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...

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.

Inside the mind of a GP

I was hoping for a little support from my GP when I went to see her this morning.  Since this has all been going on for over a year now and I am really starting to struggle, especially with my worsening fatigue and racing heart.  You would think that a little bit of sympathy and support wouldn't be that hard to get - right?

Wrong!

Talking about my fatigue that has so far lasted 8 months (very briefly) - "You're just tired because your body is fighting some kind of unknown allergy.  "Here, take this antihistamine for at least 4 weeks (even though she's put me on it before and it kept me up at night with terrible stomach cramps and diarrhea until I stopped taking it) and then we'll see what happens.  Oh, and by the way, it will help with your nausea as well!" 

Talking about my mysterious bloated stomach - "Oh, you're probably constipated."  No I'm not, I know what that feels like from when all the pain meds in hospital made me constipated and I would definitely know if I was!

Talking about my ongoing pelvic pain - "Is it worse than before, or just the same as before?"  Yes, it's the same as before, but it was pretty bad before, so shouldn't you be concerned that it isn't getting any better?  "Oh, I'll just make a note of that."  Great, how is that going to help me???

All the "helpful advice" I got from her today was to be told that I was dwelling on my symptoms too much and that I should learn to distract myself and not focus on how I was feeling!!! 

Mum (who comes to all of my medical appointments as my support person and second brain since my memory is so rubbish) stepped in at that point and told GP that I was really positive and pretty much permanently used the art of distracting myself to just get through the day.  I also added that I tend to go and write down what symptoms I am experiencing (and at what level), then just go and do something else.  Basically, my attitude is if I'm dealing with less symptoms that day, then that's great and I will enjoy it while it lasts.  If it's a bad day, then I just do what my body can handle and settle for that.

There is so much frustration inside me right now, as I feel like I am being treated like a complete idiot and every time I go to see my GP they just say "Here's another tablet - try this" with no real explanation about what might be wrong.  Or alternatively just say there's nothing they can do to help (like my last ex GP), or tell me to wait until my next Specialist appointment, which could be at least  3 -  6 months away depending on how long I've had to wait.

My GP also seems to have a low opinion of me when it comes to trying new tablets.  She says to me to "make sure I give this one a good go" like I don't want to try anything new.  This is not the case at all - I will try anything!!!  Just because I had to stop the last 2 tablets that she put me on due to side effects including stomach cramps, diarrhea, extreme tiredness and blurred vision does not mean I am not open to trying new things!  It just means that those tablets obviously don't agree with me.  Then she asks "How do you know that those symptoms were caused by the tablets I put you on?"  Um, because I didn't have these symptoms until I started the new tablet, and after I stopped it they went away - isn't that logical enough for you?

GPs seem to have very little understanding of Endometriosis and how to take care of their patients who have Gynae issues along with other mysterious symptoms in my case.  Also, they never believe you when you suggest that your other symptoms including worsening fatigue and my fabulously bloated stomach (otherwise known as Endo Belly by some of my bloggy friends) could be related to Endo.  They just say "No, those aren't classified as Endometriosis symptoms."  I get better advice from my fellow Endo Bloggers and other young women who are going through similar things to me than I do from any Medical Doctors - isn't that saying something???

OK, enough GP ranting now.  Time for a song to remind me that I can carry on and that one day everything will be all right again.

                              

Is it all in the Stars?

I'm not usually a girl that reads her horoscope.  Instead I just live my life the best way I can.

However, during my multiple hospital stays this year, lovely visitors brought up a few magazines for me to help pass the time.  It became quite entertaining to read my horoscope and laugh about what I was supposed to be experiencing!

Anyway, a few days ago I came across my November / December horoscope in the Australian Women's Weekly and I was so surprised when I read it that I took a photo to post here.

Maybe it is all in the stars after all. Have a read for yourself...

He's My Brother

Last night, I was in severe pain. 

Yes, I had already taken pain relief, but don't be fooled by those fake smiling people on the pain killer ads.  Sometimes they just don't work like they should.

I had my period and the achy pain that I experience every single day had escalated to a really severe level, like it has for the last 3 months.  Whether this pain is Endometriosis related or not, I don't know, but it's definitely some kind of Gynae pain.  I'll have to ask my Gynaecologist when I go to see her on Friday.  It's been a very long 3 months to wait, I can tell you.

Anyway, there I was, slumped in a chair at the dining table, really struggling to handle the pain.

Then my brother, seeing how much pain I was in, asked me if I wanted to go in the car with him 10 minutes down the road to drop something off.

Now, normally when I'm in pain, I would have said no and gone to curl up in a corner with a gel heat pack.  However, I'm trying not to let the pain rule me at the moment, which is hard but a challenge I'm prepared to take head on when I'm feeling brave.

So I said yes.

We walked slowly out to the car and off we went.

Here's something you should know about my brother.  He knows about my Gynae and other health issues, but we don't talk about it unless I feel like talking - Mum keeps him up to date when there is news I'm too upset to tell him myself.  I have nicknamed him my 'fun officer' because he looks after me by watching TV and movies with me and distracting me from whatever I am dealing with.

So, there we were in the car, me trying to breathe the pain through with gritted teeth.

He got out his phone, plugged it in and said to me "I've got a new song that I want to play for you.  When I first heard it, I immediately thought of you."

Then this song began to play...



It was a beautiful moment between us as we sat there listening to Nobody Knows by P!nk.

I was a bit emotional as the song played through and I listened to the lyrics.  I like some of P!nk's music and couldn't believe I hadn't heard this song before now, but in some ways I was glad.  It felt really special that my brother had heard this song and thought about me while he was listening.

The lyrics really hit home for me, as being a girl with Endometriosis and ongoing pain, it often feels like nobody knows or understands what I'm going through.  I just have to remember that I'm not alone and have my family around me to support me.

Thank you to my brother for introducing me to a beautiful song - you're the best!

                         

Diagnosed

I guess my Endometriosis diagnosis came as a relief to me, more than anything else.

No more wondering if what I had been going through was normal or not, because I finally knew that it wasn't.

As my health went further downhill towards the end of 2013, I was taking time off work nearly every month or cancelling my plans so I could be at home.  It was much easier to get through my perwor each month when I could just work through it and not have to be out putting a brave face on even though I was in severe pain and felt rotten.

Things got so bad that I ended up going to see yet another doctor about my periods in December 2013.  I was referred to a specialist just before Christmas 2013 by him, but he told me that I almost certainly had severe endometriosis.

That was the first time any doctor had ever mentioned Endometriosis to me and told me that it was likely that I had it in the same sentence.

I did know a bit about Endometriosis already, as my Mum had it and we had discussed the possibility of me having Gynae issues on several occasions.  Also, she was keeping an eye on me and what I was going through as she was fully aware that it was possible for me to have Endometriosis because of her history.

It was a relief to hear that something was probably wrong as when I had been to see multiple GPs and a couple of Specialist Gynaecologists over the years, they didn't really know if there was something wrong or not and just said to try different pain relief.

That was the beginning of my Endo diagnosis journey.  I will continue to write more about my Endometriosis diagnosis and the events since then in future posts.