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.

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...

A Letter to My Gynaecologist

Dear Dr V,

You'll probably never read this, and I don't think I'd ever get up the courage to send it to you anyway!  But it's 2 years to the day that I first met you,  and I've been reflecting on my Endo journey, so I wanted to write a little something to you, because you've been such an important part of my life over the past 2 years.

I guess you could call it an ode or tribute to you, but this is my blog and I think both those words sound ridiculous, so I think I'll just call it a letter of thanks and leave it at that!

The first day I met you was a Friday in January 2014, the day after my diagnostic laparoscopy.  The Registrar who was looking after me saw me gingerly walking down the hallway in my hospital gown, and brought me over to you to introduce us, because I was being referred to your list for my upcoming surgery to remove the Endo lesions seen at surgery the previous day.  

There I was in my hospital gown, and then you turned around from the group of doctors you were with and there was this lovely friendly but slightly serious face looking back at me.  You said "Hello, hello, nice to meet you" and then you were off down the hallway to see your next patient.  I remember that day you were wearing a navy blue skirt suit, which I liked to refer to as your 'power suit', and honestly I was a bit intimidated by you!  But that was 2 years ago, and basically the whole thought of having a Gynaecological problem was pretty scary!

That day I was pretty freaked out with lots of thoughts going round in my mind, including how much pain I was in, the fact that I had Endo and needed more surgery.  It was all a big shock to my system, and which Gynaecologist I would have looking after me hadn't really crossed my mind yet! 

As 2014 wore on and the admissions to and nights in hospital piled up, I felt like I got to know you a little more.  You would always come to see me each day when you could, and were happy to take a moment to answer any questions I had.  

Even though you probably always had other places you needed to be, you always made time to come to my cubicle in the mornings and explain what tests were being done or what was happening that day.  Sometimes you would even do my blood tests or put an IV line in while you were there, and you were the best at doing that!! 

Some days you would even sneak into my cubicle in the afternoon before you left for the day.  You'd pop your head around my curtain, drop your bag and perch on the windowsill in the late afternoon sunshine, to have a chat with my parents and I and update us on any results or plans for the following day. 

If I'd had a bad night and was in a lot of pain, seeing your shoes appear underneath my cubicle curtain or hearing your voice float down the Ward hallway in the mornings was all I needed to know that everything was going to be all right because you were here now.  

One time I was in hospital yet again, one of the House Officers caught me in the patient kitchen and thought I was visiting someone. She was dismayed to hear I was back on the Ward again, but shared something about you with me that definitely lifted my spirits! She said that you got all the tricky cases, and that if anyone could get me sorted out, it was you. Those words gave me even more confidence and faith in you, and helped me carry on. 

When I graduated from being an Inpatient to being an Outpatient and seeing you in Clinic as opposed to on the Ward, you were still very supportive of me, even if you were running really late some days!  But I like to think that you running late is a sign that you take excellent care of everyone else just like you do of me. 

When I try to thank you for your care sometimes, you tell me that you're just doing your job, but to me it's so much more than that. Even though I'm sure you have lots of other patients to care for while you're looking after me, you make me feel like I'm really important when I come to see you, which I'm sure is hard when you're so flat out busy all the time. 

Sure, we've had our disagreements over the past 2 years, and you've had your bossy moments when you've told me to stop Googling my symptoms (I have, by the way!), or told me I shouldn't worry so much or take things so seriously.  But these moments pass, and after 2 years we're still together, so that must mean we make a good team, right? 

And then there have been the emotional moments we've shared... 

The laughter and smiles when sharing a joke or funny story at the end of an appointment.  

The tears have flowed as well since I've known you, because sometimes the pain, symptoms or just general uncertainty on my part get too much to bear.  I remember one time I started to cry in your office and just couldn't stop, so you got up out of your chair, took me in your arms and just held me tightly, stroked my hair and told me it was ok and helped me to calm down. I don't think I could have cried that day with any other Doctor present, but there's something about you that just makes me feel safe. 

Sometimes I think my complex issues have probably given you a few grey hairs, and I hope that having me as a patient hasn't caused you too much stress!  Hopefully my kind nature and winning personality make up for that! 

I can't begin to tell you how much I appreciate everything you've done for me in these past 2 years. Maybe I'm still not in the best of health yet, but the fact that you've stuck by me and haven't given up on me means so much.  Each time I come to see you, you've been thinking about me and you always have some new idea, test or treatment for me to try, and that's all I can hope for and more.  

Thank you Dr V, from the bottom of my heart.  I'm so glad I ended up with you!

P.S.  I saw this quote online, and somehow it made me think of you, because you have definitely helped make me feel alive and positive, so that I can continue to carry on during my Endo journey...

N.B.  Names have been changed to protect the identity of those mentioned in this post.

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 :-)