Ten Years Later, And I Have My Answer

This week was one of those rare weeks where I had planned (if not actually written) what I was going to blog about, and when.  Today (being 31 October here in NZ) I was going to tell you all about Halloween kiwi style.  Kiwi readers will about now be thinking to themselves “this will be Cate’s shortest post ever“.

They would probably be right and you’re just going to have to wait for that mind-blowing information of what happens at Halloween here.  Meanwhile I want to wish all those that are celebrating the occasion a whole heap of fun.  Especially my friend Eileen, who I know lives for this time of year. 🙂

Over the past months, I have mentioned at times that I was planning to come off a medication which I have been on for ten years, so that I would have some possibility of getting medication that would treat my fibromyalgia.  I had some anxiety about doing this because I’ve never been sure exactly how much that medication was doing for me (and an anti-depressant I was put on at the same time).  It was a chicken and egg thing, of not knowing whether the medication had made the difference, or whether it was simply the therapy.  Or maybe a combination of both.

I was a little apprehensive of what the result would be when the lithium was removed so consulted my psychiatrist a few months back.  He wholeheartedly agreed that I should try to wean off it over a number of months.  I did as he instructed (to the letter) and took my final dose on Saturday.  At that point, I had planned to post here about finally being free of that drug (which has quite a reputation), but I was so unwell with fibromyalgia that to post anything would have been completely beyond me.

It’s now Wednesday, and after a month of the lowest lithium dose I could take, followed by three days with no lithium, I know this much with certainty:

Lithium does this for me:

it keeps me alive and

out of prison!

That is no exaggeration, sadly.  For 10 years no one knew whether these medications were actually doing anything, but everyone was too scared to ‘fix what aint broke.’  Fibro made it necessary to find out what happened if we took the lithium away…    and now I know.  Thankfully, I had enough awareness of myself and foresight, to get some medical help fast.

Watching a car crash is never enjoyable, and can be of only limited use to those who must watch, and so I’m not going to go into the details of what happened, except to say that when I realised that I was at a point of considering either murder or suicide, I knew it was time to get help.  I was tearful, not sleeping, and verging on paranoid and delusional.

Thankfully I had the foresight to email my psychiatrist, to see if he thought there was any connection between my mood dropping through the floor boards and the final stopping lithium.  By the time he eventually got back to me (last night) I had taken some other, extra medication to calm me down, and I was feeling a little more rational and calm, although very doped.  He agreed that it was almost certainly the reaction to no lithium and urged me to start it again straight away, because it was clear that it had helped.  He also added that I would now need to stay on it for life.

Relief came first in my mind, because I knew I couldn’t possible live the way I had the last three days.  The disappointment that I wouldn’t be able to do what all this was about, get medication for fibro.  But mostly relief, because I know that in those three days I was heading towards prison and/or suicide, not to mention pushing away the man I love.  I don’t want any of those things to happen.

I need to be clear about something that is commonly misunderstood.  Yes, I take lithium (I started again last night) but I don’t have bipolar.  Most people, including doctors who should know better, assume I do have bipolar.  But any psychiatrist worth anything will tell you that in rare occasions lithium is also used to medicate severe, chronic depression.  That is why I was put on it in the first place back in 2002, when they had run  out of all other options.  Now I expect to stay on it for life.

Lithium has a pretty bad reputation (for a variety of reasons), and I know that it has already caused a serious auto-immune disease (Graves’ Disease) which I now have for life, regardless of whether or not I continue on lithium.  The auto-immune disease contributed ( along with extreme trauma) to the fibromyalgia, so basically I can put my physical health problems down to being caused largely by lithium use.  Still, lithium could cause more damage to my kidney function.  All that suggests why would I possibly want to be on this drug still?

Because it keeps me out of prison and it keeps me out of a grave.  That seems like enough for me.  For now, I have to build up my lithium levels back to a therapeutic dose, and until then I am lying low.  I need a bit of time out.

That said, my mind continues to click over blogging ideas so don’t be surprised to see more from me soon.  And I will definitely be posting on Sunday (4 November) for the BlogBlast4Peace event.  I wouldn’t miss that for anything, and if you’re not yet involved, it’s not too late (even if you are not a blogger).  Check out this to get details.

One final word

Just because I had an extreme reaction to coming off this medication, doesn’t mean everyone will.  And just because I have proven that this medication actually helps me significantly, doesn’t mean it will for everyone.  In my opinion, medication is a uniquely personal thing because each person will  react differently.  So what ever you do, do it in consultation with your doctor.  Social media (including this blog) is not the place to get reliable information on a medication’s suitability or otherwise for you.  What I have shared  is simply my experience, and nothing else.

“Listen to the people who love you.  Believe that they are worth living for even when you don’t believe it.  Seek out the memories depression takes away and project them into the future. Be brave; be strong; take your pills…  Reason with yourself when you have lost your reason.” 

―    Andrew Solomon,    The Noonday Demon: An Atlas of Depression

“I now know for certain that my mind and emotions, my fix on the real and my family’s well-being, depend on just a few grams of salt.  But treatment’s the easy part.  Without honesty, without a true family reckoning, that salt’s next to worthless.” 

―    David Lovelace,    Scattershot: My Bipolar Family

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17 thoughts on “Ten Years Later, And I Have My Answer

  1. Thanks for the Halloween shout-out, Cate. I do so love this time of year, but we’re a little soggy thanks to Hurricane Sandy!

    I know for me, lithium is a wonder drug. The few periods of time I’ve let my usage lapse have been debilitating and harrowing. But my body seems to metabolize the drug well. I’ve never had side effects (save the hypothyroidism) and I’ve never gone toxic. I’ve heard quite the opposite from others who got very sick on it. You’re absolutely right — it depends on the person and their particular body chemistry. I’m sorry that transitioning off of lithium was, like it’s been for me, rather nightmarish. But I’m glad you now have the knowledge you were seeking and can pursue your lithium treatment knowing it

  2. ^confident that it’s a necessary evil (?). I’m glad, too, (though not suprised) that you self-awareness and diligence kept you safe and got you back to the doctor in time. Take care and I hope you bounce back soon. I’ll be waiting to hear about Kiwi Halloween! 😉

    1. Thanks Eileen. Firstly, I hope you are safe and dry. I must one day look at a map to work out exactly where you are. But please stay safe and be careful out there if you get as far as trick and treating. :_)

  3. Boy! I know how hard that must be for you and also a relief. Not being able to work with different fibro meds must be a hard thing to swallo (pun totally intended) but at the same time, we are so often on many different meds without knowing if one or all actually help. As you said, doctors don;t want to fix what isn;t broken, so we take meds with little real sense of being sure about our meds. I am sorry that you won’t be able to work around fibro meds like you had hoped, but I am glad that you get to know that you do actually have something that works for your mental health. And I am glad that you are safe, having been able to realize (realise…see, I am learning!) that you needed what helped. Sending gentle hugs and a foot of snow! Have you seen my pics?! We are in a blizzard!!!

    1. Thanks RHC. I love that you’re learning to spell too. 😀 Can I take the hugs without the snow? It’s spring here and it would look a bit odd, but your photos looked great. Lots of love…

  4. i hope you are feeling ok while getting the lithium back up to the therapeutic dose. medication is so personal but at least you now know that it is working for you. proud of you for emailing your psychiatrist and getting help when you needed it,take care of yourself

    1. Thank fibrofella. COntacting my psychiatrist was the one thing I did right this week. 😉 I just saw your latest post in my in-box but haven’t got to reading it yet. I hope you’re doing okay and taking care of yourself too. 🙂

  5. I have tried to get off of certain medications as well and after weaning down to a small dose I almost went crazy!! I couldn’t get out of the house, my anxiety went through the roof, and I lived hour by hour. I would lay in bed and tell myself that if I can only make it to the next hour that I would be ok. I felt like I was going to die and really didn’t know why. My doctor put me back on the medicine and I went back to my “normal” self. I will never get off of that medicine every again. I need it to make me “normal”. It is an anti-depressant. I hope you are feeling much better. Blessings!

    1. Thanks for sharing that Ginger. Isn’t it amazing how a little pill can make such a difference to us? I’m slowly coming to terms with that. I certainly feel a bit more ‘normal’ now but it’s a bit of a slow road. I know you’ll know the feeling.

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