Wednesday 25 March 2015

Purple Day Celebrity Auction

As you may or may not be aware tomorrow (March 26th) is world Purple Day. This fabulous day is aimed at raising much needed awareness of Epilepsy. People across the world will be donning purple clothes, baking purple cakes, dying their hair purple and much MUCH more all in aid of #PurpleDay! 

The lovely people at STYLIGHT have been in contact with me to let you know of a way you can get involved!

Purple Day Celebrity Fashion Auction

This is hot off the press info about the event...


"STYLIGHT, the leading European fashion discovery site has today launched its inaugural Purple Day Auction enabling fashion-lovers to pick up some true style gems in the name of charity.
The e-commerce site invited over 50 of the most fashion-forward international stylists, fashion bloggers and tastemakers to open their wardrobes and donate a precious fashion piece in support of global epilepsy charities, namely Epilepsy Action in the UK
Amongst many of the pre-loved, new and unworn designer items are a new mini Moschino leather bucket bag from the CEO of Luisaviaroma, as well as a Dries van Noten dress from Sarah Bailey, Editor of Red Magazine and other amazing finds such as Chloe ballet flats, a Miu Miu clutch and a showstopping Mary Katrantzou jumper.
The auction will begin on Thursday, March 26 at 9am and will end Thursday, April 2 at 9am."




Take a peek at the link above and discover what you can bid for. There are some amazing items and better than that you'll be raising awareness for Epilepsy in the process.

Whatever you're up to tomorrow make it a good one and have an amazing day. I'm hopping on a train to London with my little sister to attend an awards ceremony held by Young Epilepsy, I'll tell you all about it soon!

Thursday 19 March 2015

Instagram

I have recently joined the world of Instagram!

I love it simply because it encourages me to take more photo's which in turn makes me happy :) and I can keep track of the little things that matter even when my terrible memory can't!

I'm jade.dolby in anyone wants to follow.

X

Tuesday 17 March 2015

My guardian angel (seizure alarm!)

So it's been a while! I can't believe how fast time flies... I've got a couple of hours before choir tonight so I thought I'd catch up on life a little by posting about my seizure monitor alarm system at home. 

This is the Epi-Care Free sensor and I can safely say it has truly been a lifesaver! I'm head over heels in love with it simply because it's given me some of my independence back. It means I can live alone again with my mind slightly more at ease knowing that when I experience a seizure someone will be contacted to come and help me. 

Right, let me explain how it works... (with pictures whoopee!)

This is the sensor itself. It comes in a handy watch design that is very lightweight and fully adjustable to fit even tiny adult sized wrists (yay). When I have a tonic-clonic seizure the sensor picks up the odd and repetitive movements and sends a distress signal over to the sensor box...
The sensor box which you can see in the picture is about the size of little telephone and sits in the corner of my living room plugged into the mains. Upon receiving the distress signal from the sensor watch the box sends out an alarm call. This is a very loud beeping sound which alerts anyone that might also be in the property at that time. On top of that the box also sends a signal over to the Telecare system....
The Telecare box is linked up to a dedicated call centre via a landline in my bedroom. It is essentially a hands free telephone, you can see there a speaker on the box and various buttons. When the Epi-care box starts alarming the Telecare box automatically dials the call centre for assistance. Once connected, which only takes a matter of seconds, a member of staff then talks through the speaker to see if they can get a response from me. Obviously if I'm still having a seizure I will not respond. In this case the call centre then tries to ring my mobile phone to see if I answer (incase its a false alarm). Again I'm not going to be able to answer if I'm seizing. They then start calling people I have chosen to be my responders. In my case that is my friend who only lives a street over, then if she doesnt pick up the phone my landlady is next on the list followed by another friend who lives a bit farther away. Failing anyone answering their phone and being able to come and help me, the emergency services will be called to my address. I can also simply press the big red button if I feel an aura of otherwise unwell and the call centre will arrange for someone on my list to come over and see me so I don't have to figure out my phone etc if I become confused. 

It's all very clever and I can report that the system does indeed work! The sensor also picks up "wandering off" so if the sensor goes out of range of signal the alarm will be triggered. I'm lucky I don't do this anymore as my Complex Focal Seizures have taken a back seat for the time being. It does mean however that I absolutely have to remember to take the watch off before I leave the house! 

It's great as I can wear it almost all of the time so wether I'm awake or asleep a seizure will be picked up. The one thing I can't do is wear it in the shower. So instead I have a little pendant which has a button on it to press that I keep in the bathroom. If I wake up after a seizure in the shower I can press it and the alarm will be triggered. Sometimes though I simply don't wake up after seizures so to make myself extra safe I always call either my landlady who lives down stairs or my friend to tell them that I am about to have a shower and call them again when I'm out of the bathroom and have the watch back on again. 

I hope that makes sense! I'm very lucky to be able to have this system in place and I am incredibly thankful for it.