Keep on going

Motivation.

Noun
The reason or reasons one has for acting or behaving in a particular way.
The general desire or willingness of someone to do something.

What to do when this magical word evades you? I wish I had the answer. I’ve been a bit poorly recently, migraines, tummy pains and this weird thing where my arms and legs keep going numb/pins and needles.

A visit to the doctor is most definitely needed but when you’re a traveller with no stable address it can be a little tricky.

Continue reading…

Amazing Acupuncture Man

What is Acupuncture?

“Traditional acupuncturists believe that the underlying principle of treatment is that illness and pain occur when the body’s qi, or vital energy, cannot flow freely. There can be many reasons for this; emotional and physical stress, poor nutrition, infection or injury are among the most common. By inserting ultra-fine sterile needles into specific acupuncture points, a traditional acupuncturist seeks to re-establish the free flow of qi to restore balance and trigger the body’s natural healing response”

To see the full article, check out http://www.acupuncture.org.uk/index.php?option=com_k2&view=item&layout=item&id=218&Itemid=100

When my Pouchitis was in full flare, I remember thinking I would try anything, absolutely anything in an attempt to try and solve this. Prolonged pain usually does lead to acts of desperation.

Hence how I found myself at the door of a Chinese medicine clinic, thinking why the hell not.

After my initial consultation, I was taken to a small room and had my pulse, on both wrists, taken. I was asked to lie on a table and then began the weird sensation of having needles, I can only describe as flicked, into different parts of my body. None of them hurt, it was just a weird experience. Especially when he left me for twenty minutes listening to some bizarre bird music with some tinkling in the background.

I won’t lie, after the session I felt nothing, but had somehow managed to end up with more consultations. I thought that maybe it takes time for me to feel a difference. In hindsight, my gut was telling me to bail. I should have listened but again, when you’re sick you manage to convince yourself that it could work if only you try.

Needless to say after the sessions, I was only left with a giant gap in my account and an overwhelming sense that I would never get better.

Since I have come to Australia, I have been trying different things to try and achieve health.

One of these, is acupuncture.

I was unsure as to whether this would do anything; after all I wasn’t exactly thrilled after my first experience.

As this was on the recommendation from a very trusted source (The Boy’s Mother) I thought why not.

Off we went, and the usual ensued. I was asked to write down my problems, what I eat on a regular basis, pulse taken and tongue checked.

I hopped onto the table, had the needles flicked in but this time, when he put the needle in a point on my foot I felt this overwhelming rush of emotion. I needed to cry but I didn’t want to cry in front of a stranger! I don’t know this dude, how am I going to cry on his acupuncture table?

He could obviously feel some discomfort and said to me that it was okay to cry, that the emotions need to come out.

So I started to cry and he put more needles in me and with everyone I started to cry harder and harder until I was sobbing. I tried after every needle went in to stop but the emotion was so overwhelming. It was like it was pouring out of me.

Once he had finished with the needles, he came by my head and pressed some points and I started laughing, this uncontrollable laughter just rose up and escaped. I tried to cram it back in, I had just spent 5 minutes sobbing uncontrollably, but it wouldn’t stop.

Once he had left me for 20 minutes I lay on the table and initially I was really confused. I was trying to work out what he had done, why I had felt like that and what was going on. In the end I decided to not question what happened. For some reason, it had and I was just going to go with it.

When the session had finished, Amazing Acupuncture Man had simply said that I had been blocking emotion. When he puts the needles in, he is trying to restore the balance within the body and emotion has to come out somehow.

Fair enough.

I’ve had a few more sessions since then and thankfully I have not had the same intense experience but I feel a shift within me every time I leave the table.

One session will leave me so whacked, I need to come home and sleep, others leave me feeling peaceful and calm.

There are a lot of articles out there saying why acupuncture does or does not work. All I know is what I felt and so far I do believe it is helping.

I feel a little more in control of my emotions, and a little more grounded. Even if this doesn’t help me on my path of trying to achieve success with my IBD, at least it will help my overall health and state of mind!

Freaky Friday

Stumbling to the bathroom I am aware of how large my stomach feels despite the fact I have not eaten yet.
Mouth is dry, head feels like cotton wool. Its like a hangover but without the booze or the fun of the previous evening.
I sit on the toilet trying to wake up, realising that I’ve only clocked about 4 hours sleep I yawn sleepily and am disturbed to feel a sharp pain shoot up my left side.
Feeling suddenly awake, I feel a deep spasm and a wave of nausea hit me. Grabbing the side of the radiator, I gingerly stand and breathe deeply until the spasm passes.

Opening my eyes everything’s a tad hazy, and I realise I’m on my back staring at the ceiling. Fab. I’ve passed out.
Slowly getting up I go downstairs and wake up the boy

“Baby, I’m going to the hospital”,

Considering he’s been trying to get me to hospital a good few days before this, I would have thought he would have been a bit more enthusiastic. Instead I am met with a grumble of it being early and that we should go later.

Sighing, I call a taxi and inform work that I will not be making an appearance today.
Waking the boy again, he is disgruntled but happy that I am finally making my way to the hospital.

After the initial wait in a&e, which for once doesn’t take that long, I am asked to put a gown on and pee into a pot.

My pee is decidedly shy when asked to make an appearance and I spend at least 15 minutes trying to coax it out and inevitably pee on my hand. The moment I have excruciatingly filled the pot, I pee like a normal person instead of a dribble, my bladder laughing at me.

I conclude that all my organs hate me.

Abdominal xray and a chat with a doctor who clearly hasn’t a clue what an internal J Pouch is. Once again I feel like I should carry a diagram of what my operation entails and what my insides look like.
More waiting, some sleeping, 2 nurses try to take blood but its not happening, I’m pricked with needles four times and my blood just isn’t playing nice.
Fifth times a charm apparently, but even then they have to wiggle the needle to get the tubes filled.

I get told I’m going to a ward and I start to get upset. I hate staying in hospitals and every time they put me on a ward I end up staying for a prolonged period of time.
“We’re taking you up to page ward”
And I burst into tears.
Weirdly this time last year I was in hospital for a flare of UC and I ended up having an emergency operation.
What ward was I on? Page.
Tears are streaming now and I’m panicking, No ones told me what’s wrong with my pouch and I’m so scared.
The boy manages to calm me down and the nurses are lovely.
Fluids are hooked up and a chest xray is booked.

A surgical doctor sees me, I’m grateful for the understanding.
After examining me the doctor books an ultrasound stating that it might not be the pouch that is causing the initial problem.

After hours of waiting and several scans later I am told the reason for my pain is, the dreaded cyst.
The little sod has grown and brought some friends. I now have a 10mm cyst on my right ovary and 2 4mm cysts on both ovaries.

I am thankfully sent home with some amazing pain killers. These bad boys have me so drugged I’m just smiling at the world and dreaming of bunnies and unicorns.

So. I will now have a load of appointments to a) determine the outcome of the cysts b) sort out my antibiotics for my pouch c) maybe see my old gastro doctor for some help to live without the antibiotics.

Works going to love me, but as my mum and the boy said, my health comes first at the end of the day. I’ve always been really nervous about what work will say as I don’t want to cause a fuss. But hey, its not like I inflicted this upon myself so I’m afraid I’m just going to have to suck it up and get on with it.

I’ve been having days where I am super pissed off at life. I’m barely surviving let alone living, and I’m deeply annoyed at how I just can’t seem to catch a break.

4 months. I have 4 months to put up with it all and then I’m off to Australia. I just really hope my body settles down before then, my insurance is already sky high, the last thing I need is to get to Australia and be sick there too!

Keep your fingers crossed for me guys. I so desperately want to get better!

The cake is watching me

When I was given the hefty list of foods that I was not allowed on the fodmap diet, my first thoughts were “Oh my God no bread,” followed by “Oh my God no cake.”
I do enjoy a slice of cake. It is a common pass time of mine to catch up with a friend over a piece of cake and a cup of tea.
Sometimes I wonder why I am not the size of a house, and then I realise that it’s because I poo everything out at an alarming rate. Did you know that for a normal person 
Being on this diet I have found out many things. Mainly, how utterly appalling my self control is.
I know I’m not meant to have that piece of cake. That glorious piece of cake that is staring me down singing “you know you want me” and dancing in a seductive way with a fork, is on the “Not allowed list” It has wheat, and most importantly an epic amount of sugar in it.
Yet I am there, five minutes later, feeling guilty that I shoved that piece of cake into my mouth and I damn well enjoyed it.
However my J Pouch is not impressed. I have learnt the hard way that on top of the fodmap diet no no’s, sugar is out.
I always thought that wheat would be my biggest problem to cut but in fact its sugar. It is everywhere and I never realised I how much I had until I tried to cut it out.
It’s everywhere and trying to exclude it is so hard. So far I have only managed 4 days tops to exclude it and then I cave.
I managed to last nearly 2 weeks without wheat and all the other crazy no no’s and I got really upset and everything went out the window.
Being on the fodmap diet I have learnt that if I want to eat I have to take lunch with me. There are very limited foods I can pick up on the go and in a rush.
Even though I know that this diet is what could be the key from keeping me off antibiotics I am finding it difficult to stick to it. Having UC, the ops and now all the problems with the J Pouch, I have adopted the Fuck It mentality. I have missed out on so much and my illness prevents me from doing so many things that I do end up eating things that I shouldn’t. Why can’t I eat that piece of cake? UC has robbed me of so many things so why can’t I eat the cake just like everyone else.
I have been doing a lot of research recently regarding diet and Jpouch and have found some interesting information regarding UC and diet.
When I was diagnosed one of the first things I asked was “Should I change my diet?” I was told that I should be fine, and that when I am in remission that I can eat what I want and to just “listen to my body” when I am in a flare and not eat too many fruits and vegetables.
IBD takes the “one size fits all” and stamps all over it. It’s different for so many people; no wonder the doctors don’t recommend you start cutting certain foods out because what will flare me won’t flare you.
I wish they had recommend trying different diets, or at least planted the seed of researching different foods that could aggravate my UC. Especially now I am having the same symptoms I had with my UC except without an intestine.  
I hope that the gastroenterologists are starting to seek alternatives, to realise that though it is completely necessary to control the flare, that there could be an underlying problem that diet could help to address.
I hope that people with IBD see this blog and decide to do some research on what works for them. Sometimes doctors are so focused on getting the flare under control they don’t consider any other alternatives than those dreaded steroids, when a few changes in diet could relieve a lot of pain that some of us IBD sufferers have.
In the mean time I’m going to try harder to stick to this diet. What’s the point of preaching to everyone if I don’t heed my own advice?!
So Mr Cake, you and I will cross paths occasionally, I only ask that you stop doing that sexy dance with the fork because it makes me want you just that little bit more!

Diet

A few posts ago I said that I would be embarking on a new diet called FODMAP. This is to reduce the symptoms of IBS that comes with having IBD.
I was under no pretence that this would “cure” me of the issues I have been having with my Pouchitis. However I need to try different things in attempt to try and live medication free.
I have not managed to complete more than a week of this diet.
This is partly due to my seriously lack of will. It amazes me that I am strong enough to go through what I have, but stick chocolate/tasty bread/cakes in front of me and I cave; crying whilst I eat what is on the dreaded NOT ALLOWED list.
It’s also partly due to sneaky fodmaps lurking in foods that I wouldn’t have thought it to be in.
From previous experience I am aware that my pouch is in love with marshmellows. For some reason, perhaps the gelatine, it slows down transit quite nicely.
Wanting a sweet treat I picked up a rice crispie square. My pouch also loves rice crispies, so I thought it was a win win situation here.
Wrong.
Tucking into the amazingness that is the rice crispie square I decide to glance at the ingredients.
And there, glinting at me in its wickedness was the word Fructose.
Aye?!
What is fructose doing in my rice crispie square?
Other more obvious and yet annoying ones are onion and garlic powder that pop up in all soups/stocks.
I can’t eat out at most places because the majority of sauces will have onion and garlic in the base.
Burger places are excellent, providing the meat hasn’t got onion or garlic, as I can eat the burger and a side salad. Ha who am I kidding, chips. I was trying to take the moral high ground there and pretend that I eat salad with my burgers. I always go for chips, and if I don’t I’ll stare hungrily at yours like a dog until you ask me if I want one.  
Eating out limits me to plain rice, salads, without the offending cous cous, and wedges.
Lunch has to be prepared in advance or I will have to succumb to something containing fodmaps as there are no quick fixes in the “lunch-on-the-go” department.
Snacks are rice cakes with peanut butter, which are amazing but I am not entirely sure whether my pouch likes peanut butter, or even rice cakes for that matter!
I am deeply confused as to what is setting my pouch off and what isn’t.
As a result of this I have decided to cut back to epic proportions and am living on rice, chicken, potatoes and porridge, providing the milk is lacto free. I have only started this and it is going to be so hard I might cry a little bit.
I dislike eating the same thing day in, day out but for me to figure out what is bad for me I need to first stick to what I know is good so I can pinpoint what is aggravating my pouch.
They do say that it can take 24 months for the pouch to settle down completely, and considering I am only 8 months down, it still has a while to sort itself out. I have read of people’s pouches only settling down after 9months, sometimes a year. Perhaps mine is a slow starter.
Saying that maybe my pouch is just angry. He’s annoyed that he now has to do more than his job description and is making me pay for it. If my intestine had a fist he’d be shaking that bad boy vigorously.
Or giving me the middle finger.

The Method To The Madness

Over the past week I have been asked this question several times
“Why are you running a half marathon if you hate to run”

My response has been “I have no idea”

I took the time out to sit and actually think why am I doing something I really hate? Why could I not have raised money doing something I enjoyed?

I have always been a very active person. In school I would play netball, football, tennis, looked forward to sports days and what with being a hyperactive person, I was always on the move. University came and though I was never on any teams, I was studying acting and so was on a very physical course.

I love to be active.
Colitis slowly stopped me from being as active as I liked. I couldn’t exercise for long periods of time because I was tired constantly. When things were really bad I couldn’t even go for walks for fear of having some sort of accident. (Yes people, I do mean of the pant soiling kind)

When I had my operation, it took me three months to recover and be able to do a few shifts at work, let alone start any exercise.

The moment where I decided to run was after my second operation. It was partly inspiration from a friend of mine, Candice. I had seen her journey unfold, which by the way you should all check out here http://thetortoisewithnohair.com
and read the amazing journey about a girl who is running the world for Avert(ing) HIVand AIDS

And partly because I had been so sick of not being able to move. I wanted to make my body stronger. It had been through much and still had another operation to go. I wanted to take care of it.
I had no money to spare to go swimming or buy any work out dvds so I started to run.
I hated it (as you are all aware from my previous post) but I would get better with every run that I did and I slowly got addicted to the feeling of adrenalin kicking in when I realised I’d beat my PB. Addicted to the might rush of those feel good hormones rushing around my brain, making me love life and anyone I came across! Addicted to the fact that after a good, hard, long run, I would sleep like a baby.

I chose to run for my charity because doing a sky dive or bungy jump is something I really want to do. Its not a challenge for me and therefore not an achievement.
I won’t grow as a person from doing a sky dive, I mean sure I’ll have an awesome memory of it but I intend to do it when I go travelling.
Running is an epic challenge for me, it teaches me things I didn’t know about myself and it will continue to teach me because this mind of mine is going to have to be shown who’s boss at some point.

When I run this race in September I won’t be the same person who is writing this blog. I have a lot of learning to do, a lot of hard graft to get through and some revelations to share.
With this run I know that I will have put my everything into this. Raising awareness for Crohns and Colitis is something that means a lot to me. I want to reach as many people as possible with this fundraising so that those suffering know that they are not alone. Most importantly they don’t have to go through this disease alone.

Sure, I’m a little bit crazy for deciding to do something I hate, where I will spend hours every week clocking up miles, where I will have to most probably cancel dinner dates and catch up sessions in favour of training. But this run will just highlight the fact that I can do anything I set my mind to regardless of what I have been though. I hope that people with IBD can take something away from my journey and feel just a little bit better about their own. I can’t inspire people by just doing a sky dive.
I have to earn the right to be inspirational.

There is light at the end of this gloomy tunnel

“You can sound the alarm, you can call out your guards
you can fence in your yard, you can pull all the cards
but I won’t back down, oh no I wont back down
” Eminem, Won’t Back Down

What a week. 
I have been tested in unimaginable ways. To be told that I don’t have cancer or have to have surgery, to be then told I have chronic pouchitis. That I will be on long term antibiotics, and that my pouch will always give me problems.
All in a few days. 


My surgeon was not best pleased. “Why does it always happen to the loveliest of people” with those words I broke into tears in total agreement, why? Why does it have to happen to me? Why do I get all this bad luck my way? Tears streaming down my face and so many questions in my eyes.
He must get it a lot for he took it all in his stride telling me that life wasn’t far but we’re just going to have to get on through it. 

This week has told me that it’s okay to have a break down. I am after all, human. I can’t be strong all the time, and with everything that I am facing, its completely normal to gorge on chocolate, having it smeared over my face, mingled with the tears as I sobbed “Why me?” 
Obviously that wasn’t what really happened, I just watched TV and, respectably, ate some chocolate.
As The Boy pointed out, most people would have quit a long time ago, so its completely fine to take the odd timeout. 

The Boy has been amazing as always. Piecing together my broken spirit with his calm soothing words. His support is unwavering, which means the absolute world to me. 
He may not be the most vocal of fellows, or the most opinionated but he is always there, his presence always felt. 

Taking a day to allow myself to feel completely broken has allowed me to feel stronger about everything. It pushed me to apply for my Australian Visa. 
Sure I may go through more than my fair share of bad luck but its what I make of it. I can sit and wonder why or I can live my life. I can be sad and miserable about it or I can continue being happy with all the amazing things that I do have in my life. 

This is just another hurdle in the road I am following. I will overcome this, there’s the fodmap diet that I am going to try and no doubt document my journey. 
And if my visa gets approved then I will finally be on my way to Australia. 
Things are on the look up, I just need to trust it and believe in myself. I can overcome anything if I try hard enough. I’ve never given up before, I sure won’t stop now.

Yawn

I am just so tired right now.
Why?
I am not sure.
Since I’ve started training all I want to do is sleep.
I’ve been running in the mornings which is making me seriously sleepy for work. I nap in the afternoons, emerging from the staff room angry that I am awake, sporting crazy hair and a beautiful couch mark across my cheek.
At first I put it down to my body not being used to running regularly but after my epic 6.5km I took a little break because my body was clearly like wtf? and I am still completely exhausted.
Today, for example, I slept 13 hours, albeit I did get up 4 times (irritable pouch) and I woke up feeling like I had  less than 6 hours sleep.
I am seriously lacking energy.

I have been off antibiotics for over a week now and surprise surprise my pouch is throwing a tantrum. The diet is hard to stick to but I am sure with my consultation in a few weeks it will get easier.

Irritable pouch. What is it? I am hearing a few of you ask, well it means I visit the sacred place (bathroom) perhaps 6-10 times a day and once at night if I’m lucky.
Food tends to go straight through me and I get intense spasms and cramps.

The frequency is not so much an issue,  I can handle going to the bathroom a lot, its the cramps I can’t take. Its the sort of stop-in-your-tracks-and-stay-completely-still-so-your-intestines-don’t-burst-out-of-your-body kind of cramps.

I have found that the more exercise I do, the less cramps I have. I haven’t a clue why!
I’m slowly figuring out what my pouch likes and what it doesn’t. Onions and crisps are on the Me No Likey list.

Anyway, I just thought I’d give a quick update as I’ve been quiet for a few days.
I’ll keep you all posted on whether this tiredness lets up.