Sunshine and Rainbows

Some women float through pregnancy like frigging goddesses. They eat healthily, look amazing, work until they go into labour and run the odd half marathon in their downtime. (Only a half marathon because, you know, doctors orders.)

I am not one of those women.

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Regular Saturday Night for me!

I throw up so much I have to be rehydrated intravenously. I am still finding stashes of vomit bags and Zofran in the most unusual places.

I eat whatever the hell stays down. Which mainly consisted of potato chips and baked beans.

I hobble around like someone who has ridden a horse for far too long. Thank you symphysis pubis dysfunction. I didn’t realise how bad it was until I dropped a bag at the shops and a beautiful lady with a perm and blue rinse picked it up for me.

My body itself attempts to reject the pregnancy. I bleed and contract and end up on medication and bedrest to try and prevent preterm labour.

In fact, I spend so much time in hospital that my health insurance company – clearly less than impressed with having to pay for in excess of 15 admissions – offer to provide me with a personal health coach to improve my health and wellbeing. At first I was all ‘hell yeah – free health support’. Then I made the disturbing discovery that all the models featured in the brochure had white hair and walking sticks.

I had been invited to geriatric fitness classes.

This was my new demographic.

Awesome.

Still, much to everyones surprise, I struggled on and on until 36 weeks. Then on a Saturday night I went into labour. Of course, since I had been contracting on and off for weeks I didn’t realise it was *actual* labour. So Hubster went to a bucks night and I popped a few Panadol and went out to dinner with some mums from the school. As you do.

The next day things were still on the ouchie side, but certainly not akin to my labour with Master D. And I had been experiencing similar pain almost daily for several months, so I wasn’t particularly alarmed.

Spoiler alert: I should have been alarmed.

Around lunchtime we called the hospital. I knew the drill. CTG and admission for observation. I packed my bag like I had done so many times.

But this time was different. The hospital was eerily quiet on a Sunday and I was the only woman in labour ward. This time I was dilating and they could not stop the labour.

Suddenly I was being prepped for an emergency c section and I was crying because I didn’t get my baby to the magic full term 37 weeks. And the doctors were telling me my baby would be taken away to special care because it was early. That my baby might be sick or have trouble breathing. And there were suddenly lots of people in scrubs around asking me weird questions like “have you been to West Africa in the last 21 days” (umm yeah. Just after I trekked the Himalayas). And I didn’t get the chance to stop my Lithium which can make babies floppy at birth. And I just didn’t think it would happen this way.

Less than four hours after calling the hospital I was holding our beautiful healthy baby girl. No special care needed. And aside from jaundice, and extreme sleepiness due to prematurity, no major issues following the birth.

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Then came my recovery. With a history of postnatal depression, postnatal psychosis and bipolar disorder I was considered  high risk for relapse and transferred to a mother baby unit following my discharge from the maternity ward. I was put on higher doses of medication and observed for a few weeks.

And you know what? I was fine. Despite all of the worry and the grim statistics. Once I wasn’t in constant pain and constant worry and threat of miscarriage or preterm birth.  Once the stress of the pregnancy was taken away. Once I was holding my beautiful baby girl and my family was complete. My mind was freed once my body was my own again.

My Master D has always been sunshine to me. The brightness in my life that has kept me going through dark times. But Little Miss S is my rainbow. Something beautiful that has followed an unbelievable storm.

Welcome my beautiful rainbow girl. You are so very loved.

 

 

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What if I say I will never surrender?

Well, hey there.

Here I am.

It’s been a while so I will play catch up tonight, before writing about the more pressing things I have had on my mind.

A large part of why I have not been writing is that I have been in the throws of fertility treatment (which really deserves its own special place in hell). In between hormones and appointments and stress I haven’t had the emotional capacity to write. Though, lord knows I have tried.

Over the past few months I have learned again and again, that my body is doing it wrong. I am running out of eggs. My immune system is killing pregnancies. I have endometriosis. Ovarian cysts. Polyps. “Doctors appointment” to me, is synonymous with “Doom”.

On the plus side I now know more about human reproduction than I ever anticipated. So ya know, if I ever get a chance to go on Who Wants to be a Millionaire and there happens to be a question on zygote development or hormone production; I may be in with a chance for the big bucks. Don’t worry. I won’t let it change me.

One of the more interesting aspects of my treatment is the intralipids. Basically once a month I go into hospital for the day to have an IV of some soy/egg concoction. I am banned from taking steroids (according to my immunologist) due to the whole rampant psychosis thing. So the intralipid treatment is another way to suppress my immune system to allow a pregnancy to progress. Apparently anyway.

Intralipid infusion. 20 minutes after the nurse 'tissued' me, and my hand blew up like a balloon (which sadly, I don't have a photo of).

Intralipid infusion. 20 minutes after the nurse ’tissued’ me, and my hand blew up like a balloon (which sadly, I don’t have a photo of).

I also had a laparascopy surgery to treat my endometriosis, which wasn’t too bad. I have a history of waking up like a wild combative beast after a general anaesthetic, so my anaesthetist told me she was going to sedate me before I woke up. It must have worked because when I woke up there was no sign of a struggle, and my nurse seemed uncharacteristically relaxed.

One thing that really struck me was how NICE the nurses were. I’m used to nurses barking at me or being profoundly unsympathetic. After my hernia reconstruction (which was a fairly large operation that I spent a total of 7 days on a surgical ward for) I had the audacity to ask a nurse for some painkillers. I was told – in a rather snippy tone – that I HAD to expect SOME pain, and was very reluctant to offer me relief. I was an involuntary psychiatric patient at the time, with my own psychiatric nurse, and I half wonder if she thought I also had some sort of substance abuse problem as well. But even if I did; 24 hours post open surgery you hurt. You need painkillers.

Anyway, this time, during the night after surgery I was in a lot of pain. I left it for about three hours before, out of desperation, I pressed the call button and waited to be told off. Instead this lovely nurse came, and looked at my chart and dosed me with oxycodene in a rather maternal manner. I promptly got high (which was odd as I used to take the stuff 3 times daily and never felt remotely stoned) and then fell asleep. My sheets were changed. I was spoken to in a respectful manner. I was given options not orders. I was not a psychiatric patient, nor was my psychiatric history deemed particularly relevant. I was treated better. It’s hard not to make assumptions.

Of course, things never run smoothly in our household. So a few nights after the surgery Hubster and I woke to Master D coughing in an exceedingly ominous manner in our bedroom. Seconds later he threw up. Fifteen minutes later he hurled again. Master D climbed into bed with Hubster, and in an effort of self preservation I escaped to the couch – because gastro after abdominal surgery? HELL NO. But the damage was done, and we all went down with a despicable, no doubt Kindy acquired, stomach bug.

In the middle of everything I started to feel very negative about everything. I felt like we had too much on our plate. I had too many appointments. Too many health concerns. Every week I seemed to spend most of my time in hospitals or doctors waiting rooms. I felt drained.

So when Hubster announced he was going to Sydney on business I booked tickets, packed bags for Master D and I, took some of my annual leave and went with him. It was the most wonderful week spending quality time with Master D, seeing the sights of Sydney, and getting the hell away from everything that was going on. Only marred by reacting to some food, getting sick, and then having dreadful anxiety problems. Because autoimmune diseases never take holidays.

When we got back I saw my psychiatrist who put my back on Seroquel for the interim. I hadn’t slept properly in weeks, was having constant panic attacks, and was getting more and more unhinged. The med change seemed to help and I began sleeping again and my anxiety has subsided somewhat.

So here I am again. Just about to start another round of fertility treatment. Fighting to keep my autoimmune disease and mental health stable. Juggling a plethora of appointments. Trying to fit in a full time PhD and part time work in the mix.

I’m doing ok.

Each day at a time.

It takes a lot for me to surrender.

Dungeons and Doctors

It has only been recently that I have realised just how much I now mistrust doctors, and how little faith I have in the medical system.

I am the worst kind of patient. I spend hours trawling through medical journals before appointments, comparing random control trials. It must be the researcher in me.  I project my point of view in a fairly assertive manner. I am not afraid to ask for what I want. I am not afraid to offer my view on the treatment protocol and dosage. I don’t want to be told “you’re fine”, or “you’re not fine”. I want to be given print outs from all my tests and all my procedures  and given my exact blood levels so I can determine for myself my exact level of “fineness”.

I, with absolutely no medical training, believe I know more than doctors about my body and mind. And I really wish I could dampen this line of thinking. I wish I could trust the people that are responsible for my care. I wish I didn’t question every damn aspect of my treatment.

But you see, my past experiences have made me this way. Over the years I have had to learn how to navigate the medical system.  I am used to having to fight tooth and nail for the treatment I need. I expect to be dismissed. I expect to be turned away. I expect to be denied treatment. So I arrive at each appointment on the defence and ready for battle.

Amongst other nitwitish behaviour, I have had the privilege of doctors telling me that:
– I was just a new mother who needed a bit of sleep. Actually I was psychotic and suicidal, and had just spent 45 minutes describing my symptoms in detail to the doctor. My baby was seven months old and had been sleeping through the night for at least five of them. A week later I was admitted to a mother and baby unit where I was kept for 2 months. The hospital told me I was one of the worst cases they had seen.

– That I had a case of gastro, and perhaps some endometriosis pain. I was actually in agony due to my autoimmune disease. And when I say agony, I mean that I had to be tanked up on IV morphine. I feel this instance is partially forgivable since my disease is so incredibly rare. But surely the fact that I was screaming in pain and had to be administered morphine was a clue that this wasn’t a case of “normal” gastro, and warranted further investigation.

– When admitted to the psychiatric ward, I was initially refused treatment for my autoimmune disease. Apparently, despite having a formal diagnosis from biopsy results from another doctor, and despite my diagnostic doctor giving explicit written instructions on the type and dosage of medication I needed, my 25 year old registrar didn’t believe my condition existed as she hadn’t heard of it. Bitch, please. My specialist with decades of experience hadn’t heard of it until recently. And despite the fact that I consider myself a reasonably intelligent person I highly doubt I could fabricate such an elaborate diagnosis involving the infiltration of certain white blood cells.

– as a psychiatric inpatient, my gastroenterology team continually avoided seeing me. My nurses called them repeatedly. It was made abundantly clear that I was their least priority. I dunno. Maybe I smelled?

– as an inpatient my surgical team repeatedly prepped me for the surgery and procedures I needed, before cancelling at the last minute. I understand hospitals are busy places and things get bumped. But I was an inpatient at that hospital for 9 weeks, and each time I was told I was at the top of the list. To this day I am not sure why I wasn’t given the treatment I needed and why I eventually had to be referred to entirely different hospital to receive it. And how that hospital managed to conduct the surgery on the day and time they said they would.

– I was explicitly denied nutritional treatment because I was a psychiatric patient. Even though my autoimmune disease is heavily related to diet. They did tell me that if I were on a medical ward I could receive the treatment. Which didn’t improve the situation. Or my attitude towards them.

– I was left in severe pain, for eight hours, because an the on call doctor basically couldn’t be bothered to come down to the psych ward. When he did arrive the next morning it eventuated that I was actually extremely ill, and was rushed off for an emergency CT scan. Not a hypochondriac after all!

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I believe the core of the problem was that I was a psychiatric patient.

When you are a psychiatric patient you lose your voice. You lose your power. You are considered to be “crazy”. I was in a no win situation where I was given poor and sometimes downright neglectful medical treatment, but if I tried to object I was seen as over reacting, or causing trouble. I was “not in my right mind” after all. What the hell do I know? If I objected,I was medicated, because that’s what happens in psychiatric wards. And if I objected to that I was threatened with injections and security guards. I was silenced.

This would not happen to someone with a physical illness, and a physical illness only.

I often feel sorry for my newer doctors today. The ones who have done nothing wrong. The ones who are incredibly helpful and supportive. The ones who listen to me. The ones who are being punished for the actions of others.

But there is just this large part of me that refuses to hand over my trust to them. I NEED to be in control over my care. I never want to be in the powerless situation I was last year.

I just have this overwhelming feeling that to ensure my own wellbeing I need to keep fighting these Dungeons and Doctors.

I did it! And I didn’t CoC it up.

I’ve been distinctly absent from the ‘blogosphere’ over the last few months. It has been an interesting ride.

So I went back to the PhD and within the first six months you have to complete what they call your “Confirmation of Candidature” (or CoC as we PhD’s call it. Hubster, being the mature adult he is thought our term CoC was hilarious. It all started when I accidentally sent him an email meant for my supervisor where the first sentence was: “I’m concerned that my CoC is too long. Can you please give it a look and see what you think”.)

Anyway. I didn’t realise  the CoC it was such a big thing (heh.) until I would tell people in the office what I was doing and they would be all “Eeeee” with a strangled look on their faces, before regailing me with some kind of horror story from their own CoC. Then they would try and save it by saying “Oh, I’m sure you’ll be fine though.” Kind of like the last weeks of your pregnancy where everyone around you seems to have had a near death experience during labour.

So what is a CoC?. This is basically where you complete a long literature review and research proposal on your topic. Mine is a few thousand words off my Honours thesis. And it is pure blood, sweat and tears. Literally. I gave myself a paper cut on the damn thing.

So after writing the document you then to do a big presentation to the research board, all the faculty and grad students within the school attend as well. You yabber on about your topic and then everyone asks questions. There are three outcomes of this. You get through and are now officially a PhD Candidate. You get kicked out of the PhD program. Or you are asked to make some changes and once they are done you get through.

So basically I have been working full pelt on this stuff. Hubster and I were basically a tag team. I worked weekends for extra time. It was hard not spending time with my family, especially after I was away so much last year in hospital. I felt I was being pulled apart in different directions (the way, I’m sure many parents feel). It has not been easy.

One of my more relaxing Sundays…:)

One of my more relaxing Sundays…:)

Firstly, I had six months to complete this milestone. Problem is I completed three months. Got sick. Ended up in hospital forever. Had ECT. Returned in January to realise that because of my short term memory problems associated with the ETC…I HAD FORGOTTEN IT ALL!

The horror.

So I basically had to start again. Reread all these notes and diagrams I had made and try to make sense of it all. I now, basically, had 3 months to complete this task.

But of course, I have a three year old. I have very limited childcare. I was trying to achieve in three days a week, what other people achieve in five. Which is why I gave up and started working weekends, grabbing any extra time I could.

Then of course, I have two chronic illnesses that like to make themselves known occasionally. I have had flare ups. I am under the care of four different hospitals and have appointments with each. More time down the drain.

All in all it was a bit of disaster, and at times I felt like everything that could possibly prevent me from doing this PhD was happening. Maybe it was a sign? Maybe I should just give it up.

But one of my greatest assets and sometimes biggest downfalls, is that I am incredibly stubborn. I persist until the bitter end. I ignore people who tell me that is ok to give up. This can be a good thing, or a very bad thing.

So I continued. I worked my arse off. I took on board every ounce of feedback from my supervisors. I wrote a document I was damn proud of. I spent ages designing my presentation and then practicing it over and over again (alarming fellow grads who walked into the office to find me talking to myself). Then the day before my presentation, I stopped myself. I had done enough. There is nothing more I can do.

On the morning of the presentation Hubster very kindly made me breakfast and took Master D to daycare. On the way out he waved and called out “Don’t CoC it up!” Then I went….and I did it.

I stood up in front of all these academics that I greatly respect. The entire school. The research board. And I told them why I think we need to address mental illness stigma in the community. I talked about the complicated theoretical backing behind my design.  I told them how I wanted to achieve change. And, it really surprised me, but I loved doing it.

And I got some awesome feedback. My study design was “fascinating”, and “well thought out”. There were a few questions, but nothing major, and certainly nothing intimidating.

After I returned to my desk and found email upon email from people congratulating me which was so sweet. After the presentation the board have a big meeting to determine whether I am able to continue with my PhD (until you have achieved this milestone you are probationary). This process can take up to a week. I have heard it taking up to a month.

Within ten minutes I got a phone call saying that I was through (informally). A few minor budget adjustments and then I’m set to go.

I don’t often say this, but I am really proud of myself. After everything that has happened…I went back. I achieved what I wanted to do. I stuck with it. And from what everyone has been telling me…I did damn well.

My supervisor told me that a lot of people would have given up in my circumstances. And no one would have blamed them.

But I didn’t give up.

I did it!

This whole thing has been a confidence booster. And not just on the academic side.
I have proved to myself that I can fall down hard… and pick myself up again.

A year ago I was hooked up to a urinary catheter, in a psych ward, under involuntary status, pushing around an IV pole. I was completely dependant, psychologically and physically. I couldn’t even pee on my own.

A year on and I have learned to manage both of my illnesses. I get up every morning. I sleep every night. I earn an income. I achieved a major body of work. Hell, I can even pee by myself.

I did it. I came back. I have rebuilt my life.

And I didn’t CoC it up 🙂

World Bipolar Day, Questions and Answers

Today is World Bipolar Day. A day to raise awareness of this illness, and reduce stigma. Well, you know me an my feelings on stigma, so when I saw that the lovely Blahpolar and Raeyn from the Scarlet B both completed this questionnaire in light of World Bipolar Day, I thought I would join in. Check out both of these awesome blogs, and feel free to complete the questionnaire yourself.

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1. What does bipolar disorder mean to you?

I always see bipolar disorder as a lack of balance. I swing one way, then overcompensate and swing the next. Living with bipolar disorder is a quest to maintain that balance.

2. What was your life like before you were diagnosed with bipolar disorder?

Turbulent. I’m lucky in that I don’t tend to rapid cycle. In fact I can go months or even years without a full-blown serious episode. This may sound positive, but it means that when the shit does hit the fan it is basically a shitplosion that takes months to clean up afterwards. In between major episodes, before diagnosis, was constantly anxious, mild to moderately depressed and sometimes self harmed. Oh and I heard voices. Every day of my damn life.

3. How old were you when you were diagnosed?

I was 26 when I was diagnosed – less than a year after the birth of my first child. I was an involuntary patient at a mother and baby unit and had been for around six weeks. My medical team suspected bipolar disorder because of the extent of my depression and psychosis. They actually thought I was having a mixed state as I was completely wired. But I didn’t talk much and they couldn’t get a full medical history out of me. Also I really didn’t know that the periods of high energy and not sleeping in my past were hypomanic/manic episodes so never thought to mention it.

Then one day in hospital I woke up and wouldn’t shut the hell up. Seriously. Unsuspecting trainee nurses would be lured into listening to me rabbit on about completely random nonsense before they could say “It’s a trap!”. I proclaimed  that I was cured and felt so good. Then things started to get weird… I started going on about how I had superhuman powers because I didn’t need to sleep (oh. if only), and that my dreams could predict conflict in South Korea. Round about the point where I told Hubster I wanted to dance around outside naked my doctors slammed their clipboards shut. “Gotcha! Bipolar Disorder! Kaboom.”

Good job team! It only took 10 years to get a diagnosis 😉

4. How do you manage your symptoms?

Day to day, week to week, sometimes hour to hour. I take medication. I see my doctor regularly. I try to limit stress. I watch my diet. I write. Hands down best treatment I have had was ECT. It may have its controversies, but I now no longer hear voices every day. Which gives me so much more time to ponder world peace and what to watch on Netfix.

5. What is life like for you now?

Interesting. I’m not sure really. I’m recovering from pretty much the worst episode of my life, so I’m a bit anxious about my mood. I analyse every up and down and if I have a bad day it’s all “HOLY CRAP IT’S COMING BACK!”. I’m like a mood meerkat. Since ECT my psychosis has gone which is awesome. But I still have to work really hard to keep my mood stable.

6. Has having bipolar disorder affected your friendships, personal life, or professional life?

Undoubtedly. Friendships – not so much. The people in my life who choose to have a problem with an illness I do not choose to have are no longer in my life.

Personal life – yes. I would agree that being separated from my family for months while being in hospital had a distinct negative effect on my personal life.

Professional life – yes. It took me years longer to finish high school and university due to episodes. I had to suspend my PhD months after starting, and I had to cancel a presentation I was due to present at a conference because I was in hospital.

7. How do you think society treats people with a mental illness, especially bipolar disorder?

Not great to be honest. I think society has more understanding than say, the 1950’s, where we all got locked up in an asylum. But there is a lot to improve on. I would like mental illness to be treated with the same respect as physical illness. It frustrates me that I knew nothing about World Bipolar Day until I came on WordPress. Nothing in the news. Nothing on Facebook. Nothing on the radio. But when it is, say, a day to recognise Diabetes, it is so widely promoted and respected. Mental illness kills too! (Also, I’m not dissing Diabetes. It is a serious illness – and I, myself, have a physical illness too. This is just one example of how mental disorders are looked past within the general community).

8. Have you ever felt discriminated against or looked poorly on because of bipolar disorder?

Yes I have felt discriminated. While I was in hospital I was denied treatment by dieticians because I was in the psychiatric ward. But apparently I could access this treatment if I were on a medical ward. Yeah. Doesn’t make sense to me either.

I was also left for 8 FRIGGING HOURS in severe pain on a psychiatric ward, with the nurses calling every half hour for a doctor to assess me. When he finally came it was evident that I was ACTUALLY really sick (and not just making it up), and suddenly everyone was rushing around and I was having an emergency CT scan. I get that hospitals are busy places. But you don’t leave someone in severe abdominal pain, without assessment, for 8 HOURS, when even the nurses are extremely concerned. I wouldn’t have been left that long if I presented to the ED. And when I have been on medical wards and in severe pain I have been seen to very quickly. Good job I wasn’t having a heart attack, because I would have been dead by the time I got any help.

And yes I have felt that I have been looked poorly on because of bipolar disorder. I think a lot of it comes from a lack of understanding. But it still hurts.

9. Do you have any words of advice for people in the world suffering with bipolar disorder, or other mental illness?

Seek help when you need it. Don’t do what I did and struggle on until you are hiding in bushes and convinced the police are after you. Don’t be the bush girl!

Reach out. To anyone you can – friends, family, doctors, hospitals, help lines, bloggers, anyone. You are important. And you are not alone.

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!

He Loves Me

He loves me.

He loves me even though I have a diagnosis of Bipolar disorder.

Even though I’m not great with the whole “mushy” thing, and generally show my affection through sarcasm and teasing.

Even when he found me on the bathroom floor covered in blood.

He loves me even though I mock his beard and continually enquire as to when he is going to enter Whisker Wars.

And even though I changed my ringtone for him to “I’m Sexy and I Know It” by LMFAO. And when he complained, changed it to the Star Wars “Imperial March”

He loves me when I’m manic. And I call him up at some ungodly hour from the hospital. To inform him that I am going to bake a cake.

Even when I was psychotic and began to believe that he may actually be a criminal mastermind.

He loves me when I have to cancel the “date night” we rarely are able to have because I have had an allergic reaction to something.

He even waits outside the toilet with a glass of water.

He loves me even though I fall asleep during every damn movie we watch. Then he patiently restarts it the next night and asks me “what is the last thing you remember.” To which I reply; “I don’t know. I was asleep!”

He loves me even though I have scars, and stretch marks, and a post childbirth body. He says he loves me even more.

He loved me on the days I couldn’t get out of bed. The days I told him I couldn’t keep on living.

He saved my life. More than once. And he didn’t stop loving me.

He loves me even though I sing “The Thong Song” every time he mentions his Cisco qualifications.

He loves me even when I ask him inane questions. Like “If you had to sleep with either Susan Boyle or The Queen who would be the lucky lady?” And he will be all “neither.” And I will say “You have to choose. Or the world will DIE.” And this happens most days.

And also when I strap a garden gnome in his car, or tuck it into his side of the bed, or sit it on the toilet, and then upon discovery gleefully tell him that “he has been Gnomed!”

Even when I have been frogmarched by security guards.

Even when I forgot pretty much everything after ECT.

He loves me even though I veto his music choices on car journeys.

He lets me put on my playlist.

And doesn’t complain.

Much.

In the ten years we have been together I have spent a total of eight months in hospital, had at least 3 manic episodes, a handful of mixed episodes and countless depressions. He knows Bipolar disorder is episodic. That it may happen again. He still loves me.

He tells me every day he loves me. And every night before we go to sleep.

He loves me.

Me.

And I’m the luckiest girl in the world.

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On Confidence: Wearing a Witch’s Costume and Owning It

When I was about seven, we had our annual school concert coming up. Now, you have to understand, these concerts were HUGE. Our school was big on the performing arts, and had a theatre so large and sophisticated that it was routinely used for community events. Our annual school concert involved performances from every grade, and every parent, grandparent, or associated family figure came to watch.

Anyway, somehow I got it into my head that I needed to dress up as a witch for our performance. To be fair, I think the song was about a witches cauldron, so it is (a vaguely) a plausible conclusion. It may also be that we were told to “dress up”, which presumably meant to look nice, but for me somehow translated to “dress up as a witch”. I was also a bit of a “show off” as my family fondly remind me, who loved to sing, perform and dress up. Once, during a particularly solemn and quiet part of a catholic wedding ceremony, I asked my father whether I should get up and do a dance in the aisle to entertain everyone. So, it is also entirely possible that I just wanted to crack open the costumes.

Luckily for me we lived in a small town in Norway, in a community which, due to the oil industry and resident NATO base, was largely American. In line with American tradition, Halloween was one of the biggest events of the year, and consequently I had every Halloween costume you could imagine. Including (drum roll here) a witch’s costume.

This costume was fairly elaborate. Head to toe in black cloak. A waist length grey streaked black wig. An enormous pointy hat. And the crème de la creme, a prosthetic warty hook nose. As I got dressed on the day of the concert, I looked, if I do say so myself, pretty frigging amazing.

We drove to the school, and to the absolute horror and dismay of my parents every single other child was dressed in their Sunday best. White shirts, black pants, fresh clean faces, polished shoes. And then me. The witch with the prosthetic nose.

My teacher saw me and came over and without batting an eyelid said. “Oh wow! Look at you! You look great!”

Mum, dying inside, hurridly said “I’m so sorry, there must have been a misunderstanding…I’ll take her home get her changed!”

My teacher, being the laid back, chilled American woman she was, waved her hand “Oh no, don’t worry about it. Look at her! She looks awesome!” before breezing off to greet someone else. To be fair. I did look awesome.

So that is how I ended up on stage at the annual concert dressed as a witch.

I sung my little heart out, beaming from ear to ear. I was as happy as a king (or, ya know, a witch) and seemingly completely oblivious to the fact that I was wearing slightly different attire to everyone else. Halfway through the performance, some backstage guy came up to me and told me to take my hat off because they couldn’t see the kids behind me. I was cool with that. I mean, I still had the wig.

For my parents, in the audience, it was slightly different. As my class trooped up on stage there was lots of murmurs and whispers, and then a little girl voiced what everyone else was thinking: “But why is that girl dressed as a witch?” Sadly I don’t have a photo I can show you of my big moment. It is one of the great tragedies of my childhood that my parents didn’t take a photo or video of the event.

On the way home my parents tentatively asked me how I thought it all went. “Oh it went well.” I told them. “But I was the ONLY one who BOTHERED to dress up!”

And that, my friends, is confidence.

A decade later, I lost all confidence completely. An angsty teenager, with a diagnosis of mental illness. I was so concerned with my image, what people thought of me, whether I was “good” enough. I used to call my friends before going out to check what they were wearing. Change my outfit about a million times, and then still feel like crap when I went out. Although I knew the answers, I was afraid to speak in class, purely because I didn’t want to bring attention to myself. I analyzed the behavior of others to a ridiculous degree. Were they talking about me? Do they like me? Have I done something wrong?

This anxiety about life went on for a long time. I strived for perfection, but never seemed to achieve it. Each award I won, opportunity I received, I was sure that it was a mistake and I was some sort of imposter. When I was offered a PhD scholarship, I kept thinking of reasons why the board had made the wrong decision. I got incredibly nervous talking to my academic superiors, and expressing my views and ideas. Because they were talented and had spent decades in the industry doing amazing things. What could I, a lowly research student, possibly add of value? I hated my body. I felt completely inferior to every human being on earth. I was frightened to complain about service, to make phone calls to unknown people. I let others walk over me. It probably didn’t help matters that I was constantly hearing voices that told me I was inadequate and “bad”.

Last year, after being released from hospital, I just kind of gave up on it all. I had been in hospital for five months, I had a serious mental illness, I had had ECT, and EVERYONE AREOUND ME KNEW. I wasn’t perfect. That was well established. One day, like an epiphany, I distinctly remember saying to myself; “Fuck it. I’m ok with who I am. If other people aren’t, that’s their deal. I can’t do this anymore.” And I started to like myself.

Now, I’m completely ok with the fact that I have mental illness. I’m not going to shout it from the rooftops. I don’t let it define me – as I am a bunch of other things aside from “bipolar”. But if someone asks me about it, I will talk to them.

I’m ok with the way I look. Sure we all have off days, but I don’t spend hours scrutinizing myself in the mirror, and I wear what I want to wear.

My relationships have improved. I don’t feel needy or walked over. I am more assertive. I have so much more free time now I am not obsessing over every little detail. I recognize that I will never please some people, and I have made peace with that. That’s their loss.

I’m more assertive when it comes to service. I am not afraid to ask for what I want, and (politely) complain if it is not to standard. I don’t ask Hubster to call people up. I say “excuse me” to people who are standing in my way, instead of awkwardly standing there like some weird stalker, waiting for them to get off the phone and move.

Increased confidence has had an impact on my PhD. I feel comfortable talking to my superiors. I ask lots of questions, because that is what I am supposed to do. I’m not SUPPOSED to know everything yet. It is my JOB to learn. I play like a scientist and look at the evidence; positive feedback, awards, an elite scholarship. I worked hard and have been rewarded. I no longer feel like an imposter.

And I write what I want to in this blog. I tell my story, like it is. I give my opinion, how I see it. I don’t spend hours writing a post, then suddenly feel complete paranoia in posting it in case someone doesn’t like it, or thinks I am stupid. It’s the internet. There’s always going to be strange people. But the way I see it, this is my blog, my story, and I am not forcing anyone to read. The amazing thing is that I have had a huge increase in followers – over 600 on WordPress (you guys are awesome!)!!! What’s more, the wonderful people who read and interact with my blog are so incredibly supportive and kind. Thank you for being you!

I guess what I am trying to say is that I am not perfect – and that’s the whole point. I still have, as I suspect everyone does, days where I lose confidence in myself. And that’s ok. It’s when lack of confidence controls your life that it is an issue. Sometimes when I feel unsure I think about that little girl in the witches costume. After I have finished laughing to the point of weeping, I smile and try and channel her confidence. Because if you can go on stage randomly dressed as a witch in front of 500 or so people and totally own it, you can do pretty much anything.

That Awkward Moment When It Was 2014

If I could sum up last year it would be; “That awkward moment when it was 2014”

Because really, the whole year was a series of awkward and unfortunate events. Today I have written about a few of these moments, in no particular order of “What the Dickens?!”

1) I had the strange experience of being a patient at three different hospitals within a 12 hour period. I was resident at one psychiatric facility. Transferred to another psychiatric facility. Then admitted to a surgical ward at a third hospital through the ED. Some people bed hop. I hospital hop. What a tart.

2) When I was transferred to the second facility it was in a van with a CAGE in the back. I went to get in the back then noticed all these bars everywhere, then was all insulted and “Dude. I’m not riding in a cage” to the driver. He laughed and said he could handle me me, so I got to ride shotgun. I didn’t mention the word “shotgun” though.

3) My entire family were stricken with gastro when I was admitted back to the medical ward due to surgical complications. I wasn’t expecting to be admitted so spent four days without so much as a paperback or pyjamas. I did, however, possess a sense of impending doom as I wondered what would happen to my abdominal surgical site once I, too, got an attack of the vomits, seeing as an unexpected sneeze rendered me incapacitated. Unfortunate for me perhaps, but less unfortunate than for Hubster, who spent an evening attempting to clean projectile vomit (Master D’s. Not his. Or so he says) from every square inch of our car.

I can say this because today I had the privilege of performing the exact same task. I spent close to an hour trying to remove Master D’s car seat, with a pair of pliers (don’t ask), I was covered in various bodily fluids that, for once, were not my own. All I will say about the matter is that lying in bed with a morphine drip would have been a blessed relief.

4) I walked into my assigned room only to find a young girl in there. Masturbating. That wasn’t awkward at all.

5) I somehow acquired and wore someone else’s underwear. The horror. I never found out who’s unmentionables I had inadvertently stolen. All I know is that they were six dress sizes larger than me.

6) I kept coming across people I went to school with. Not as fellow patients, but as my treating medical professionals. As a patient with mental illness and an embarrassing gastrointestinal disorder that was just, you know, AWESOME.

7) I was propositioned for sex. I am not even kidding.

8) I had to wear a canvas sack for a few days. That’s right. I literally wear a sack and get propositioned for sex. I am not quite sure what that says about him. Or me.

So there are some of my most treasured moments of 2014. We can all learn a thing or two from this.

1) Always pack a bag if you go the ED.
2) Knock before you enter.
3) Check your laundry…
4) …and forget bars and clubs. Psychiatric hospitals are the place to pick up.

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12 Deadly Sins: Secrets behind Self Harm

Warning: Some people may find this post triggering. For help with self harm please refer to resources such as Headspace, Helpguide, Lifeline, or call your local crisis helpline. 

When I was 15 I was diagnosed with major depression, panic disorder and an eating disorder. Because I wasn’t confused enough, later on I was also diagnosed with obsessive compulsive disorder, generalised anxiety disorder, borderline personality disorder, and numerous other unpleasant sounding things ending in “disorder”. Basically, no one knew what was going on.

It was a bit of a shithouse time really, culminating in a hospitalisation, threatened subsequent hospitalisations, and a fair amount of general chaos. Medication never worked because, obviously, I actually had Bipolar disorder, and prescribing anti-depressants without a mood stabiliser to someone with Bipolar disorder will usually just make things worse. But the doctors never picked up on that. So…one of my coping strategies was self harm.

I remember the first time I hurt myself. I had just come home from lunch at a cafe. I was freaking out over what I had eaten – not because I was afraid of becoming fat, but because I thought the kitchen staff were trying to poison me (and despite telling the doctors this concern every single frigging week, the professionals never picked up on my psychosis either. Probably because middle class, skinny, teenage, perfectionistic, high achieving, introverted girls don’t have psychosis. They have Anorexia.) Anyway, I tried to make myself puke. That was a fail. So out of pure frustration I grabbed a pair of scissors and scratched myself.

Immediately I felt relief. And about 10 seconds after that; shame.

Harming myself was like a weird drug. I started doing it more and more. I became addicted to it. I am not going to go into morbid detail because I know how triggering this kind of stuff can be. But hurting myself felt like the one control I had in my life. It felt like I was externalising all the pain inside and making it visible. It was my punishment. It was my reward. It was my secret.

This topic is not something I have ever really written about on here. To be honest with you, I don’t really like thinking about what I did to myself. But I think this is a topic worth discussing. There is so much controversy over self harm. And so much disrespect. Those who self harm are mocked, seen as attention seekers, and dismissed.

I can’t speak for others, but I never self harmed for attention. Attention was the last thing I wanted, even going to the extent of self harming in places only I would see, or wearing long sleeved tops on even the hottest of days. I self harmed because I didn’t know what else to do. I self harmed because it was a release. I self harmed because I was unwell.

That’s another thing: there is a myth that self harming is a kind of suicide attempt. I didn’t want to kill myself. Well, I did, at times. But my self harm wasn’t a symptom of suicidality. My self harming behaviour was a tool, a destructive tool, that got me through some of the most difficult days of my life. For me, it wasn’t a step towards ending it all.

Then one day I realised that I was running the risk of permanently scarring my body, in a way that would be eternally difficult to explain. I realised that I wanted to wear a bikini. That one day I would walk down the aisle and may want a sleeveless wedding dress. That I might have a kid who would ask what I did to myself. That it just wasn’t a healthy way of behaving. So I stopped. I say it like it was easy. It wasn’t. There was a long period after I self harmed regularly where it would be my “go-to” strategy if I was upset. It took a long time to change my behaviour. But I did it. And aside from the freak out I had in the locked ward last year, which I don’t tend to count as I was rampantly psychotic and actually set on killing myself as opposed to harming myself , I haven’t self harmed in years.

Luckily I don’t have many noticeable scars. But the ones I do remind me every day on how far I have come, and the path I have walked.

When I was a teenager I wrote a lot of poetry and songs. Today I came across this poem, and it stuck out to me. For me this explains perfectly the allure, horror and truth behind self harming.

12 deadly sins

Feels like fire

My opened flesh

Secrets exposed

How I like it best.

Razor sharp

Indulge my skin

But it’s never enough

To purge my sins

1 because I’m not good enough for you

2 for all the wrongs I do

3 for keeping back the truth

4 for the way that I treat you

5 for my ugly face

6 for this unwanted space

7 for the lies I’ve told

8 for this razor I hold

9 for the pain inside

10 for my hopes to die

11 because I can’t stop now

12 because I don’t know how.

12 purple scars

upon my thigh

I keep them well hidden

So you won’t ask why.

12 deadly sins

my punishment kept

12 000 tears

my cruel hands have wept.