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)