My Sergeant Pepper Moment

The middle of winter marks a mixed bag of anniversaries for me. I’ve always been a bit – well, nostalgic isn’t the right word here. I’ve always marked anniversaries, as a way, I guess, to measure where I’ve been and where I am. So at this point I’ve been bedridden for four years (okay, I’m ready to graduate already) and a vegetarian for 21 (V8 and vodka all around!).

And today marks the 20th anniversary of an important event in one of the darkest periods of my life.

Twenty years ago today I was hospitalized for depression.

I think some people might not want to talk about something like this. However, it was impressed upon me from an early age that it was perfectly normal to seek mental health care – getting help for those sorts of problems had no more stigma in my family than getting it for physical ones. So admitting that I’ve been a psychiatric inpatient has never bothered me.

In January 1992, I was in 11th grade. The school system I grew up in is a large and well-regarded one, and there was a lot of pressure to do well. For my all-important junior year (if you don’t do well junior year, you won’t get into a good college, and if you don’t get into a good college, you fail at life), I’d ratcheted up my schedule a notch so that all my academics were honors or AP classes. And by the end of the fall, I was totally overwhelmed – and totally depressed.

(There was a boy involved in this, too, but we’ll leave him out of it for his privacy’s sake. And, well, okay, for my privacy’s sake too. I know, I’m usually totally willing to tell the whole internet my business, but I’m leaving that part out. Honestly, that’s the only part of this that’s embarrassing. To be diagnosed with major depression? Fine. To be depressed (partially) over a boy? Mortifying.)

Anyway, I’ve forgotten a lot of things about high school, fortunately or unfortunately, but let me tell you, I remember exactly what it was like to be that depressed. It was, as you’d expect, complete misery.

To be that depressed – the way I described it, at the time, was that it was like having emotional mono.

I’d had friends with mono by that point, and that really was what it reminded me of most, because the depression left me overwhelmingly exhausted much of the time. Before that winter, I’d had no idea that mental illness could be so physical. Everything was a titanic effort. Trying to ford the constant tide of sadness to get done the things I was supposed to be doing was almost impossible, and the less I accomplished, the more hopeless I felt.

There were many days when I woke up and couldn’t force myself out of bed. My limbs wouldn’t obey me, and I would lie there watching the sun and shadows slide across the room until dinnertime. I didn’t much care what happened in the world outside, anyway – I was trying so hard to merely keep afloat that I didn’t have any energy left to do so.

In addition to the tiredness, I felt like my skin had been peeled off and I was walking around as one big raw mass of exposed nerves. Emotionally, everything hurt, all the time. Going out into the world was one unbearable wound after another, and I would just try to endure it until I could go home and fall apart again.

But even retreating from the world wasn’t enough sometimes, because the littlest thing would throw me into floods of tears. I remember one particular afternoon I was cleaning my room and tripped over the phone cord. The sudden startle of it set me crying – and I slumped down on my bed and cried for the rest of the afternoon.

The depression was so bad that I started to have auditory hallucinations, first when going to sleep at night, and then increasingly during the day. On Monday morning, January 13th, 1992, at the beginning of drama class, I stopped being able to keep the voices at bay, and I collapsed into a breakdown. And that was the point at which my really good shrink decided that it was time for me to be hospitalized for a bit.

Thank heavens for a really good shrink, and for prescription antidepressants.

I went on Prozac, which was the miracle drug of the era. If you’ve never been on an antidepressant, being on one doesn’t make you suddenly happy. What it does do is take away that terrible raw feeling, and it replaces it with numbness. I’ve always described it as like living in one of those balls you put hamsters in to let them get some exercise outside their cage. You put them in it, and they go roll roll roll bonk into one wall, and then roll roll roll roll roll roll roll roll bonk into another wall. You’re at a bit of remove from the world, and you don’t really feel much of anything, but when you’re really depressed, that’s better that feeling everything, too much, all the time.

Thankfully, a few weeks in the hospital and getting established on Prozac gave me enough improvement that the hallucinations receded and I started managing a little better. I dropped a couple classes I didn’t need the credits in and converted that time into a personal study hall, trying to catch up on all the work I’d fallen behind on. At the end of the school year I passed all but one of my classes. (Algebra II Honors. Why on earth did I take honors math? I should have known myself better than that.)

I stayed on Prozac for a couple years, but that year proved to be the worst of the depression. I wasn’t really sure whether I was going to need Prozac permanently or not. I think I dropped it my sophomore year of college, and I’ve never felt a need for it since.

I actually have rambled on and on here telling this story for a reason.

When I first fell ill with ME/CFS, the first internist that I saw – who came well-recommended – listened to my litany of sudden, out-of-the-blue health weirdness, and when I finished, offered me a prescription for an antidepressant. I remember bristling at the suggestion.

“How is that supposed to help?” I said. “I’m not depressed. I’ve been depressed. I know what it’s like to be depressed enough to need medication. This is not depression.”

She looked at me blankly. She didn’t answer. She had no other treatment ideas. I never went back to her.

I try to give that doctor the benefit of the doubt. Faced with a young woman with a (long-ago) history of depression marked down on her chart, who’s tired all the time and is having trouble doing the things she needs to do, I can forgive her assumption. She did brush off my long list of bizarre physical symptoms, but it’s not the worst that a doctor’s treated me in the years I’ve had this disease.

The difference, though, the big difference, the gulf of difference between tiredness from depression and tiredness from a physical illness, any physical illness, which is pretty easy to discern, is the presence or absence of anhedonia – lack of pleasure from activities usually found enjoyable. This is what every person who’s experienced both depression and ME/CFS, and every doctor who knows anything about both will tell you.

When I was depressed, I didn’t want to do anything. Nothing sounded appealing. Nothing was fun. I mostly just wanted to be left alone with my (depressing, hopeless) thoughts. But if you asked me, presently, what I’d like to do if I woke up one morning and was miraculously feeling better – well, I’d run out of energy to talk before I would run out of things that I’d like to do. (I actually answered this question on my pre-No Poster Girl formspring account.)

Is it depressing to be sick all the time? Sure it is. But just because I’m sick all the time doesn’t mean I’m depressed all the time, or even often. While of course I’d rather be well, I’ve gotten about as used to being this sick as one can, and I do my best to enjoy myself within my abilities.

But maybe that’s all the sedating antidepressants I take to help me sleep talking.

Advertisements
This entry was posted in ME/CFS. Bookmark the permalink.

31 Responses to My Sergeant Pepper Moment

  1. I had a relapse of depression happen at the same time that I got the trigger infection that led to me getting ME/CFS. I spent 6 months treating my depression in all the ways I knew how from previous relapses, until I went to my doctor one day and said “I don’t have any of the symptoms of depression anymore – except for the fatigue” and he’s the one who figured out it was ME/CFS.

    I’ve said before that if it wasn’t for the fact that there are actual medical treatments for depression, I’d consider it by far the worst illness of the two. Even though I’m bedridden now, it’s better than untreated depression.

    Thanks for telling your story. I hate the stigma attached to mental illness and antidepressants, and it’s so important for people to realize that depression is treatable.

    • Jocelyn says:

      Welcome, Happy, and thank you for the comment. Sorry to hear you are bedridden also. You know, with depression and ME/CFS having been the two Awful Things that have happened to me in my life, I’ve given a lot of thought over the years to which is worse too. I’ve decided that in my mind, ME/CFS is worse, simply because there are no really effective treatments for it. I’d rather be depressed and on Prozac, rolling around in that little hamster ball, and actually be able to go out in the world, rather than be bedridden. But yes, untreated depression is just awful.

  2. I knew I’d found my primary care doc when I’d discussed my CFS diagnosis* & how I was struggling at work even tho I’d cut down to 3 days per week & she asked me that question any GP trying to sort ME/CFS from depression should ask….

    “If you woke up totally cured tomorrow, what would you do?”

    Of course I rattled off a massive list of things I’d either been struggling to do & failing or just flat out not able to do at all – work stuff, stuff around the house, lost hobbies etc.

    “OK, you aren’t depressed then” she said, “if you were you’d have no idea what you’d do when you get better”

    She explained what anhedonia was & that I didn’t have it, she didn’t really know any treatments for CFS cause there isn’t really any, though she helped with sleep meds sleep straight away. She has worked with me over the years & we’ve tried out things I’ve brought to her rather than dismiss them like many docs would.

    Such a simple easy test to rule out depression, but as most docs seem to think ME (CFS in their language) is a type of depression they don’t even think to ask it & interpret all their depression scales incorrectly – I’m sure those simple questionnaires would light up as depressed for MS, Lupus, RA patients too because of sleep probs, pain etc

    (*stupid Aussie criteria that was Fuduka rehashed, actually fit CCC/ICC – I’d had lots of bad advice from Docs before her & thought CFS was abnormal depression & had never heard of ME)

    • Jocelyn says:

      Yep, it’s so simple to differentiate the two. That question will do it for you. Either the depressed person will have no idea what they’d like to do when they get better, or they’ll tell you that they’ll probably never get better and that they’ll always be depressed! I know I probably would have said the latter, too. When you’re in that hole, it tricks you into thinking that you’ll never get out.

      I’m so glad you have a good doctor. That list of attributes you gave her – understanding the illness, helping with sleep, being realistic about cures, being open to information you bring – are a rare combination, but they’re exactly what every ME/CFS patient deserves.

  3. kathy d. says:

    It’s very brave of you to discuss your bout with depression. It’s also very important in the discussion of CFS. Wish you could testify or write testimony or explanations of the differences between depression and CFS and also that you explained anhedonia. I’ve never thought about this term before, but when you raised the question of what would you do if you didn’t have CFS, I thought of about eight things, actually more. I’d go to Macy’s, look at clothes and shoes and buy a new coat and other necessities, among other more lofty pursuits. I’d take the subway in my city all over the place, to the Bronx Zoo, the Brooklyn Botanical Gardens, to the Metropolitan Museum of Art and the Museum fo Natural History, and art galleries. I’d go and have the best biscotti ever at a bakery in the Bronx and have cappuccino and cannolis in the Village. I’d go to the movies! Actually, sit and watch a movie instead of waiting for it to be on dvd to watch at home.
    And then I’d do lots of productive things, like help out in a food bank, go and picket for CFS research and funding in D.C. And on and on and on.
    Time to go back to my tv and NY Times and books.
    Hoping for good times for you this year.

    • Jocelyn says:

      I didn’t realize you were in NYC, Kathy! I lived there for two years while I was an acting major at NYU. I lived at 3rd Ave. and 11th Street. I’ll meet you at Veniero’s for that cannoli, and then we’ll go check out the galleries together.

  4. kathy d. says:

    Oops, I meant to say that your testimony or written explanations of the differences between CFS and depression should be read and taken seriously by all of the CFS researchers and CDC and other governmental agencies — and the Mayo Clinic — and the CFS deniers in Britain who equate CFS with whatever they equate it with. Someday they’ll all be set back in their tracks when the research is absolute and when they listen to those who are ill. Hopefully, some are reading this post.

  5. Tanya says:

    YES YES YES!!!!
    Thank you so much for expressing it so well. I am starting to write a blog and want to begin to tell, amongst other things, my journey of ME. But I am a little scared of doing it, partly because of the difficulty of telling people ‘I don’t have a psychosomatic illness’ (as many medics in Britain believe). It’s one of those ‘catch 22s’ that if you say that you don’t, people think you must be ‘in denial’. But you’ve expressed it perfectly.

    I had depression before I had ME, so like you, I was also initially diagnosed with depression, despite me insisting that this felt very different to depression – because I didn’t feel sad, just tired.

    I took the dr’s diagnosis in good faith; I went on antidepressants and upped my exercise, as recommended. Within 2 years I’d gone from working full-time and being tired in the evenings to being wheelchair-bound and only able to work four hours per week.

    Drs tend to think that dishing out diagnoses of depression and prescribing exercise is a safe option – I wish I knew then how dangerous it was for my health.

    Thank you so much for this blog – you capture the experience of it so perfectly and memorably and speak with such dignity.

    • Jocelyn says:

      The perception of denial – that’s the trouble, isn’t it? The fatigue and difficulty functioning shouldn’t be so confounding, but I think the Doctors Know Best problem makes it so

      I’m so sorry to hear that you got bad advice that contributed to making you worse, Tanya. I didn’t get good advice either, and I hit the wheelchair moment about two years in, too, and then slid all the way to bedridden a year and a half later.

      I’m happy to hear you’re thinking of starting a blog – the more of our voices we make heard, the better. Send me a link when you get it going, so I can put it in the sidebar and come by to visit.

  6. Kirsten says:

    Oh SO true about the difference between depression (I’ve done a few bouts of the severe secondary type and know it far better than anyone would wish to) and this illness…still shocks me – often into silence, which isn’t so helpful – that anyone could believe someone would want to live this way. Every single person I’ve had the privilege of meeting who also lives with this could go on for days about what they long to do.

    Your words about the pressure in those final years of school might just be the exact ones we got too…maybe they’re in some worldwide teaching manual? I wonder if they know how much harm they can do? And the boy – most of us have been there I suspect.

    I wish you a happy anniversay, in the sense that I hope the looking back shows you how far you have come in what you have endured as well as all the other emotions that I know can swarm at these times.

    • Jocelyn says:

      Oh, Kirsten, secondary depression. I think that might even be worse than primary depression. I mean, with primary, at least it’s sort of free-floating and there’s not a “reason” for it. With secondary, if you’re dealing with a problem that’ll never go away, I think it’s even harder to deal with fighting off the depression.

      The school pressure – I left this out because it didn’t make sense to include it, but I was in a “gifted” track starting in third grade, and the pressure and high expectations started there. You got told that you were special and that you were definitely going to be a high achiever in life, and that’s a lot to lay on a kid in elementary school. By junior high you were expected to start your high school language and math a year ahead, and even then the implication was that if you didn’t, you would fail at life. And it turns out that – all of it – was a lie!

      Thanks for the warm wishes. This anniversary has always been an opportunity to be pleased that I’ve never suffered again the misery that was those years of depression. Life got brighter and has mostly stayed that way even through my illness, and for that I’m very grateful.

      • Kirsten says:

        your first comment about secondary depression was so interesting to me jocelyn – had never thought of it that way…but oh so true. very perceptive (we get a fair bit of spare time to think through things and become perceptive, don’t we?!).

        and all of that pressure is absolutely a lie. i suspect the remarks about the importance of your marks etc and how they were going to decide the rest of your life were geared at those who really weren’t trying at my schools. however for those of us who were, listened to the message (ad nauseum) , and were already ‘high achievers’ it just added more pressure to that which we already put on ourselves. one boy a year or two below me actually committed suicide due to the ridiculous emphasis put on final exams and fears he wouldn’t live up to those expectations…just tragic.

        here’s to gratitude and to a life burning ever brighter.

  7. Kirsten says:

    PS – a fellow long-term vegetarian!

  8. Oh, there’s a big difference between the two. Sadly the routine offering for ME round here is antidepressants. I struggle with antidepressants for my depression because the ME makes me so wretchedly sensitive so why would taking them _for_ the ME help that?! I wish more families would raise their children with such a realistic attitude as yours. 🙂

    • Jocelyn says:

      Welcome, idiosyncratic eye! I’m guessing from reading a bit of your blog (which I’ve added to the sidebar) that you’re in the UK. Y’all have some potentially pretty horrific consequences for being a person with ME beyond antidepressants.

      And it’s a good thing that my parents raised us the way they did, because there is a fair amount of depression in our family!

  9. kathy d. says:

    Yes, someday we’ll go to Viniero’s, the best bakery really. I’ve been in that neighborhood many times, of course, not since CFS hit. Actually, once to the Kiev, but now it’s closed.
    Vegetarianism is a thought, only for me the food preparation would be hard. I often order food delivered, including steamed vegetables and lentil soup. I don’t have the energy to shop and prepare a lot of vegetables. .I used to do that for dinner, but now I really can’t do it.
    And I find I do need protein to function, and what’s available, taking cost into account, isn’t too much.

    • Jocelyn says:

      Maybe this is obvious, but have you considered frozen vegetables? Very little prep needed – just toss them in the steamer or the microwave. It’d be tough to get out to get them, but Peapod and Fresh Direct are still a going concern where you are, right?

  10. kathy d. says:

    Yes, of course, frozen vegetables. I prefer fresh but I have cooked frozen vegetables. I throw them on top of my frozen vegetarian/tofu lasagna or brown rice and vegetables or throw them in lentil soup or canned soups.
    A friend suggested Peapod. She uses it and says it less costly than Fresh Direct. And they have brands I use. But for now, I’m okay with ordering food delivered, including delicious fresh lentil soup. And a friend picks up food at Whole Foods for me often.

  11. kathy d. says:

    Oops, forget to say that I have found that night fruit gives me energy for awhile. Had to do some things at home, which I rarely do, but if I ate oranges, I perked up for about an hour. It was kind of amazing. I guess the water, sugar and Vit. A & C quickly enter one’s bloodstream.

  12. Pingback: Happy Blogiversary to Me | No Poster Girl

  13. Pingback: Why should you care about M.E.? « Thorns and Gold

  14. Pingback: New Bottle Paranoia Syndrome | No Poster Girl

  15. Pingback: On One Decade In | No Poster Girl

  16. RockinME says:

    Hey, don’t worry about not passing Algebra II. How could you have foreseen that ME attacks the mathematical computation area of our brains? I’m sure if you weren’t ill with this you would have done just fine. It isn’t fair. Not at all. I really hope someday that this issue is better recognized for students with ME.

Leave a comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s