I am the outlier.

In research we commonly deal with outliers.

Pesky scores that vary wildly from the general sample. They don’t fit into the norm. Their very presence can compromise the dataset. In my line of work outliers generally signal one of two things; a participant with radical views, or someone taking the piss.

Best to get rid of the sucker.

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But recently I realised that I am the outlier.

I am the nuance that doctors dismiss, reject, or refer, or tell me bluntly “I don’t know what to do with you”.

I am the difficult patient who doesn’t fit into the medical framework. Who doesn’t present the way others do. Who doesn’t respond to treatment in the manner expected.

Pharmaceutical psychiatric treatment has little success with me. Antidepressants make me suicidal. Antipsychotics have never stopped the voices. Sleeping pills fail to put me to sleep.

I’m tested for epilepsy because my psychosis is ”abnormal”. I’m “high functioning” to the point of rejection from doctors and hospitals because I am not sick enough. I’m misdiagnosed. I’m turned away. I don’t fit the stereotype of ”bipolar”; whatever that may be. Then I fall down to the darkest, bleakest most dreadful depths and the doctors don’t believe I will be able to function. But I do.

I am the outlier.

I am diagnosed with a rare subform of a rare autoimmune disease that no one has ever heard of. Random allergies that make no sense. Hubster marvels how I can chow down a spicy curry no problem, but end up in hospital after a sandwich. I’m told I need medication, I’m given a poor prognosis. And now, undedicated with no treatment other than dietary changes I shouldn’t be in remission. But I am.

I am the outlier.

After years of trying to have a child, and seven or so early miscarriages under my belt I seek medical assistance. At first no one takes me seriously because I am not even thirty. Then, at 29 years old it is discovered that my reproductive years are ending. I’m to descend into premature menopause. This doesn’t run in the family.

I am the outlier.

Suddenly I’m being thrust into the world of IVF.. ‘I’m told I need to act now. I’m told I need high doses of medication. Friends my age spend their money on holidays and drinks. We spend our money on medical bills.

Then I start the process and am told my bloodwork is bad. That IVF isn’t possible. That it may never be possible for me.

I am the outlier.

And as I put my hands on my growing belly, knowing of the tiny heart beating inside, I know that you, little one, are an outlier too.

The one that arrived the very month when I was told it wasn’t possible. The one that came when I had all but given up. The one that blessed me with its presence naturally, the very cycle IVF was cancelled. The one I didn’t lose.

You are my little outlier. The most beautiful outlier there ever was. Every child is a miracle, but you are an extra special. You beat the odds.

Together we may not be representative of the population. We may have different needs to others. We may be the outliers.

But who wants to be average anyway?

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Hospitals, Procedures, and Coming to Terms with Having a Chronic Disease

It has been twelve months since I first started experiencing symptoms of Oesionphilic Gastroenteritis. Having this illness has taught me a lot, but it has also taken away a lot.
Much of the time like to put a positive spin on things. My blog is called “Finding my Sunshine” after all! But today is a day that I need to talk about the negative impact.

I was initially hospitalised because I was physically unwell, wasn’t absorbing my psychiatric medication so I became mentally unwell. In hospital they wanted to treat both issues.

I didn’t spend a week in hospital. I didn’t even spend a month. I spent FIVE months away from my family. Away from my life. That is a long time for anyone. But especially for a nearly four year old who needs his Mummy.

This is a short list of what I have been through in the last 12 months. There are probably things I have forgotten.

– 13 general anaesthetics
– So many CT scans, x rays and ultrasounds that I can’t even count
– an EEG
– a number of highly unpleasant examinations that I am not even going to go in to
– major abdominal surgery which incurred seven days on a surgical ward
– major complications with said surgery which almost sent me back into theatre
– 17 different medications. At the same time.
– A urinary catheter for around 6 weeks which was not only disgusting and humiliating, but led to me getting very ill from constant infections. It became such a problem that they were close to surgically inserting a catheter into my belly that would stay there for months.
– five months as an inpatient being tossed around between four different hospitals
– 10 rounds of ECT
– profound memory loss (there are still things I can’t remember from before, during and after my hospital stay)
– at least two injections administered against my will. There may have been more that I have forgotten.
– at one point I was basically living off medical formula
– surgeries and procedures that were cancelled on me at the last minute, after I had been prepped to move to the surgical ward. After I had been given enemas, drunk litres of bowl prep and undergone various other unpleasant examinations.
– two endoscopies and one colonoscopy
– months of morphine – both IV and oral. Because that’s not addictive at all.
– These days I can never see a doctor without them taking at least six vials of my blood. Today it was 11. I actually have a scar in the crook of my arm due to the enormous number of blood tests I have had. Which is actually kind of useful because I just direct the pathologist to that spot saving everyone time and hassle (I have “bashful veins”, and getting blood can be pretty difficult).
– appointments with immunologists, gastroenterologists, dieticians, psychiatrists, psychologists, general surgeons and various other professionals. I saw multiple doctors from each category.
– Nearing the end of my stay I was told that the nightmares, flashbacks and anxiety I was experiencing was due to PTSD. Trauma from being in hospital. This is not something I really talk about to people as I feel there are far more traumatic things (war, rape, violence), and I felt a bit of a fool to have been diagnosed with PTSD because of a hospital trip. But looking back it was fairly crap I guess.

I realized today that I used to be quite nervous about medical procedures and would go to great lengths to avoid any kind of treatment – be it medication or hospital visits.

Now I have become hardened to it all. I am so used to hospitals and doctors and having instruments stuck in various parts of my body that the procedures themselves do not bother me. Going to hospital appointments, seeing doctors is a pain. But it doesn’t scare me. It doesn’t make me anxious. It doesn’t really have an impact on me other than I would much rather be doing other things.

And I forget that it shouldn’t be like that. That I should be bothered. That kind of attitude actually isn’t normal.

This week I haven’t been well. I have had an autoimmune flare up.

And it all comes flooding back. I realize that I am stuck with this illness, for better or worse. I have an extremely rare, chronic, incurable disease that I have to try and manage every day of my life.

This illness has a big impact on my life, even on the days where I am feeling good. We live in a world where food is a very social thing. Not being able to eat with others, eat the same thing as others, share food with others can be isolating and frustrating. A simple thing like going to a café for lunch involves a lot of planning and consideration. Usually I can find one item on the menu I can eat. Then I need to worry about cross contamination.

But more than the inconvenience, I am so frightened that I will have a severe relapse. For us with eosinophilic gastrointestinal diseases it is not simply a case of avoiding my known allergens and triggers. My disease breaks and bends and morphs and what used to be tolerated well by the body can, without warning, put me back in hospital.

And if my body goes. My mind is sure to follow. If my body doesn’t absorb the psychiatric medication I take, I am at huge risk of bipolar relapse. The only medication that has been shown to be effective in treating my autoimmune disease causes severe psychosis.

I feel trapped. The enormity of my condition is becoming clear. I have seen firsthand how much there is to lose, and how quickly this can happen. I think I’m just realising that this isn’t going to go away. Why can’t it just go away?!

All I can do is keep my body in the best condition through diet and lifestyle, and take action at any early signs of trouble. This week as soon as I had symptoms I changed my diet to the blandest things possible. I started taking probiotics. I had acupuncture.

Today I feel better. I still can’t tolerate food very well, but I’m not in pain anymore. Maybe I dodged a bullet. Maybe in a few days I will be able to join my family at the dinner table. I just had this idealistic view that with a high maintenance healthy diet my illness was in total remission, and I had complete control. I guess this uncertainty is the nature of the autoimmune beast.

This post is different. No clear point. No photo. No attempt at humour. No time spent proofreading. No steller writing here I’m afraid.

Sorry, guys!

Go On. Judge Me.

Sometimes I see people at the shops, and I’m like “whoooaaa man. Nice parenting skills. Nice screaming at each other and making a scene skills. Nice that your kids don’t have shoes on their feet. Nice 80’s hair do.”

Then I’m like “Nice judgemental skills Rachael. Sheesh. Like you are so perfect.” And then I’m like “Yeah ok. I’m judging. I shouldn’t….but seriously…NO SHOES. WHAT. IS. THAT?!”

I need to stop, stop, stop it.

The thing is, what we see of other people is a tiny glimpse into their lives. Those mothers screaming at their kids…maybe they have had a really bad day? And by the same token; the perfectly well groomed mothers with their perfectly well behaved seven children…maybe pandemonium breaks out as soon as they get home. Maybe one of them will grow up to be a serial killer. Who is to know?

Regardless, if I had seen myself at the shops this morning I would have judged. Go on. Judge me.

I was wild haired with an expression of steel. Dragging a kid with his pants on backwards through the shops, the kid crying “Mummy! You’re going too fast!” I groaned when he said he needed to go to the toilet. I lost my rag with the young girl in the post office and went on a tirade that involved the phrases “This is ridiculous”, and “You’ve got to be kidding me”. I rolled my eyes at the older couple as they parked next to me. I swore in the car, and when Master D asked what was wrong I shouted at him to be quiet. I then got home, sat my kid in front of the TV, tossed him a bag of Tiny Teddies and popped a Lorazapam.

But ya see, that’s only half the story.

Master D’s pants were on backwards because he has just made the transition to independent toilet go-er, and sometimes, when he is so proud of himself for completing the task, I don’t have the heart to tell him his pants are on the wrong way.

I was dragging him because we were late for my passport appointment at the post office. We were late because my little angel decided to throw a fifteen minute tantrum that can only be described as demonic, five minutes before we were supposed to leave. Like he has been doing every single day since January the 1st, when he decided day naps were for sissies, sleeping in past five am is for the weak, and his new years resolution was to throw a wobbly each time one of his parents ask him to put his shoes on.

I groaned when he told me he needed the toilet because, when we are out, this is almost always a ruse. Whereas for me (and I imagine most people), using public restroom facilities is only something done under necessity and extreme duress, Master D enjoys the thrill and novelty of using a public dunny. When we are out he will always ask to go, sometimes in the most awkward of circumstances. I take him, he sits there pleased as punch, talking about the toilet paper and what the poor sod in the next stall is doing, then informs me that “the wee’s aren’t coming out.” But you just can’t take the chance that he actually DOES need to go, and risk an awkward puddle (or worse) on the floor. So, I took him to the Public Restroom of Wonder. For the record; he didn’t go.

I lost my rag with the young girl at the post office, because for reasons quite baffling to me, it has taken over three months for me to update my Australian passport.  I have been turned away five times for reasons including that I I haven’t got a “proper” marriage certificate (although it has served me just fine for every other purpose for my entire married life). Now I am annoyingly organised. I quadruple check things. I colour code my diary by event type and task urgency. My household chores are completed on certain days of the week. My spice rack is frigging alphabetised. HOW IS IT SO DIFFICULT TO COMPLETE A SIMPLE FORM?  Needless to say I was fairly unimpressed after waiting in line with a whingy toddler, for my fifth interview, proudly brandishing my new marriage certificate purchased at great expense from a courthouse on the other side of the city, only to be turned away because I didn’t have my BRITISH passport with me. Say what?

I rolled my eyes at the older couple because despite the fact that there were at least 100 bays available in the carpark, they chose to park right next to me, extremely close, and on the same side that I was trying to strap Master D in and handle the bags of groceries. I had to practically trap my arse in the car door so they could fit in their spot. Why? Why, I ask you?!

I swore in the car because some jerk pulled out in front of me, and when I get a fright, sometimes I involuntarily say “fuck”. I yelled at Master D to be quiet because I was in the process of slamming my breaks on and having a heart attack. Afterwards, I explained to Master D that I had seen “a duck!”. He didn’t care. He was too busy playing with Thomas the Tank Engine.

I don’t like putting my kid in front of the TV during the day. And I don’t like giving him sugary snacks. But sometimes you gotta do what you gotta do to keep your sanity. Yesterday he helped me make rice and almond milk, tzatziki, broccoli salad, and dairy free/wheat free brioche. Today he gets Tiny Teddies and TV. Knowing him, he probably preferred that latter.

I popped a Lorazapam because I’m in the process of withdrawal which is *awesome*. I’m trying to get off these meds, but thanks to the doctor who put me on a high dose, at a high frequency, for an extended period of time, when I didn’t have the mental capability to refuse, I’m kind of biologically addicted. I’m working on it. I’ll get there. One day I’ll figure out how to cut these tiny pills into tiny tiny pieces. But for now it’s kind erratic. I’ll take one, then three days later, burned from lack of sleep and panic attacks, I’ll cave and take another. Today was one of those days.

The one thing I cannot excuse was my hair. Unacceptable, obviously.

I’ll always remember a story I was told. A father was on the train with his three kids who were extremely hyperactive and badly behaved. The father sat there. He didn’t try and stop the kids from disturbing other passengers. A woman sitting in the booth near them was getting more and more irritated by the kids. She was just about to say something when, as if he had read her mind, the father leaned over to her and said “I’m sorry about the kids. They are upset. We have just come from the hospital. Their mother died today.”

There is always another side to the story.

The Controversy of ECT

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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.

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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?

The Medication Police

Every Saturday morning I  trudge down to the local pharmacy where my Pharmacist doles out my medication for the week. If I don’t take my medication or, presumably, don’t show up, my mental health team are called. At nearly thirty years old, as a mother and PhD candidate I can’t be trusted to take my own medication. There is an interesting story about that.

When I was first released from the hospital I had a team of mental health nurses visiting daily. One of the nurses, Lynda, was a middle aged, extremely chatty woman who said “fuck” a lot. You couldn’t help but like her. After two weeks I knew everything from the miscarriages she suffered as a young mother to the details of her menopausal symptoms. Her chattiness suited me as it meant I didn’t need to talk much.

One day she asked to take a look at my medication. Obediently, I went and got The Box: a large metal container housing all of my medications, which the Hubster occasionally took it upon himself to lock if I was in a particularly dour mood.

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“Hubster. Seriously. I’m having a bad day – I’m hardly going to kill myself.”
“Yeah well. This makes me feel better about things.”
“You know if I REALLY wanted to top myself I could just go and buy a load of painkillers, right?” I tried to reason with him.
“You can’t drive at the moment.”
“Ok. Well. You know if I REALLY wanted to kill myself I wouldn’t take pills.” I tried again.
“Why not?”
“Because overdose is a particularly risky….Gah! Why are we even having this morbid conversation?! The point is, I am allowed to be sad sometimes. I am allowed to cry. It doesn’t mean I am suicidal. And I don’t need to be treated like a child.”
“Ok. But I’m still locking the box.”

So it seems I have some trust to build.

Anyway, Hubster wasn’t the only one mistrustful of my intentions. Back to The Box. Lynda was half impressed, half horrified by the contents of The Box. My seventeen or so medications where in there, neatly organised by Hubster according to dosage and coded by expiration date.

“I’ve never seen anything like this! This is…shit…this is ORGANISED!” she exclaimed, pawing through my stocks.
“Yeah…Hubster did it because of the ECT…I kept forgetting what to take.”

“You have FOUR packets of Oxycontin in here”.
“Do I? Well at least I won’t need any more in a hurry…”
“Bloody hell. You must RATTLE,” She interjected.

“I guess?”
“Drake will have to see this!”

Now Drake I had heard a lot about. He was the head pharmacist at the State Psychiatric Facility, and the nurses tended to swoon about him. “Drake is so NICE”. “Drake is a LOVELY man.” Yes. I had to meet the famous Drake.

So the next day Lynda appeared with Drake and what appeared to be his small entourage. I was a little confused as to why the head pharmacist of the state wide psychiatric institution was sitting in my living room commenting on my medication, but hey, he seemed  impressed with The Box, telling me he was going to tell his other patients to organise their medications in a similar fashion. Hubster would be chuffed.

But suddenly there was some sort of intervention.

“You know we can’t let you keep all of this in your house, Rachael.” Drake said.
“Erm. Well. I’ve paid for it so -”

“It’s too much of a risk.” Lynda joined in. The rest of the entourage nodded.

“A risk? Well. I’m not suicidal. And besides,” I said, pointing at the lock, “Hubster can always lock it if needed.”

“We just don’t feel comfortable with you having this amount of pharmaceuticals in your home. You’re a smart girl. If you wanted to get in there you could.” Lynda pointed out.

“l hardly think so…I need Hubster to get the lids off jars for me. Besides, I’m not planning on being suicidal, so I really don’t’ think it’s an issue -” It would be far easier to just buy some more rather than getting all super sleuth and picking locks, I thought. But I didn’t say that as it would be marked down as “has a plan”.

“I’m sorry. But we really think it is best if we take this all to the pharmacy. They can give you your meds on a weekly basis.” Drake said.

“Hang on a sec! You were just saying how good and organised it was, and how you were going to tell your clients to manage their meds.”

“Yes, but most people don’t have the sheer amount of medication you do. And they don’t usually have multiple packs of high schedule painkillers and boxes and boxes of sleeping pills…aside from anything this is all highly addictive stuff Rachael.”

Well you were the ones who put me on it! I felt like shouting. But I didn’t. Because that would be marked down as “being unreasonable.”

So, obediently, I went down to the local Pharmacy with Lynda and handed over all of my medication bar my weekly doses and a few PRN, to be doled out every Saturday.

“I’m proud of you Rachael.” Lynda told me as we left. “Many people feel anxious about giving up their stockpile…their “emergency stash” Do you want a PRN Lorazapam to take the edge off?”

Bang. Head. Against. Wall. It wasn’t a stockpile. It wasn’t my “emergency stash”. I wasn’t intentionally collecting the medication that was prescribed to me.  It’s not my fault that I am on seventeen different frigging medications. I am NOT suicidal. I CAN be trusted. 

I didn’t say any of that though. Because that would be marked down as being “emotional.”

So instead I said. “Yeah. Well I guess it’s for the best. Lorazapam? Why the hell not.”

So every Saturday I show up to collect my weekly supply. I can’t take too many, I can’t take too few. The medication police are surely on my case.

I know my past. I know people want to protect me. I know there is probably some “Cover Your Arse” legalities out there that prevented me from keeping the medication. I know Hubster is scared of losing me.

But I hope that I will be able to gain back the trust of others some day.

The Unintentional Addict

Last night I was having a whinge about my pain levels/ never ending fever/ fatigue, because quite frankly it is getting incredibly annoying. By my intense Google research I have narrowed the reason for my general craptivity  down to:

1) a fairly normal responce to Autoimmune disease, or;
2) A very rare and potentially deadly form of Leukemia

Dr. Google is always incredibly comforting.

Anyway, so my Mum told me she had some “special mushrooms” that might be able to help me with my pain and fatigue.

This wasn’t exactly what I expected….

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Because really…what DO you expect when someone offers you “Special Mushrooms”? Even if it is your mother. And a naturopath.

The truth is, aside from my mother, no one has ever offered me special mushrooms, or any other type of illicit substance. I never had my opportunity to “Just Say No”, and on the few and far between circumstances where in a young and fancy free (ok. manic) state I asked my *connected* friends for a hit of something, their response was somewhere along the lines of “absolutely no way.” Everything I know about drugs has been learned via a combination of my “Substance Abuse 101” Psychology class and Breaking Bad.

Of course I drink alcohol, and I did smoke once (but that was a complete disaster which involved me taking a puff then collapsing in a coughing fit before shouting out “You do this for FUN?!”) I guess I was kind of a “good girl”. And lets face it, I don’t NEED drugs to get high or hallucinate. No, my bipolar brain can do that all by itself 😉

So how the hell am I an addict now?

I don’t smoke dope. I don’t shoot heroin. I don’t snort crack. I don’t even know if I am using the right vernacular and/or slang for these things. But I do medicate. Every. Single. Day. Of. My. Life.

And I do know what Morphine withdrawal is like. And Benzo withdrawal. And SSRI withdrawal. The best two words to describe all of these experiences is: Fucking Awful. Skin crawling, vomiting, dizziness, aches, fevers, Christ. I didn’t even want to take these drugs, yet when the withdrawal started I was practically begging my nurses for an Oxycodeine or two to soothe the pain. God knows what it would be like if you had a psychological addiction as well as physiological.

My unintended morphine addiction was one of the most difficult to kick. Especially since I was still in high levels of pain. I cut down and cut down and finally ditched the drugs then immediately had major surgery and hooked up to morphine again. Fantastic!

Even now, although I’m off *most* of the highly addictive stuff, I still take a colourful concoction of pills each day. My pharmacist and I are on first name basis. He gives me drugs, I give him money, he’s basically my dealer. I HATE that I’m physiologically addicted to a variety of substances. But I don’t have any choice. We’ve seen how me being unmedicated goes down.

Society approves the drugs I am on. Society PUSHES the drugs I am on. 1 in 4 of us take anti – depressants. My drugs are made in a lab in California  instead of someones backyard. But they are psychoactive – which means MIND ALTERING. Is being on a mind altering substance for years that potentially has serious long term effects on your health *really* any better than smoking a joint at a party? I don’t know.

I’m not glorifying recreational drugs, and I’m not trivialising addiction. “Real” hardcore addiction. In fact, the major thing I would like to point out here is that, although I am physiologically addicted to these medications, I DO NOT WANT TO TAKE THEM. I KNOW how difficult it is to withdraw from medication on a physiological level. Adding psychological addiction to the mix – I don’t know how I would cope.

But like it or not, I am still an unintentional addict to a mix of psychoactive drugs. Every blood test I have I wait for the news that my Lithium has screwed my Thyroid up and I will have to go on yet more medication. I panic if I run out of Lorazapam because I know I won’t sleep. There is no end date for my medication regime. Bipolar 1 doesn’t just get better. I know the nasty long term effects of my medication. But I take it anyway.

I never thought I would be chemically dependant. I never thought I would be an addict – even if it is unintentionally.

But, seriously, who does INTEND to be an addict? Do we sit down one day, and while contemplating the universe, suddenly proclaim “Gee… being an addict sounds all kinds of awesome. Now what will I become addicted to? What would tickle my dopamine receptors the most? Heroin? Coke? Food? Sex? SSRI’S?” Is that the way this works?

If so. Life achievement: Unlocked.

Cocktail Hour

I was discharged from The Dungeon yesterday, with a mighty bag of medications to last the next 2 weeks. Until I saw them all I didn’t realize how much I am on! It is nearly 8pm, which, to us mentally ill folk, is cocktail hour. So here is a brief lesson in psychopharmacology. Here is my cocktail.

Lithium 1000mg: wonder drug. Seriously. This drug has changed my life.

Desvenlafaxine: 200mg: antidepressant. Killer withdrawal symptoms if you miss even one dose.

Quetiapine 300mg: new wave antipsychotic which pretty much everyone seems to be on. 25mg used to knock me out…now 300mg won’t get me to sleep.

Movicol: to keep regular. This had to be the most requested drug in hospital.

Cephalexin: antibiotics for my 700th infection.

Pantopramozole 40mg: I actually have no idea what this is. I was told it would help “medications burning a hole in my gut”. Okay then.

Oxycodone 10mg: goodbye pain…hello euphoria!

Chlorpromazine 50mg: old school antipsychotic. The only thing that rid my hallucinations and got me to sleep.

Ordanstron: nausea relief. I have taken a lot of this over the past two months.

Tramedol: pathetic excuse of a painkiller. Doesn’t touch the pain.

And an (dis)honourable mention goes to……

Prednisolone: steroid and possibly the most evil drug I have ever taken. I hope I never receive a script for this again.

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It’s a Knockout!

Weeks of vomiting and diarrhea left me, not only a few kilo’s lighter, but malnourished – and perhaps more importantly – not absorbing the psychiatric medication I had been prescribed.

I have officially found out what happens if I quit taking the pills – and it ain’t pretty.

My head is so full it hurts. Voices are angry at me. A male voice in particular. I’m worthless, disgusting, a bad mother, a LIAR, an attention seeker. I need to kill myself. Others would be better off without me here. I’m a waste of space.

I know it is only my mind, I trust the doctors who say I am hallucinating…but the voices always come back and try to convince me that they are right, and everyone else is wrong. I sat in the hospital chapel a week ago, and apologised to the Lord (though I am not religious) for my misgivings. It was then that I saw The People for the first time. Sitting watching me. Judging me. They followed me back to the ward and I was scared to go to bed that night.

My thoughts zoom a million miles an hour. I feel like screaming. Sometimes I have this overwhelming urge to harm myself. Sometimes I feel nothing at all.

Now I am absorbing my food and medication again. But the medication I need for my gastric condition…infact the ONLY medication that will work for this incredibly rare condition has the side effects of mania, psychosis, depression and insomnia. Pretty much the most annoying side effects I could have right now.

These side effects are remedied through sleeping pills and higher dose antipsychotics. But I can’t take the optimal dose as the drugs will negatively impact my GI system.

The steroids also can burn a hole through your stomach lining. More meds for that.

They cause me to be immuno suppresed, the drugs impair my immune system so my body can stop treating food with an allergic reaction. But it also means I am vulnerable to catching any cold or illness that comes along.

I feel generally run down. My stats are crappy. Tachycardia, low blood pressure, fainting, weakness and low grade fevers.

I’m in pain, but they can’t prescribe me opiates as they will wreak havoc with my stomach. Unfortunately I have established that no pill at a non narcortic level is worht taking for this pain.

Of course I am affected by the side effects, so I am put on sleeping pills (which have a 50% chance of working), and stronger antipsychotics. But they can only give me a certain level of medication or it will start to negatively impact my oesionophilia gastroenteritis.

Full circle.

Sometimes it all gets too much. So I have trained myself to operate on a day to day basis. Some are good days, some are bad. But I have an 100% record of getting through bad days, so I have faith in myself.

I swallow down the rainbow pills…I fall asleep after breakfast. It’s a knockout!

All Mixed Up And No Place To Go

 

Another mixed state. That’s what my medical team are diagnosing my last episode. Partly psychotic, partly hypomanic, partly irritable. But I’m emerging now and that’s the main thing.

Today is the first day I have taken only one Lorazapam to dull my constant restlessness. I simply couldn’t sit still, my thoughts were racing a million miles a minute, but unlike my previous hypomanic episodes I felt irritable and annoyed. It was an intensely unpleasant experience.

So my meds have been changed, my Lithium increased, and I feel SO much better. I have switched seroquel for olanzapine. Both antipsychotics, but the olanzapine doesn’t zombify me. I wake up and feel like I’ve actually slept. I dont think I realised how tired I was until I came off the seroquel.

But there is still a part of me that hates the drug regime. Lithium, desvenlafaxine, olanzapine, lorazapam, seroquel, tamazapam…all for me? The pharmacists know me by name, and dole me out my plethora of pills in weekly supplies. I feel like a drug addict. When people ask if I have ever done drugs I just tell them I don’t need to. I get natural high’s and I get my pills for free at the pharmacy 😉

I will start cutting it down again, once I am full recovered. I’m grateful I have found drugs that work. It’s just sometimes I wish I could walk around without pills rattling inside me 😉

A recent photo of myself 😉

They say the episode was brought on by stress. Your body reacts to stress through chemical changes which can skew the happy chemicals in people like me. I don’t really care. I’m enjoying being able to sit down and actually write. To read a little. To not feel like running a marathon 24 hours a day.

And I’m ok. I truly am. I feel somehow that I had a negative energy that needed to be purged through this mixed state. And now the tears have dried, and I have room for positivity again. That black feeling in my chest has gone…and oh how wonderful it is to breathe.

How wonderful it is to be me again.

p.s. Did I tell you I finished my thesis draft? 🙂

 

Hello, Psychosis!

 

I have been waging a war for the past three months or so with my Seroquel. God I hate that stuff. It’s an antipsychotic whose main effect seems to be what I like to call “zombification”.

 

I have been on the stuff for almost a year now, and I suppose I have built up a tolerance to it. But I still seem to feel completely exhausted on it.

Don’t get me wrong, it’s GREAT for getting to sleep. The problem comes when the next day arrives and you feel as though you are positively wading through the day, counting the hours until bedtime.

So I’ve gotten into this completely stupid routine (not advised by my doctors either – when will I learn?). I will stop the Seroquel for a few days in the vague hope that I *will* get to sleep without it. I don’t. After three days or so I reach my limit, reach for the pillbox and reach for my pillow. And then I continue to reach for my pillow the following day. And so the cycle continues.

Anyway the other day Steven and David went out for a few hours. My plan was to get some quality work on my thesis done without David rampaging around the house. I sat down at the computer but started to feel a little funny. Funny strange, not funny “ha ha” – although I suppose it depends on how you look it. I started to tired. Normal. Dissociate. Normal. Hear voices chattering in my head….so not normal.

Yep that’s right. I started to hear voices. Chattering. Grinding their horrible teeth on metal. It was horrible, and peculiar, and horrible. Now I have experienced a lot of crazy things in the last decade or so, but I have never heard voices in my head. I started to feel alarmed, the voices were so noisy that I actually couldn’t listen to my own thoughts. Somehow I made it to my mums house, where according to her I staggered in shaking from head to foot, barely able to walk.

She was alarmed too. She had never seen me like that. Somehow I have managed to hide the nasty sides of my illness from the people closest to me (aside from Steven of course). I’m lucky in that I dip in and out of psychosis the way others dip in and out of shops. I’m never completely psychotic. I’ll have an episode, then recover. When my psychosis was out of control in hospital I refused visitors except for Steven.

Anyway she was alarmed and immediately called Steven to come home. She started saying she thought I needed to go to hospital which upset me. There was no way I wanted to go, and heaven forbid, get admitted again. How would I look after David?!

Steven came home and calmed me down, he coaxed me into taking some Seroquel and within about half an hour I was feeling much better. Yes, Seroquel is both my villian and my saviour. Friend and enemy. It makes me feel tired but brings me back to sanity.

I saw a psychiatrist who wasn’t sure whether sleep deprivation or the missed doses of medication were responsible for my momentary freak out. Either way I am back on the seroquel. Full time. Bleurgh. I figured as much as I hate feelings washed out, it’s sure as hell better than being immersed in a world of chattering people chomping on metal.

It’s been a while since I’ve had any *incident’s* and I was hoping I was completely stable. I guess I just need to come to terms with the fact that these sort of things may happen occasionally, but they are controllable, and I AM okay.