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!

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Easter Time Sadness

There’s something about the sudden change in the air. We don’t have seasons here, we are propelled from Summer to Winter within the space of a week, with little time to adjust. But there’s something about that drop in temperature. That earlier sunset. That cloudy sky. The smell of flora finally allowed to flourish now that the heat has subsided. Rain! What is this rain? We celebrate those fat drops of water. Our grass starts to green again after months of dehydration and water restrictions.

It should be blessed relief. The sun doesn’t beat down with such a vengeance, burning the roads, the houses, the children in their 50SPF sun cream. The mercury doesn’t relentlessly soar past forty degrees (104F). We don’t have constantly choose between the extortionate expense of running the air conditioner, or lying in bed covered in wet flannels. I start to venture outside again. Walk again. I savor the air around me. I can breathe. I sit at the beach and laugh at the cool breeze that tickles my face. March and April in Western Australia is the feeling you get when you dive into a pool on a stinking hot day. Relief. I love this time of year. I love it.

But, oh, how I hate it too.

Every single time I have been hospitalized for psychiatric reasons it has been during March/April. I have eaten my Easter eggs, alone, in a psychiatric ward multiple times. Nearly all of my severe episodes (depression and manic) have started around this time of year. I don’t know why. I don’t know what I can do to stop it.

So here I am, late March, and I feel that pull of sadness upon me. Smell is so evocative. I smell the changes in the air, and feel the temperature drop and immediately experience flashbacks. Admission to hospital. Pills. Sickness. Doctors. Nurses. IV’s. Catheters. Surgery. Suddenly I’m locked in a bathroom trying to strangle myself. Then I’m being given a bite block for ECT. I’m being held down by staff and injected. I’m crying. I’ve lost it all. I can’t go through this again. Please don’t let me go through it again.

I shy away from the Easter eggs in the shops, as if by merely seeing them I will plunge into darkness once more. Superstitiously, I donate the clothes that I wore around this time last year, and buy new things, as if that is enough to hang on to my mood. I refuse to think about anything upsetting. I throw myself into work, into cooking, into TV shows. Anything to keep the darkness at bay.

But I’m not sleeping.

It’s then I realize that my journey isn’t over. I survived last year. My autoimmune disease is in remission and my bipolar is stable. But it’s never over. There is no cure. I’ve been so confident. So happy. So sure that the hell I have been through is enough. Enough pain. Enough expense. Enough trouble. I never really considered the possibility of it coming back, despite warnings from my medical team.

But here I am. Considering that possibility. I’m so tired of constantly having to fight for what other people seem to achieve quite naturally.

Stability.

But weary though I am, I pick myself up and breathe in the fragrant air. I feel the wind in my hair. I accept the beauty of this season. Then I go home and take my medication. Put on my pyjamas. Cook something I love. I wrap my arms around my knees and look after myself, a little more than I do normally. I tell myself that I’m ok. That the change in season doesn’t necessitate a change in stability.

I tell myself that this Easter is different. Because of course it is the first in over a decade where I haven’t heard voices. Imagine that? I tell myself that I’m ok. Because I am. Truly.

This is a time of reflection and healing. It’s a time of learning and change. And as the anniversary of my hospital admission looms, I realize that it’s a time to recognize just how far I have come.
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