A Period of Patience

patience

noun

1. 1.

   the capacity to accept or tolerate delay, problems, or suffering without becoming annoyed or anxious.

   "you can find bargains if you have the patience to sift through the rubbish"

   synonyms:

   forbearance, tolerance, restraint, self-restraint, resignation, stoicism, fortitude,sufferance, endurance;

They say patience is a virtue, and when you have a chronic illness it is definitely an attribute that you need on your side.

For me, being patient has pretty much been a permanent state of mind for the last 4 years.  Patience waiting for appointments, for treatments to work (or not), for surgery, and most of all just for something to change for the better, to improve.  In fact, I've probably been trying to have patience for a lot longer than that, as I always hoped that in the years prior to my endometriosis diagnosis that my health would change and the pelvic pain I experienced would gradually ease and go away.  All the doctors said it would improve as I got older anyway - how wrong they were!  

Positive change is like a little bit of sunshine - if you can find some small improvement, it helps you to remain patient and optimistic that more positive changes may happen in the near future.

If instead you are seemingly stuck feeling the same way all of the time with no improvement to your physical or mental health, then patience can be harder to maintain.  Your calm and patient self tends to become elusive, and instead you feel constantly irritated, upset, angry and out of control.  I have felt just like this many times during my health and endometriosis journey, and it is a truly awful place to be.  It is so hard to get yourself out of that negative head space as well - people telling you to 'snap out of it' have no idea how it really feels to feel so controlled by your state of mind.

At the moment, I am feeling a bit stuck, because I'm dealing with constant bleeding, intense pain and the need to take regular pain medications (and anyone who knows me well will understand how much I hate taking pain meds!).  I am disappointed to be in so much pain currently, but have to keep my patience and perseverance going, and remind myself that I am only 10 weeks out of major surgery for my endometriosis and that 'good things take time' as the Mainland Cheese TV ad says.  But this time, unlike other dark times in my life, there is an abundance of hope that things will gradually improve.

As my Gynaecologist said to me when I attended my post operative appointment a few weeks back...

                  "All we need now is time and patience".

Sick, Sick, Sick

I'm so sick and tired!

Sick of bring chronically ill

Sick of feeling stuck

Sick of putting life on hold

Sick of feeling like I have no control over my body

Sick of being treated like a medical mystery instead of a whole person

Sick of trying to take care of myself and not feel any better off for it

Sick of being poked and prodded

Sick of being judged and patronised

Sick of doctors treating me like I'm some kind of nuisance

Sick of being ignored

Sick of not being taken seriously

Sick of doctors telling me that all of this must somehow be my fault

Sick of poisoning my body with medications that don't help

Sick of people telling me it's all in my head

I'm just so sick of everything...

I Don't Know About You, But I'm Still Feeling 22

Tonight as I sit here in my cozy bedroom with my little lanterns providing soft light to my thoughts, I'm musing about the coming year.

No, it's not New Year's Eve, but the eve of the celebration of the day of my birth.  Tomorrow, I turn another year older, so in a way it feels like a mid year New Year and another fresh start.

What do I want from this year?  Well, I would like to be cured of my chronic illnesses, but magic wands are still in the early stages of research and development!

Seriously though, what would I like to see happen this coming year?  Some thoughts...

• For my health to improve further, or at least stabilise.  This would provide me with a more stable platform to live my life by for sure, and would also make planning for the near future just that little bit easier!

• To find a medication or treatment to relieve or at least manage my symptoms.  This really has been an ongoing struggle for me, and I've never found anything that works really well for any longer than about 2 weeks at a time.  If that could change, it would be lovely.

• To do well in my final University papers and graduate in July!  It's only a short course, but I am so proud of myself for achieving this during 2016 despite all of the challenges life and my health have thrown at me.  Now to decide if I want to do the follow on course...

• Get back into my guitar playing, and sing more.  Guitar has fallen by the wayside recently as I have just been too fatigued to work on it, but I'm hoping to get back into it soon.  Music is one of my greatest joys and is a wonderful form of stress relief, so I will make more of an effort as energy and my Uni schedule allow.

• To develop a greater acceptance for where my life is at, and to be at peace with the fact that I'm exactly where I am meant to be.  Long term goal this one, but with my faith, family support and perseverance, I'm determined to be more accepting and patient with myself.

• Make sure I nurture my body and love it as much as I can in every way possible.  To feed it well, exercise regularly, rest when it tells me and just to take great care of it.

• Figure out a practical career path.  The Physiotherapy dream is still burning bright in my heart, but at the same time it feels as if it's fading away from me.  I know I would make a brilliant Physio (not to blow my own trumpet), but I'm coming to terms with the fact that pushing myself into 4 years of full time University study may not be the smartest thing to do!  I'm not ruling it out, but could really do with a solid Plan B in case it doesn't work out the way I have always hoped it would.

• To get back into art and creative pursuits more.  I am loving my University study, but it's exhausting me to the point that I don't really have the energy to do much else!  So I would like to find a little bit more of a healthy balance in my life between my study, online, real and creative worlds.

• For my family to know how much I appreciate them.  Saying thank you never feels like anywhere near enough of a repayment for all that they do for me on a daily basis, so it's kind of a wish really, but I hope they know in their hearts how grateful I am to have them in my life.

• To one day be well enough to take my brother out on an expedition like he has done for me so many times, and to just laugh and have fun with him without being in pain or having to find a bathroom.  That would be nice.

• For people to see me as normal, and to see past my illnesses.  I'm still a lovable, creative, kind person with a pretty good sense of humour, and I would like more of the people in my wider circle to realise that and treat me like they're talking to me as a person, not just someone with illnesses.

And just to live another great year, taking as many opportunities that come my way as I can, having fun, getting to know more people and just living the most beautiful life I can.

Turning a Corner with a New GP

Today was the first day in quite some time that I came away from a GP appointment feeling somewhat happy.  That's an achievement considering how my last few appointment have gone!

So, I took the plunge and went to see a new GP today, in the hope that she would be more helpful and empathetic than my current one.  Well, she's not exactly new because I have seen her a few times when my GP hasn't been available, so we're not complete strangers.

The GP I have been with for the past 18 months started out ok, but as time has gone on it has felt more draining and less productive going to see her, as she has just acted in a sarcastic way and not done anything really helpful for me.

Although I'm not naive enough to think that any GP can cure me, all I ask is that they treat me if they can, suggest things for me to talk to my Specialist about or just give me some support and empathy along the way.  You wouldn't think that could be too much to ask, would you?

But sadly, it's not that easy to find a GP who has all those attributes rolled into one nice and friendly package, or not that I've found anyway!  So heading into an appointment with a new GP today was a bit nerve wracking to say the least, and I was practising my meditative breathing in the waiting room.

In the end, walking out of that appointment I felt like a weight had been lifted off my shoulders.  My new GP,  Dr S, was kind, friendly, empathetic and she even noticed a couple of changes in my physical appearance, even though the last time I saw her was in early January!

She suggested a couple of things to bring up at my Gynaecology appointment next week, went over my current health situation, and had even read my notes before I arrived to see where I was at!

It was a real breath of fresh air, and hopefully our Doctor-Patient relationship will stay that way for a good long time yet.  

In the back of my mind I know that it might not last, and that over time she may get a bit tired of caring for me, but all my hopes are pinned on this not happening.  Hopefully as long as I try my best to take care of her, she will do her best to take care of me.

I'm Not An Inspiration

Lately a couple of the lovely young women in the Endometriosis Support Group that I run have told me that I'm an inspiration to them. 

It's a weird thing to hear, because although I know it's meant as a compliment, it also makes me feel a bit uncomfortable to be honest. 

There's this whole impression people have that anyone who, for example, is in a wheelchair or has cancer is inspirational, and in some cases they're put up on a pedestal and told how brave they are etc.

What I want you to know is that I (and most others with chronic illness) don't want to be 'inspirational' or be made to stand out just for living my everyday life. Yes, my life is very different from yours, and yes, I struggle, but I'm not here on this earth to be a role model or inspiration to anyone. 

I just want people to acknowledge and try to understand how my illnesses affect my life, and support me as best they can.

But I don't feel it's right that I should be called inspirational over anyone else. All of us humans are just trying to live the best life we can, and all of our circumstances are different. There's no fair way to compare any one person to another person, because we're all different and unique, and that is what makes the world such an interesting place. If we were all the same life would be dull, and they do say that variety is the spice of life after all!

And really, I don't feel like an inspiration in myself, and a lot of days I actually feel inadequate because of my illness. I feel like I'm not doing enough, or being enough or using my time to it's fullest potential.

But I'm doing the best I can with what I have in this moment, and that's all any of us can do.

I'm not an inspiration, and I'm quite happy with that. I'm just one sick girl with a laptop, trying to make her own way in this crazy and diverse world.

Being My Own Cheerleader

I know the title sounds cheesy, but that exact phrase was what sparked the idea for this post really, so I'm stuck with it!

Before your imagination starts running wild, no I have not joined a group that wears short skirts and waves pompoms in the air while chanting slogans for football teams!

The word cheerleader applies to chronic illness in my mind as a way to describe supporting yourself.  To cheer yourself on and be a strength that you can draw on when you need it most.

In the 2 and a bit years since my Endometriosis diagnosis, I have ended up with an unusual kind of team on my side, which is made up of immediate family, a few close friends, doctors, other medical practitioners etc. 

But although I have my 'team' around me, I have learnt that you can't survive the day to day chronic illness life by solely relying on your team mates.  Sometimes they get tired, burnt out or just let you down when you least expect it. 

So, although the team is an important part of your support network, a lot of the strength and will to carry on has to come from within. 

It has to come from you.

Believe me, some days it feels almost impossible to carry on, and you feel like there is absolutely nothing left in the tank.  This feeling of being down and hopeless can last anything from a few hours to many days in a row.  It's so important to let yourself have some down time, because it is exhausting being your own cheerleader and always willing yourself to carry on.  Don't let your brain tell you that you are weak for shedding a few tears, or having a day where you just need some time alone to process things.  It's completely natural, because let's face it, no one can be happy and brave all of the time!

But it is also important to reboot.  To use that inner strength and courage to bring yourself out of a dark patch.  To see the light again and bring that positivity that lies inside all of us to the surface, even if it feels like it is buried deep within you.

Today may be a bad day, a hard day, an impossible day...

But tomorrow is a whole lot of new, a clean slate full of possibilities.  So dig out that inner cheerleader and help yourself through whatever is going on in life right now.  Once you see the light again and realise that what you do have is precious, you will feel more positive and the burden that you carry every day will feel a little bit lighter.

How Do I Take Care of my GP?

This is a question I thought I would never have to ask myself!  Mind you, there are a lot of things I thought I would never have to endure or even think about, and a lot of those things have happened anyway, so I guess this weird thought should come as no surprise...

I have an ongoing issue with General Practitioners.  It sounds terrible to say, but I've been through a couple of different ones since my diagnosis just over two years ago, although I have been with the same one for over a year now.

The issue is that, for the first little while, they seem really caring, helpful and proactive in helping me with all of my 'complex' health issues.  They suggest things to try, and do their best to help me cope and obtain treatments or diagnostic procedures to try and figure things out.

But after a while, they seem to tire of me and become flippant, frustrated and not so helpful.  There are no more things to suggest (unless I suggest options myself and ask their opinion), and no more medications or interventions to try.  They start to tease me when I arrive with new symptoms, or when I dare to ask questions or share how I'm feeling in the hope of finding a little compassion, sympathy or support.

This quote from a blog post of a chronic illness patient really brought it home for me...

Once you reach a certain number of diagnoses, it's like they check out.  I can feel it.  When they see me coming, they begin to put off a vibe of annoyance and distrust.  It's heartbreaking.  I need them.  I need to be given a fair shot.  But they don't want to deal with me.  I'm too complicated.

To look at it from a GP's point of view, I can understand their frustration to a point.  I understand that it hurts them to know that they can't 'fix' me, and that they might even send me away following my appointment without being able to do anything directly to help with whatever I am dealing with at that time.  Here is a good blog post about working with chronic illness patients that has been written by a Doctor -

http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease

But I'm not just there for a new prescription or in the hope that there is some new 'magic bullet' that will fix all of my problems.  I'm not that naive.  Being on the chronic illness road for over 2 years means that I have learnt a lot of things, including that there is no cure (and there won't be one in the near future either) for any of the health conditions that I am dealing with.

Sometimes I just want them to reach over, hold my hand and tell me 'That really is no fun, and I'm here for you.  How about we do some blood tests to see what your so and so levels are like?'  Or perhaps suggest what topics are most important for me to discuss with my Specialist next time I see her?

It isn't all about pulling out your prescription pad and giving us more medications.  It's about compassion, and that is what I think is most lacking a lot of the time at my appointments.  It is just a small thing to reach out to a patient and let them know that you acknowledge what they're going through is tough and that you are here to support them, but it can make all the difference to someone who is travelling a long road through chronic illness.

I often feel left adrift and on my own between appointments with the Specialist who is managing my health conditions, so support from my GP is paramount on a day to day basis to help us get through.

So to my GP, as well as trying to take care of myself, I will try to take care of you so that you don't get burnt out and dread seeing my name on your patient list.  But the effort goes both ways, so please try to take care of me too, and support me when I need it most.

Thank you.

Losing Control

I cried this morning.  I'm not ashamed to admit it, because it's perfectly healthy to express your emotions.  To those girls out there who bottle things up and keep everything on the inside until it becomes utterly overwhelming, know that it's not weak to cry if you need to, no matter the circumstances.

Anyway, onto today's post..

Today I just wanted to be normal.  To have a normal amount of energy and stamina, and just be able to go out into the world and do things like everyone else can.  Today was a day that I mourned the loss of my old life, and reflected on the new and different, but still good life that I live today.

Living with a chronic illness not only changes how you live and the things you're able to do, but also to an extent it changes who you are.  For me, in the beginning all of this change and uncertainty it was very difficult to take in and adjust to. I would like to say that I have gotten better at accepting change in my life, and the constantly shifting landscape of my health, but some days I definitely still feel like a fish out of water!  I've been reflecting on change and control of life over the last couple of days, so I thought I would write a few of my thoughts here...

Let's all face the facts here - we all crave control in our lives.  Control of what we do, where we go, what we wear and what we say and how we act towards others are just some of the things that we get to decide on each day.  A lot of these decisions we don't even consciously register in our minds, because they are made in a split second by the pre-frontal cortex in our brain.  Having control of different facets of our lives makes us comfortable in the knowledge that we are in the driver's seat, and helps us to 'live in our comfort zone'.  Everyone likes to feel like they're in their 'comfort zone', am I right?

Comfort is therefore the complete opposite of fear.  Fear generally rears it's head when we are facing change, or coming to terms with something, for example a new job, house move or the start of a course of study at Uni.  In all of these 'new things', there is an element of loss of control on our part, because we are jumping into something new and unknown that we haven't done before.  So the feeling of loss of control and fear of the unknown come together, and pretty much make us freak out!

You may be asking 'What the heck does all this rambling about control have to do with chronic illness?'  Well, in a way the same principles of loss of control and fear apply to chronic illness in the same way that they do in most people's everyday lives.

Thinking back to before my Endometriosis diagnosis, I had a job that I loved and was forming a 'plan' in my mind about what I was going to do next regarding Uni etc.  All of this came crashing down around my ears as I got more and more unwell, had to leave my job and became this creature floating around in pain all of the time!  Getting the diagnosis helped for sure, because then I knew that it wasn't all in my head and that I was being taken more seriously now that I had a medical 'label' so to speak.  

But to be honest, my feelings of fear and loss of control only worsened, because now I had this new, scary diagnosis and I really had no idea what I was going to do.  So, similar to what you may experience in an everyday sense, I was basically plucked out of my life by one of those metal cranes like in a toy vending machine, and plonked into this whole new medical world which I had no idea how to navigate!

Over the past 2 years I have adjusted and it has become easier to live this new and different life of mine, but still, the goalposts are constantly shifting and there is always one thing or another to deal with.  I'm definitely not some shiny, brave chronic illness person who feels no fear and has a magic wand to solve all her problems!  Some days it all just seems like too much to cope with, but mostly I work through the fear and just break down into steps how I am going to cope with or manage what is happening to me in that particular day or moment.

An important part of coping with this is to have a support network around you, so that you know you have someone to talk to if you need to.  I'm incredibly lucky to have a supportive family, a few close friends I can confide in, and my Endo Angels support group who are always here to support me and lend a listening ear.

Comment below and let me know if you too have feelings of fear and loss of control in your life.  If you do, know that everyone does no matter what their situation, and it's perfectly normal!  It's just about finding some coping strategies that help you to work through whatever you may be going through.

Gee, this post feels like I'm totally rambling!!  But, it's what has been on my mind lately, so I thought I would come here and share...

Taking the Plunge

Today I made a start on the next phase of my life.

I took the plunge and applied for entry into a distance learning Course through the Open Polytechnic.

It may not be exactly where I would have liked to have been right now, but my Endo journey has complicated life a bit and I haven't been well enough to follow my dreams like I would have if I was well.

That's the thing with chronic illness - all best laid plans can (and usually do) go completely out the window!  I've found that I have had to take some time (in my case a lot of time), step back and take care of my health first.  There's no point in worrying about what you're not doing, because that's not going to help you get to where you want to be.  In fact, it;s probably just going to make you more stressed, and therefore even more unwell, which isn't what any of us spoonies want.

So, now to wait and see if I get accepted onto the Course.  Hopefully I do, because it will give me another focus and be great for my mental health (although maybe a little tricky with brain fog!).

Doing this Course doesn't mean I'm cured by any means.  I am still in pain, and have chronic nausea, chronic fatigue etc.  But I have gotten to a point where I think I am stable enough to tackle this.  If it turns out I'm wrong, then it will just take a little bit more patience and perseverance, but I WILL get there in the end.

Flying the Endo Flag

Sometimes you just have to stand up.  You have to be the brave one who gets out there and lets the world know.  Once someone starts, others will follow but there is always one person who starts the ball rolling and is the first link in the chain.

This week that person has been my Endo Angel friend Brooke.

She has decided to organise all of us Endo girls to complete an awareness project, which is based on the idea of the Chronic Lyme Disease awareness website 'Suffering the Silence.'  The idea is that you paint on your arm the name of the disease or chronic illness that you have, take a photo and share it on social media to raise awareness of all the health conditions out there that fall under the banner of 'invisible illness.'

Invisible illnesses are the ones that people fight every day, but you can't see.  We may not be in a wheelchair, on crutches or have any visible outward signs that we're unwell, but on the inside we are suffering just as much as others with recognisable illnesses.

Endometriosis is a classic example of an invisible illness.  The support group that I started about 6 months ago now has over 100 members, and if you browsed our profile photos on social media, you would see that we look like beautiful young women and appear completely normal.  But the internal battle that we fight daily is anything but pretty.  The chronic pain, nausea, draining fatigue, insomnia, bowel and bladder issues, interruptions to work, study and social life - I could go on.  But the point is that none of these symptoms can be seen by the average person, which leads to negative comments like 'It's all in your head' or "You look fine, so why are you still sick?'

This is the reason why we need to put ourselves out there and raise as much awareness as we can.  Why, when people ask us what is wrong with us, we try to educate them a little bit about our invisible illness - Endometriosis.

When our awareness project is complete, I will post it here for all to see.  I will share it with my friends via social media and email.  You know why?  Because I'm not afraid to stand up and say "Yes, I have Endo."

Awareness is one way of helping ourselves.  The more people hear about and talk about Endometriosis, the more chance there is that people power will make change to improve the healthcare that we receive, and one day bring about a CURE.

So, How Are You Doing?

That question that every chronically ill person grows to dread...

"So, how are you today?" or "Are you feeling better today?"

On the surface, it sounds like a lovely, caring thing to say, and in most cases it is.  When my immediate family and close friends ask me these questions, I know that they genuinely care about how I am and want to know how I'm getting on.

But as time goes on, you do grow tired of being asked if you're any better by some people.  Those people that just don't seem to understand that your illness isn't going away.  Those people who wonder if you're making it all up because despite having multiple surgeries and seemingly trying a new medication every week, you STILL aren't better.

It seems callous to say this, but it feels like when they ask, they just the instant gratification of knowing they asked you, and don't actually want any details of how you're getting on with your health.

I have developed a response for when those people ask how I am.  I just say "still here" and leave it at that.  Often they immediately change the subject and talk about something else (usually themselves), but surprisingly sometimes they have a different response.  Once in a while, they actually continue on a conversation path about my health and ask more questions.

Not sure if this is the reason, but I like to think that it's because they're so surprised by my response, that they can't help but want to know more...

Honouring the Nurses

Today is International Nurses Day.  What better way to celebrate what Nurses do, than to honour some of the ones I had the pleasure of getting to know during my multiple hospital stays.  I've been writing this post on and off for a while, so here it is today in honour of all Nurses.

I have met many nurses during my hospital stays, too many to count.  Some just come and go, but many others have stayed lodged in my memory because of the little things they did and said that made all the difference to my stays.  

So, below I would like to honour those I remember, because I feel it's important to acknowledge them.  Please note that names have been changed in some cases to protect their privacy.

Anneke - for being the quiet nurse that was softly spoken and gentle with me, particularly on one day when I was emotionally fragile.

Belinda - for being my hospital mother during my first stay and for accompanying me to Pre Op for my first surgery.  Having you there helped me to be a little less freaked out.

Bindu - for taking such good care of me while I waited to get admitted to the Ward.  Also for being there on the day when I had that procedure done.  I was really glad it was you.

Bridie - for always having a smile on your face and chatting about life which made things a bit more normal.  Oh, and for telling me that when you were a nursing student, your friend made you try all the gross things that you now give to patients.  That made me feel a lot better while having to drink that powdered stuff!  Also for introducing me to those Remove patches that take the sticky adhesive off your skin - I loved them!

Carol - for doing all the little things on the Ward and for finding me flannels when they all seemed to have disappeared from the linen cupboard.  And that day you made my bed when I was out walking the hallway with my parents and I got back to find Benjamin, my Endo bear, pride of place on top of my pillows - it was a small thing, but it made my day!

Charlotte - my 3am angel.  It was always nicer to be woken up in the middle of the night when you were on duty.  We quite often had a whispered conversation while you did my obs.

Chelsea - that first night I arrived on the Ward, I was pretty scared.  Thanks for just being there and making sure I was ok.

Glenys - for always being there in Pre Op to do my checklist when I came in through ORDA.  And for the cheeky wink we shared when they wanted to do yet another pregnancy test on me, even though you and I both knew what the answer would be :-)

Grace - having someone younger to talk to about normal things like TV and movies was lovely.  The number of things we could talk about in the time it took to do my obs was pretty impressive!  The best days were when you and Toni, my "dream team", were both on afternoon shift.  That night when I was the only one left in my room and you came in and we just had fun and laughed and chatted about random stuff was probably the best night I had!  Also, for all the heat packs you made me - bliss!

Gracy - for defending me when someone complained about all of the food I had in the fridge.  No one could argue when you told them I had been Nil by Mouth for 48 hours - no wonder my yoghurt stash was so big!

Jo - for always being smiley and chatting about your student ward placements.  And for all of the heat packs you made me, by the time I was discharged you were an expert and they were always just the right amount of heat for me!

Kanta - for taking care of me with the other nurses the night I developed tachycardia.  I was so scared, but having you there and trusting that you would take care of me definitely helped.

Mini - for trying me on all those different anti nausea meds until we found one that helped a bit.  You were so lovely and caring. 

Namaste - for accompanying me to Pre Op for the procedure I had done under GA.  Again, having a familiar face there really helped me to stay calm.

Pamela - for writing in my notes (that I got from Clinical Records later) that I was watching a movie with my boyfriend that weekend in hospital.  That was actually my brother, although we all got a giggle out of it!

Paula - for being the cool nurse who wore skinny jeans to work!  Also for picking me up in the hallway when I collapsed against the Reception desk and almost passed out - much appreciated.

 Rachael - What can I say - you were amazing!  Really caring and fun to chat to about all sorts of things.  You also made those blood clotting injections hurt less, which was fab from my point of view.

Saras - I know you were only filling in for someone who was off work, but you are such a beautiful person and always helped me out with whatever I needed, even if I wasn't quite sure yet what it was.  The lovely conversations Mum and I had with you were nice and reminded me there was still a world out there, even if I was currently stuck in a hospital bed.

Sepi - for keeping everywhere so clean and tidy.  Thank you so much because it's the things that keep the hospital running that tend to go unnoticed, and you do a great job.

Siobhan - for making me comfy at 3am after my first surgery by rolling me onto my side and barricading me in with pillows.  Those 4 hours were the best sleep I had all night thanks to you.  Also for the conversation we had about books, as Mum was reading me The Book Thief at the time.

Toni - How do I describe you Toni? There are no words to tell you how awesome you are, but here are a couple of highlights.  Your cheeky grin and ready smile when you put your head around my cubicle curtain.  For being brave enough to convince my rubbish veins to accept an IV line.  That night when we were both encouraging my veins because of that huge MRI Contrast line you had to put in.  Talking about life, the outside world and both of our families.  That time when I was standing in the middle of the Ward about to pass out from the pain and you came in and knew what I needed without me having to say anything, then guiding me back to bed.  All the cold flannels and ice cubes in my water jug, and the Peppermint Tea.  Who could ever forget my family all trying to cut their fingers off in the same week!  We had such a laugh over that!!  And the hug you gave me on the day I finally left for good - thank you :-)

Vivi - That night when you came in and saw the terror on my face when I developed Tachycardia.  Thank you for being calm and reassuring me that everything would be ok.

Zeena - for leaving me to sleep and not waking me to have my obs done that night when I was having a good deep sleep for a change.  Sleeping through til 5am was a real achievement for me, and I have you to thank for it.

To the 2 Level 9 Theatre nurses who took such good care of me.  I have forgotten your names, but I will never forget your faces.

To anyone whose name I forgot, and I'm sure there are a few.  Just thank you for all that you do.

Oh, and for the invitation to the Anzac Day Night Shift Nurses Party.  I had so much fun chatting with you all, and I hope you enjoyed the Anzac Biscuits :-)

Hopeful and Cruel

Here I am - back to square one again.

Endometriosis is a bit like that.  You start on a new treatment or medication, and you're filled with hope that it will do what the Doctors tell you that it will do.

The first week or two is usually a bit rough as your body adjusts to it, and your hormone levels can be a bit upside down.

When things start to even out after a couple of weeks and you begin to see a positive change, you feel so excited and hopeful that this one just might be it.  That this might just be the thing that eases the pain and symptoms and helps you get your life back a little.

And then it starts.  The downhill slide.

The pain and symptoms start to return, and you feel so tired and ill.  You begin to question why nothing works.  Why it either doesn't work at all, or even worse it gives you some relief and just when you begin to hope, it all comes crashing down again.

At the end of the day, it all comes as part and parcel of having a chronic illness unfortunately.  Some things work and others don't, and you just have to ride the wave until the sea calms and it all begins to even out again.

Retail Therapy

When you have a long term chronic illness, sometimes it feels like there is no light at the end of the tunnel.  I have days where I feel like I'm imprisoned inside this broken body and there's nothing I can do about it.

Today, I was in a considerable amount of pain.  I haven't yet decided whether I was being brave or stupid, but I packed my handbag with snacks and pain killers and went off for a little retail therapy.

I don't treat myself very often, but occasionally I realise just how much I've put up with over the last 15 months.  So today I decided it was a treat day.

My energy levels (or lack thereof) mean that I can only really manage going to one shop, but one shop was all I needed.

Smoove Reworked Vintage is an absolute gem of a store and if you haven't been, you really should.  They were in little High Street but are moving to Ponsonby over the next couple of weeks.