A New Home

Just to let all of my lovely blog readers know that I have changed to a WordPress platform, and this blog will no longer be updated.  All of my content has been shifted, so it's still me writing, just in a new place with a new look!  Here's the link to my new blog (still a work in progress) if you would like to come visit me :-)

www.colouringinmylifeblog.wordpress.com

See you there!
Caroline xx

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.

Is Trouble Brewing?

Now that I've been on the Pill for about 3 months, I have reached the point where it's time to take the placebo (sugar) tablets in the pack for 7 days.  Or, if you're me, throw the sugar pill for that day into the rubbish bin every night, because what's the point of taking them anyway?

Today marks the third day since I came off the active pills, and to be honest, I haven't had a real crash with mountains of pain yet, which is what I was expecting.  I am super nauseous and tired though, and have a feeling of heaviness in my pelvis.

Although the withdrawal bleed I'm supposed to be having hasn't arrived yet, there is definitely a feeling that 'trouble is brewing' in my uterus!  There's nothing I can do about it except to wait and watch and see how things develop.

It's always hard to deal with when you know that things may get worse for some reason.  My motto is 'Prepare for the worst, and hope for the best' in these situations.

I'm safe in the knowledge that if things do turn really bad soon, I've handled it before and I will get through it again! 

This Hagrid quote from the Harry Potter movies helps as well...

So Many Ideas...

Blogging is a strange thing to me.  In the first place, I never thought I would start a Blog for lots of reasons, including the fact that no one would probably read it, and also that I'm quite a private person, so didn't think I would have it in me to spill my thoughts onto the internet!  But I took the plunge and started, and I'm still coming back, so part of me must enjoy it...

The truth is, hardly any people that I know in real life know that this blog exists, basically because I haven't really made a point of talking about it.  I think part of it is shyness, and the other part is a fear of being judged by others about the fact that I write about my health issues and life in general and post it on the internet.  I'm pretty sure that most people would think that was one of the strangest thing you could do when you have a chronic illness, to write about it for the world to see.  I know, even reading those last couple of sentences back makes me think 'What the?  Why on earth am I writing about my Endo journey online so that a whole lot of strangers can read it?'

Strangely enough though, writing about what's going on in my Endo life on my blog is soothing.  It's quite cleansing to write about my frustrations, health concerns and issues that I think are important, and I guess a Blog is just somewhere to try and put that jumble of thoughts together.  Quite often, I feel the need to let off some steam when I have a lot of thoughts running around in my brain, and blogging is just one of the ways I manage my stress levels when everything gets to be too much.

Although, in saying that, I'm not a very good blogger really!  If you keep on scrolling down my Blog pages to have a peek at older posts, you will notice that there are quite a few gaps in the dates.  In some places, it looks like I haven't written anything for months!  This is not the case though...

My Blogger account is full of draft posts - yes really!  When ideas strike, I open up the web page or app and jot down a title, or a few sentences that I think would make a good post.  But, as with many things when you live a life with chronic illness, that's often as far as it goes, despite my best intentions.  Those ideas don't always make it to the blog for many reasons, including lack of energy or focus to write, loss of  inspiration or motivation to write on that topic, or just plain old writer's block.  Basically, sometimes I feel the need to blog it out, and other times I can go for many weeks quite happily without feeling the urge or inspiration to write at all.

I could commit to writing on a certain day of the week, or writing so many times a month, but I'm just not going to do that.  My Course of study starts tomorrow, and that's something I will definitely use deadlines and planning for, more so than other things like blogging where it is a choice whether or not I choose to do it that day.

 I don't need the added pressure and stress that comes with yet another deadline to meet, or the disappointment of not doing what I promised myself I would, because that just doesn't help my emotional state of mind.  There are many things I do regularly and commit to, and I just don't want blogging to start to feel like a chore - I want to enjoy it, and be inspired to write when the feeling strikes.

So, I'll write when I write, and if you don't hear from me for a while, don't worry!  I'm still around, probably just dealing with a downturn in the health department or a short term, acute case of writer's block :-)

Bladder Nightmares!

Tonight I really thought I was going into urinary retention, also known as not being able to empty my bladder.

I've got ongoing bladder issues at the moment.  It's a long story, but I've had issues on and off all of last year, and a bit the year before as well.  It started out as just a couple of days of frequency and urgency issues every couple of weeks, which I put down to Endo and having had 3 surgeries in 2014.  Everything in your pelvic cavity is so close together, that it didn't surprise me that I may have developed a bit of an iffy bladder as an unfortunate side effect of all that surgery.

In October 2015, things began to noticeably worsen and by December I was experiencing bladder problems for 2 to 3 days out of every week.  My Gynae was concerned that the ongoing fatigue and bladder issues I was experiencing may be signs of pre-diabetes when I went back to see her, so she set me up testing my blood glucose levels for 3 months until my next appointment.

Enter the New Year and the beginning of 2016, and my bladder has continued to deteriorate.  Now, every single day since January 1st has involved full time bladder problems and pain, and not to go into too much detail, but I'm using the bathroom 15 to 20 times a day now!  Let's just say that I'm thinking about redecorating my bathroom, since I seem to visit it so often these days!

Today had been yet another very busy day for my bladder, but I noticed a change tonight, whereby when I tried to empty my bladder (which felt full), not much at all was coming out.  This might not seem very scary to the average person, but to me it started to ring alarm bells considering my 'normal' volumes at the moment are much higher than that. 

Didn't think too much of it until it had been happening for a few hours, and I was lying in bed when it hit me.  That this was exactly what happened when I went into urinary retention for the first time back in early 2014.  That was a seriously scary experience, even more so than Endo pain, because having absolutely no control over such a basic and vital bodily function does really make you panic.

So for the last 30 minutes, I've been pacing the hallway in the dark with my earbuds in, trying not to freak out and hoping that gravity would help sort my bladder out!

Luckily just now, my bladder has decided to behave and normal(ish) service has resumed for now.  Phew!

Leaving my bladder in such an over-active state does concern me, especially because my next Gynae appointment isn't for another 5 weeks.  I've tried to bring it forward, but it's just not possible this time around (the joys of being in the public health system).

I would hate to think that I may be developing permanent, irreversible damage to my bladder while I wait for my appointment, but I'm crossing my fingers and toes that this isn't the case!

Bladder, just hold on and don't play any more tricks on me please!  Don't think my nerves can stand it!

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.

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...

My Wish

A friend brought her 11 week old baby to visit us yesterday afternoon. 

It was lovely to see them, and to meet her beautiful son, but it was also hard for me in some ways. 

To sit there watching her playing with her son with so much love in her eyes. To see her holding him close, and able to talk of nothing else except all the new experiences they've had together in the first 11 weeks of his life.  To see his striking resemblance to her, and think that she has created and carried this baby within her own body.

Don't get me wrong, I'm not jealous of her or resentful that she has a child of her own.  In fact it's the exact opposite - I'm filed with joy for her that she has her own little person to bring up. 

It's just the thought that I might not be able to have a child of my own that scares me, and seeing her child really brought it home to me. 

How much I want to be pregnant one day and carry a child of my own. 

How I want to have that heavy but gorgeous round bump that houses my own little one, rather than just a fat fake Endo belly. 

How I want to experience all the pain that child birth brings, as long as at the end of it all when I'm exhausted and have nothing left to give, I can hold that tiny, precious, unique gift from God in my arms. 

How I want to spend hours staring into their deep blue eyes and holding their tiny fingers to try and drink in all their beauty.

Most women want to have a child of their own one day, and it's one of the most important and responsible jobs there is.  It's perfectly natural that I want to have a child of my own as well.

Having Endometriosis and Adenomyosis could bring complications with conceiving and carrying a pregnancy to full term or worse, infertility issues and even though I try not to think about it most days, it creeps in and weighs on my mind.

Every time I take a new medication that disrupts my natural hormone balance I worry about what I'm putting into my body and what potential long term effects it could have on my fertility. 

But at the end of the day, no matter how much my illness and treatments may concern me, I've decided I have to live in the moment.  It's not that I don't care about my fertility, because I definitely do, but if you focus on it all the time it's just going to eat you up inside. 

So I'm just taking everything one day at a time and trying to breathe. Trying to manage my pain and symptoms as best I can, always keeping in the back of my mind my big wish to be a Mum one day.

I've Done it Again!

Just to let you know that I'm still here.  My mind has just been on other things lately, and I haven't felt the need to blog as much.

But I promise that I have a whole lot of half written posts coming to this blog soon, so keep an eye out and soon my words will fill this page again.

Final Countdown

Off to see Dr V in the morning.  The day is almost finally here. 

I shouldn't be nervous about this.  I should feel calm, prepared and all together.  But I don't.

Why, when I'm going to a medical appointment does it feel like I'm going to be standing in front of a firing squad instead?  Why should I feel uncomfortable when a doctor is supposed to be here to help me?

I'm just feeling a whole mixture of emotions: scared, unsure, hopeful, realistic, nervous, worried...

Just really hope it goes well tomorrow and I come out feeling secure in the knowledge that there is a plan in place that is going to help get me back on my feet, and soon...

June Thoughts

Tonight I'm exhausted having spent a few hours with my Granny to help with her stroke rehab.  It's hard work, but I push through the exhaustion and keep going because I can see the results in her cognitive ability, speech and just the smiles on her face.  That and the fact that apart from Mum and I, there isn't really anyone else contributing to try and help her regain what she has lost.

Anyway, that's not why I'm here tonight...

I'm here because I've been meditating on the stage I'm at in my life right now, Endo wise and just in general really.  Doesn't help that I'm going to be turning another year older soon either, as that time of year always brings on thinking about and reflecting on the previous year.

To think that the past year has brought no real achievements for me in my personal or professional life at all scares me.  That I haven't been able to work, volunteer or study because my health has been so bad.  The only big thing that I've really achieved in the past year is to be in hospital less often, only around 3 times in the past 12 months, not counting the numerous GP and Outpatient appointments!

Just the realisation that days are continuing to pass me by and I'm not able to make any really big life changes because of my body is hard to accept.

But I guess at the end of the day, this is what God wants me to do right now.  To focus on myself and to rejuvenate and heal my broken body and mind.

A good and beautiful friend of mine, who I actually first met in hospital last year, has sent me some messages lately that have meant a lot to me and sometimes brought me to tears.  She is helping me, through her encouraging and positive messages, to come to a place of acceptance with where I am at in life right now.

S, you may have no idea how much your messages are helping me right now, but I just want to thank you from the bottom of my heart.  People might say that they're only words, but it's how you interpret them that counts   Thank you so very much for supporting me, it means so much to me.