The Adventures of Electro Girl!

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The mail is becoming more and more exciting as we get closer to Christmas.  Packages from England and Canada are arriving sporadically, but this particular day I had a package from Australia.

I was over the MOON as I knew what this manilla envelope meant! I finally got to hold this book in my hands after reading parts of it in tiny print on my cell phone and others on my laptop.  My fabulous, inspirational cyber friend (hopefully we will meet in person at a later date!), Lainie Chait a.k.a Electro Girl who is yet another resilient individual suffering with epilepsy, is someone I have had the privilege to work alongside during this seizure journey.

She has spent the last couple of years creating this book, documenting her life and specific experiences with the condition.  I was lucky as she gave me a sneaky peek of her composition before publishing, and I can tell you it is phenomenal.

It’s funny, witty, poignant and relatable.  I don’t want to give away too much as I have a couple of chapters left to finish, but I will be posting a review of the book to give you a taste of what’s in store during your read.  If you can’t wait till then, check her out on Twitter at Electro Girl and on Instagram, electro_lainsta – get following people!

Quote of the Day

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Being an English transplant in America, Thanksgiving is now on the menu.  But with Thanksgiving having come and gone and the transition to Christmas being well under way, this becomes a time where I contemplate all that I have been/am grateful for.  Perhaps more importantly, I’m enjoying and appreciating every day and the magic that each day holds at this time of year and all that my body can do.

Make the most of the run up to Christmas folks!

Quote of the Day

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With packing up our house, moving, now unpacking and slowly getting straight, the last month has been busy to say the least.  I’m behind with many tasks which should have been completed yet they remain untouched and the layer of dust upon them thickens.

I love the house we’ve moved to, the energy is so positive and I feel that as a newly married couple this is a real family home, so why then has the last three weeks been so dark?

I found it time to withdraw from people and silently sit in my shell whilst immersed in a pool of fear, anxiety and loneliness from which I could not escape.  This is why I chose this quote as it is most apt.

The AED journey continues and perhaps that has something to answer for.  Increasing Lamotrigine and decreasing Depakote while maintaining the Onfi could be creating all manner of chemical reactions within my system, after all the tremors have returned so could there be more?

Many people suffer these symptoms for a variety of reasons, I will be the first to say it is difficult to just pick yourself up and move on; however, there are options.  If you recognize your symptoms, rather than wait till you’ve slid down that spiral of sadness and depression, reach out for those who can at least help and support you even if they can’t ‘fix’ it.  Remember, having a supportive network allows you the strength to “Face everything and rise” rather than “Forget everything and run”.

 

Quote of the Day

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As someone with epilepsy, when I hear the numerous accounts of careless and thoughtless comments flung around so flippantly, it reinforces the power that words run deep.  When negativity is heard repeatedly, it often becomes easier not to respond.  What about freedom of speech?  Well, yes but not at the expense of  causing a fellow human pain.  How is it that we can be forced into silence because it’s the easier option?  We shouldn’t have to live in this way because of the stigma attached to epilepsy.

So, just as respect comes into play here, I might just add in the light of these last days to consider your neighbor.  Whether you agree or not with the Presidency outcome people’s experiences are different; therefore, their choices come froma  place that you probably know nothing about.  Be kind to each other and show respect even if somebody doesn’t have the same values as you.  As we well know living with epilepsy, unless you walk a mile in someone’s shoes, you’ll never fully understand what it is like.

 

2016’s Best & Worst Cities for People with Disabilities

Well, it’s Friday and after a week of research and writing about epilepsy, I found this fascinating little nugget of information on wallethub.com.  This, perhaps, will be of most interest and affect those living in America, but the statistics are a reality check and include the differing levels of how people are able to live, work and obtain health care.

Why Not to Miss Your Medicine!

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I opened my eyes completely disillusioned and looked into the darkness; I was awake as could be.  Ugh!  Why couldn’t I sleep?

I got up, looked at my husband sleeping peacefully with some envy, grabbed his dressing gown from the back of the door and slipped my arms through the sleeves.  Yep, it was official; sleep wasn’t going to come to me, certainly not now anyway.  The clock displayed 11:30pm and I padded downstairs to watch some television.

The last four nights have been relentless.  I’ve switched between the sofa in the living room, the pull out couch in my work space and my own bed just to see if a different environment will allow me to drift off.  I’ve wanted to scream with frustration!  Eventually, I’ve drifted off to the land of nod but not in my normal peaceful way, it’s been a little more restless.  I have woken up feeling somewhat drained and not as refreshed as normal.

After two hour long episodes of my current favorite TV series, I was still alert as could be.  Just what was the problem?

I tried to settle down on the sofa.  Suddenly my eyes opened, of course!  How absolutely stupid and careless of me, but that had to be it.  With the complicated process of withdrawing off Depakote and slowly increasing the Lamotrigine with the intent that my body wouldn’t notice what I’m doing, I had completely forgotten to take my third med, Onfi at night.   I even fill a daily tablet dispenser but still, I have a brain like a sieve.  How could I have gone five days without noticing that I wasn’t taking something so essential to my wellbeing?

I have never been on three medications before and alongside the nine vitamins which I take, plus the Buspirone in the box which I refuse to take as I don’t believe it’s necessary (much to the puzzlement of my doctor, but I’m listening to my instinct and it’s proving right), it must have slipped through the net.

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By this time it was 2:45am and there I was in the kitchen with a sharp knife cutting up the Onfi to create my dosage which I gratefully took.

I silently walked upstairs, stealthily opened the door and picked up my pillow and phone.  Aware that it wouldn’t be in my blood stream for a while, I needed a source to calm my whirling head full of thoughts, pounding heart, sudden shots of anxiety and subsequent adrenaline rush; therefore, I reverted back to my childhood habit.  I inserted my earphones, brought up Spotify and chose my music of the moment and channeled all my mental and physical sensations into the voice of Jarvis Cocker.  Perhaps not the most relaxing of music but somehow it constantly enables me to connect to a place of peace in my soul.

As I lay down, I was overcome with a sadness that I don’t normally feel.   Whilst I have plenty of support and love, ultimately I have to deal with this alone.  I don’t have control over my body and it will respond in the only way it knows how.

Nighttime is always the most fearful time for dealing epilepsy related issues.

I think I was too exhausted physically and mentally to maintain positivity at that stage, it happens, but I know I must embrace it as “This too shall pass.”

As I thought about the previous four nights, it made sense.  The night terror on Tuesday night where I dreamt my husband drowned in a tsunami which upon waking had me sitting bolt upright with a deep gasp of fear and my heart racing, was in fact a seizure which I hadn’t clocked at the time.  I only acknowledged that I hadn’t had a night terror for months.  Those seizures had stopped since taking the Onfi.

The leg twitching which had been present the night before whilst I had clocked it and thought it strange, still hadn’t enabled me to connect it to a lack of Onfi in my system.

It may also explain the fact I’m forever seeing things out of the corners of my eyes that aren’t there. It was a blessing that there wasn’t a more serious reaction.

This mishap with the Onfi follows my bad organization of not ordering enough of the vitamins which I am deficient in.  With the expenditure for the wedding I thought I’d wait till the end of the month to buy them and so I was without them for three weeks.  In those weeks the absence clusters were ridiculous.  I was having so many and if you follow my blog you’ll be familiar with the documentation of them in my Quote of the Day, if not, conversing and interacting with people are near impossible to do.  I’m good at pulling the wool over people’s eyes with them and they go unnoticed but the length and severity at that time was just too much for me to be able to cover up.

Whilst unintentional, this was a good test on both the vitamin and Onfi front just to appreciate exactly what their purpose is and how vital they are to my health.  I would not recommend doing this deliberately, but in this circumstance I am now very much aware.

The next step is to hope that my bed doesn’t, as it did as a child, become a place of fear where I dread going because I know I’m not going to be able to sleep.  So here goes, fingers crossed!

 

Quote of the Day

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This is one of my classic mistakes.  It’s a negative cycle; I compare myself to others thinking that what I see is truth (which is not always the case), then I feel bad about myself and my life and I have to pick myself up and start over again with that positivity.  It goes back to that other age old saying, “Be kind.  For everyone you meet is fighting a battle you know nothing about.”