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

Posted on March 28, 2015 by findingmysunshine86

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!

Letter To Myself: On 2014

Posted on December 4, 2014 by findingmysunshine86

Hey there, chick.

So it’s December, and at the closing of a year we like to do that thing where we reflect on what we have done, the achievements we have made, all the awesome stuff we did in 2014. You know the thing. Everyone does it.

But the thing is, 2014 wasn’t an awesome year. It wasn’t even quarter to an awesome year. It was downright miserable.

I know you had all these plans for 2014. You were going to start your PhD, you had been offered a scholarship that only 10 other university students received. You were going to present your research findings at a big interstate conference. After all these years of struggling you were finally making some money. You were going to have a baby. Or at least have fun trying. You were going to look at building a house. Everything seemed to be going right. 2014 was going to be your year.

Well, that didn’t happen.

I know that you look back, and you try, but you can’t see anything particularly positive about 2014. I mean, yeah, you’re alive. And yeah, the rest of your family is healthy. But everyone around you seems to be going on fancy holidays (or even unfancy holidays), building houses, having babies, getting promotions, actually being able to eat out at new restaurants without having to come home to barf. Living their lives, basically. And you’re sitting here now, typing in bed, with a fever, a queasy stomach, and a new script for Lithium, just like you have been for the past 11 months.

But you see, I think you’re looking at it all wrong.

Yeah. It was a shit year. But that doesn’t mean it was wasted.

You see, you learned a lot this year. You learned how to treat your body and your mind, and what happens if you ignore your health. You learned to put yourself first. You learned what changes are necessary for recovery. You learned what you are allergic to. You learned what medication and treatments work for you – and which ones don’t. You learned about your diagnoses. You learned the value of health. You learned who your true supporters are. You learned that your marriage can make it through the toughest of times, and you can still laugh together. You learned how resilient and strong your son is. You learned that stigma is still ever present, and this fuelled your passion to pursue stigma reduction research . But most importantly, you learned that YOU CAN DO IT. You can get through it. You can survive. Because you did.

You’ve come a long way, baby. Less than six months ago you were in a locked ward, periodically being shocked (as in electroshocked…although I’m sure you witnessed various shocking events as well. Actually, looking back. YOU were probably the one instigating the shocking events) and medicated. You were hallucinating. You couldn’t keep down, like, ANYTHING. You were being fed cans of formula. Dude, you could barely even walk. You were so sick.

And now, look! You can walk. You’re even exercising. You’ve withdrawn from fifteen of the seventeen medications that you were put on – a feat which is pretty damn amazing in so little time. Yeah, you have the odd vomit attack, but you can eat a whole lot more than cans of formula, chicken and rice. You’ve lost nearly 6kgs of your medication weight gain in the last three weeks.

And as for the other stuff…chill. You’ll get there. Stop trying to DO everything and BE everything when you’re barely out of hospital and still dealing with chronic illness. Give yourself a little breathing room.

The house? It will happen. You know you are an expert at making things happen. It will just take more time than expected. The baby? Relax! You’re 28 years old, the biological clock does not have to start ticking yet. So what if your kids have a big age gap? That’s life. And it totally saves on daycare fees (and quite possibly, sanity). The PhD? You’ll go back in January and it will work out or it won’t. If it doesn’t, if you are too unwell, you can ALWAYS go back to it in a few years time. You could work somewhere. Or you could become an awesome stay at home mum. It’ll work out. And however it works out will be for the best.

So cut yourself some slack. It was a crap year for sure. But you have picked yourself up, dusted yourself off and are ready to try again. And that perseverance, that determination, that positive attitude that I know you have at least SOME of the time. That’s what counts.

Life isn’t a competition, and it isn’t a race. You’ll get there, chick. It’s just been one helluva set back. But don’t forget – EVERYBODY has their struggles.

2014 isn’t a year that should be commiserated. 2014 is a year that should be celebrated. Because you did it. We all did.

Amber and The Allergy Test

Posted on November 27, 2014 by findingmysunshine86

A few months ago I visited the immunology department of our local hospital to get have some allergy testing done. Oesinophilic Gastroentoritis is often associated with food allergies, so one of the first steps with immunology was to isolate my irritants.

The nurse told me what each prick was for as she worked. When she came to “Dog” I almost had a heart attack.

“Oh god! I hope I’m not to allergic to dogs!” I told her. “I could never get rid of my Monsieur bark-a-lot!”

“Monsiour-bark-a-lot! That’s quite a name!” She said, carefully dropping a tiny drop of what was presumably Essence of Dog Dander on to my prick.

“He lives up to it.”

Then I had to go and sit in the hallway to wait for the results.

A beautiful young woman, who was pretty much the splitting image of Isla Fisher, sat down next beside me. Suddenly she turned to me saying “Nice arm! Been pricked?”

“How could you tell?” I joked. We both laughed and then started talking.

“Last time I had that done I went into anaphylactic shock and was rushed down to the ER.” she told me casually.

“Holy crap!”

“Yeah…I almost died that day. They had to get the paddles out and everything” she gestured towards her chest. “They don’t prick me anymore.”

“I should think not!” I exclaimed. “That’s terrible!”

“It’s life.” she said, giving me a smile. ” I have this really rare condition where I’m allergic to everything. Like, literally, EVERYTHING. Do you have many allergies?”

“Not sure.” I told her. Well allegedly peanuts according to my bloods. Which is kind of weird as I have never had any trouble eating Snickers bars…But I can’t eat gluten or pineapple. I have this rare autoimmune disease so they want to check things out.”

“Oh! I’m a pastry chef and make loads of gluten free products for people”. she told me.

And we started to talk. She was 28, like me, with a sunny disposition, despite the serious nature of her health. She had just moved to our city from Sydney. She was engaged and hoped to have a baby when her health was more stable, as she had just found out she had ovaries. This isn’t kind of a metaphorical way of suggesting she was clucky. She literally had just found out she had ovaries. From birth she was told she would never be able to have children. A recent surgical investigation showed the pesky ovaries “hiding”. Hiding where, I’m not quite sure. It was all very intriguing.

I told her about my year, she told me about hers. We empathised on the awkward moments we’d had running from family events and restaurants to vomit. We talked about the difficulties of having a rare and “invisible illness.” We talked about how annoying it was to feel sick the time. How it had impacted our lives and our mental health.

She told me that she had to come to the hospital every week for the next six months. It was part of some experimental drug trial. And because of her tendency for bad allergic reactions she needed to stay at the hospital for a certain period of time after the drug administration.

“Jeez..that must eat into your time!” I said. “I’m lucky if I don’t spend half a day in this hell hole every time I come in. And that’s just for an appointment”

“Well, you know, my social calendar is PACKED right now!” she joked, giving me a wry smile. “I’m sorry if I’m bothering you, I just like to talk to people. My fiancee is FIFO, I have no family in the state, I can only work when I’m well, which is like, never. Most of the friends I have I met here at the hospital. That’s a bit lame isn’t it?

“Not at all. It’s a nice change to have someone to talk to. I’m Rachael.”
“I’m Amber.” At that moment the nurse came back and called my name. As I stood up Amber said “Hey. It was nice talking to you. I really hope your health improves.” I responded with the same sentiment and then there was that awkward moment where I wondered whether I should ask for her phone number.

I’ve never asked a guy out in my life. I get nervous asking mothers at Master D’s daycare to exchange numbers so the kids can have a play date. I’m a giant wuss. So I waved her good bye and walked back into the treatment room, and instantly regretted my decision.

“Good news!” the nurse said. Rubbing off the ink on my arm. “You’re not allergic to dogs.”

“Thank God for that!”

On the way out I looked for Amber, but she was gone. We only talked for a while that day, but I think about her every time I head to the immunology department. Despite having a chronic and life threatening illness Amber was positive, friendly, and empathetic. Unlike me, she had been sick from the moment she was born, and despite her troubles she managed to make the best she could out of life. She inspired me.

So Amber, if you are out there, I hope you are doing well. I hope the drug trial works, and I hope that you are able to have the baby you so desperately want.

The Controversy of ECT

Posted on November 21, 2014 by findingmysunshine86

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

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

I was wrong.

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

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

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

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

So I had ECT.

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

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

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

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

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

But you know what. I’d do it again.

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

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

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

My Time

Posted on September 4, 2014 by findingmysunshine86

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.

Sick of being sick

Posted on May 8, 2014 by findingmysunshine86

Today isn’t a great day. My steroid dose was cut two days ago…the one thing we were all looking to to improve my psychiatric symptoms….and some of my gastro symptoms are back. I am praying it is coincidence, something I ate, anxiety, or just about ANYTHING that means I have to go back to the higher dose.

I am sick of being sick. Quite honestly, I have never felt this unwell in my life. When its not pain it’s hallucinations, when it’s not gastro symptoms it’s depression. Then there are the side effects of the drugs themselves…dry mouth, tachycardia, insomnia, restlessness, everything tasting bad, immuno suppression, fainting….the list goes on. I just want to feel well again. Mentally and physically.

One of the annoying things is that I have very poor concentration. The books I have, the tv, crosswords and activities on the ward are things I can only concentrate on for 10 minutes or so. I am so weak and lightheaded from the combination of the oesionophilia and my meds, that merely walking to an activity is too much for me. I feel pathetic. But this, combined with insomnia makes for some very long days, and too much time to think.

I know it could be worse, but today I’m struggling, and today I don’t feel strong. But tomorrow is a new day and I hope the world seems brighter.

Four Weeks and Nothing to Show

Posted on May 7, 2014 by findingmysunshine86

Sometimes I feel as though I am on a crazy roller coaster, where I just can’t catch a break. I know it could be worse, but it could be better as well.

I am now entering my fourth week of hospitalization. The only difference is that for the most part my diarrhea has stopped, and for the most part my psychiatric symptoms are worse.

Yep. Worse.

I had suicidal ideation when I was admitted. I now have voices telling me to kill myself. I was depressed when I was admitted. I now feel very little at all. I had psychosis when I was admitted. I now have trouble telling reality.

Doubtlessly, my psych symptoms are worse because of the steroids I have to take for my gut. I have no option. There is no luxury of medication choice. It is the steroids or nothing. The effect they have on me psychiatrically extends my hospital stay. While I am in hospital I can’t access the nutritional changes I need for my gut to heal (steroids will tame the inflammation but not fix the problem)…THIS is an issue I will address in another post. So basically I am forced to ‘poison’ my gut with food that irritates it…the gastro team thus unlikely to reduce the steroid dose..my psychiatric symptoms remain extreme…and I cant go home.

I miss my little boy and my husband.

Fuck it all.

It’s a Knockout!

Posted on May 3, 2014 by findingmysunshine86

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

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

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

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

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

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

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

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

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

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

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

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

Full circle.

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

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

Down the Rabbit Warren

Posted on May 3, 2014 by findingmysunshine86

This time, my doctor gave me little choice over my hospitalization. She looked me in the eye and told me I could go to my local hospital as a voluntary patient on an open ward, or if I refused she would section me as an involuntary patient in a locked ward at the state psychiatric facility.

Of course I cried, I told her i was fine….it was just a bad day. I pleaded and begged, but she held fast.

“Ethically, I can’t let you go home” she told me. My mind went a million miles, wondering how on earth I was going to tell those closest to me that I was a giant screw up. Again. A failure of a mother. Again. I’m a PhD student researching mental illness, I should be on the OTHER side of the fence. This cannot be happening.

The days preceeding my admission had been nothing short of strange. I wandered around in a foggy vagueness. Blips of craziness punctuating my constant level of physical illness. But having the equivelent of gastro for 6 weeks would drive anyone a little crazy?

Wouldn’t it?

On the day of my admission I put a pretty dress on. I dropped my son of at daycare, kissed him good bye and went to the shops. I bought a few items we needed for the house then sat down to a large meal at a cafe. I ate approximately four bites before rushing home and being ill. I had planned to clean the house and pay the bills, because I wanted everything to be perfect. I wanted everything to be perfect because I knew I was going to die. I didn’t have a plan and I can’t even say it would have been suicide…but I had a strong gut feeling that I wouldn’t be in my house that evening. I was done. Something had to give.

Six hours later I was being shown to my narrow hospital bed, I guess I was right. Before I even knew it was happening I was falling down the rabbit warren again.