Life: What an adventure!

Let’s face it, life is not always fun and games.  Too often we get overly focused on what is negative in our world.  For me, it has been the struggle to fall pregnant, financial limitations that meant I could not afford IVF and the usual work issues.

Over the last three months I’ve learnt to alter this mindset.  I was fortunate to participate in the Positive Mind Body program for fertility. It is a group program that supports women and their partners through the emotional ups and downs of infertility.  It wasn’t just the meditation, breathing exercises and mindfulness strategies that helped, but the opportunity to talk with other intelligent, successful women in the same situation.  They are all very successful in their chosen field of work and all want to have children.  It isn’t that we have the exact same infertility diagnoses or experiences, but that we have issues full stop.  For once, nobody told me it would be alright, that I should just calm down or go on a holiday.

The last time I contributed to my blog was a particularly low point in my life.  The Doctor told me to book an MRI because of a suspected complication.  The MRI returned clear and I fell apart in the Doctor’s office.  As odd as my mindset was, I was prepared to have a new diagnosis and expected months of medical intervention to correct it.  The news simply threw my forward planning into disarray.  So we decided to plan for an IVF cycle.  That was over a month ago.

“When life gives you a thousand reasons to cry, show life that you have a thousand reasons to smile.” (Unknown Author, www.boardofwisdom.com)

But there was one awesome complication… You see, I had recently been awarded a scholarship to attend a world conference in education.  So I am off to Scotland next week on the 20th July!  Yes, a person with epilepsy on an international journey, all alone!  What an adventure.

I told my Doctor about my upcoming trip overseas and we decided to do an egg collection and freeze.  In fact, she explained that for me, freezing and transferring later would be more effective and would eliminate the high possibility of over stimulation. It also meant that I could travel without worrying about an early pregnancy and the possibility of miscarriage whilst I am away.

I leave next week and know that I have seven little possibilities in the freezer.  There are so many things I am thankful and excited for:

  • I am excited that despite my epilepsy I can travel alone.
  • I am thankful for the scholarship and am looking forward to meeting new people.
  • I am excited to pick up my very own hand-made set of bagpipes.
  • I can’t wait to use ph00-pmy new camera and take awesome shots of the Scottish Highlands, and
  • I’m looking forward to the Edinburgh Fringe Festival and the Military Tattoo.

On the 6th August I can return to Australia, apply what I learnt to my teaching, learn a new instrument, join a pipe band and to continue my journey to motherhood.

And although I know that my IVF journey is in it’s infancy, and that there will certainly be more disappointments before it is over, I can breath deeply and think about the thousand reasons I have to smile.

MJ

 

 

I’m Not Fine

7724418I recently read a blog post by Ragdollmummas titled Fine in Our Own Way that has resonated with my current existence. I’ve been doing exactly what she wrote about: I’ve been fine. To quote the article, ‘we may be curled up in the fetal position sobbing on the inside, but on the outside there is no other choice but to be fine and all good and to keep on keeping on.’

She is spot-on. We cannot expect that the people around us are able to understand the struggles we deal with; nor should be expect them to. Once again I have had to deal with an unsuccessful fertility attempt. It seemed that little bit more frustrating given the result came during the Easter Long weekend when we were supposed to be praising the risen Lord. In that moment, I can truthfully say that the hypocrisy of the celebration was not lost on me.

I think it was Tuesday evening when my man and I watched an episode from the SBS series, Secrets of the Brain. In one experiment, an audience was required to watch a film of animals in distress. One half of the audience was allowed to cry and express emotions whilst the other half of the audience was requested to ‘be fine’, hold it together and remain neutral. Once the film was over, all participants were required to hold a hand exerciser for as long as they could. Interestingly, the half of the audience who were allowed to express their emotions had the strength to hold the exerciser closed for the longest. Those who spent the film ‘being fine’ were unable to hold the hand-exerciser closed for any significant length of time. The conclusion was that the energy used by the brain to maintain neutrality was so draining that the body physically could not muster enough strength to hold a hand exerciser closed.

And that is the difficulty of having epilepsy and fertility issues. My family tends to understand the challenges of epilepsy. Even though they don’t have seizures, they struggle through the experience and memory of watching a seizure and caring for me afterwards. As a result, I know they feel as helpless as I often feel. Unfortunately, this empathy and understanding does not translate to infertility. My parents are already grandparents. My partner is supportive, but I am sure doesn’t feel the loss and failure that I do. I cried into his shoulder only this week and apologized because I don’t fail well. He of course told me that I am not a failure and hugged me that little bit more tightly. Whilst I am glad I can cry into his shoulder and enjoy the comfort of his arms around me, I can’t always see past the negative. Instead, I try to be fine on the outside.   And that is exhausting.

I’m glad I have PhD research to do because I am not sure how I would have survived this school holiday without the distraction. It seems that little bit worse the third time around. What ever happened to “third time lucky”?

In my not always believable attempt to be fine, I’ve immersed myself in books and articles as I complete research for my PhD; How to write a survey, defining the characteristics of a semi-structured interview, and delving into gender differences on the brain, adolescent education, music and leadership. Between doing this, I have cried, enjoyed nana naps, stayed home, cleaned and I suspect, had an anxiety attack. I’ve even developed strategies for talking with my mother. When I talk to her on the phone, I try really hard not to cry with volume; tears are fine so long as no noise registers. Keeping your voice at a neutral pitch is also helpful; too high and you sound anxious, too low and you sound like you are trying too hard. The trick is to breath normally. When your breath hitches, you can be guaranteed that anything you say next will come out as a sob.

They say that animals are perceptive. I am sure that those of you with pets would agree. My puppy Aria is supportive in just the way I need; she will curl up on my lap, sit quietly and become just that little bit cuddlier. There is no judgment or attempt to tell me that everything will be ok. I suspect this is what my human family tries to do, but without the same success. I also like that Aria cannot tell anyone I’m not fine, and her unconditional love means that she would never judge me.

My blog post this time is not to present a conclusion or solution. I just want to put it out there that sometimes we are not ok, and that is fine. At least for me, this blog is a way of expressing what I am feeling and to let other people know that they are not the only ones.

I am hoping this post will help dig me out of the ditch I currently find myself in.

Read the post by Ragdollmummas here:

https://ragdollmummas.wordpress.com/2016/03/25/fine-in-our-own-way/

 

 

Dear God, I have epilepsy. Isn’t that enough?

“Dear God, I have epilepsy. Isn’t that enough?”

That was my gripe yesterday.   I even tried to express how I felt in a blog post, but got tears instead of words.   There is so much to say; so much I planned to say and have not been able to until now. So here goes…

They say that the universe only requests of you what you can handle. If that is the case, then apparently I am super woman!

Epilepsy aside, the last forty-eight hours have been tough. My partner and I recently underwent an IUI in order to conceive our first (and likely only) child. You see, in addition to epilepsy I have endometriosis and PCOS.

Despite only a 10% chance of success, I remained positive and hoped for the best. The procedure was booked suddenly with little warning for both Mr Man and myself. It was exciting and completely terrifying at the same time. In the process, I learnt that the progesterone I injected into my belly made me suffer symptoms of pregnancy including morning, or more appropriately ‘whenever’ sickness. I joked with Mr Man, that if this is pregnancy, I will need vomit bags in my car!

I suffered with a smile for two weeks knowing that I had to wait until the drugs were out of my system before testing. Well, this week has gone so slow! I kept thinking it was like the night before Christmas when I was a child. Do you remember how long it seemed before you were allowed to get up and see what Santa had brought? I was reminded this week.

Lets just say that I didn’t need to do a pregnancy test; that Santa left no gift. I was devastated. I’ve never before felt this incredible lack of control or sense of failure. It was a very overwhelming feeling and something new for me.

We are all allowed them. You know those “woe is me” moments? When everything that happens to you seems cruelly unfair. You question humanity, God, and all that is good in your life. And finally, you turn on the good luck of others in a jealous and unjustified rant.

My first thought is always of those people who fall pregnant accidentally.

“Oops! What are we going to do now?”

Like my brother, who despite being a very nasty human being, is able to father a child, and restrict my own Mother (the child’s Nan) from visiting.

And then there is that really horrible jealousy and anger you feel towards generally lovely people who are having babies to add to their already beautiful family or those who are having their first child because they decided that they’d try. Worse even was the anger I experienced when a work colleague with epilepsy announced her pregnancy. It frustrated me that “she didn’t have to change drugs and not drive for four months,” and that “it was so easy for her!”

I admit it. For 24 hours I was inconsolable and felt that the universe was against me. After all, they say that the good finish last. When I apologized to Mr Man for my unusually negative attitude and dodgy body, he simply hugged me, told me that he loved me and said that it was ok to feel.

Perhaps it was the rant against humanity that helped, because the tears quickly dried up. I needed to regain some control and overcome that feeling of helplessness. My only option was to ring the specialist and book in to do this again. That is all I can do for now.

It is funny how I’m not feeling the loss quite so deeply today. I do feel numb and a little irritated with my body and the universe. I’m also frustrated that it is always me who has to remain strong. It seems the number one priority for epilepsy is to limit stress levels and avoid anything that can trigger a seizure. Sometimes it seems so unfair. Why can’t I just fall apart for a few days and not be the one in control?

Simple answer is twofold:

  1.  It is useless and a time waster.  We only live once.  And more to the point,
  2. “You can’t, so just suck it up Honey!”

Instead I raise my glass of sparkling water and say, “here’s to sucking it up and getting on with life!”

In the words of PINK:

 Pretty, pretty please, don’t you ever, ever feel, like you’re less than, less than perfect!

CHEERS!

MJ

Image from: http://sd.keepcalm-o-matic.co.uk/i/keep-calm-life-s-tough-get-over-it-suck-it-up.png

Purple Pledge for Epilepsy Awareness

March 26th is Purple Day for Epilepsy Awareness.

Firstly, I ordered my own purple leather Medic-Alert Bracelet to support the cause.

Secondly, I approached the right people and requested a staff morning tea to raise money for Epilepsy Queensland. I was told no. Despite there being two staff members dealing with epilepsy, and numerous students, I was told no.

Admittedly, I was furious at the time. However, I cannot expect others to understand the reality of living with epilepsy or expect them to support something they don’t understand.

In a moment of clarity, I decided to creatively bypass this decision. Instead of asking staff to donate to yet another cause, I have requested staff at least wear purple. If the male primary teaching staff can have striped shirt day or spotted tie day, then I certainly cannot get into trouble for requesting staff wear purple! Today I politely requested staff at my school to wear purple. I will provide the purple food! At this time of the term, a little purple wrapped Cadbury Chocolate never goes astray!

I also provided information about Epilepsy Queensland’s Purple Pledge. All you need to do is read the 10 Facts about Epilepsy and sign Epilepsy Queensland’s Purple Pledge. I’d like to quote fact number nine that really hits home. I have lost count of the number of times I either worried about professional respect, trust, and career advancement. Check out fact number nine:

  1. The social stigma, coupled with the emotional and physical trauma associated with uncontrolled epilepsy, means that many people living with epilepsy suffer in silence, often for years. People with epilepsy may avoid revealing that they have epilepsy to their employer, their friends, even their loved ones, for fear of rejection, loss of acceptance or opportunity, or of being shunned. These are very real fears, as stigma and ignorance still exist today.

If you are interested, the following web site is a great place to start:

http://www.epilepsyqueensland.com.au/site/content/purple-pledge

Share the love! Support epilepsy awareness month and wear purple on March 26th!

MJ

Love and Loss

When I started this blog I thought that ‘adventures with epilepsy: confessions of a life well lived’ was the most perfect title.   I hoped that I might discuss my excitement, fears and adventures with like-minded people rather than simply my partner and family. For reasons associated with my ‘life well lived’, I haven’t written lately because I didn’t think I had anything ‘epileptic’ to talk about.  My colleague suggested that this was in fact reason enough.  Hence the inspiration for this post. However in a contradicting twist, I am aware that this term at least, I have noticed my bad days more than I have ever done.  I’m sure the consequence of another seizure and its effect on my driver’s license is motivating the echo in my head reminding me to, “be well”.   As committed as I am to this new yoga inspired, stress free, hippy professional life, there have been a number of events that have tested my state of mind with epileptic consequences.  In this post, I simply want to share one of those events.

Event

If the news did not reach you internationally, then let me set the scene… Not very long ago we had a hurricane tear through Queensland, Australia.  Whilst it did not terribly affect Brisbane and the south east, we did get a significant amount of heavy rain and flooding.  On Thursday, just as the rain began setting in, I arrived at work with the hugest of huge headaches.  You know that frontal lobe headache that makes concentrating difficult without adding the glare of a computer screen, rehearsals and an evening excursion to the musical WICKED? Despite the pain-killers it just would not go away.  I ended up leaving school after my last class to go home, shut myself in a dark room, and sleep for an hour before having to supervise a senior music excursion. I survived.  WICKED was awesome!  And to top it off, the boys thoroughly enjoyed and engaged in the experience.  My job done! But wait, there’s more! I woke up Friday morning feeling dodgy again.  It was a simple decision really; my long term health is my priority so I decided to stay home from work.  The problem with being a teacher, is that this is not necessary the easiest option.  The reason teachers often still attend work despite ill health is because of the following:

  • We still must notify the Deputy by 6:30am and preferably send through our lesson plans by 8am.
  • As teacher of music, my lessons plans must reflect the high probability that it will be supervised by a non-music specialist.
  • And what rehearsals might we miss? Must email student reception so they can notify parents that the rehearsal is cancelled.
  • Prepare to deal with the hundreds of emails that will require a response the following day.

Not a problem.  I planned the lessons and sent the emails before returning to my cosy bed in the dark. What next? My partner and I were becoming increasingly concerned with the health of his cat Ashram.  As I was already home, I promised to take her to the vet when I felt more like myself.  I did.  I was so worried about her wellbeing so I repeatedly sang “Soft Kitty” as we drove to the vet. Question:  How do you tell the love of your life that his cat, who he has owned for 2 days short of 20 years, that she has serious kidney failure and must be put to sleep? One:      Try to suck up your own pain and provide a simple and clear explanation Two:     Don’t sob uncontrollably Three:  Be the presence he needs whilst purposefully ending a relationship that has lasted half of his life. A situation like this couldn’t have been staged better.  It was raining, the roads were flooding, and the threat of damaging storms was very real.  Now add this to the picture:

  • My man in a suit and tie, outside in the rain, digging a hole and burying a beloved pet.
  • Me standing behind him, sobbing as quietly as I could manage.

I did what any sane woman would do.  I headed to the shops and bought every comfort food I could think of.  We had red wine, frozen chips, frozen potato gems, chocolate, salt and vinegar Pringles, fresh bread, butter, avocado and ripe juicy tomatoes.  I then proceeded to wait on him hand and foot. The problem was that I couldn’t go near him properly for at least two days.  I felt selfish because of my uncontrollable crying.  I showered for long periods of time just for the privacy to experience my own pain.  I also chose to re-read “50 Shades of Grey” in the interest of inspiring other, less depressing thoughts.  Despite this my absences seizures became more noticeable, and on occasion I suffered a minor tremor in my hands and jelly legs.  Whilst people mean well and continue to remind you that stress is bad, this external motivation tends not to come with practical solutions relevant to your needs.  What is important is our own personal motivation.  I found that plenty of sleep, exercise, piano practise and commitment to both home and work gave me focus to climb out of what could have been a driver’s license threatening moment. Three weeks later and I am feeling more settled.  Whilst Ashram is still that unnerving shadow in my peripheral vision, I am encouraged by my increasingly positive ability to not let life’s downs dictate epileptic activity. Have a great weekend! MJ