really sick.’ What is the ‘etc’ after ‘cancer’? Or what set of circumstances are you thinking of when you think ‘people with cancer’ as exemplars of ‘people who are really sick’? What does ‘really sick’ mean as a category within ‘chronic illness’? Does it imply life-threatening, or permanent, or terminal, or something that causes long-term impairment? What kinds of impairment?
    As I said, I’m not looking for an answer: I am posing these questions for you to consider when you’re recovered, because even if you explored similar questions before you became ill, your answers may have changed now. I know mine changed when I shifted from when I was ‘just’ depressed, to ‘epilepsy with interictal depression’, and they changed again when the epilepsy became treatment-resistant.

  5. The reason your body makes you feel so crappy is so that you don’t try and do anything else. That is the whole point. Physiology is (trying to) shift metabolic resources to fighting the illness. It can only do that if you let it do so by not trying to consume those resources doing other things.
    Most of the immune system runs on glucose and does so via glycolysis (so it can function in anaerobic regions). That is what physiology is trying to do during sepsis when it invokes cachexia, provide enough glucose to run the immune system at 11; so it turns muscles into amino acids and then turns those amino acids into glucose (in the liver), and then turns that glucose into lactate (to make ATP via glycolysis) and then turns that lactate into fat (to get rid of it without taxing the liver).
    What you really need is a good dose of nitric oxide. That raises the ATP level (via sGC) and accelerates resolution of infections (by increasing autophagy).
    Your body will let you do things if you push it, but exceeding your limits now is to invite permanant damage, perhaps even CFS. I see CFS as being due to increasing ATP demand in a high NO environment (this is complicated and tricky to explain, it isn’t as simple as I am suggesting) which causes mitochondrial failure, that pushes the mitochondria potential high and causes permanent low NO. For more on low NO and CFS see this:
    (not my usual blog).
    How you feel now is the way that people with CFS feel all the time (yes, the brain fog is that bad). You feel “ok” at rest, but have zero excess reserves. If you don’t recover within a few weeks, send me an email and we can discuss how to fix it.

  6. Abel, I’d be very interested to see ewe-man’s comment elevated to its own post, for you (if you’re up to it!) and your readers to weigh in on.
    Some things really do have to be experienced to be understood. Poverty, chronic illness, depression — things that make one’s daily experience so different that it might as well be taking place on another planet.

  7. Funny, it doesn’t even have to be anything really serious. I just, after six weeks, figured out a health issue that was becoming chronic. It sounds awfully silly. My tongue had begun to swell intermittently and sting and burn almost like a banged funny bone.
    Big deal. But it interfered with sleeping, so I got tired, and crabby, and didn’t keep up with the kids’ schoolwork or the housework, which made the house messy, which made me more crabby and unhappy, and I found I couldn’t conentrate and made dumb mistakes at work, and had no energy for anything…and all because my tongue was swollen. I felt pretty stupid about the whole thing.
    Yesterday was my first really good day in a while. Long, allergy elimination diet story short, I’m sensitive to sodium lauryl sulfate, a foaming agent in most toothpastes. I was letting toothpaste ruin my life.
    It doesn’t take much illness to make life harder to manage. I wonder if (neurologists weigh in on this hypothesis…I’m pulling it out of my posterior) your brain can only handle so much at a time. Worry takes a little chunk of cognitive space, so does pain (a lot of cognitive space, there) so there’s less and less of you left to do everything else you need to do.
    Does that even sound testable?

  8. I sympathize and hope you feel better soon. As someone with asthma and chronic bronchitis, I totally know how the mental fog becomes all consuming – I spent about 8 weeks in bed one semester, and between the illness and the Vicodin that was suppressing the cough, I barely remember that semester. Thanks for realizing that it really is hard to be chronically ill and try to be functional.
    I’ve often wondered how ill you have to be to be “disabled” or have a disability. I have a handicapped parking pass because when I am sick (maybe 1/2 to 1/3 of the time) I can’t walk very far before running out of air and/or turning blue. I feel bad about it, though, because I’m hardly the standard user of such an accommodation – I’m 22 and otherwise look quite normal.
    When you get better, any weighing in on what constitutes a “real” disability/how such disabilities should be managed in the academic world would be greatly appreciated and interesting.

  9. Oh. I so hope you feel better soon. Rest. And then rest some more. I had meningitis for at least a week before I really got desperate and desperate meant calling my mother who lived three hours away to come help me. And in three and a half hours, I was admitted to the hospital. I had no idea I was “that” sick. Until I tried to go back to work. And I wanted to work SO BADLY because lying in bed all day long is NOT entertaining, no matter how much Food Network you watch. But rest, I had to do. Every morning, I’d go to work and in four hours, my mother would come get me. Because left to my own devices, I would have pressed on. We are not conditioned to take care of ourselves. I truly believe we need to learn how.

  10. “But I find it remarkable that an illness having nothing to do with the CNS can wreak such havoc on cognition, concentration, and motivation.”
    Well, there *is* the hypoxia – and then there’s the cytokines. There’s not much disease that really has NOTHING to do with the CNS.
    Feel better soon, please.

  11. ewe-man has written a useful post. I have MS, and I have the groggy nasty-case-of-influenza-coming-on feeling about 10% of the year. My left side gives up working and so does most of my brain.
    My self pity was torpedoed by being hospitalised on 30 minutes notice on suspicion of lymphoma. (It wasn’t, as it turned out.) I spent 11 days in a room with women who were dying of cancer, sometimes in great pain, and still cheerful and sometimes even happy.
    I didn’t feel so bad about MS after that. It’s relative.

  12. Now if you could only get bosses around the world to read that blog post. I had one get mad because I was told to stay home for two weeks when I had mono. It was only the intervention of a nurse on the staff that got the boss off my case. I don’t even want to remember what it was like working for said boss with a chronic illness.
    Take the rest prescribed, and feel better soon.

  13. Many thanks to each of you for your kind wishes. I hadn’t appreciated how common these feelings are until many of you shared your own experiences. I will indeed elevate the comment of ewe-man to its own post because it seems we have struck a chord here.

  14. Sorry to hear you have pneumonia – my memories of the experience (repeated each winter) from childhood are vague, which is undoubtedly a good thing, since I’m sure it’s absolutely miserable. I hope you feel better soon, and that you feel well enough to catch Tavis Smiley’s radio program this week. I was just listening to it while preparing a cranberry upside-down cake, and he had two particularly interesting guests: one was Taja Sevelle from the Urban Farming program, and the other was Judith Carney, from UCLA. Dr. Carney is co-author of a new book entitled In the Shadow of Slavery: Africa’s Botanical Legacy in the Atlantic World.
    Two years ago, I had minor surgery on a Friday, and was expected by some to return to work and teach on the following Monday, even though I did not feel well enough to do so. I didn’t know the pathology results at that point either. About half of my colleagues were supportive and thought I should stay home (I’d stayed with two of them, husband and wife faculty, over the weekend), and the other half were really judgmental about how quickly I *should* recover and said things like, “Well, you’d better be back to give those lectures”. As a result, I don’t think I trust the latter group entirely any more – the experience changed my attitude towards them, for sure. Gender had nothing to do with who fell into which group, even though it was a gynecological surgery, and a few people hinted that men would be unsympathetic. Wasn’t the case at all.

  15. This was wonderful.
    I hope you get better soon! It is incredibly frustrating for those of us with chronic illness, but I guess we all have our own battles. I have ME/CFS so I understand all too well. I appreciate being directed to read about your newfound understanding though πŸ™‚

  16. “When told I’d be confined to bed for a month, I thought that it would be great – that I’d get two papers and a grant renewal done and still have plenty of time for blog posts I’ve been wanting to get to, finish writing a couple of songs to take to the studio, get all the tax documents together, maybe learn a little CSS and webpage design and get around to a hosted personal website for the domain I’ve had for a year, etc.”
    I have ME/CFS and I have to admit I laughed at this. As you pointed out later on in your post, your body has other ideas. πŸ™‚ Best to just rest and let your body recuperate, you’ll be back to normal eventually. In the meantime, sympathy!
    Anyway, I just wanted to chime in and say thank you for thinking of what the experience of chronic illness must be like. Many people get sick and never do. I’ll have to have a poke around your blog, or at least I will subscribe to your RSS feed and keep an eye out for the follow-up post.

  17. I’d just like to echo the best wishes for a speedy recovery, and the thank you for considering what it’s like to have a chronic illness.
    I’ve spent the last twenty five years living with lupus, and the last ten with an undermedicated hypothroid problem – and know all too well how hard it is too look perfectly healthy and yet only rarely be able to function at all normally. I’m lucky in that my cognitive function hasn’t been badly impaired (well, of course I don’t know how brilliant I might be without it πŸ˜‰ ) – except for one very bad year when I couldn’t even read…which was a personal disaster.
    One of the things I’ve become very aware of is that most generally healthy people don’t understand the importance of convalesence any more – culturally re-inforced by this whole denigrating of sicknes as moral failure.
    So, please look after yourself and don’t push yourself too hard. I think finding a correct balance of rest and activity is an extremely difficult thing for us all to do nowadays.

  18. Living with chronic illness is not easy.
    I have Interstitial Cystitis and at its worst its real nasty– unbelievable pain, often having to urinate 50+ times a day, extreme dietary restrictions etc… Many folks have to go on disability-(after much fighting with insurance cos) because its one of those invisible illnesses. Until only recently, male docs assumed women complaining of these symptoms were….merely CRAZY… I can’t imagine going thru the level of pain etc and being told it was all in my head.
    Thankfully, I was diagnosed after this became more recognized…Now, the literature is suggesting that many cases of prostatitis are actually IC–maybe if men are diagnosed with it- there will be more serious research for this horrid condition
    I’m “lucky” I have a mild case which is pretty well controlled with a boatload of meds– most aren’t as lucky.
    Now, my bro’s finally been diagnosed with lupus, after several years of horrible symptoms that eventually made him unable to work……he’s had to hire a lawyer to fight his disability co…. he’s only 48, with 3 kids to put through college…its scary stuff– and despite countless docs saying he is disabled– his insurance co is making him jump through hoops to get disability benefits…
    scary stuff…

  19. In a different way I think those that have disabilities have some appreciation of aspects of those with chronic illness. The aspect of people not seeing the reality and the pattern of persistence of the “same misperceptions” by others over and over is familiar, as is the inability to deal with some things as you’d like.
    Just tossing in another angle πŸ˜‰

  20. Yep, take it from an asthmatic. Hypoxia will do all those things. I’m not too well-versed in biology, but it wouldn’t surprise me if hypoxia had a fairly direct effect on the CNS. During and after an asthma exacerbation my limbs all feel like lead, and my brain’s so muddled I can’t think, so I generally doze off from sheer exhaustion. Rest really does help a lot, though. Like someone else up here said, it’s quite sad that people generally don’t recognise the value of convalescence.
    Get better, you! And thank you for the thoughts. I praise my luck that my deficiencies are finally treated, and that my asthma is mostly well-controlled. Once you’ve been really sick I find most people (myself included) get really good at appreciating the little things like having energy to walk to the grocery store, and energy enough to walk back with the groceries, too πŸ™‚ Again, get well πŸ™‚ Hope you recover quickly, too – being sick is so boring! And enjoy being healthy again, afterwards. It’s such a good feeling πŸ™‚

  21. I too am glad to see a “normal” have some insight into the life of the chronically ill.
    Chronically ill people often become socially isolated as much as from prejudice (the sort that poor people and other marginalized people experience) as from the reality of being out of sight of of mind.
    I have CFS (and ETC, my joke at the number of diagnoses that those who are chronically ill have) and am totally disabled. I had what I thought was a 4 o’clock in the morning friend who dropped me and told another friend that he didn’t want to enable me. That my illness was all in my head and if he came to visit me, then I’d have no reason to get up and out of the house.
    I was, before becoming disabled, a successful attorney who loved my job and had every reason to get up and out of the house.
    This “friend” has a master’s in counseling and works at a hospital and has infected all of the people that I once associated with, and since we attended the same church, he did the same there as well. I suspect that as someone with high cholesterol, migraines, and back troubles he doesn’t want to believe that he too could be disabled. He wants to think that he manages his health and that vibrant people are not struck down by suspicious illnesses like CFS. It must be in our heads.
    This has not been my only experience of having to cope with the after affects of how others view those of us with chronic illness. These experienced have, however, opened my eyes to a very ugly side of human nature.

  22. Thank you for your kind simple words at the end of your post that say, “So today, my heart goes out to all of those who suffer with chronic illnesses every day. You have my admiration and respect.”
    As the founder of National Invisible Chronic Illness Awareness Week (and a patient of 17 years of rheumatoid arthritis) I can say that just hearing the simple validation from others is what people crave most. We did a survey a few years ago and with over 1500 respondents what they “hate” hearing the most is “but you look so good!” There is some part of our human nature, despite whatever kind of suffering we are going through, be it physical,mental, emotional, financial, whatever – that desires someone to say, “I don’t know how you do it. I respect that it is hard and you inspire me.”
    Blessings on your continued endeavors.

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