Depression: unavoidable consequence of life-altering surgery?

Bird flying into the sunset. Text: How far away are the Grey Havens. Alicia Butcher Ehrhardt

THERE IS SUCH A THING AS TOO MUCH LOSS

I don’t want to have to write this post, but I’m coming to the conclusion that this is the final ‘tail’ I have to deal with.

I don’t want to believe that it may be a consequences of having my life saved that, for a year, the last drug I’m on may dog my steps, make me wish I hadn’t made it, drive me to a different place where it isn’t worth getting up in the morning.

Maybe I’m writing this prematurely, but even if the whole experience disappeared tomorrow into a (tiny) burst of continuing ability to write, it HAS existed. It is REAL. And I’m probably not alone in having it.

Why would a platelet control drug (Effient) cause problems?

Because one of its side effects is ‘low energy.’

I thought getting the drugs with the major side effects out of my system would take me back to where I used to exist, in my low-energy CFS state that allowed a couple of hours a day for writing fiction – my ‘good time’ – if I did everything right: got enough sleep, took my naps, didn’t eat until after writing (to avoid diverting blood to digestion I needed for thinking), didn’t eat carbs, didn’t leave the house much, kept the adrenaline low by suppressing most of the effect of emotions…

What this actually means is that I need to achieve an energy level somewhat above bare-existence levels for part of the day, and don’t have much of a margin of safety. Many days, especially if something else HAD to be done, by ME, I had to use it for something other than writing fiction. But most of the time – maybe 5 or 6 out of 7 days – I could count on that piece of my old mind hanging around for a bit.

And now I’m down to 1 or 2 out of 7 – and it’s simply not enough to keep me from getting depressed – and then having to use some of those days and some of that energy to drag myself out of the pit of despair.

How do you handle depression?

A long time ago, when I first got CFS, there was some evidence that taking small quantities – about 10% of a regular dose – of antidepressants, and my doctor at the time tried four or five of them over a period when I was desperate to get some of myself back.

And the reaction to medication that still is with me – overreacting to small amounts, and usually not being able to take enough to reach a therapeutic dose – happened back then. None of the drugs I tried had any positive effect; all had side effects which made me beg off them; and on none of them did I reach even that 10% dose before this happened.

It seems to be my version (I’m far from alone in this among people with CFS (PWCs)) of this d**ned disease.

But because of this experiment, I won’t try anti-depressant medications again.

Long ago I learned Cognitive Behavior Therapy – from Feeling Good: the new mood therapy, Dr. David Burns. It takes time, involves, for me, a fair amount of writing it all down and dealing with it on paper.

But it has the advantages of:

  • no drugs for my system to deal with
  • no side effects
  • available in the middle of the night – or any other time and place
  • completely under my control
  • always works for me (eventually)
  • doesn’t need a therapist, a doctor, or a pharmacist – or a prescription
  • no cost

I can’t tell you the number of times in almost three decades that I’ve realized I’m getting overwhelmed, started writing about it, figured out what the important threads were, and worked my way out of depression that was making my life uninhabitable.

I don’t push this on other people – many other people can handle a drug just fine, don’t get many side effects, and just need their brain chemistry adjusted; or, if in a major depression, need far more help than they can manage this way. But it’s what I’ve used all these years, and it works for me – if I put the time and effort in. Which I always end up doing because I can, I don’t like inflicting this self on my family, and depression ruins what life I have left – and bring my fiction to a standstill.

Back to the life-altering part

It is characteristic of many events in life that change you from one person into another – love, marriage, a child, getting kicked out of school, divorce, joining the military, losing a parent… – to make you reassess what is important to you, what you are doing with your life.

Having stents installed, and finding out you might have been heading for a heart attack otherwise, changes you. It is a curious ‘surgery’ because there is little in the way of cutting and healing from that (except in my unlucky case, where I blew a gasket in the hole in my femoral artery – I still have the damage from that).

But that almost doesn’t matter, because I KNOW I am now another person/body. For one, I am now a ‘cardiac patient,’ with the implications of doctor supervision, meds, visits to the cardiologist, tests, and whatever changes these things may force on me.

And of course there is the mortality thing – events remind you time is limited.

It helps to focus you.

But I had ONE thing left to me, writing fiction, and I am dealing with not being able to do that ONE thing.

The rest of life doesn’t conveniently take up the slack

In addition to writing book 2 in the Pride’s Children trilogy, I am trying to market book 1. This has slowed to a standstill – I am hand-selling a couple of copies a month at best. It takes me a lot of time and many emails to get someone to accept a free copy for a possible review – which I’m happy to do when I can, but is happening very rarely lately.

I’m running Amazon ads (thanks to Brian Meeks for getting me started where I couldn’t figure out the basics); so far, since Feb. 4, Amazon tells me I’ve spent $30 on ads, and have sold one copy (though I think they may be responsible for a few more, but possibly not directly from someone clicking on my ads, which is what they track). I can leave that running in the background, and hope for a groundswell in the future.

I am also trying to finish putting up a short story prequel, Too Late, so that those who don’t want to read it here on the free fiction tab – or who prefer their own copy managed by Amazon for their Kindle – can have it for 0.99. Or people who get to my Author Page can select a low-cost alternative to the outrageous-for-an-indie price of $8.99 for an ebook (compare to big publisher prices which are higher) to read to see if I can write. Or even so I can make it available for download to anyone joining my newsletter or following my blog.

And of course there is cardiac rehab – and its attendant paperwork. I don’t even want to tell you how much time I’ve wasted on that, and I haven’t even started yet. When it happens, in a few weeks, it will also sap my energy by making me leave the house two more times per week, and expend energy I don’t have. The hope is that it might also eventually help. Not in the conventional way: I can’t do aerobic exercise, so there is no ability to increase aerobic capacity; the best I can hope for is a tiny increase in ‘fitness’ over time that might offset the decline I’ve been in.

If nothing else, it will shut the cardiologist up that I’ve tried it.

I’m not blogging as much – have nothing interesting to say other than to relate my experiences with the medical system as I’m doing – another indication of low energy.

And I’ve started going for the heart-rate limited slow walks which I’ve been trying to get to for ages (and may have been made more difficult by that blockage) – the only way I know for a PWC to increase fitness on her own. That is, I got ONE walk in – to the middle of the next block and back – when it was 66 degrees the other day. We’re back in the 30s, so I can’t do that for a while again, but will try to find the energy in the hopes that there might be eventual improvement in something, anything.

I still have to finish things such as my mom and dad’s tax returns (he died in Aug. 2014, I got the paperwork to do the next year, and the IRS has stymied my every effort so far to get the right information by… well, you don’t need the horrible details; sufficient to say it’s not done yet).

We want to get this house on the market – and move so husband doesn’t have to deal with me by himself in the future. And because it is so much work just to maintain a home and yard, and I’m not capable of helping any more.

Moving will be its own can of worms – as will finding the right place.

So, more stuff on the to do list – and less to do it with

I’m not surprised to be depressed under these conditions, but I’m not managing to get control of it, because the one reliable thing I had that helped – writing fiction – isn’t coming back fast enough.

I should be happy to be alive. I am grateful, but not happy. All it does right now is remind me how I’ve lost another huge chunk of me, and I can’t figure out how to get that miserable chunk back.

I don’t think most people realize how tiny my life is already. I haven’t had the energy to go to church, or to sing at the Princeton chapel, or to go to the Folk Music Society sings and concerts – the few things that used to get me out of the house.

I have an assistant – so she has been getting some of the backlog things, and the recurring things, done – we need to move to the dejunking, final fixing, getting rid of, downsizing and losing even more things from your life to fit a smaller place. I barely manage to work with her by giving her instructions when she comes. I’m no help any more lately.

There is such a thing as too much loss.

I’m perilously close to that point.

Comments?

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29 thoughts on “Depression: unavoidable consequence of life-altering surgery?

  1. joey

    Hard to click Like on losing more of your energy, and your activity depleted. :/
    I think there’s always a new level of normal. I mean, over the years, I’ve had to reevaluate a new baseline for normal and I’m sure you have adapted more times than I have. Every time, It Sucks. We so often forget the toll that our emotions take on our energy, just in adjusting and processing before adaptation can even be negotiated. Change is exhausting. But sometimes, things do get better, and I sure hope you’re about to have an upswing.
    I don’t know what the future holds for you, but just in the writing of this post alone, is a strong, capable woman.
    Best wishes.

    Liked by 1 person

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    1. Alicia Butcher Ehrhardt Post author

      Thanks, Joey. Much appreciated encouragement.

      I damp my emotions – so as not to have to process the adrenaline. One of the reasons I got off most of the drugs was that they blocked my ability to do that – and I can do it better now.

      But it better not be permanent – I feel like I’ve lost half my remaining IQ.

      Capable – hope so – but can she write fiction that matters?

      Liked by 1 person

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  2. Cil Purnick

    All I can do is offer you hugs, a shoulder to cry on and an ear to listen, my friend. I KNOW the feeling you describe so well, although we have experienced it differently. I felt .. and still feel .. that there is such a thing as too much loss. The struggle to recoup what you feel is necessary for even a minimum of quality of life is SO HARD. And I know it feels like life keeps hitting. When you think you’ve climbed up out of that hole, you look up only to find a 2×4 coming at your head, knocking you back into the hole yet again. Believe me…..I know what THAT feels like.

    I am SO GLAD you found cognitive therapy and that you found a way to incorporate it effectively into your life. I found the next tier, built on top of cognitive therapy….dialectical behavioral therapy…and to me it was….and still is….a constant lifeline (DBT). There is a great manual for that too, but I know you likely do not have the power to add anything at all to whatever routine you have left.

    I admire your struggle. I admire your courage to voice your struggle here. When you voice your struggle, as you well know, it helps you to step back, just a little, and fight back those voices that tell you that life isn’t worth living. And of course it allows those of us who care about you to tell you…our lives would be so much less without you in it. You are loved.

    I don’t really remember how we met…probably through St. Greg’s….and I don’t remember how we ultimately became friends. All I remember is that we are friends and that my life is expanded because of you.

    Love you, Alicia,
    Cil

    Liked by 1 person

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    1. Alicia Butcher Ehrhardt Post author

      Dear Cil,

      When I have a bit more energy I will ask you for the DBT title.

      I AM fighting back: the first step is naming the enemy. Then comes cutting the enemy down to size, if you can.

      Glad to see you’ve found my blog – it save ‘splainin’ – as Ricky Ricardo used to ask Lucy to do.

      I’m gathering up the pieces: I’m supposed to stay on this drug, there is inevitably a psychological component, and it is really hard to handle a new challenge on top of the rest I’ve already had loaded onto my back.

      But the alternative isn’t something I can live with.

      I’ll write more if I have some success with the battle.

      Meanwhile, I really love my friends. Thanks for writing.

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  3. Alice Audrey

    I feel for you.

    There are times I will go without writing for long stretches. But those are all voluntary. To want to write and be unable to is too much like my days of suffering with writer’s block.

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    1. Alicia Butcher Ehrhardt Post author

      I wish it WERE writer’s block. I have techniques I’ve perfected for myself, and they’ve always worked.

      But I need some energy and a few brain cells firing to use them!

      It is tantalizing to sit at my computer for hours and not be able to do the next little piece – which would have been possible just a few months ago.

      This kind of ‘event’ focuses your motivation and makes you not want to waste time; to have it also make it impossible to write is just mean. I’ll report the fatigue and depression to the doctor; see whether she has any useful suggestions. At least she’ll have the report.

      And I’m demanding primary data about how they decide how long you have to take the stuff – a year seems awfully long, when Plavix used to be taken for six months for stents.

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  4. Pamela Spichiger

    Alicia, Just by writing your thoughts you are still writing. These two articles you have written since your awful breakdown of your body or should I say letdown of your body have been wonderfully written. I for one have found them comforting even though I have not had Heart problems,my ME/CFS leaves me with many of your same emotions. My first thought when you talk about the depression side of being a cardiac patient took me back many years. Mike’s dad had a heart attack and by- pass surgery. Luckily he had a full recovery. The one thing that stands out vividly is of the Doctor coming in to talk to the family. He told us that Dad would go through a depression and that we needed to watch for signs of that. Depression is just a normal part of the heart recuperating. Seems like a strange side effect to me,but have seen it happen to my own mother since then also. So you are perfectly normal,even though it is a hard part of any disease. Bless you, Alicia,you will get back to normal. At least the best normal all of us with ME/CFS can have.

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    1. Alicia Butcher Ehrhardt Post author

      Interestingly enough, I was NOT warned of depression, by any of the medical people over many interviews.

      I had to discover that all by myself.

      I WILL get back to ‘normal’ – or some new baseline.

      If it doesn’t include writing FICTION, it won’t be worth it.

      Don’t worry, I’m already talking back to the depression that lies, and says I can’t write fiction. And I will report it to the doctor’s office, for whatever that might be worth – so at least they know; I won’t be doing pills at all, or therapy unless we get suicidal, because that would cost energy I don’t have.

      Just pray I make it through – and survive the Effient, assuming it is the cause of the lowered energy (and hey, maybe it gets better!).

      I’m fighting back. When I stop doing that, I’ll really worry. I don’t know yet how much I can stand.

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  5. Janna G. Noelle

    Alicia, I’m totally sympathetic to all that you’ve been through of late. Please do remember to be easy on yourself. I know that you long to be writing right now, but remember that writing too is a form of exertion. Maybe it’s just not the time for it right now. Maybe if you just give yourself permission to not write at the moment – maybe instead find some a wonderful book or a gripping TV show to immerse yourself into for a little while – that too will help you relax and find your way back to yourself. Wishing you all the best.

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    1. Alicia Butcher Ehrhardt Post author

      I will keep dashing my brain against the monitor until it writes. There is no other for me.

      But I do hope the rehab improves blood flow a bit, and that improves mood and energy a bit.

      People don’t understand: this is what makes life worth living for me, after nearly three decades of crap, losing my career, and all the rest.

      It gets very, very bad without the writing.

      I watch enough entertaining TV. AFTER the writing portion of the day. If I start on a book (I read The Martian the other day), if it’s good, it usually ruins the next day because I stay up too late reading. I don’t need to do that to myself (I skimmed The Martian ferociously – the science is common enough to someone who was chosen for the final evaluations in Houston in 1980 for the astronaut program – and it still cost me a day).

      Thanks for your good wishes – and best with your writing. I follow your nice blog posts.

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  6. marianallen

    I hope the rehab works for you. I’m assuming there isn’t a PWC support group around, or a PWC therapist to help you thread that needle of getting things done without exhausting yourself? I can’t even imagine what it must be like, even after having read PC. We without CFS can push through with a project and then crash and recover fairly quickly. The consequences for you of a big push are not so easily dealt with. But PC made me love the person who wrote it, so I beg you to find value in yourself, whether you can write or not. I look forward to books 2 and 3, but I would rather have you treasure yourself, whether you write or not. The person who wrote PC is precious, regardless of whether or not she writes.

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    1. Alicia Butcher Ehrhardt Post author

      Thank you for your lovely supportive words, Marian.

      I do have a support group – we’ve been meeting for almost 20 years, but are tiny, and today was our last meeting. 😦

      Therapist? You’re kidding. NO physician specialists, and no therapists. I’ve never had them – half of doctors don’t believe this (as if we’d invent it!) or think it’s mental illness. We exist in the spaces between, and hope care for our other illnesses are handled properly, because we can never count on doctors knowing how the CFS will affect other stuff.

      I’m working on all of it, all the time. Writing these posts helps me process, and sometimes gives me ideas which help.

      There has been a lot more advocacy in 2016, and we had hoped for more in 2017 – there are people out there doing research, but NIH gives us less than male-pattern baldness research.

      We are dying – but not loudly and noisily like AIDS patients (the advocacy finally forced researchers to figure it out). ::shrug::

      With the new administration, I’m pretty sure government interventions are going rapidly backward; maybe some of the current crop of researchers will find something. My guess is that, when they do, their research will benefit a number of other illnesses (such as Gulf War Syndrome) which are also being neglected or pooh poohed.

      Don’t worry – if I can write, I WILL write. Just hope it will be soon, and won’t require me to fight to get off the drug they really want me to take, which they claim keeps stents open. I’m starting to locate the primary papers on that – we’ll see what I believe.

      I’m doing the best I can – can’t ask myself for more.

      Liked by 1 person

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      1. marianallen

        No, you sure can’t. Just add the task of defining yourself by who you are, not what you can do. I have a daughter who only values herself as a mother; as her youngest grows toward independence, I worry for her. She’s said she only lives for her kids, that they’re the only thing worthwhile about herself. It breaks my heart. She’s HERSELF, and so infinitely precious, just in her own person. So are you.

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        1. Alicia Butcher Ehrhardt Post author

          It’s so true – and fine – and I tell everyone else.

          I had really high standards for myself. I went to school forever, did many things women, especially women brought up in Mexico, didn’t usually do, thought for a long time that physics was where God wanted me to be (for various reasons).

          But I’ve been a little too good at that for almost 30 years since, just being there – kids needed me, homeschooling them, etc. – but they would miss me – but don’t NEED me, if that makes sense.

          Everyone has to have SOMETHING they do for themselves. When I find someone who just wants to be a mommy, who has no one particular thing she wants for herself, I worry. Because kids leave, and, by definition, you have not done a good job if a fairly normal child doesn’t become an adult (fairly being your definition).

          Mine have, more or less, adulted (matured sounds so old).

          I have to realize that I made them independent on purpose – no child calls home as much as you’d like.

          But I’ve always had that little bit for me – some music, and the writing – and both are missing right now, and I was never more than an amateur at the music.

          That’s why I fight. I may live another good chunk – and I can’t live it this way unless forced.

          I’m working on my attitude, but even I can’t attitude my way past something physical. Just pray it isn’t that.

          Liked by 1 person

        2. marianallen

          Alicia, I understand what you mean about your kids missing you but not NEEDING you. That’s what Charlie and I have aimed for, too.

          I hope with all my heart that you recover your writing strength, for your sake and for mine.

          Is a dictation program an option?

          Liked by 1 person

        3. Alicia Butcher Ehrhardt Post author

          I have figured it out, and will write more when I figure out what to do.

          Dictation is not a problem – my typing is fine. THINKING is the problem, and all the evidence now points toward the lack of energy and concommitant depression being a side effect of the last med, Effient. Since it doesn’t hurt, as all the other side effects have, I just realized this morning how bad it is.

          I don’t know yet what to DO about it. Stopping Effient isn’t an option – unless I want to try Plavix and its long list of potential side effects. I’m giving it another week.

          But it’s nice to find out it’s probably the drugs, and not me suddenly taking a turn for a depressed cardiac survivor. I have enough other problems already, thanyouverymuch.

          Liked by 1 person

  7. lgould171784

    I am reading part one of the trilogy now, and I just want to assure you that it is well worth continuing. I would recommend it to anyone who appreciates a story with strong character development. It must continue!

    Liked by 1 person

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  8. Jennifer

    I hope that writing how you feel (and why) helps. You’ve had so much happen to you that it is not surprising that you feel overwhelmed. And, as you point out so clearly, you have so little energy reserve to fall back on, so little flexibility available to manage such huge and life-changing events. I am not surprised that you feel depressed. I am thinking of you and sending virtual hugs. I wish I could do more. ❤

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    1. Alicia Butcher Ehrhardt Post author

      Thanks – by talking back you remind me alone isn’t alone.

      I’m struggling with what I’m sure other people in similar circumstances struggle with, but I don’t have the resources right now.

      I have to trust some of them will come back.

      Don’t want to be a one-book wonder. I like writing, which is also why this is so frustrating.

      But a blog post isn’t fiction. Emails aren’t fiction (no, not even when I write them).

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  9. juliabarrett

    Depression is NORMAL after any cardiac event. It is to be expected. Plus you have lots going on in your life. It will get better, sweetie.

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    1. Alicia Butcher Ehrhardt Post author

      I sure hope so. I am too close to tears too much of the time – and I have years of experience calming my emotions so I don’t get clobbered by the aftermath of adrenaline. YEARS. I’m good at it. Was.

      If I can’t write, I’m completely worthless to myself.

      Liked by 1 person

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      1. juliabarrett

        Alicia, listen to me – it’s so common as to be expected. You may want to try an anti-depressant to get you over the hump. Maybe 3-6 months.

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        1. Alicia Butcher Ehrhardt Post author

          Thanks, but no. I am not taking ANYTHING that might give me the same side effects it did the last time I tried them. I can take this. I can’t take side effects and their random long tails. Besides, they usually take a while to work, and if one doesn’t work for you, getting on and then off is not fun.

          Don’t worry – I’ll battle it on my own, get someone to talk to if that doesn’t work after a while. Maybe the rehab will help in some way other than exhaust me.

          Liked by 1 person

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