Still searching

I arrived back home to London at the end of November and after some routine blood tests had found that my liver was out of whack. Cue a lot of hospital visits and a heap of frustration because its been 5 months and the doctors still haven’t figured out what’s going on with my health!

I’ve come to the conclusion that I am just broken and for my birthday am going to ask for a brand new body. We’ve made huge advances medically, a new body isn’t too much to ask for, right?

I’ve also come to the conclusion that when doctors say “this may be uncomfortable” they are lying. Uncomfortable means “this is going to be painful, chances are extremely painful, but we’ll let you find that one out on your own”

However I did have an extremely honest doctor for my liver biopsy and when the nurse said “this may be uncomfortable” he then laughed and said “Well we don’t know that for sure, I mean I haven’t had the procedure personally”

Oh its all fun and games when you’re on the other side holding the largest needle-type-contraption I have ever seen in my life, isn’t it doctor?

It hurts by the way. I felt winded and then promptly sick, which I suppose in fairness is normal, after all you’ve just taken 3 tiny pieces of liver out of my body.

Endoscopy. At first I thought it was a welcome change to all the colonoscopies I’ve had in the past.

Once more I was proven wrong. Drowsy and confused from the sedation, the doctor moved the scope at an angle that I started to choke and retch on the camera. Hazily I heard the nurse say “Almost there, you’re doing so well”

Lady… take the scope out of my mouth. I am dribbling so much despite your little suction thingy, that the side of my face is now wet, I’m clearly trying to swallow but can’t because I have a camera down my throat, please do not try to encourage me to keep going, just take the camera out.

MRI contrast exam. WHAT THE FUCK IS IN THAT LIQUID? Seriously? and why do I have to drink so much of it on an empty stomach?

I have a sensitive palate, anything that I don’t like to taste, will make me gag. Same with smells, its really annoying. And yet I had to drink this large bottle of  disgusting liquid in the space of 45 minutes. I thought I’d sip it… nope… it made me gag… I thought I’d try to chug it… nope I was very nearly sick everywhere.

Luckily after I somehow managed to drink it, all I had to do was lie in the MRI and just listen to noises that made me feel like I was in a spaceship. Which isn’t actually that helpful because I want to laugh at the ridiculous scenario I am in, but you can’t because they’re taking pictures of my insides.

Still no news on what’s happening, I need to have another endoscopy because they want to see further into my small bowl. Joyous.

I’ll keep you all posted on my delightful hospital adventures.

Till then, stay well and happy x

Suspected PSC

“We suspect that you have Primary Sclerosing Cholangitis, but the MRI isn’t conclusive so we need to do a few more tests to be sure.”

Primary scl-what-now?

I still don’t know how to pronounce the above, and so PSC will do for now. All you lovely people need to know, is that it is a disease that effects the bile ducts in the liver.

There is of course a chance that it may not even be this, but because I have (or technically had as I now have no large intestine) Ulcerative Colitis, this is the most likely outcome as they can be linked.

Roughly 1 in 13 people with UC can develop PSC, why? To be honest, even with some research I am not sure.

How does it effect me?

The only reason the doctors found anything wrong with me was because of some routine blood tests, I have no symptoms apart from being extremely tired for no reason, which to be fair, I just thought was my IBD saying hello.

As the doctors couldn’t be sure from the MRI alone, it means that if it is PSC, it’s not very advanced, which is a good thing.

In the future it can cause problems as the amount of inflammation can cause scaring of the liver. However, I’m not worrying about that until I know for sure if it is PSC.

Sorry for the brief post, just wanted to give you all an update, no doubt I’ll have something to say about the tests that I’m having (liver biopsy and an endoscopy, through the mouth this time, thankfully!)

Till then my friends…

New Resolve

Oh Melbourne. How you haunt me so.

My southern hemisphere friends are posting pictures of beaches and bikinis. Glorious warm summer nights filled with food, wine and laughter.

I scroll through these pictures and am filled with an immense feeling of longing and loss, so strong that I frequently dream of Melbourne.

I dream of the friends that I have made, I dream of memories but last night I dreamt of leaving and I woke up feeling extremely sad.

I often wonder when this haunting will end. I am after all in London. There was a time when I would walk the streets and feel this bubble of pride that I was a Londoner and that I lived in such a glorious city.

Talking to a friend of mine, I had said that the ownership of feeling happy falls to me. I can chose to be sad about living back in London, or I could accept that, yes, it’s not quite what I wanted but there are so many good things about being back.

When I was travelling, most days that I had off, I would plan little trips to see things, or I would go for walks.

I’m not sure what it is about London, perhaps it’s because I’m a Londoner that I don’t make a conscious effort to try or explore new things. This is home.

But if I look through my travelers eyes, no doubt I would have already booked a small trip somewhere. I have friends all over the UK, there is nothing stopping me, money aside, from booking a cheap bus up north. Or going to a market, which is something that I’ve always enjoyed.  Why must my curiosity stop, just because I am now home?

The adjustment has been tricky, and I have spent many minutes thinking “If I was in Melbourne, what would I be doing now?”

But that’s not going to help me. If I continue the way that I am thinking, there is a huge chance that this time next year, I’ll look back and think “Damn, I wish I had done more”

My aim of 2015 is not to let that happen, and to explore, to still be curious.

In other news I’ve unfortunately been having tests on my liver. Something is wrong but the doctors are not sure what, and there is a high chance that it is related to my IBD. However, it’s all speculation at present, and I’ll update you once I have seen my Gastro. Joyous. I thought the IBD journey had finally come to some sort of close. Not to worry, I’ll keep on trucking, just like I always have done because IBD is a part of me, it does not define me.

I hope you’ve all had a great Christmas and an even better start to the New Year.

Until next time, keep smiling.

 

Patsy

Nothing like a bit of death to evaluate your life, your goals, dreams and ambitions.

Saturday 1st November was the first anniversary of my Nan’s passing. I worked during the day and then in the evening I took myself to a really nice restaurant, sat down with a glass of wine, ordered a steak and I wrote.

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Coco’s Cantina

I wrote about where I want to be in my life, what I want to achieve and all the things in between. I wrote down all the big things worrying me about my path and where I am heading, to some of the simpler things I wanted to achieve like working my way up to meditating every day.

Sometimes seeing it on paper helps to organise your mind but also gives you the time to think about what it is you really want. Sure, most of us have an idea of what we would like, but do we ever sit down and take the time to really mull it over?

And I thought about my beautiful Nan. I wish I had a photo to show you guys but unfortunately being in New Zealand, I didn’t take any snaps with me.

Memories are all I have and in fairness, all I need. As long as I remember, she will remain alive inside my heart.

It’s a sad occasion, I thought of all the things I never got to ask her. I felt sad for the things she will never get to see, like how unbelievably happy my mum is with her partner, how my two brothers are growing up to be these incredible men. How she’ll never see any of us married or hold a great-grandchild. I feel robbed of time shared. That I can’t sit and talk with her on a sunny afternoon with a cup of tea and biscuit.

It is also a celebratory occasion. I feel grateful for the time that we did share together, blessed that I was able to get to know my nan and create these memories with her. Unfortunately some people don’t even have the opportunity to get to know their grandparents and I feel fortunate that I had a close relationship with mine.

It was a bitter-sweet day where I allowed myself the time to breathe and to feel. I know that time heals all wounds, that things will get easier but the first will always be the hardest.

In other news, today I’m going to bungy jump. I have wanted to do this since I was about 19, and the longer I leave it, the more I’m scared of it. I’ve always wanted to do it in New Zealand, and as I’m here, I figure I should take the time out to tick this one off my bucket list.

I have 7 more sleeps till I’m back in Melbourne for a few days, and I have 17 more sleeps till I’m back in London.

Things are picking up and I have some exciting time that lay ahead.

 

Growing Pains

“One way or return?”

Only then did the tears begin to fall, in front of the bewildered gentleman at the sky bus kiosk.

“One way” I finally managed to say.

It wasn’t saying my goodbyes to people that started the tears, extremely hard as that had been, it was realising that I was getting a one way ticket to the airport, that I wasn’t coming back to Australia for a while, and that I was being torn apart from the life that I had carved out for myself.

Of course I could visit, that’s always an option but it’s not the same as living there.

I had found some incredible and inspiring people on my journey. I found this insane love for food, coffee and wine that I never really explored because I was so sick all the time. I found that I really enjoyed riding a bike, no matter how bad I was at it, but most importantly I found my health and I found me.

I’ve always been me, obviously, but through illness and operations I had lost a lot of myself. In Australia I got back to myself and then some; I had never felt more me than when I did in Melbourne. I wish I could explain to you what it was exactly, it could have been  because I was allowed the freedom to just be, with no back story or preconceived notions of my character. No one really knew me. Or it could have been that I felt I belonged there.

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Graffiti in Brunswick

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Rooftop view of Melbourne

Whatever it was, all I know is that I had never felt more comfortable and able to express myself.

It’s hard to give that up when you’re not ready to. It felt as though the Australian immigration was ripping a piece of my heart out, setting fire to it and stamping on it.

Totally dramatic, I am aware.

I know that I have made some life long friends and that those connections won’t disappear but its sad to know that I won’t be sitting at my kitchen table talking complete shit with my housemates. That I won’t be inviting people round for a cuppa and an in depth chat about life, or finding new places to have amazing breakfasts and an awesome cup of coffee.

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Grain salad at Touchwood where I used to work

Side note, Melbourne has taken breakfast to a while new level, I have never experienced anything like it – which is why my Instagram has been predominantly food based- Melbourne, you’ve set the bar which is simultaneously amazing and soul destroying.

So in September I left Melbourne to start a new adventure in Auckland. I was hopeful that it was the right thing to do. New Zealand after all is a beautiful country and I thought what I needed after Australia was a little bit of down time. Time to reconnect and get used to my “new” me.

A huge lesson was learnt in this, you can think and expect all you want, but you won’t know until you are there.

There where signs, when I spoke about Auckland to people I would say “If I don’t like it, I can always go home” “I’ll give it through the summer” “I have to give it a chance”

My heart was already telling me that it was going to be a struggle. I didn’t tell people “I’m really excited to go to Auckland and see what its like” “Maybe if Auckland doesn’t do it for me, I’ll go somewhere else in New Zealand”

I was already focusing on the negatives, which is most probably why, after 6 weeks in Auckland I felt the most insane relief when I booked my tickets home to London.

As beautiful as Auckland is, something just wasn’t sitting right. People gave me a weird look when I said that I was moving back so soon. Their replies of “But you never even gave it a chance” stung slightly because I know that I could certainly have given it longer.

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Auckland city

 

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Whites Beach, next to Piha

But when you know, you just know.

I felt at home in Melbourne within the first 2 weeks of being there. I didn’t have many friends, I didn’t have a stable place to live, but I just knew that I was meant to be there.

I don’t have even a hint of that in Auckland.

The next chapter of my life is insanely terrifying but extremely exciting. I have no idea what my next steps are. Sure I have a few avenues to explore, but it means that I get to have the time to figure out what it is that I want on a professional and personal level. I’m really looking forward to reconnecting with old friends and most importantly spending some quality time with my family.

I have really missed writing, and though I won’t go into the ins and outs of why I stopped or decided to continue again, I’m excited to be using the space once more.

 

 

Ibd and alcohol

Oh dear.

I’ve become one of the bloggers who’s health becomes better and disappear off the face of the Earth.

I am still here! I disappeared partly because as a traveller, trying to get internet, or at the least internet long enough to post, can be very tricky.

And partly because, well, I’ve been very well these past few months and I’ve been living life to the best of my ability.

Continue reading…

Lets push things forward

It’s all kicking off in my life at the moment, and for once, in such an amazingly beautiful way, it takes my breathe away.

You can’t appreciate all the amazing things that happen to you if you haven’t had some struggle on the way. And as a lot of you know it’s all been a bit haywire since January.

Continue reading…

Meet Gabi

This wonderful lady got in contact with me one day through this site after reading my guest post for Me and IBD.

I can’t tell you why, because I don’t know, but I instantly felt a connection with her. And not in a, oh we have the same kind of story, kind of connection, but one where I felt we could be good friends.  Strange, considering we only briefly had small conversations via email but I immediately felt that I should keep in contact with her.

Continue reading…