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

Overwhelming Days…

Despite my generally positive outlook on life, I, like many, have miserable days.   Yesterday was a mixture of tears, terrible self-confidence, love, relief and laughter.

My fault; I got on the scales in the morning of an EEG and neurologist appointment.   I was already anxious about whether I would get my drivers license back and, as I have been true to my new years goal of fitness, health and general calm it made sense that I may have lost weight. I have been going to yoga three times a week and have been on the treadmill every alternate day. I have never felt as fit as I do at the moment. I really need to throw out those scales! All I can think is that although I am not a biggest loser contestant I will be if I keep this up!

What do you do when things turn ugly?   I ring my darling mother. Always full of sensible advice, Mum tried to remind me of all the positive things.  She reminded me of my positive sense of self only the day before; that I was proud of my motivation and commitment to lead an active and stress-free life.   Then she talked to me about my pending specialist appointment. We discussed my reaction and her concern for my ability to remain strong if I failed to get permission to drive. Just the possibility that the EEG might show some seizure activity terrified me and I cried again.

So what happened? EEG came back “satisfactory” with no seizure activity. I can drive again!  I would normally have done a yippee dance but my state of mind is so mixed up at the moment, I felt relief minus the smile. I am not happy with my weight. I want a baby and cannot bring myself to even begin trying until I have lost this weight. It was so bad that I (briefly) considered crazy ideas for quick (and ultimately unhealthy) weight loss.   There is more. I am not happy with the stress at work.  It is difficult to let things go when you care and have so much passion for your job. It’s worse when you consistently deal with disorganization and unrealistic work loads.

As usual, I need to do something about it. A baby, my self-image and drivers license matter more than anything. I’ve arranged to return to my dietician next week, re-organized my wardrobe separating the beautiful yet too small clothes, and completed a healthy grocery shop. A vegetable soup is currently simmering on the stovetop. Other than continuing the exercise there is little else I can do but wait to see results.  Then I figure I will have the experience of going clothes shopping in my own home AND without the expense!

Work… well that is another matter. The boys return to school on Tuesday and I am looking forward to seeing them. I expect that returning to the classroom will erase the frustrations I have with other aspect of my job.

Now that I am driving I’ll finish with some humour:

Have you ever noticed that anybody driving slower than you is an idiot, and anyone going faster than you is a maniac?

George Carlin

Concentration is the Key

At least for me, Tonic Clonic seizures result in memory loss and difficulty concentrating. As a woman and someone with epilepsy in an academic position, I cannot afford to be forgetful and scatter-brained. People do not understand the result of a seizure and often fail to accept the symptoms like they do the flu, asthma and even allergies. Put simply, this ignorance means I cannot afford to allow my symptoms to affect an excellent standard of work. The lack of understanding, no matter how small is everywhere.

So what am I doing about it? Well complaining certainly won’t solve anything! Instead I have started my first 2000 piece puzzle. I call it complete insanity supported by a close friend! It is a poster-sized picture of a concert hall complete with choir, pipe organ, orchestra, grand piano and audience. Imagine “Where’s Wally?” as a musical and you have some idea of the difficulty. The following three things are a consequence as I work towards its completion:

  • The puzzle has forced me to concentrate and focus;
  • My memory is improving as I remember images and look for matching pieces; and,
  • This quiet activity is enjoyable shared with a friend. We have both shared giggles and our frustrations.

I doubt we will finish this before school (aka work) resumes on the 19th January, however it is certainly waking my brain up for another busy year.

MJ

No Regrets!

I believe the trick to living life to the full is to have no regrets!

Don’t get me wrong; I have done some stupid things in my time. As a young adult I am sure I got a cold sore before I did something stupid; it was usually boy related.   As I have grown up I have realized that what doesn’t kill you makes you stronger and wiser.

I haven’t come by this understanding on my own. In fact, I have learnt the most from the experiences and example set by my mother.   My father was an adulterer and violent towards her. He was that subversive kind where the bruises were hidden and control was asserted via fear and mental manipulation. My mother was always very quiet and un-opinionated. She gave up friends and other activities including reading, listening to music, playing sport (of which she was exceptional), family outings, and creative cooking. After they separated I started to see the real woman. Once she regained her confidence, I saw determination, professionalism, creative thinking and a sense of fun. My mother does not take crap from anyone. She has taught me to have confidence in my ability and to be open to new experiences. Whilst I am sure she quietly regrets staying with my father for as long as she did, she has made the conscious decision to act and be true to herself. Mum always tells it as it is. Sometimes it is simply hysterical giggles when I step out of a change room, but honest all the same. She is also in love with my ‘defacto step-father’. Her and my defacto stepfather have travelled the world, socialize and enjoy an equal partnership.

And as for what happened to my father? Karma. He died after a three-year struggle with cancer. I found it difficult to mourn him like my Brother, Aunt and her family, and I refused to sit at the front with a family who had disowned me as too like my mother. Once again my mother showed her strength by attending the funeral and emotionally supporting my attendance and choices. I was not invited to walk with my brother and Dad’s family behind the coffin as it left the building. Much like the actions of my father, my brother ignored me, choosing to turn his back on me when I approached.   On reflection, that was the most difficult part of the funeral. My brother and I have since had a disagreement and don’t communicate.

Dad’s death made me promise that I would no longer invite people like this into my life. In this one instance, I do not regret my choices to sit with mother’s family – mum, my aunt and cousins. I do not regret crying because the eulogies were a lie, and I do not regret eventually telling my brother how I felt.  It is true that staying true to yourself can be difficult. At least for me, my decisions then meant for a happier today.

Ok, enough of my family story. Have an excellent new year that is regret free! Live and learn!

MJ

Resolutions of Value

New-Years-Resolutions-Quotes-Images-1019The last time I actually fulfilled a New Years resolution was my final year of high school. I resolved to be invited to a formal other than my own. Lucky for me I caught the bus everyday with the boys from our local Boys College. I was excited to be asked by a close male friend. More than 15 years later, we still communicate.

Since then, like many of you I am sure, I have made the usual resolutions and failed to successfully accomplish them. It seems to me that many resolutions are negative from the very beginning; they have little to no respect for who you are as a person. At least for me, they have always been competitive and more concerned with outward appearances than my own development and wellbeing. With this in mind, I am making the conscious decision to create realistic, positive goals to improve my physical and mental health, career and relationships.

So what are they? I don’t have a list exactly, rather the motivation to not have another seizure for at least 12 months. In Australia there are laws regarding epilepsy and driving. I am currently unable to drive until at least the 23rd January when I will have an EEG and follow-up consultation with my specialist. Hopefully nothing has changed, and the suggested cause of my recent seizures is substantiated. If I have a seizure within this year, I will have my drivers’ license suspended for 12 months. I intend to do everything within my power to ensure this does not happen.

It is interesting how people just don’t understand the importance of having a drivers’ license.   For me, it is simply the independence driving affords. I can meet friends anywhere I choose, I can get to work earlier or leave later and I can go grocery shopping without worrying if there are too many bags to carry home. Ultimately my independent and stubborn soul finds the need to rely on others difficult to handle.

In the interest of my own wellbeing, independence and health goals I am taking stock. I am sure the cause of my most recent seizures was stress.   Actually now that I think about it, all of the seizures I have had in the last 10 years were stress related.   I need to remember that you work to live, not live to work. Despite what we think, everyone is replaceable. So if I want to reduce stress in my life, I need to consider how stress affects health and discover ways to overcome it.

So what is stress and how does it affect your body? Researching the answers to these questions lead me to the Stress Management Society. See their web page at:

http://www.stress.org.uk

On this web page I found a stress test. Well no surprises there. However some of the suggestions are extremely valid and will form part of my plan for action:

  • Work off stress with physical activity
    • Release adrenaline and increase endorphins, the happy hormone.
  • Say “No”
    • When necessary, say “no” and don’t attempt to fulfill unrealistic expectations.
  • Time Management
    • Do one thing at a time. Be organized and factor in time for unexpected issues. Write a list of work that needs to be accomplished. Prioritize an order of importance and decide what jobs can be delegated to others. Finally, consider if there are any jobs that are not important and can be deleted from your list.

I will begin now with physical activity that encourages endorphins. Whilst I have always preferred to play a musical instrument or sing for hours than exercise I will begin by finding activity that is enjoyable. Earlier this year I bought a treadmill. I actually quite enjoy a brisk walk on the treadmill with a great play list on my iPod. Similarly I enjoyed my associations with Planet Inline, an inline skating school in the heart of Brisbane City.   For obvious reasons, skating is not a safe activity at the moment however there is nothing stopping me resuming regular treadmill activity with an updated play list to keep things interesting!

There is so much yet to say. I am finding this exploration into the aspects of my life therapeutic and informative. Whilst I keep you informed of my progress, please continue to leave suggestions and feedback.

“Those who gave thee a body, furnished it with weakness; but He who gave thee Soul, armed thee with resolution. Employ it, and thou art wise; be wise and thou art happy.”

– Akhenaton, ancient Egyptian ruler

MJ