Occupational Health

Urgh this is ALWAYS an annoyance.  Now, don't get me wrong I fully understand that it's all a matter of health and safety for others as well as myself but I always get a sinking feeling when someone needs me to come and sit down in their office and "go through some minor details regarding my medical condition".

I signed and handed over my work contract the other day, no biggie just read and sign a few forms. When I was waiting to catch a bus home however I had a call from an unknown number to my phone. I answered to find out it was from occupational health... great.

It was basically a meeting to see if I was suitable for the job role and any adjustments that need to be made which again is perfectly fine and usual procedure. But.. I can't go to far into it but I was absolutely gobsmacked at how little this person knew about Epilepsy and some of what was said made my want to cry let alone run away and hide. Let's just say their first aid skills weren't exactly up to date/scratch and I only hope that any "advice" they may give to other members of staff won't have to be used. Thankfully they will not have anything to do with helping me through a seizure and it's consequences. I did however blurt out as much information on Epilepsy and tell them as much information as I possibly could have in terms of what to do first aid wise.

As requested I popped down to visit the nurses they are so, so lovely and have dealt with my many a time before. When I first went into her room she told me how only last week they had been talking about me, I immediately though why on earth? Then she went on to say "well picture the scene.. there I was sitting in my kitchen the other day eating my cereal and caught a glimpse of a young girl on the TV and thought hang on..." haha it turns out she'd watched me during my interview on Daybreak. They know me very well as do security (who are also the first responders) for obvious reasons. She told me not to worry they know I'm around and about and will mainly be in my office with people around. Because my hours are at my own choosing all I have to do with tell someone I'm in the building when I arrive and that's that. She advised I make a little note with various phone numbers for people around the campus i.e. the medical centre, main reception and medical emergency and make it very clear that they are NOT to call an ambulance until I've been assessed by on site medical staff. We joked about putting a poster up in the main reception with my face on it and a quote saying "she's back..." :) There is also a sick bay that I am more than welcome to use whenever I feel I need to just for nap or know that something isn't right. I had an unexpected wave of relief when she told me this.

The people I work with knew from my before my interview that I have Epilepsy and it really isn't a problem for them. They know what to do should anything happen and that's simply it. I do hope with all my heart that there won't be anything too dramatic and scary for them I would feel terrible for putting them in a situation like that. Unfortunately though I can't control my seizures so they will most like show their ugly face. I trust the people who are around me and we will deal with it when comes together. 

Well anyway that my little rant over! 

The internship begins

Today will be spent catching up on some rest after a very busy few days.

I started my internship on Monday and I'm loving it already. I've met some lovely people and started on some projects with exciting prospects. The room where I am based is lovely with stunning views over the Usk Valley! I don't think I could ask for much better in terms of work environment. I've also bumped into people who taught and helped me throughout my degree, there's some serious catching up to do!

There was an exhibition opening last night that I helping finish off and run. It didn't really involve much just pouring some drinks and pointing people in the right direction. Again there were plenty of people to catch up with which lovely. 

I'm very tired already but I just have to learn how to spread my hours to suit myself and my energy levels. I can't put into words just how good it is to be back in this creative environment again.

Looking forward to what's to come!

Passing the time.

I'm sitting looking at a bright day with a (dare I say it) little hint of spring in the air. I'm so pleased and relieved to see some sunshine it lifts a person's mood a great deal I think.

I start my internship tomorrow. I can't wait, my insides are buzzing with excitement and I'm surprisingly less nervous than I thought I would be. What I am keeping quiet though, is my fear of seizures going up a gear simply because of the stress and tiredness that it going to come along with working again. It's silly really, I should stay positive but there's just some things that weigh on your mind that little too heavily. I'll be doing nearly 4 hours travelling alone each day on top of the work.. tense times. 

With busy days starting from tomorrow I've haven't much planned today. Just chilling, catching up on some TV, flicking through arty magazines and hanging out with my housemates before all but one of them disappear back to various parts of Wales for their placements along with drinking a ridiculous amount of tea.

I'm also becoming slightly obsessed with Twitter at the moment. I've only just discovered it properly in the last month or so. There are SO many people I want to follow I reckon I could easily reach into the thousands if I clicked on anyone to do with photography, art, galleries and Epilepsy. Yet another way to reach out into the world out there and loving it! 

ITV Daybreak and BBC Radio Wales

I can't quite believe the last few days. When I woke up on monday morning little did I know that the couple of days following I would end up appearing on live TV and live on the radio helping to raise awareness for Epilepsy charities following a campaign launch.

Monday morning a new Epilepsy awareness campaign was launched called "Everyone knows Someone" by Young Epilepsy, Epilepsy Society and River Island. A press release was sent out at the beginning of the week with a little story of my personal experience of living with Epilepsy as part of it.   Monday afternoon I received a phone call from Young Epilepsy asking me if I would like to appear on TV to be interviewed alongside Young Epilepsy nurse Kirsten McHale the following morning on ITV'S Daybreak. 

It went really well!  We spoke out about Epilepsy to a large audience, people out there were listening and watching as two people with Epilepsy as a huge part of their lives spoke from their hearts. It went by in a flash and I did leave with a billion more things I wanted to say but lets face it we could have been there all day however and most importantly of all we introduced that tiny bit more awareness into the world. I think I can say for the both of us if not just myself that there was a rather large wave of relief to be ridden and an incredible high to be felt when the interview was over and we were lead from the studio. What a morning! Catch us in action at about 46 minutes into the show!

On the train back from London I had another phone call asking me I would like to take part in an interview live on BBC Radio Wales that afternoon. Having had confidence instilled in me from the morning's events and still riding on an adrenaline high I was more than up for it. I was to provide the personal touch to an interview with Epilepsy Specialist nurse Clare Harrison. If you want to listen to what was said there's a link to the program here the interview starts at around 17 minutes in.

What an incredible experience, I feel so privileged to have had the opportunity to raise some much needed awareness for this condition in such a amazing ways. I certainly won't be forgetting it :) 

So what's it like to be interviewed live on national television and radio? I'll tell you... It's adrenaline pumping, exciting, scary, exhilarating, nerve-wracking and unbelievably brilliant! I shook from head to toe, was convinced my ability to talk would desert me and would somehow ruin the whole thing. The bit that worried me the most and I kept completely quite however, was my absolute dread I would have a seizure of some sort live on screen/air. Now as much as that would be the ultimate way to demonstrate.. I would not have appreciated it! Where on earth did my positive attitude go?? There was no need to worry though it turns out. 

Thank you to ITV and BBC for showing interest in the campaign and condition and allowing these interviews to take place. Here's to the future of peoples understanding into the world of Epilepsy. 

"Everyone knows Someone"

"Everyone knows Someone" is a new Epilepsy Awareness campaign launched on Monday 11th February 2013 by Epilepsy Society and Young Epilepsy together with the clothing retailer River Island.

This brilliant campaign is to raise some very much needed awareness for Epilepsy.

Pop on over to youngepilepsy.org.uk to find out more information and what you can do to join in the excitement as well as get an awareness bracelet. 

Exciting stuff!  

Exciting stuff coming up!

Some EXTREMELY exciting events have gone down over the last couple of days!! When I'm free and sat down with a mug of tea I'll write all about it.

Live TV and everything :)

x

Mini break

Well after this whole drug reaction debacle I'm feeling a little better. The sun was shining most of today so I thought I'd take some advantage of it and go for a little walk I'm no where near 100% though so had to be careful how far I went and not to use to much energy. My walk was pleasant though, it feels good to be out and about.

I haven't got any plans for the weekend so I think I'm going to take a little trip to my mums to chill out on the farm for a few days. When I start my job I don't know how busy I'll be so who knows when I'd next have the chance to run away for a bit. My nerves are jangling however because I'm decreasing my dose of Vimpat rapidly and once it starts to leave my system I'm more at risk of seizures. It's going to be even more of a nervous train journey on my own. It'll be worth it though for some country air, seeing some family, a few big furry cats to cuddle and some time to disappear :)

Here's to a nice weekend x 

Dangerous levels

Ok so the rash I have come down since Thursday has turned out to be a reaction to my dose of Vimpat :( I had a horrible rash and feeling worse and worse over the days. I was so drained and exhausted I spent most of yesterday fast asleep, I've been sporting a deathly shade of pale and getting around without feeling like I was going to fall over was near on impossible. My poor immune system was stuck in a yo-yo trying to fight with it. 

The doctor I saw was lovely, asked my history, took one look at me and told me I was suffering a reaction without a doubt. She took her time with me and after examining me and carefully talking through everything I found my self smiling with her. I'm lucky I was seen by a doctor sooner rather than later with an obvious symptom as it increases quickly and could have easily become toxic in little time. Interestingly she said because I have such a petite frame and build, I need to be considered more towards a large childs dose than an adults as I could easily overdose myself and need to take smaller steps when increasing or lowering doses of my meds. This has come up before when I was in hospital during the summer and had to take a childs dose of paracetamol and ibuprofen instead of an adults measurement. No wonder I feel so rubbish even after taking some simple painkillers!

This means I have to go back down to my safe dose that I was previously on. I have been told by the doctor to get in contact with my neurologist ASAP and explain what has happened and what to do next.  I'm at a loss of what to do now though as I'm on a high dose of Keppra and can go no higher on the Vimpat. Where to go from here is the question...

Now I just have to wait it out until my body gets rid of the extra Vimpat which should be by the end of the week. I just need time to focus on getting back to my regular self again, I can't wait to start feeling better!

The rash and the letter.

For the past few of days I've been breaking out in a weird bright red splodgy rash over the top half of my body about 15 minutes after taking my medication. Now obviously this isn't good but I feel perfectly fine which is odd. I rang my nurse to ask advice she said as I have been on the medication for a while it isn't necessarily the Lacosamide that is causing it but rather something underlying that is reacting with it, but as it's now at a very high dose I do need to be wary. She told me to keep taking my medication and just deal with the rash for now. I have to see my GP as soon as possible though to figure out what is going on. If I begin to feel unwell though I have to go to the hospital straight away, hopefully it won't come to that though. I'm sick of hospitals and medical stuff right now. I'm just hoping it doesn't disrupt my seizures for the worse. 

A letter arrived this morning to officially confirm that I have moved health boards and I am now under the neurologist I saw privately in December. The letter says I have been placed on the shortest waiting list and will hear from them shortly. I however know that it will take a long while before I see him again as in my appointment he said he expects it will take at least six months to see him again on the NHS.


Well it's definitely nap time for me so a snuggle under the duvet it is!