Why Can’t I Have Both?

It’s been a while… I know.

It’s just on two months since I disappeared off the blogging trail.  No explanation, just not there.  My apologies for the ‘no explanation’, but it just had to be.  The short story is that I came to a point where it was necessary for me to question whether my participation in the blogosphere was helping or hurting me.  Was I getting out of blogging what was good for me, or was it actually causing pain?  Ideally it would be great to say my participation couldn’t possibly be hurting me, but that’s simply not true.  I have yet to resolve the issue in my mind, and so in the meantime I will only be posting sporadically, when something is weighing particularly heavy on my mind.

I admit too, that pulling back in my participation has also included cutting back on how much I have been reading others’ posts.  That has simply been too hard, particularly with writing comments.  But I do still have a desire to support the blogs I follow and I will be back eventually.

Meanwhile, a dilemma falls before me.  It’s not one that is new to me, but perhaps this time it is a bigger issue because of the consequences involved.  Two options are before me and I wish so much that I could have both.  Unfortunately it doesn’t always work that way and particularly in the issue of mental health versus physical health.  So often it seems the option is one or the other.  Why can’t I have both?

This past week I finally got in to see a Pain Specialist to consider how best to treat my Fibromyalgia.  I’ve been waiting for this for several years now, so it was so great to finally be there.  Regular readers will be pleased to know that I also finally changed my doctor (General Practitioner) a few weeks back.  That, and seeing the Pain Specialist has finally given me some hope that treatment is possible.  Unfortunately though, it looks like it might come with a cost.

The Pain Specialist has recommended a medication for me to try, which if it works for me, could turn my life around in terms of the pain and fatigue that I have on a daily basis. What the medication recommended isn’t important to this post as the last thing I want to do is get into a conversation of ‘what works for who‘.  I don’t see the point in that simply because we all respond to medication differently.

It was not possible for me to start on the medication straight away as it was necessary to get funding approved from the New Zealand health system.  The hope was that by the end of next week I would be able to start.  It would take some weeks to get to optimum dose and so to work out if it was effective.

It was all sounding great, until I came home and did my own research on the drug.  I am particularly careful to read up on medication I intend to start on because of firstly adverse interactions with other medication but also because of those lovely side effects we all dread.

The interactions were listed as moderate, but I had discussed it with the specialist and we agreed that with careful monitoring it would be ok.  But the side effects were different.  All the usuals, including my dreaded weight gain… but here’s the one that stopped me in my tracks:

“you should know that your mental health may change in unexpected ways and you may become suicidal (thinking about harming or killing yourself or
planning or trying to do so)”

Added to that was:

“….panic attacks; agitation or restlessness; new or worsening irritability, anxiety, or depression; acting on dangerous impulses; difficulty falling or staying asleep; aggressive, angry, or violent behavior; mania (frenzied, abnormally excited mood); talking or thinking about wanting to hurt yourself or end your life; withdrawing from friends and family; preoccupation with death and dying; giving away prized possessions; or any other unusual changes in behavior or mood”

It speaks for itself.

I know that this is not the first, or only, medication that has these possible side effects.  There is the well-known anti-smoking medication which I have always said I would never risk taking because of the possibility of suicidal thoughts.  Then there are of course, many anti-depressants and other medications for mental illnesses which have similar risk.

I know that.   I don’t like it.  I think it is crazy, but I know that’s the pharmaceutical world we live in.  What bothers me is that I am stuck between a rock and a hard place.  Yes, these are possible side effects and might not happen but I have to be prepared for their possibility.

For just a few hours, from leaving the Pain Specialist to getting home and doing my own research, I had some hope for the possible end of my pain (or at least significant reduction).  I started to think about being able to get back to work, and was even mentally rewriting my out-of-date CV.

This drug offered me hope… but at the expense of my mental health.

Do I restore my physical health while risking my mental stability?  Or do I say no to the drug, continue to be limited in my physical health, but be sure my mental health is maintained (at whatever level it is currently at).

This is a really hard one.  Yesterday I was by chance reading Lulu’s post on her blog Sunny with a Chance of Armageddon on a similar issue she was facing. Which do we preserve?  Mental health or Physical Health?  It seems that this is a common dilemma we face when we have mental illness, and I’m coming to the conclusion that we each have to make our own decision.  For each, it will be different.

Personally, while I haven’t reached a decision on my dilemma, my inclination right now is to preserve my mental health (which would practically mean avoiding this particular medication).  While my mental health is relatively stable now days, I continue to struggle.  I have been at the bottom of the pit in terms of mental illness. Years of hospitalisation, heavy medication, ECT and the many harmful things I did to myself including suicide attempts.  I had suicidal thinking for a very long time.  I have no desire to go back there.  I suspect I would find it difficult to crawl out of the pit again.

Do I try for stable physical health?  Or stable mental health?  I hate the way my life is dominated with pain right now, but perhaps surprisingly, I think I would rather have that physical pain than to go back through the mental pain I lived with, the worst of which was through the late 1990’s.

On Tuesday I will see my (new) doctor and talk to him.  Maybe I’ll find the cash and go see my rather expensive psychiatrist too.  The problem for me is that while my medical notes are full of mental illness, none of the doctors involved knew me at the worst of my mental struggles.  They haven’t seen that Cate.  They don’t know how bad it can get for me.  I do.

There are no guarantees in this game.  I could have no side effects and get good pain results too.  It just might not happen… but I’m not a lottery player and even so, I just don’t like my odds.

But forget about my dilemma for a moment…   what would you do?  Maybe you’ve already faced this issue.  How did you deal with it?

“No amount of love can cure madness or unblacken one’s dark moods. Love can help, it can make the pain more tolerable, but, always, one is beholden to medication that may or may not always work and may or may not be bearable”

— Kay Redfield Jamison (An Unquiet Mind: A Memoir of Moods and Madness)

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10 thoughts on “Why Can’t I Have Both?

  1. I understand that bind.

    My ulcerative colitis and the enteropathic arthritis would probably be better controlled on prednisone (I take a weaker steroid that only works on the digestive tract), but I won’t take it because when I’m on it for more than a couple of days, I start to hallucinate, I stop sleeping, and I get intensely suicidal.

    It sucks, but it helps that I have good doctors who get it. They don’t pressure me about taking prednisone, and they work hard at finding alternatives that work (almost) as well. I hope you’re able to find something that helps without all the awful side effects.

    1. Hi Kyra. I’m sorry that you have this reality to deal with yet. It always amazes me when it is a fairly common drug that has these side effects. I’d like to think they could work out a way to medicate without such risks. It doesn’t seem to much to ask.

  2. johnrichardson2014

    First, with respect to your blog, I can’t say how much it has done for you but I’ve enjoyed it. Not at least because it has been though the blog I’ve gotten to know you. With all the problems that you have to deal with you are nevertheless a generous spirit with a kind heart. I’m glad to call you a friend. I am also pretty sure that through your blog you have helped many with some of the same problems you have had to contend with. As for your medicine I think it all comes down to the seriousness of the condition you are going to take it for and whether you can cope without it. Drugs are almost always good to avoid if possible but sometimes the conditions are so debilitating or painful that you have to accept the risk taking them entails. With your history that risk may well be enhanced. Make sure the doctor that prescribes the medication has a full understanding of your history. With the advice of a good doctor and sober reflection on your part I think you will most likely make the right choice. God Bless!

  3. Hello, I know the anti-smoking drug that you mentioned, I think the brand name is Wellbutrin and the generic name is Bupropion. I started taking Bupropion over 20
    years ago in order to stop smoking and I discovered that it improved my concentration.

    I still take it.

    I’m no fan of our inefficient and withholding privatized medical system and it’s willingness
    to throw pills at everyone because that’s whats cheap and profitable…

    However, when evaluating these drug profiles remember that the drug companies
    are required by law to report all adverse effects and contraindications.

    If one person out of a hundred thousand experiences an effect that is absolutely
    linked to taking the drug then it must be reported.

    Many of the drugs we take affect mood and affect including over the counter
    sleep aids and decongestants.

    In fact, many of the sodas currently on the market are strongly associated with
    mood swings, sudden death and kidney disease.

    The question is how likely are you to experience an adverse effect and that requires
    an honest discussion of the benefits and liability of taking the drug with your treating
    physician. .

    How many people currently take this medication?
    How many have suffered adverse effects or loss of life?
    Did they have a plan in place in the event of an adverse
    reaction?

    One way to protect yourself is to formulate a treatment plan with your
    doctor that includes daily monitoring of blood levels and mood.

    There are many ways to ascertain the potential value of this medication
    for the relief of your pain…

    I hope that what I’ve written makes sense and that it will be helpful to you.

    1. Hi Robert, thanks for that information. It’s really helpful. I have had a discussion with my doctor about all these issues and eventually decided to give the drug a try. It is what I consider a risk but that risk was outweighed by the possible benefits for me if the drug works. Only time will tell, of course. Thanks too, for the follow.

      1. My pleasure to follow you. I want to know how this turns out for you.

        There have been many times these past few years
        when I’ve had to weigh quality versus quantity…

        I can live longer in suffering or I can live a shorter
        more productive life with less suffering.

        These are hard choices to make and I think that
        those of us who have to make them need as much
        support as we can get.

        I genuinely want to know how this works for you. 🙂

        Good luck…

        Rob G.

  4. I just found your blog and read in the comments above you already made your decission. Hope it works out for you the way it should! But I felt like leaving a comment anyway, because I’ve been and still am in the same place regarding all the psychopharmacological meds I’ve ever been on and have been told to give a try after going off meds a year ago. Having never experienced anything but horrible sideeffects up to that day, I decided to stop experimenting with new meds and focus on therapy, a path my doctor was and still is okay with as long as I’m not developing otherwise uncontrollable symptoms (like, mania, psychosis, basically anything other than depression, mild anxiety and the like). My last therapist, a psychologist with exactly no medical background, wasn’t. At some point his reasoning got to me, therefore I considered giving medication another try. But… would the chance of some mild positive effect (since depression isn’t my single problem and meds usually don’t do too much in the way of teaching one to cope with late diagnosed aspergers) be worth the weeks and month to come beeing even worse than it already was back than? My vote was different from yours, I stuck with saying no to meds due to my prior experience and, with the help of my doctor, found me a new therapist, someone willing to accept my choice of the rocky, unmedicated road to recovery from depression and to build a new live for myselfe knowing about me beeing different.

    But even while I’m writing this (btw hoping my english skills are still good enough to be understood after years of barely using them other than reading books or watching movies) I’m well aware of the fact that this, my choice has to be reaccessed if and when something in my condition changes to any of virtually hunderets of possible negative directions. Even though this particular day today is one of the worst I’ve had in quiet a while now, I’m still feeling I’ve made the best choice for now. Hey, I’m gonna start a new job on friday, something that I couldn’t even imagine while beeing on meds – not just because of the severity of my condition itselfe back then, but as much due to the sideffects even those meds considered to be “mild” gave me over weeks and months. Anyways, who knows what comes next? I don’t. It might just be I’d write a whole different comment in a month to come, praising the upsides of beeing brave and taking the risk of sideeffects for all the upsides to be experienced from the right medication. Whatever it might be, the point I was trying to make in way too many a word, is: It’s always wise to make up your own mind and consider the up- and downsids of meds yourselfe, not just trusting in your doctors. As educated as they are, we are the ones to feel the effects of the medication they recommend and it never hurts to confront them with our own oppinion about it.

    1. Thanks so much for your comments (and the follow), Amy. You’re right I decided (eventually) to give the drug a go. I’ve been on it for two weeks now, but I am weaning onto it so it will be nine weeks before I am the full dose. No side effects yet but time will tell. I will stop it immediately if I have any problems with it but the chance that it might help my health was too good to not try.

      But you’re so right, we have to decide for ourselves what is right for us when it comes to treatment. Doctors can offer us one perspective but can’t offer us the whole picture.

      What you are doing sounds like a good move and it also sounds like you’ve given it plenty of thought. I really hope that it works out, and especially that taking on the new job is successful. How exciting! And hey, maybe you will be writing a whole different comment in a month’s time but you’re giving it a go, and that is such a good feeling. I strongly believe in the “one day at a time” philosophy. It works for me because even if it’s only a few days that a good, at least you’ve had those days. I really hope that you get much more than that. Good luck!

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