Death By Chia Seeds

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So recently, in an attempt to get my physical health under control I’ve gone all uber health freak on my autoimmune disease’s ass.

Raw food. Yep. Quinoa. Yep. Gluten free. Yep. Cutting out all (ok. MOST) packaged foods, caffeine and alcohol. Yep. Making bread. Yep. Milling grains. Yep. You may mock, but it’s pretty much the only control I feel I have over my disease. And I don’t do well when I feel I have no control. AND I feel a whole lot better doing it. Physically the eosinophil infiltration in my gut have gone down. “Keep up the diet!” my immunologist told me. So I shall.

Anyhoo, so the other day I was really craving a chocolate milkshake, so decided to make the next best thing: a raw cacao and banana smoothie. Now I don’t have the best record with smoothies. Sure, they are super healthy for most people. But for me, no matter whether they are green, berry, banana, or cacao, I always seem to end up praying to the porcelain Gods for approximately 48 hours after consumption.

The smoothie of doom.

The smoothie of doom.

Did this stop me? No.

The recipe called for a large number of chia seeds, unsoaked, which was kinda weird. But hey, I’m all for trying new things.  I made the stupid smoothie. Took a sip, and almost immediately my tongue and lips started itching and burning.

Hmmm. That’s weird. I thought, trying to SCRATCH my tongue. Never had a tongue itch before. Then I turned the page in my book and in a rather regrettably cavalier fashion took another sip.

The burning got worse, and now even my ears started to feel like they were on fire. Clearly I like to live dangerously so I took another sip.

Then my tongue started swelling up, and I completely flipped out.

Oh my God! I’m having an allergic reaction! My airways are going to get blocked and I’m going to DIE! I randomly ran around the kitchen. Why. I’m not quite sure.

I tried to contact my Mum. Naturally when I called her number, I heard her phone ringing right next to me. Next I sent Hubster a message asking whether he thought I was having an allergic reaction. He suggested it might be hay fever (probably so not to panic me, which didn’t work because news flash: I was panicked). I gave up on Hubster. He wasn’t any use anyway as he was working in the city and I knew he would never get home in time to administer CPR or call a coroner or whatever it was that I was going to need.

I really didn’t know what to do. I have plenty of allergies/intolerances but they tend to affect my gastrointestinal system, not my mouth. So I sat back in an armchair and thought. So, this is how it ends.

Luckily at that moment my Mum arrived. Almost simultaneously my tongue swelling started to go down. I felt a bit silly for the terror I had felt, and was actually pretty glad no one was around to witness my freak out. With venom I chucked out the rest of my smoothie, and went upstairs to lie down.

Then the vomiting started. Then the unbearable pain. I cannot begin to even describe the pain I feel when I eat something I cannot tolerate. But lets just go ahead with BAD. Mum came up with a glass of water and I told her I think I had had an allergic reaction to chia seeds and begrudgingly admitted that I may need to see a doctor.

Just for future note. If you ever want to get in to see your GP super quickly tell them you are having an allergic reaction. They will tell you to go to hospital, but once you convince them that that isn’t going to happen, they will take you in immediately, and you will even get to go and lie down in a germ infested bed as opposed to the germ infested waiting room.

The first thing I asked for was a vomit bag. Then a maxalon injection. My GP came in to see me, the GP who knows ALL about my health troubles. And she was all “Hello Rachael…what have you eaten now?”

“It was the damn chia seeds!” I told her.

“Chia seeds. That’s unusual!” She said.

“Everything about me is unusual!”

They wanted to give me an anti-histamine injection but couldn’t because of the Lithium. Which is pretty much the story of my life. So I had to lay in the bed for ages under observation, listening to an old guy in the bed next to me getting some sort of abscess cut out of his ear.

I must have looked pretty bad at one point because I had the nurse and doctor hovering over me. And the nurse was saying “Rachael? Are you still with us?” I didn’t want to tell them that I was actually trying to meditate, the way I did in labour, to get myself through the pain, and their questions were TOTALLY DISTRACTING ME. So I just muttered a grumpy “Yes. I’m still here.”

After a designated amount of time, Mum and I left the practice, me barely able to walk and clutching the vomit bag. On the way home, without a whole lot of warning, I puked into the bag, which was all very well and good except the BAG HAD A HOLE IN IT. Now what kind of bag, with the sole design of containing vomit, has a hole in it?! I’m not sure I have ever vomited that much in my life. And believe me. I’m no stranger to the power spew. The holey bag was becoming a major issue.

Mum started winding down the windows and laughing (which she later told me was awkward laughter but at the time felt a trifle unsympathetic), and because I always get the giggles at inappropriate moments too I started laughing. It is almost impossible to laugh and spew at the same time. It was not a pretty sight.

We got home and since I was covered in vomit I was chucked out of the car to dispose of my vomit bag before coming in. I seized the opportunity to throw up in the hedge. I then spent the rest of the evening rolling around in agony and rushing to the toilet.

So, lesson learned. No chia seeds. No smoothies. And if your mouth starts getting itchy after eating, just stop (no matter how good it tastes).

Chia seeds 1: Rachael: 0.

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The Controversy of ECT

brainshock

Electroconvulsive therapy, or ECT, is a tricky topic. There seems to be a split between the small percentage of people who have experienced it (or have seen their loved ones through it) and swear by it, and the vast majority of people who think it is barbaric and unnecessary.

Before my recent hospitalisation, and even as a graduate psychology student, I was firmly in the “against” ECT camp. To me, anything that involved a general anaesthetic and the induction of grand mal seizures felt extreme, slightly terrifying, and yes, barbaric. In fact, I will admit that for a long time I thought it was a practice that wasn’t conducted anymore. It was one of those “Terrible Historical Moments of Medicine”. ECT was merely an entry in a dusty history book, alongside Thalidomide, heroin cough syrup for kids, and consumption of the honey coated cadaver, (yes, you read that right. I do not joke about honey coated cadavers), only useful these days for mockery by pre-med students and the occasional pub quiz victory.

I was wrong.

When I was hospitalised after the arrival of Master D I was offered ECT. I remember being completely horrified and telling my doctor, in no uncertain terms , that there was no way in hell that I’d be signing up for that kind of treatment. She held up her hands, told me no one was forcing me, but that ECT is very safe and has been proven to really help with my sort of problems. I told her no. She put me on Lithium. I recovered. And that was pretty much the last time I thought about ECT for a while.

Then I was hospitalised again. Now medication, with the exception of Lithium, has always kind of been a sore point for me, in that it rarely actually seems to, you know, work. Anti-depressants made me suicidal. Anti-psychotics were GREAT for spending the day in some half sleep haze and stacking on a load of weight, but they never actually stopped “the voices” I had in my head. I often have bad reactions to medication. Random side effects. My body gets hooked to stuff easily so once I am on a medication it is a complete nightmare to come off it. Lithium works. The rest, quite frankly, I could do without.

Anyway, my body’s general reaction to medication was further complicated by the tiny matter of me spending most of my time vomiting and/or running to the toilet, thanks to the good old Oesinophilic Gastroentoritis. The medication I was on wasn’t even getting the chance to make it into my bloodstream. I was seeing people who didn’t exist, dangerously suicidal, I had been in hospital for months, and was, quite frankly, a menace on the ward. Something needed to be done.

You know, I don’t remember discussing ECT with my doctor and family. I don’t’ remember signing the paperwork. I don’t remember anything about it. I have no idea how they got me into the “ECT suite” (which by the way is not a suite. It’s a scary looking operating room). I can only assume that the doctor offered ECT, I accepted telling him “Do what you want to me, nothing else has worked. Clearly I’m doomed.” And my family went along with it because no one knew what to do with me.

So I had ECT.

First unilaterally. Then, because that wasn’t working, bilaterally. And then – and this is quite amazing – I felt better. The voices stopped. The depression stopped. I felt, mentally speaking, okay. Within two weeks. Five months later I still feel better. Well, mentally anyway, physically things are still pretty crummy.

Of course ECT didn’t come without its problems. I suffered major memory loss for an extensive period of time to an abnormal degree. After ten sessions, my family made the executive decision to stop treatment.

“She is supposed to be doing a PhD,” my husband told the doctor “She is supposed to be doing a PhD and she can’t even remember the word for “carrot. This can’t go on”.” And everyone agreed with that. So we stopped treatment.

ECTmemory

I know my family hated seeing me go through ECT. They described me as looking like a “stunned mullet”, as I came out of the suite, one or two nurses holding me up as I staggered to the ward. Then I’d be all “Where am I? What’s happening?” Every other day they would have to sit down with me and patiently tell me the story again, where I was, what had happened. I would sit there in amazement. Asking question after question. “What do you MEAN I Have been in hospital for four months?!” It was like a bad dream. Soon my family learned not to tell me anything upsetting, as I would forget it within 48 hours when I had the next dose of ECT, and then have to go through the trauma yet again. We would ALL have to go through the trauma again.

Even now I’m not quite sure what my stance of ECT is. I no longer see it as barbaric or dangerous. In fact. I have learned a lot. Quite honestly, I feel I was safer having ECT in the short term than polluting my body with the seventeen or so medications in the long term. I certainly see the value in ECT, particularly for extreme cases, or for people where medication isn’t working. It worked. For me. It was tge best decision. For me. It also had consequences. For me.

But you know what. I’d do it again.

Certainly not for a minor blip in my mood. I would have to be pretty damn unwell to start considering ECT again. But I feel comfort in knowing that there is a tried and tested treatment out there should worst come to worst. Something that works, and works quickly  If it meant I was able to come out of hospital sooner, be with my family sooner, and avoid side effects and interactions and all the trouble you have when you are on a tonne of medication. If it meant that I would never have to go through, and put my family through, the hell that has been this year. Yeah I’d do it.

I hope I never have to. But I’d do it.

How do you feel about ECT? Hate it? See it’s value? Did it work for you or your loved ones?

Music and Me

There is a long standing, well documented connection between bipolar disorder and creativity. Indeed, while in hospital I met some people who were extremely talented and creative and artistic. I wasn’t one of them. 

I used to be creative. I sung, wrote music, played guitar and piano (albeit very badly!), and participated in various bands and choirs. I LOVED it. Music was a release for me, and it was forefront in my life. Then somewhere along the line I lost it. I became too busy for music, and lost my creative spark. 

I often wonder if Lithium was responsible for this change. A large number of people with Bipolar disorder refuse to be medicated because of the allure of mania and hypomania, and often the creativity that accompanies these states. I haven’t written much about my “highs”, but it’s safe to say they are generally pleasurable.

I’m not sick when I’m “high” (or “productive” as my husband and I call it…because let’s face it, no one wants to be labelled as “manic”). No I’m not sick… I’m awesome! 😉 I’m shouting from the roof tops and going to change the world. “Slow down, Rachael!” I hear people telling me. “Keep up!” I feel like shouting back. 

My creativity didn’t vanish during periods of depression either. In fact some of my favourite songs were written during very difficult times. It seemed even the dark moods were enough to elicit creativity. 

Perhaps then it was parenthood and the life I led, busy and exhausting, that diminished my desire to create. At the end of the day, when dinner dishes are packed away and my little boy is in bed, do I really have the creative energy left in me to write, or sing, or go to a music studio for a jam? Usually I am lucky to make it through a TV program without falling asleep. 

When I had the spark, and wrote music I had this bizarre belief that songs were floating out there, and you just had to be in the right state to reach out and grab it. I would write very quickly, words and chords erupting out of me, like it was just meant to be. When I finished writing a song, I couldn’t imagine it not being there. It was perfect in all it’s imperfections, and it owned it’s place within the universe – even if I was the only one to ever know of its existence. I have a large black book of songs I have written, most of them never to have been showcased to anything other than my bedroom wall. 

But there were some songs that did make it out of my bedroom. Quite a few years ago I used to get together with a good friend to write and record songs. He dealt with the music and production side, I did the vocals, and we both wrote the songs. Today, for the first time in years I listened to some of the songs – and the way that music so often does – many memories were evoked. I remembered the creative outlet I once had, and I missed it. 

Often I wonder how my life would be without Lithium, and I suppose recently I have had a sneak preview as to life without being medicated. My body’s inability to absorb Lithium and Seroquel and the rest of the vast band of medications I am on was rocky, unstable, frightening, and – frankly – disastrous. 

I hate that I am dependent on medication…but  I swallow down the pills, even if it is with resent. Many see Lithium as the enemy, zombifying and potentially taking away creative energy, flattening moods to only include the mediocre middle ground. I don’t disagree, but to me it’s a drug worth taking if it means I am there for my family. As a psychologist once said to me “it doesn’t matter how talented or creative or clever you are…if you keep having breakdowns and hospitalisations no one is going to want to hire you, and no one is going to be able to rely on you”. It’s a basic law of physics that what goes up must come down, and following a period of high creativity, productivity and mood I almost inevitably crash. To me, any potential crash that was as debilitating as what has just happened is not worth the risk of being unmedicated.

I do hope, and I do anticipate, that one day I will be able to go back to my music, my terrible guitar playing and limited piano skills. But for now I just listen to what I used to do, and I smile because I know that that creativity is locked away in me somewhere. I just need to learn a new way of accessing it, throughout the Lithium and parenthood and all the rest. 

“Here” is my favourite of the songs I co wrote with my good friend all those years ago. It makes me smile and reminds me of good times, when my husband and I were young and (relatively!) care free. If you feel so obliged you can listen to it here… on a site I had forgotten even existed. Enjoy 🙂 

Toxic

 

I’m fine, but I’m bipolar. I’m on seven medications, and I take medication three times a day. This constantly puts me in touch with the illness I have. I’m never quite allowed to be free of that for a day. It’s like being a diabetic.

– Carrie Fisher

Hats off to Carrie Fisher! I couldn’t have said it better. For me, medication is a daily chore. No different from brushing my teeth or making my bed. I’m on four different medications twice daily. I take up to ten pills a day.

 

I am bipolar in my attitude towards medication. On good days I will dutifully take my pills, thinking how much they have helped me. On bad days I will complain about them, how they make me feel flat, how they shackle my creativity, how they nauseate me.  Perhaps I’ll ‘forget’ to take a dose.  But it’s less of a choice and more a responsibility. A trade off between side effects and stability.  I have a little one to look after now.

After a night of violent vomiting a few weeks ago, I came to the conclusion that I must be suffering from lithium toxicity. It seemed the only logical explanation for my nausea, mood swings, and shakiness. My recent bout of illness and dehydration could have easily resulted in concentrated blood levels. It all made sense. Lithium toxicity can be serious, even fatal. My nurse was at my place to assess me within an hour of my phone call to the hospital.

I was told to stop the Lithium, and because I was worried (and because I was angry at the potential effect that medication had caused) I stopped all other medications as well. That was a mistake. I spent the weekend grumpy, depressed, and dissociating so badly that it was hard to walk.

When the blood results came back I wasn’t toxic at all. In fact, quite the reverse. My level’s were too low. So I restarted all the pills and quickly returned to my ‘normal’ (but really, what is normal? ;)) self.

How did my lithium levels become too low? Partly, I suppose, due to the IV fluids I was given during my recent hospital visit. But mostly, I suspect, due to my careless attitude towards the medication. Skipping a dose here, a dose there. I’m not crazy anymore. I don’t need that stuff.

I seem to hold a deep distrust in the opinion of the medical profession. Somehow I believe my limited knowledge on psychopathology and pharmacology is superior. Then I get upset when my  medication experiments backfire. Funny that 😉 Recently I have been seriously questioning my diagnosis. Am I really bipolar? Was I really that unwell? Perhaps it was all a strange dream. Now, while I am stable, I simply cannot believe I became that unwell.

I talked to both my psychiatrist and psychologist this week about this issue. I remarked to them that I felt like I was making the whole experience up. I can’t imagine feeling that depressed, or that unstable. I felt angry that I couldn’t remember aspects of my experience. But the recollections I had and others provided just didn’t seem like *me*. Rather than telling me to move on, that the past is the past and the present is the present (what I have been telling myself!), they both explained that I had been through a kind of trauma. Not the hospitalization itself, as my experience there was a positive one. But the very fact that I became so unwell and so unstable. I had assumed my inability to remember key parts of my hospitalization was due to being…well…mad 😉 I had also assumed my somewhat flattened affect and reduced emotionality now was medication induced. But both are apparently symptomatic of those who have experienced some kind of emotional trauma.

Now don’t get me wrong, I don’t feel traumatised. Not in the least. But I suppose that is part of what is going on. I don’t really feel any emotional response to what I have been through. It’s just something that has happened, no different to going to the shops for groceries. Apparently this will change, and my experience will become integrated with my sense of self.

Writing, talking to people, and my weekly therapy all help me piece together this puzzle of myself. It’s fascinating. I have learned more about myself in the last three months than I think I ever knew. I say now, and I will say again, that the experiences I have had (however apparently traumatizing they may or may not be) are one of the best things that have ever happened to me. I feel a confidence in myself that I never had before, and I have learned what is important in life. I’m happy being me, something I wasn’t for a very long time.

I assumed I had lithium toxicity when really it was the lithium I needed to become well. I assumed that a diagnosis of bipolar disorder was negative, when it resulted in an area of personal growth I may never have attained otherwise. It’s funny how something so potent, something so seemingly toxic can actually be the remedy.

 

Feeling Good

It’s a new day, it’s a new dawn, it’s a new life
For me.
And I’m feeling good. 

– Nina Simone

I knew something was going to happen because my eye kept twitching. Twitch, twitch, twitch for four days, like a ticking bomb. When I was in hospital the exact same symptom preceded my manic episode.

I didn’t even realise I was immersed in it until it was over. But let’s get the facts straight, this certainly wasn’t a full manic episode. I never lost touch with reality, I never believed to have magical powers. I didn’t put myself in danger.  To the best of my knowledge I didn’t irritate the people around me.  Infact, I don’t think even the people closest to me realised anything was any different to normal. Maybe it was the more discreet ‘hypomania’, which literally means ‘below mania’. Perhaps my symptoms were prodromal of mania. Perhaps it was just one of those things.

What I did experience was euphoria, and ideas, projects. Despite the fact that I was physically very unwell, I couldn’t sit still. I had to start these projects. The only thing was, while I was in the middle of one project, I would spy something else that needed to be done and would move onto that. My ordinarily organised life was becoming somewhat chaotic. Highly productive, but chaotic. I absolutely loved playing with my little boy, we laughed and laughed together. I felt confident in myself. I felt in control. I felt good.

Of course there were some down sides. I  started experiencing psychomotor agitation again. All the pacing, twitching, jogging that I remember from before. I had amazing problems sleeping. When I went to bed my body suddenly felt like it wanted to run a marathon. I would get so angry at this that I would leap out of bed at 2am, storm into the kitchen and take two or three times my normal dose of medication just to try and get some shut eye. Sometimes it worked, sometimes it didn’t. My thoughts raced, or sometimes I would just have one thought that would repeat over and over again in my head. I seemed to get bored easily, even when doing things I usually enjoy.

But all in all, it wasn’t an unpleasant experience at all. I think I enjoyed it. Nobody was hurt in any manner, and I did get an awful lot of things done. Does that make it ‘disordered’? Is it ‘symptomatic’? Or is it just pleasurable?

 

Why? I would say it was something to do with the fact that I was physically unwell. Lithium will only work if a certain level of the drug is maintained in the bloodstream. Too much will result in toxicity, too little will result in very little at all. This is why if you are dehydrated, such as during gastro, you need to stop taking the medication. I had fevers for a week, and became very dehydrated. I also took medication which interferes with Lithium. I suspect that my blood lithium level went a little awry and precipitated this experience. The lack of sleep would have further exacerbated the symptoms.

My ‘high’ ended rather abruptly one night in a rather humorous manner. I woke up in the night, sure that something had bitten my rear end. Envisioning all sorts of poisonous critters, I leapt out of bed, turned on the light and thrashed around trying to see what had bitten me. At 4am, Hubster was less than impressed, but still agreed to perform a thorough examination of the bed and my bum (have I mentioned that I love this man?). After, I lay in bed fuming. Now I had probably been bitten by something hideous, I’d have to go to the doctor AGAIN. Probably add another prescription to my collection. It was such a trivial thing, but I’d had enough!

Since then I’ve felt….flat. Certainly not depressed. But, it’s true, I miss the excitement and the euphoria and the energy. I miss being ‘high’.  The colours just seem to have faded. And as if for illustrative purposes, the sunshine outside has bleakened into rain. Hubster calls this ‘the crash’. And in a day or so I will be fine.

I still feel like I am learning so much from this experience. I still don’t feel like I know the first thing about bipolar disorder, and my bipolar disorder in particular. I’m trying to chronicle and examine and evaluate what I feel. I’m trying to make sense of everything. Is it ok to enjoy the ‘highs’? Isn’t the high part of the problem? How can something that feels nice be a bad thing?

The mind, and the mind-body relationship fascinates me. Perhaps one day I’ll be a step closer to understanding it all J

Lithium

 

I was against Lithium for a long time. I suppose I was tired of being pumped full of medications that never worked. Maybe I was scared of the side effects, and the risk of lithium toxicity. Perhaps refusing the medication was the last source of control that I had.  Whatever the reason, each time the doctors wrote it up for me, I would refuse to take it.

Lithium, to me, was a commitment that I wasn’t sure I wanted. Everything about Lithiu seemed to revolve around ‘Do’s’ and ‘Don’ts. Do: have regular blood tests, drink enough water, monitor for symptoms of lithium toxicity, take the medication with food. Don’t: stop taking the medication suddenly, take the medication if you have gastro, take other medications without checking to see if they interact, get pregnant.  And even if I did do all of this there was no guarantee it would work anyway. As it was, every single mood altering medication I had been prescribed during the past decade had been a dismal failure. I had lost a great deal of faith in the psychiatric profession and in psychoactive medication.

But more than this, I think  Lithium represented my last chance, a lifeline that I was scared of giving up. Every time things got bad, a part of me would think “well…there’s always the lithium..”. But if I used it up, if I took it and it didn’t work, then what?

But one day, of course, things did get really bad. I fell to the ground in front of the other patients and howled from the core of my being. I was quickly escorted outside and medicated. “I can’t do it”. I whispered to my nurse as she held my hand. “I just can’t do it. I’ve tried. I can’t keep going anymore”. I howled again, clutching my stomach in physical pain.

The nurse gently steered me into the doctors office. Emotional pain became physical paralysis.  They helped me sit down. I stared blankly into the distance. They asked me: “What is the doctors name? What is the day of the week?  What is the prime ministers name?” The first question I knew. The second I had to think about – every day is the same in hospital. The final question I struggled with. Was the prime minister still that woman? Who cares.

That night my nurse came to give me my night medication. Two lithium tablets were sitting in the little plastic cup. “I don’t know if I can do it” I said. She sat down next to me “Look Rachael, I saw you this morning and it was absolutely horrible. It was awful to see someone in that amount of pain. It must be awful to feel like that, and yes – all medications have their risks, but surely anything….anything… is better than feeling that way”. I knew she was right. I knew I needed to take a leap of faith and trust the people who were trying to help me.

So I took the pills. I think I was expecting some kind of revelation to occur as soon as the white tablets touched my tongue. The heavens to open. The stars to collide.  But no. It was just like taking any other tablet, and life went on as normal.

 

The thing about Lithium is that you feel like crap when you first start taking it. Even worse, my first blood test revealed that my blood level was below the therapeutic dose, so much to my annoyance my dosage was increased. I was prescribed Maxalon for the nausea, but it didn’t help much. Another girl at the unit had just started her Lithium too. We bonded over shared side effects, and fantasized together about refusing our doses (Anarchy in the MBU!) I honestly didn’t ever believe it work. Nothing ever had.

 

But that’s the thing about bipolar. Standard SSRI anti-depressants don’t work, not alone anyway. Best case scenario you have wasted your money. Worst case scenario they make you a whole lot worse – or even trigger a manic episode. I had been a worst case scenario.

 

To my utter astonishment only a few days after taking the lithium at the therapeutic dose I started to feel better. A whole lot better actually. At first I thought it was a fluke. But my depression fell away, my mood lifted, my agitation lessened, my anxiety disappeared. I stopped crying. I started laughing.

And then I had to sheepishly inform my doctor that she had been right all along. To her credit she never said ‘I told you so!’ 😉

The major lesson I learned from this experience is to never give up. I had come to the conclusion that nothing would ever work to help me. That I was unsalvageable. I had given up on myself, and I had lost all sense of hope. Yet the thing that helped me was staring me in the face all along. I’m not going to proclaim that Lithium was a magic cure. It’s far complicated than that. But it did help stabilize me to the point where I could begin to use the psychological strategies that I had been taught. And for now I take those little white pills each morning and evening. But only for now 🙂