Liver Update

Just a quick update, my liver levels have been consistently normal for the past 3 months. This, my friends is exciting news and I’ll be off steroids within the next month. I’m also hoping that because my liver’s had a break from being inflamed and aggravated, that it will be able to fix some of the damage that has been caused. The liver is awesome like that.

Health wise I have been going from strength to strength. I’ve started exercising regularly and have been socialising like a maniac to make up for lost time. Which, now I’ve had my fill, definitely needs to calm down because soon I’m hoping to be in full time employment.

I need to learn to listen to my body properly because I do this to myself every time I’ve been poorly.

I get sick, I take time off to get better, go crazy with things to do and then end up tired and sick again because I just haven’t paid attention to those subtle clues.

You’d think that having lived with IBD since I was 19 I’d finally get the messages, but I’m stubborn and have acquired a few terrible habits such as not wanting to seem as though I can’t do everything that people my age are doing, and also, just not knowing when to say no.

This time round has been the longest I’ve had to take out from work, even after my operations – which seems crazy – but unfortunately, this time round really hit me mentally and so it took me longer to recover.

Going forward my plan is to try and strengthen my immune system/liver as much as possible so that in the next two years I can come off Azathioprine. Some of you may know from previous posts how much I hate being on medication, so the thought of lifelong medication doesn’t exactly fill me with joy. I also don’t exactly like the thought of being on Azathioprine for the next few years. The drug can cause some pretty nasty side effects long term (I’m looking at you increased risk of melanoma and lymphoma) so the sooner I can get off it, the better.

No doubt I will keep you all updated on experiments.  I did try some Ayervedic practices mixed with some Chinese herbs but as I was on steroids as well, I couldn’t actually see if it was doing anything or if it was the steroids just doing their thing. So I stopped. I still have some left over so may try it again, it can be tricky though because the last thing I want to do is try something that will upset my liver and the majority of my consultants aren’t thrilled with the idea of alternative medicine practices, despite finding that they have helped my IBD quite a bit.

I find it can be very complicated, all the doctors I have come across in London, bar one, are very adamant that alternative therapies do not work and have discouraged me to use any. However in Australia I met a few that were quite open to certain types of therapies and as I said above, it really helped with my IBD.

I would like to research a naturopath because some peeps that I used to see in Melbourne were incredible, but I found them through recommendation, which I have found the best way for alternative therapies. It helps to weed out the weirdos and the ones who really don’t actually know what they’re talking about.

I remember once in London trying an acupuncturist who was mediocre at best but didn’t have a reference to compare it to. It wasn’t until I was taken to one on the Gold Coast did I realise the help that acupuncture can be. You can read the post here.

So yes. In short, things are on the up. I still have a long way to go but I’m getting there, albeit very slowly.

Stay well

x

Obligatory End Of Year Post

As I sit to type this, I have about 5 unfinished blog posts in draft for this blog and 3 for Oh No Not Another Blogger.

Why?

Because my head is a crazy mess and I can’t sit still to sort it out for more than 10 minutes. The level of restlessness I have been experiencing is paramount. I have so many ideas, so many thoughts to share that trying to get them all out is becoming annoyingly frustrating. I start to type one thing, which then ends up being something else, that isn’t quite what I wanted to say in the first place and I get irritable and have to leave it alone.

I know as a writer – I still feel like an absolute liar when I utter those words and want to erase them whenever I type them – that to get better, I must write. No matter how shit I think it is or how shit it actually is, I won’t get better unless I practice. I won’t find what works for me, or what other people enjoy reading or even help others with their journey unless I write.

I’m finding it difficult to write at the moment, which is bizarre because I have a lot of time to be able to do so. All I wanted was time to write and now it’s here, its proving to be quite arduous. There are countless ‘could be’ explanations as to why this is the case. I’m on medications which are altering my state of mind and my body is broken. I don’t really know why when I sit to write, I keep typing and erasing or sitting and staring at my screen.

It is maddening and I am hoping that I can slowly push through it, pretty much like everything else that’s happening in my life at the moment.

Onto the post at hand. 2015 you’ve been a bit of a chaotic one haven’t you?

Generally I don’t like to make a comment on the whole of the year. Good and bad situations will arise however the universe sees fit, however, 2015 was the first year that I spent back in the UK after my stint in Australia and it just so happened that time wise, my first year back coincided with the New Year 2015.

It has been turbulent to say the least. I was in and out of hospital pretty much from the get go, March saw me in with tests for my liver, April gave me an over night stay in St George’s for a mini stroke and September kept me in St Thomas’ for a week with Jaundice.

I was officially diagnosed with Autoimmune Hepatitis in July but its been suspected that I’ve had it since 2009 and was just none the wiser.

BUT.

My J-Pouch, though its been a little bit bratty this year, hasn’t given me too many complications, and going forward looks to be keeping its shit together. I went on an awesome holiday to Portugal, I’ve met some incredible people this year and found some beautiful friendships. One of my besties came over from Australia and lived in London for a little bit, I miss her greatly, and some existing friendships/relationships have blossomed, I’m looking at you Sy, your support this year has been phenomenal.

Though these days you can find me struggling through the stream of shit that life throws at me with an inconceivable look of befuddlement on my face, I have so much to be grateful for. My friends and family continue to be a tremendous source of support for me, I have so, so, so many beautiful people in my life and most importantly, I am alive. There are days where it hurts, and scarily days where I don’t want to be, but I am still here fighting.

2016 is the continuation of a long journey for me and my health. Hopefully a road which entails more good days than bad. I believe it’ll be a slow one. Probably a pretty boring one, but hopefully one filled with lots of love and care.

So to all my beautiful friends and family, raise your glasses with me, I hope yours is filled with champagne, mine is with Schloer, the adult soft drink (insert laughing smiley with tears here)

Here’s to the end of 2015, I hope that you can look back on it and find some beautiful memories to celebrate.

Here’s to 2016, a New Year. For those who wish for it to be a new start, a place to implement new habits, my very best to you. I hope you achieve them. For those who abhor the idea of New Year New Me, may you continue to build upon all that you have achieved already and for those with no fucks to give, just have a drink for me will you?

But for all of you I wish you happiness, in whatever that may be. I wish you all to be as healthy as you possible can, I wish you all to sparkle brighter that damn unicorn that poops glitter.

Here’s to 2016,

CHEERS!

 

 

I’m sorry, I don’t have any glitter

When I wrote my previous blog I was really inspired to write again. I had high aspirations for myself; had made lists. I had loads of ideas on what to write and with the time off I currently have, I was ready to throw myself in and get cracking.
Except the last few weeks have been really hard and I have found myself in quite a dark place. Steroids do not help my mental state, it seems that every course I go on, the side effects are worse. I’ve been on 40mg for the past 8 weeks and I really can’t wait to taper off them. Battling with low moods (and that’s a nice way of putting it) in general is hard enough without medication sticking its unwanted nose in too.

“Heeeeey you” depression eyes me up with a hint of a smirk, “I brought friends”

Anxiety gently shakes in the corner, whilst Medication takes his jacket off and climbs into bed with me.

I protest

“But I have to get up, I need to make breakfast, shower, go for a walk, I’ve got things to do. I don’t need, no, I don’t want you here”

Medication strokes my hair and Depression sits at the end of my bed.

“Why would you do that? You don’t need to do any of that.” He looks at me whilst lighting up a cigarette.

“You can’t smoke in my room, get out, go away” I try to sit up.

Medication puts his arms around me, nuzzles in closer. Depression chuckles, whilst Anxiety decides she wants a piece of the action and gets into bed too.

“Seriously, get the fuck out of here”

“Temper, Stephanie. That’s not very nice is it?” He spills ash on my bed. I sigh and close my eyes, realising he’s not going anywhere.

I would regard myself as a positive person, a fighter. I don’t want to be here talking about all the things that are wrong with me or the things that I can’t do but it seems as though that would be an unfair representation of the illness/struggle.
It is not all motivational pep talks in my head about how I can fight this and how I will get better. The last few weeks have more been on the side of “what’s the point?”
That’s awful! I don’t want to feel like that. I don’t want to wake up and just listlessly go through my day with Depression holding my hand, Medication on my back and Anxiety running in cirlces around me. I’m tired of friends asking me how I am and my response isn’t a positive one because I really want it to be positive, I really want to say “I’m not 100% but I’m getting there”

I’m afraid I don’t have any sparkles of good news for you.

But this is the reality of it and I thought I’d share with you what’s going on so that if any of you are in this position right now, you don’t feel so alone.
How am I coping? Well I’m trying to cut myself a little slack. There is a lot going on, mentally and physically, and beating myself up about not feeling particularly chipper is not going to help me.

It’s all about those baby steps. Small things that help me to feel a little better. That could be anything from reading, a cup of tea or a chat with a friend.
Keeping busy. Or at least trying to. I’m a little limited in what I can do without my body saying “nope, had enough buddy, you’re taking a time out” and sitting me down. Having said that I don’t want to mope around in my pjs all day so I go for walks, take really rubbish pictures on my iPhone, meet friends for tea. We’re always coming back to tea. I research things about Ayurveda medicine and the immune system.

I read lots of blogs and soon I will be getting involved in all things Christmas. Side note. I love Christmas. I used to hide and grumble about not really giving a fuck but truth be told I really love the festive season. Glitter, mince pies and festive cheer. Love. It.

It’s not much, and compared to what I used to do (hold down a full time job and an active social life) it’s pretty meagre in comparison.
However, that’s just the way things are right now. Its better that I accept it than try to fight it and make myself feel even worse. It’s just a temporary state and I’m sure that in a few months I’ll look back and all this will just be something that I went through and came out on the other side.

I’ve rambled enough so I will bid you goodbye but for any of you who are struggling out there know that this too shall pass. Nothing is permanent and hopefully soon we’ll all be back to throwing out sparkles and glitter. Till then here are some things that made me smile recently.

♥  Filter coffee from Federation at Brixton.

♥ Flowers. I went to a flower market recently and brought some beautiful peonies. The day was lovely and I got to catch up with a good friend, drink tea and have lovely chats.

♥ Today some random dude in Brixton looked over at some pigeons, then at me and said “ooo, pigeons” as though I had never seen them before. I smiled polietly, willing the lights to change so I could run away.

“Very spiritual, that.”

A massive flock of them flew into the sky and he goes “oh look, some sparrows.”

No dude, still pigeons. Change, lights. For the love of God, change.

 

Choose Wisely

When I was diagnosed in July with AIH, my gastro told me that I had to take steroids and I flat out said no. I know what they do to me, I don’t like it, there has to be another way.
Bless him, he was like okay cool, so you don’t respond well to Prednisolone, let’s put you on another steroid called Budesonide which is broken down in the liver and you shouldn’t encounter so many of the other side effects. You have to go on steroids though because if you don’t, you’ll cause scarring of the liver and then you can’t regenerate from that. You’ll cause permanent damage which will mean a liver transplant, or death.

Annnnnd I ignored him.

Not because I was being a dickhead. Okay, maybe only slightly being a dickhead, but with the care of my bowel, I never really explored trying to fix it with diet or something other than really toxic drugs. I never had the opportunity to explore nutrition or naturopathy. I just went ahead and did what I was told, but this time I said no. This time I stood up and said it is my body and I will decide how I want to proceed with my care.
I want to feed it glorious anti inflammatory foods (which by the way means air. No coffee, no alcohol, no bread no pasta, no cheese, no ice cream, no chocolate, no sweeties, No FUN. NO LIFE!) I need reduce stress, do yoga, maybe buy a juicer, give my shoes to homeless people and the universe went PAH! Looked around and said, guys are you listening to this one? Then put me in hospital for a week with Jaundice.

My gastro came in, stood by my hospital bed and said “I’m sorry”
Mate, why are you apologising? I was all like NO SCREW YOU AND YOUR MEDS, putting my middle fingers up, dropping mics and look where that got me? I ended up in hospital, the place you were trying to prevent me from ending up in. So no. I’m the one that’s sorry and I’m even more gutted because now I had to take the Prednisolone because my liver said “Fuck this shit, I’m out.”
Lesson? Pick and choose your battles peeps. I learnt that when your liver is trying to escape out of your ribcage to roam free in meadows, you should listen to a doctor who has trained for years in what he is practising. This dude isn’t a random hobo in a white coat and stethoscope who rocked up to say “Hey, have you thought about trying coffee enemas?”

I’ve never seen my doctor in a white coat actually.

Anyway.

I’m not saying that I won’t go down the route of natural medicine, because I probably will at some point. I don’t believe that I should be on medication for life, which is what seems to be the general consensus. I’ve been told that diet has no effect on what’s going on with my liver. I find that super hard to believe. Did you know that the liver has hundreds of different jobs and quite a few of them are intertwined with digestion? You’re trying to tell me that the food I put into my body has no correlation with my liver? Hm. I know I’m not a doctor, and I know that I sort of shot myself in the foot by being all gung ho with my approach at first, but I really believe that there has to be a way in which I can manage this condition without having to be on medication for life.

The stark reality of this disease is that if I leave the inflammation untreated, my liver will fail and I will have to have a transplant or I will die.

My concern right now is to get the inflammation under control, which is slowly happening, and then find ways to be able to control it and live the best life possible.

Whilst I completely respect my gastro, I also want to be as informed as possible with my disease and know how it is going to affect me now, and in the future.
My gastro has spent years learning what he specialises in (gastroenterology with an interest in Hepatology) and who am I to go against years of training? At the same time I am more than within my right to question what is best going forward. As a patient I think its right to take a pro active approach in my care, that I learn about the liver and how my disease effects it. Knowledge is power and I want to be in the best position to give myself the chance to lead an amazing life. I don’t want to sit back and be like “Oh sure, you want me to take this immunosuppressant which potentially could give me cancer after years of taking it?” Sorry what? You want me to take meds to control liver disease to then possibly later down have cancer… My odds in this lifetime are not that great.

1 in 250 people in the UK are diagnosed with Ulcerative Colitis every year and its on the up.

20% of those will have surgery

20% of those will have complications.

I landed in all of those.

10 people in 100,00 will be diagnosed with AIH.

That’s pretty rare. I landed in that too. I do not trust myself with any tiny odds.

Wait, maybe I should start playing the lottery?

Sorry, I digress. I just mean that I think its wise to be as informed as possible. I don’t want to be here at 50, if I make it that far, thinking Damn, I really wish I had researched things a little more. We have a wealth of knowledge at our fingertips, it would be a shame to waste it.

Bah, there is no way I’m ending this blog post on such a corny note, and so please check out this song that I found which I think it pretty much how my liver is at the moment 😉

 

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

photo 2

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.

 

 

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…

You have to listen

Recently I spoke about how well I’m doing within my running but with the good, evidently comes the bad and I want to tell you about that too.

I was aiming for my longest run. So far the furthest I have gone is 4.51 miles, which is about 7k and my aim was to go just a little bit further.

Though the majority of my runs have been quite tiresome, I thought it was a reasonable goal. I’ve been getting a teeny bit faster with my 5k’s and thought a long distance run was in the cards.

Continue reading…