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.

outlier

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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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.

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!

The “Diet” that Changed My Life

Today I’m going to tell you about the “diet” that changed my life.

Before I started my “diet” I was incredibly ill. I have an autoimmune condition which basically results in my immune system going nuts and having allergic reactions to a number of foods. I also suffered extreme gastrointestinal pain, frequent bouts of vomiting and diarrhoea, constant fevers, bone and joint pain, headaches and excessive fatigue. Even after I was discharged from hospital I felt like crap. It was like having the flu every day of my life. And that was a distinct improvement. I was on SEVENTEEN medications. My white blood count was terrible. My mental health was affected, because feeling like absolute crap every day of your life and being unable to function does that to you.

There was no relief. Nothing I did helped. I was popping pain killers like tic tacs. My immunologist was starting to talk about putting me back on steroids (which, last time made me rampantly psychotic), or – worse – hardcore immunosuppresants that are traditionally used for cancer patients, and would leave me even more vulnerable to illness and infection than I already was. Something had to change.

So I started a diet.

I say “diet” because it isn’t really a “diet”. To me, “dieting” conjures images of cabbage soup, unrelenting hunger, and feeling deeply miserable. I’ve been on diets before. This wasn’t like that.

My aim wasn’t to lose weight. Don’t’ get me wrong – the weight I have lost in the last few months has been a welcome side effect. But I made the change to better my health, and to better my health alone.

I researched a number of different “diets’; Paleo, LCHF, GAPS, Raw, all that kind of stuff. But there were restrictions, and aspects of the diets that I didn’t like. So I made my own rules.

I used my common sense. I figured that if it grows on trees, you can dig it out of the ground, or comes from an animal it’s probably good for you. If it comes in brightly coloured packaging and the second ingredient is “sugar”, probably not so much. So, after many hours of research on nutrition, and spending an inordinate amount of time in the supermarket, no doubt pissing everyone off, while I examined ingredient lists, I completely changed my way of eating.

Here’s what I did.

– Obviously I started by cutting out all foods I knew I had allergic reactions/ intolerances to. I’d have to be pretty stupid not to.

– I decided that consuming excessive refined sugar was not going to help my physical or mental health. There are many links between sugar and physical and mental illness. So I reduced it. I didn’t “quit” sugar – as so many people proclaim, because I eat various forms of unrefined sugar – for example the fructose in fruit (personally I feel that the fibre content and nutritional value of fruit far out weighs the supposed badassness of fructose). But I swapped cane sugar for coconut palm/stevia/honey in cooking. I stopped eating so much crap. I drunk water instead of juice. But on the other hand I didn’t deprive myself either. If I go out for dinner and there is the possibility of ice cream afterwards. You bet, I’m ordering it. And I feel no guilt. This is a long term project, and I don’t believe it is sustainable without the odd treat. To me, the occasional special treat is very different to the mindless eating of junk that I was doing regularly.

– I stopped buying processed food and made it myself. When I began looking closely at supermarket products, I was absolutely horrified at how much sugar/additives/preservatives are added to foods. Most things I make nowadays are from scratch – stocks, dressings, yogurt, muesli bars, sauces etc. But again, if I’m busy and don’t have the time to culture a yogurt I buy some, I just make sure it is good quality. The aim is to improve my health, not make it worse through stress.

– I cut down on some forms of dairy ( I can tolerate cheese and yogurt better than milk). I’ve always been sensitive to dairy, so this was nothing new. I started making my own nut rice milks to cut down on the expense.

– I don’t buy “low fat”, or “diet” anything. Low fat foods are higher in sugar, and diet foods/drinks are high in chemicals. Despite the hype, your body does need (good) fat to survive. I’m full fat all the way

– I very rarely, if ever, eat fast food/convenience food. This is especially easy for me as I am actually allergic/intolerant of most fast foods.

– I eat “real” fresh looking foods. Fresh fruit and vegetables. Grains I can tolerate – such as quinoa. Good quality cuts of meat.

My favourite salad - Broccoli, carrot, red onion, apple, yogurt and lemon juice.

My favourite salad – Broccoli, carrot, red onion, apple, yogurt and lemon juice.

– I use Olive Oil and Coconut Oil for cooking instead of vegetable oil.

Bacon and homemade hash brown cooked in coconut oil.

Bacon and homemade hash brown cooked in coconut oil.

– I give myself treats. But I make them myself, and I try to make them as healthy as possible. For example .. raw desserts. Some may say that they are are calorific, or contain a lot of oils. I say they are made from whole foods, contain no refined sugar or preservatives. They fill you up and satisfy your sweet craving. All in moderation, obviously, but if you are going to have something sweet – it’s probably better than eating your weight in Reeces Pieces.

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Mango coconut “cheesecake”

– I don’t let myself go hungry. Unlike the starvation diets of my former years, if I am hungry I eat. I have three meals and several snacks a day, and I never feel deprived.

– I cut out caffeine, and alcohol (apart from on special occasions).

So I did all this – and I wasn’t really sure what to expect. I was hoping to improve my fatigue. I certainly didn’t expect the major impact that simply eating good quality food has had on my health.

– I no longer have gut pain. Any. At all. (Well, unless I eat something on my allergy list). This is HUGE for me, as I have lived with chronic pain for a long time.

– I can keep my food down…and up. Hells to the yeah!

– I have come off FIFTEEN of my medications. And I am currently cutting out another.

– I no longer have fevers, joint or bone pain. I don’t catch every cold that goes around.

– My headaches have disappeared.

– A plantar wart I had on my foot completely disappeared. I had had this wart for 10 years and tried every treatment you can imagine. It was like a goddamn miracle.

– My hair is lovely and shiny and I’ve stopped bruising so easily

– I have energy. I wake up early, sleep well, and never feel tired during the day.

– My concentration is now awesome.

– All my food cravings have gone.

-I am no longer having panic attacks. I don’t feel remotely depressed. I have no psychosis. I’m generally cheerful and look forward to the future. I have been able to come off a lot of my psychiatric medication.

– I lost 9kgs (about 20lbs) fairly rapidly. Without restricting. Without really trying.

So, for me, this “diet” was the best thing I have ever done. I’m certainly not cured by any means. But I can manage my conditions, and I now have control over something that controlled me, put me in hospital, and very nearly broke me. This knowledge, in itself, is so important for my mental health. Next week I see my immunologist. At my last appointment, a few months ago, I cried and told him that I couldn’t keep going like this. This time, I can go back and say “no” to the steroids and immunosuppresants.

I got this. 🙂

I Wish I Had Broken My Leg

“I wish I had just broken my leg.” She told me, as we sat in together on the cracked and threadbare sofa in the psychiatric ward. “My brother-in-law broke his leg a few months back. Stupid motorcycle accident. His fault, by the way. He was in hospital for less than 24 hours. The entire family descended. Brought him cards and presents. Cleaned the house. Cooked him meals…I have been sick for months. I have been in hospital for weeks. Not a single person has visited me, cooked meals for my family, babysat my kids, sent me a card, or even acknowledged our trauma. I guess people understand physical pain more than mental pain…Why couldn’t I have just broken my damn leg?”

I empathise and understand her story. I believe this is the unfortunate, frustrating, and upsetting case for many – if not most – individuals hospitalised for psychiatric reasons. But I don’t necessarily agree with her point.

Because, come on, who doesn’t understand mental pain.

Everyone in the world has undergone some form of mental pain. While, obviously, the entire population doesn’t suffer from diagnosable mental illness, I refuse to believe that ANYONE sails through life without feeling some degree of emotional turmoil – whether it be loneliness, heartbreak, fear, or sadness. Turn your radio on. I guarantee that 90% of the songs given airtime detail emotional states, both positive and negative. Artists don’t sell albums filled with songs about their broken legs.  It’s all about broken hearts.

It’s not lack of understanding. It’s discrimination and stigma.

I have two chronic illnesses that I deal with every day. Both offer their own “special” challenges. But I often think to myself that if I were to play favourites, I would prefer my autoimmune disease to my mental illness.

Don’t get me wrong. My autoimmune disease is a giant pain. Literally. I am so sick of explaining it to people. To having this rare illness that no one, not even the so called professionals have heard of. To having to read every single ingredient with a fine tooth comb. Of irritating the restaurant staff with my paranoid questioning. Of hurling in the car park afterwards anyway. Of indescribable pain and pills. Of fevers and fatigue and the kind of bone ache that makes you want to cry. Of highly unpleasant tests and procedures. Of hearing that my blood eosinophil level is four times the normal limit. And that’s an improvement. Of being scared to eat new foods. Of not leaving the house without a vomit bag. Of being threatened with steroids and hardcore immunosuppresants that have serious side effects. Of being sick.

But, you know, people respect it.

If I throw up or have an allergic reaction or go to bed with fevers and sweats, people are generally sympathetic. If I can’t go to a social occasion because I am physically unwell, people are cool with it. “Get well!” They say. “Rest up!” They say.

But if I become mentally unwell, people (with exception, of course, to the few of my closest and most wonderful loved ones) don’t tell me to “Get well” or “Rest up”. I am encouraged to pull myself together. Keep my chin up. Not feel sorry for myself. Think of people who have worse problems.

If Physical Illness Were Treated The Same As Mental Illness: Image from: http://imgur.com/CWFTYoV

If Physical Illness Were Treated The Same As Mental Illness: Image from: http://imgur.com/CWFTYoV

Like mental experience doesn’t count.

Talk about double standards.

Those of us with mental illness are somehow expected to negate our emotional experience, while validating the emotional experiences of others through expected social interaction. We are not allowed to be clinically depressed, manic, or psychotic. But we must listen and empathise with those who are stressed, tired, involved in some sort of altercation, lovesick, feeling guilty, feeling happy, etc etc. Of course, if we want to be sad after a break up, or a death, or a job loss we can. But only for a socially acceptable amount of time, and only to a socially acceptable degree.

In my ideal world my mental illness would be treated with the same respect as my physical illness. And in my ideal world suicidal individuals would receive the help they need, and those who self harmed wouldn’t fear seeking medical assistance. Funds would be issued to psychiatric hospitals. Mental illness wouldn’t be viewed as something only the weak or dangerous succumb to. When I was younger, I  wouldn’t have hid my illness for months because I was scared of what people would say.

As time goes on, the less and less I seem to care about what people think of my mental illness.  In the famous words of Dr. Suess “Those who matter don’t mind. And those who mind don’t matter.” My experiences have weeded out the people who don’t matter. The people who have a problem with the fact that I have an illness I did not choose to suffer from (and I loath to use this term, as I do feel there are positive aspects of mental illness as well as negative). But I also know that I am fortunate, and possibly somewhat of an exception. I know who my true supporters are. My family and close friends are exceptional. Many others struggling with mental illness don’t have this kind of back up. I’m one of the lucky ones.

But sometimes I sit back and wonder how many people I would have lost if I had broken my leg instead.

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.

Oesinophilic what?!

Is the response I generally get when I tell people about my diagnosis. So instead, I have started explaining instead that I have a Very Rare Autoimmune disease. 

Because, let’s be honest here, no one actually knows what an autoimmune disease is.

At least I didn’t. Until I discovered I have one. Basically an autoimmune disease occurs when the body’s immune system gets confused and starts attacking itself. Body fail. 

My particular disease results in my oesinophils (little soldier white blood cells that usually target infection or allergic reactions) having a partay in my gut, and storming my blood. Thinking that there is need for warfare, more and more troops are called in, and my gastrointestinal tissues are seen as the enemy and attacked. Awkward!

autoimunetough

The result is severe abdominal pain, vomiting, diarrhoea, weight loss (the one symptom I didn’t get. Typical!) and other gastrointestinal symptoms unmentionable in polite company. Kind of like your average 24 hour ‘gastro’ attack. Aside from the fact it doesn’t end after 24 hours. 

What little research there is indicates that the “gold standard” of  treatment is to use steroids to immune suppress, or stop those little soldier cells in their tracks. But, as I found out the hard way, Prednisolone + Bipolar = Complete Disaster. The second line of treatment was to avoid all potential food allergens by sticking to an (extremely annoying) elimination diet, eliminating gluten, seafood, nuts, soy, dairy and eggs. While this has lessened my symptoms to a degree my eosinophil blood count is still four times the normal limit. Plus I’m kind of driving myself mad trying to find food to eat that is allergen free. 

So this is where I’m at. Trying to get my body to work, and wondering what will happen next. My immunologist has indicated more tests and biopsies and potentially starting on a regime of “a different type of steroid that won’t send me mad”. 

That would be a first 😉 

 

My Time

It was a fairly normal Monday. I had a long to do list and, what I considered to be, a fairly bad case of indigestion. It was a burning, griping kind of pain, that after a half hour quite literally had me at my knees. For some reason I decided to get it checked out before heading into uni, and I arrived at my medical practice in somewhat of an alarming state, clutching the reception desk and announcing that I felt like I was going to collapse.

I was shuffled away into a back room, assigned a bed and a nurse who (typically) I went to school with. A doctor came in, they poked and prodded and told me I needed hospital evaluation. I was in agonizing pain, but had a horrible suspicion that it was indigestion…or worse…trapped GAS. I tried to convince the white coats that I just needed some pain killers, I would not..COULD NOT go to hospital for a humble fart! But my pleas were ignored, my husband was called, I was wheelchaired into the car, and after that my ability to give a fuck was seriously compromised.

The pain was akin to being in labour, without the sliver of relief between contractions. I began to panic because I literally could not do anything to get through the moments. I lost all control in the waiting room, groaning, writhing, losing snatches of consciousness, telling The Hubster – in all seriousness- that I felt it was time to call an ambulance. Nurses scurried over, took my obs, gave me some pathetic excuse for pain relief and told me I was next.

“Next for what?” I wondered. “Next to DIE?!”. In fact death would have been preferable at this point.

Finally I was taken in and hooked up to the good stuff. While the doctor syringed morphine into my vein I understood, just for one moment, the allure of narcotic intoxication. I heard them talking about me, checking my breathing, but it was all above me and I drifted up into somewhere far more pleasant.

I tested negative for the main culprits, and once the Ob-Gyn team got a whiff of my history of endometriosis I was diagnosed with endometriosis (who conveniently can only be diagnosed through surgery) and sent home.

Of course it wasn’t endo. And of course I was back again less than 24 hours later. Vomiting my guts up and unable to stray from the toilet.

A doctor came in and I was told how mighty unlucky I was to have endo pain ONTOP of a case of viral gastroentroitis and told I could go home. As the doctor left our room Hubster let out an enormous fart that he’d obviously been harboring for some time. Almost simultaneously I lurched forward and puked into a plastic bag. Yes. We’re that classy.

And this doctor dance went on for a few weeks. Back and forth, back and forth to the point where I seriously considered the possibility that I was experiencing some sort of stress reaction. Or, I WAS MAKING IT ALL UP. IT WAS PSYCHOLOGICAL.  But my wonderful GP pushed and pushed and eventually found what she was looking for.

You know its bad news when your doctor calls you at night. I sat on the bottom of the stairs  in the midst of a family dinner and listened as I was told I had something called Oesinophilic Gastorentoritis. My GP sounded quite pleased with herself as she described the illness. And so she should. This weirdo disease has only been diagnosed around 300 times worldwide. Confirmation of my condition probably gave a distinct edge to her mad diagnostic skillz.

And that was the start of it. I walked back into the living room. Announced “I’ve got that weird disease the doctor was talking about” then promptly burst into tears. Partly from fear, and partly from sheer relief. THANK GOD! There is a name for what I am experiencing! I’m not mad! (well not yet! That comes later).

That night I slept fitfully, and this time it wasn’t only the nausea keeping me awake. 1 of 300, I kept thinking. 1 of freaking 300! What is up with that?! How could I possibly have something so stupidly rare. No one knows about this disease. Even my supposed specialist had never heard of it. There is limited research. Few routes of treatment. This was beyond a joke. This was, quite literally, a kick in the guts.

Meh. Sometimes you kick. Sometimes you get kicked. Everyone has their time, I’m told. It seems this is mine.

 

Baby Steps

My doctors have indicated that I may have to learn how to manage two illnesses that interfere with each other for, what is likely, the rest of my life.

When people ask me why I am in hospital I barely know where to start. I often find myself telling people I have an “autoimmune disease”. Which of course I do. But those two words are easier to cough up than talking about the nasty, dirty, reality of psychosis, continual diarrhoea, vomiting, bowel pseudo obstructions, suicidal ideation, urinary catheters, depression, involuntary detainment, ECT, stomach pain etc etc. No one wants to hear about that (excuse the pun) shit.

And the biggest problem is these diseases love to mess with each other. My entire (almost) five month hospital journey was due to three major reasons:
1: malabsorption of my psychiatric medication due to excessive vomiting and diarrhoea.
2: taking Prednisone to counteract my OG, which instead increased my psychiatric symptoms.
3: mismanagement by poor communication between psychiatric, surgical, and gastro medical teams. Probably because no one knew what to do with me.

I trailed around psych wards with an IV and catheter. On medical wards i required my own psychiatric nurse. Medication for my bipolar negatively impacts my gastrointestinal symptoms. Medication for my OG negatively impacts my psychiatric symptoms.

In other words, it is a big fat mess.

I’m so afraid of what people will think of me when I am discharged. Am I bad mother for spending so much time away? A bad wife? Family member? Friend? Graduate? Employee? I think of some of the stuff I have done and cringe. I’m ashamed.

Years ago, in a psychology 101 lecture we learned that the true madness was defined when despite evidence to the contrary, you believe yourself to be sane, and those around you to be crazy. Indeed, the greatest difference between a locked and open ward seems to be that those in an open ward agree they are unwell and wish to change. Often those in a locked ward don’t believe they are unwell and turn against the doctors and nurses who suggest otherwise. I did this.

I was crazy.

After a brief visit home (and a good 600 or so new emails) I realized that the world had moved on. My friends who had only just announced their pregnancies before my admission had grown an entire baby during my absence, and given birth to new life. My loved ones had moved on with their lives with new jobs, hobbies and hairstyles.

What have I contributed to my family, friends and society in the last five months? All I have done is become a burden, not only to my loved ones, but to the community in general.

Today in group I expressed these concerns. Afterwards, to my surprise, one of the group members, Lyla, sat next to me at lunch. After some small talk she looked at me and said;

“Your memory will come back…my husband has Bipolar disorder too and needed ECT. It took time, but it came back.”

I wasn’t sure what to say, other than “Thank you.”

“Also,” she continued, kindly, ” I have seen my him through everything. I had to stop him jumping off a roof top. But I still think the absolute world of him. He is my everything.”

My eyes welled up with tears.

“And our son, he was five when all of this happened. He can’t remember much, and he would never want another Dad. Kids are so resilient. You are the best mum in the world for your son. And you are trying to get better. You will get better. And that is all anyone can ask. The people who love you will continue to love you…and those who don’t understand…they are not worth worrying about. You will get there. Baby steps.”

I nodded tearfully and whispered “thank you,” again.

It was when I got back to my room I realized that I didn’t need to close this chapter of my life forever, and jump back on the moving train. I didn’t need to pretend nothing had happened, and one by one answer those 600 emails. Instead I could look at it as a leaning experience. These ailments, it seems, may always hum away in the background. Something I need to accept as a part of myself rather than try and forget. Hubster even suggested, humorously, that I could look upon this experience as anthropological field research for my PhD topic. Laugh as we did, if anything this experience has taught me that stigma towards mental illness is still rife, and a topic that is important in contemporary society. One day, hopefully, I can pay back society with some solid research.

But first of all, I need to let go of the guilt that wakes me up at night, and realize that there was precious little I could change.

Baby steps, baby steps.