Monday, March 26, 2018

Purple Day

Today is Purple Day - the day to bring to the fore and into the public eye the attention of Epilepsy. This is an uncomfortable and very confronting medical condition that nobody wants to talk about or think about because it's not pretty, it's not a behind-closed-doors kinda thing.

No, Epilepsy is a brain condition which affects not only the person who is suffering from it, but their family and friends. This brain condition - and it's also a disease - is something I've been born with and have recently found out that it's genetic in my body. 

Man, did I feel like I was cursed!

But the doctors told me that it would take time to get myself well - time and patience. I had all the time in the world; but patience? Well, I wanted to do so much!

We have been to Melbourne and back, where I overdosed by accident. I've been in and out of so many hospitals and lost track of how many medications I've been on... and now so many years later, I'm eating a healthy vegetarian diet, don't drink alcohol, don't smoke (anything) and yet, still find it difficult to get to sleep at night. 


I have accomplished a few things I've always wanted. I'm living on my own now, and own a car as well. I've learned to cook, take care of myself and my home and learned to keep plants alive too. And these are things which are wonderful to accomplish in life - and they may be small to some people, but for me, they're majorly huge.

But today, I want to step forward and tell people about my condition/disease as it's not all what you see in the movies. It's nerve-racking, it's tiring and feeling like you're not in complete control of your life or anything you do - ever. 
It's not able to sleep in until 10am, all because you have to be up by 7am to eat with your medication or it'll burn a whopping big hole in your stomach and it hurts like hell.
It's having to pick and choose which nights you can have late on the weeknights just in case you stupid neighbours decide at the last second to have a 24-hour party and keep everyone awake not only on Friday night but also on Saturday night as well - expecting you and everyone else to sleep when they do.
It's looking at everything set out at a party and knowing you can't touch any of the lollies just in case it all collides with your medications - and opting for water instead of the crazy-coloured soft-drinks, while people give you a weird look and you have to explain you can't drink 'that stuff because it's full of crap ingredients I can't have.'
It's not only these things, it's the physical things too - the after-seizure problems of absolutely no energy, the scars you have on your body, the cuts, bruises and sore joints and muscles which take an age to heal. It's the stay in hospital where you can't sleep because your brain is still zapping away and you're waking up before anyone wakes you up to check your blood pressure. And it's the brain fogginess of wondering how long it'll be before you'll back to normal again - only to have this electrical short circuit screw you over again.


Then, there's the doctor's appointments, the blood tests you have all your life - more than most people do - just to keep your levels in check. Some of the medications I take can't be checked, so the doctors have to get my liver and kidneys checked to make sure one of the medications isn't shutting them down without my knowledge. This is the creepy part of being on medications for the brain: it affects everything else in your body.
The seizures I used to take in my past will come back and bite me in the arse because in a few years, I'll have to get my heart looked at due to my heart muscle and aorta being at risk of being weakened as I age. My bones are likely to weaken faster too; so I'm on Calcium pills at night - have been since my mid-30's - to keep them strong for when I'm older and my body ages.

And that's not all.

Every year, I have to get my eyes tested for my driver's licence and have a medical certificate from my doctors to say that I'm cruising along just fine... this means more blood tests to say that everything I'm taking is stable and a-okay. Only then will the government renew my licence to drive a car. If anything is not reviewed every year, I'm not allowed to drive anywhere. 

So, please do help me bring to the forefront of the news and people's minds today this majorly overlooked medical condition. 

It's only for one day a year I ask you to talk about this subject... so please wear purple today. Talk about Epilepsy and you'll be surprised who you know who has it. For one thing: you know I have it. 

Tuesday, March 20, 2018

Keeping to Me

I've lived in the same unit complex for over 15 years now; and I've learned a lot of things about a place like this.

I don't like living in unit complexes and seeing how long I've been here, I don't want to be living in another one anytime soon after moving out of here - and really do you blame me? There's a car park next to my place, I hear everything going on in everyone's lives. I smell it when somebody is having a cigarette, or has burnt their meal over the back fence and I even hear them having conversations right at my back fence.

Oh, yeah, I really want to move back into one of these places.

Noise is a big factor as well. I've put up with so much around here that no matter how polite I've been I've always been told to 'go fuck yourself'... yeah, nice. It gets to a point where I just don't care and when people say that to me, I walk off, call the police and let them deal with them. And I don't have the problem in the head, those who think it's okay to curse and swear at me do. All I'm doing is trying to get a good nights' sleep. 

Over the past 2 years I haven't made any effort to make any new friends here - and do you really blame me? I keep to myself and declutter my home, do my grocery shopping, get in and fix up my garden, watch movies/tv series on dvd at night while I knit and drink my green tea. 

I lead a very quiet kinda life. 

But I never used to.

It used to be all drama for me here because I had nothing better for me to do around here.

Now I have a car, I don't want the drama or problems of everyone around me. I want them to leave me the hell alone. 

I'm not here to solve everyone's problems. I'm here to live my quiet life of an artist, a gardener, a writer and an op-shopper. 

I don't want to hear people partying from dusk until dawn. I don't want to hear the fights which cause the police to come out and arrest people. I don't want to be the one people ask all the questions because I've been here the longest (we do have a Body Corporate - look them up and find out what you need to, people). 

I live here. I'm a resident. I'm not here to solve problems and I'm not the caretaker. Cleaning up the drains before a storm is not my job, neither is it to clean up the damned garden outside my house (that's why it looks like a dump). 

I'm keeping to me because I'm doing what I want to here. I'm not a loud person. I'm not annoying anyone and I don't want anyone getting into my face anymore. I'm getting too old for the drama and the 'Neighbours'-like lifestyle people seem to think is normal in places like this; when they forget that 'Neighbours' is just a soap opera and would never happen in real life. 

Real life is what you make it. It's not supposed to be easy, it's not supposed to be difficult. It's supposed to be an ongoing journey of what you work on for yourself. Once you understand that you're a work in progress for your entire life, well, that's just the beginning of the work on yourself. It took me years to figure that out - and I'm still learning about keeping to me. 

And still, people don't get it. 


Sunday, March 11, 2018

Family Ties

Yesterday, I was out celebrating with my Oma - my Dutch Grandmother (Aunty Helen's Mother In Law) with afternoon tea with the family at her retirement/nursing home. She had turned 99 years young on Thursday; and has only just been placed in one of these homes recently. 

We all got dressed up and sat around a large table with her at the head. She looked lovely in her purple top. 

But it made me wonder, as I was shown around the place, about the other people in there - about how things were for them when they were younger. Where they daredevils in their youth? What were their families like? Did they work or were they home-bodies, staying at home to care for the kids. Had they been to war or didn't they pass the physical? 

I knew deep down inside, they were all young once and even though these places really spook me, I know that if/when I end up in one of these places, I'm going to have somebody looking at me while I'm there and probably feeling the same way.

I also wondered if any of these people's families visited them; so see how they were. Did any one of their family members bring them flowers? Did they bring anything for them to do or come to take them out to lunch or chat with them? Or did their families put them there and never came to see them; thinking they were too much of a burden (as some families do unfortunately). 

The place Oma's in has a lovely lot of things around the back. There's a phone booth, a bus stop and a cafe where they can all spend time if they wish. There's a resident dog called Bailey (and he is a real sweetheart too) and a cat who doesn't like to be patted, but I think that's just a personality clash really. It's not a huge place, and so each person is looked after well; and it's nice and quiet - even though the main road isn't far away. 

I know Oma is visited often by family and she's much-loved by us all. And seeing how long she's been with us, I'm sure she'll be around for some time yet. So, what do you think of nursing homes? I know there's good ones and bad ones around. But I'm not a big fan of them really. I would hate it to have my life whittled down to a corner of a room - it's just not me. But I guess as I get older, my thoughts on this will change. Until my next post, take care, stay safe and remember, I'm always here.