Coastal walks and log fires

I got back from some time in Devon on Monday. I've been a bit ill, tired and just plain busy since then though so now I've got a spare five minutes I thought I'd pop up a few photo's :) 

It was so good to walk along the beautiful coastline in the sunshine chatting away to my mum about anything and everything during the morning then sitting trying to get some university work done in front of the log fire with the cats during the evening.

My favourite part though was walking down to one of my mums friends little farm LITERALLY right next to the sea one morning. The weather was incredible and the tide was out so my mum gave her friend a riding lesson on the sand. It was just perfect. 

Emergency "rescue" meds

I have been prescribed Clobazam tablets as a rescue medicine.  

This morning at about 4.30AM was the first time I've had to use the medicine though thankfully... and get this... IT WORKED!!! 

I woke myself up this morning with a large Complex Partial seizure much like one I had about a week ago. All I remember is 'coming out of it' and sitting in bed completely disorientated and confused, it's sounds silly now but I couldn't figure out why I was in bed. Anyway I calmed down and tried to sleep again but kept feeling dizzy and getting strange sensations in my fingers and head then wind up finding myself sitting in bed wondering what had happened again. I managed to take the Clobazam tablet (which was ready  waiting for a moment like this in my bedside draw) and well, I can't say how much time it took but I don't remember waking up again until my alarm went off. I did have to sleep an extra hour to avoid being a complete zombie for the day but surprisingly when my alarm went off the second time an hour later I was pretty refreshed. I had a study tutorial later in the morning and I was quite cognitively slow. It's nearly eight in the evening now and I am about ready for bed tiredness wise but all in all a pretty good experience. I have to take it again tomorrow night and the following to help stop any falling back into 'seizure mode' I call it, then i can come back off it again and done. 

Let me explain why I needed it in the first place...

There are days when I have numerous partial seizures. I have plenty a day as it is but there are certain times where I get stuck in this continual chain of seizures. They are singular seizures, sometimes they may have an hour between and some may have only seconds before going into another one. These days are awful. Sometimes I notice I am having lots through simple things like missing bits of a program I am watching etc. One of the biggest give away's though is the massive need for sleep and even walking down the stairs wipes me out and my balance becomes pretty much non existent so I end up having to lie in bed again. Annoying.

So now if I have a day where I experience lots of seizures within a few hours I can take these meds in an attempt to bring the seizures to a halt. They in effect slow the 'excitable' sparks and connections within the brain down to prevent seizures. There is a downside of course... they literally slow the brain down and when my brain slows down, I slow down. But that's a million times better than seizure after seizure believe me!!!

I really can't complain :)

Unexpected smile :)

Some not so positive posts recently which is a bit rubbish but what can you do. 

I was feeling a little sorry for myself this morning, it's pouring with rain outside and I have a ton of work to do with absolutely no motivation to do it. Above all I'm really missing people at the moment. *Sigh*

Anyway while I was busy moping around my room I came across this cute little face that my housemate made. I love how the tiniest of things can lift your mood :) (Please excuse the fact I REALLY need to get some dusting done...)

X

Cryptogenic Localisation Related Epilepsy

I received my clinic letter from the hospital through the post. As far as I was aware I had been diagnosed with idiopathic generalised epilepsy. Which meant I had epilepsy with generalised seizures which involved various areas of my brain at the same time but there was no known cause. To my surprise they now have my diagnosis down as likely cryptogenic localisation related epilepsy. Which I'm pretty sure means that they think there is a cause for my seizures but they don't know what that cause is.

I'm not really sure what to make of it to be honest. It would be nice to talk to someone face to face about it who can answer all the questions buzzing around in my head. Especially now they seem to think there might be a cause... what made them decide that?? They've seen videos, listened to witness accounts and had my trying to explain what it's like, so I guess they found something within all that.

My main worry though - if there is a cause and they don't know what it is, how are they supposed to treat it? I guess it's just a matter of luck in finding the right combination of medicines.

Ahh well best carry on carrying on.

Seizure activity.

Ok so my previous post was my trying to explain what I had experienced whilst thinking I'd had a nightmare. Well my housemate that witnessed the majority of my behaviour during that 'episode' mentioned it to her friend back home who was a nurse and it turns out it may well have been a seizure. Apparently that kind of behaviour is common for someone suffering with Complex Partials. 

I've had smaller ones where I get confused and it is VERY frustrating not being able to figure the simplest of things out there and then especially when you think you're talking sense to someone but they're looking at you with a "I really don't understand what you're saying..." look. But I've never had one so big before (that I know of)... Maybe that would explain the whole massive headache and pins & needles sensations in my fingers all that evening. 

Another something to mention to the neuro with said friend and housemate in tow! 

Trick of the mind?

I had what I think was a nightmare last night... I remember going to bed early (even for me) as I'd had a banging headache and some strange sensations going on since I'd got back from uni at 5..ish including pins and needles in my fingers now THAT was unnerving! I assume I was 'dreaming' for most of it but can remember what happened... very strange. I'll try and explain. (probably best to mention we do actually have rats in the walls at the moment... Ew.)

So I know I was asleep, and can only assume I was dreaming about whatever, then I either dreamt I heard the rats in the ceiling of my bedroom OR I did actually hear the rats in the ceiling which caused me to include them in my dream and subconsciously assume they had suddenly got through the wall and into my wardrobe and could find their way out into my room. So I jumped out of bed (literally) but was still asleep and tried to get to my wardrobe to close the door. I then tripped over some books piled on the floor at the end of my bed.

Then I heard my housemate say "Jade?" from outside my room which I think must have half snapped me out of it... then she came in (assuming I was having a seizure with all the crashing and banging) and I woke up some more. Then when I was highly confused as to why I was standing in the middle my room she asked what was wrong. I REALLY couldn't get my words out I remember really struggling to explain something about having to close my wardrobe in case rats got into my room or something along those lines... all while simultaneously trying to work out was going on and pointing as if my life depended on it, at my wardrobe...  Just the look one Eira's face of unbelievable confusion was amazing!

Yeah weird one... strange being able to remember the most of it even though I was asleep most of the time?... Ah well made for some giggles! 

Slept perfectly well after that, which is always nice. 

Catch up + Rats!

Long time no post.

Life's been busy, especially university things... and more sleeping. I finally managed to kick a headache I had for the best part of a week the other day. The RELIEF! That really got me down for a while in a sluggish and just generally rubbish way. But now I feel good and surprisingly well for a change :D I even feel like going for a night out sometime soon. (That's near enough a miracle for me nowadays...) 

Oh and here's a way to know you're living in a student house. Rats... Yep we have rats. It's horrible, you can hear them at all time of the day and especially at night when the house is quiet skittering around in the walls. I've seen one to in the back porch. Not the most pleasant of things to be putting a bin out and be confronted with a rat. But then it's not like I've never seen one before. Growing up in the country and spending a lot of time on working farms kind of makes you used to those kind of things. Today the council came around to visit all the houses in the area to check them all out, and out of all the houses, typically, it was our drainage pipes that were the problem. One of them has a hole in and that's how they've gotten in. Next step get the landlord to fix them! So I'm currently sitting in my room in a house wreaking of smoke due to the smoke bomb they've put down one of the drains, listening to the critters running around in the wall space above my bedroom. Lovely.

There's family stresses too, but for now they've eased a little and I can focus more on university work of the time being :)

x 

Package

Today I received a package in the post and it contained one of the my most favourite things, a brand new arty book :)

Nigel Shafran is fast becoming on of my favourite photographers. There is something within his work that speaks volumes to me and makes me want to photograph and experiment myself. That 'something' is what I want to explore within my dissertation along with other artists :) Just flicking through this book allows motivations to seep through asking me to document the simplicity of domestic space. 

Beautiful photography. 

Sleepy times.

I've just noticed that all my recent posts have absolutely no pictures in them. I have to fix this. 

Just not at the moment. For the moment all I seem to be doing is sleeping, snoozing and napping. I have so much university to work to crack on with and I'm really excited to do so. It just requires energy, even walking up to the university for the odd tutorial is hard work. Take the last couple of days for example... Tuesday night I had an early night and slept for about 11 hours but despite that fell asleep again during the afternoon only to go back to bed last night at 8.30PM and slept another 11.5 hours!!! That's a lot of sleep. Even today after sleeping all that time I'm still seriously tired and have been fighting falling asleep in case I missed the tutorial I had this afternoon.  Saying that it's not exactly been a quiet week, or as if I haven't managed to get anything done it's just other things have been getting in the way. Life stuff you know? The kind of stuff that means travelling here, there and everywhere and STRESS. 

Oh and there is this damn HEADACHE that will not leave me alone!!! It's like this thick cloud has got stuck in my head.. probably one of the reasons I'm so tired. I'm just hoping it's not a big seizure brewing. 

Anyway instead of whinging and writing this I really should be writing some artist case studies for my dissertation research... again interesting stuff but it involves reading in depth not something I'm particularly good at at the moment. 

Yawn. 

One date I will never forget.

04.11.2010 

Exactly one year yesterday I was diagnosed with Epilepsy. I can't believe how much my life has changed. I often think back to that appointment, I remember it like it was yesterday. But the thing I think about the most is the way I reacted, or maybe I should say, the way I didn't react. I honestly knew nothing about Epilepsy or seizures. If I knew back then what I know now I would have reacted completely differently.

The tests, the hospital trips, the numerous appointments, the agonising waits for test results, the tears, the laughs, the bonds, the arguments, the relationships, the exhaustion, the travels, the friendships, and the most important hugs in the world are just the tip of the iceberg that has been this past year. But perhaps most critically it is the emotions that I and anyone close to me have had to go through since that day. I am extremely thankful and incredibly lucky to have these people in my life. I literally do not know where I would be now if it weren't for them. 

I wish I could line them all up and thank everyone personally right this moment and give them each the tightest of hugs. But unfortunately I can't, but I'm hoping that they know who they are and know just how much I appreciate and love them :) 

X 

Neurology Appointment

I had a neurology appointment yesterday :)

Both my nurse and my consultant were there and my housemate came long with me for some much needed support and to help explain what been going on seizure wise. Obviously she sees a lot more than I do of what happens as most of the time I'm completely unaware or unconscious during. We talk about it all the time (kind of a hard thing to ignore...) and it real helps just talking about it freely. What surprised me though was how many questions she came out with during the appointment and it was strange to sit and listen to her talking with my doctor and nurse about it all so seriously. Strange I think, because at home we talk about it in a mostly light mood, not in a way that makes light of a very serious situation but more because having a sense of humour about the whole thing is my way of dealing with it. To hear her go into such detail and highlighting certain concerns was both touching and nerve wrecking at the same time I can't help but feel guilty that I have to inflict this whole thing on other people is a horrible feeling. 

We all talked about how stress brings on more seizures which I am more than sure is a trigger for many people. I seizure diary really highlights stress and anxiety triggering a big increase in seizures especially absences. I was told, yes TOLD by all three of them that I NEED to stop trying to help with other peoples problems so much and focus on my own problems more. That's definitely easier said than done though. I don't really know what to make of that. No one can help what crops up in life. It was definitely a surprise to hear Eira say it to me in front of the doctor and nurse deadly seriously. 

Interestingly though I asked about why I was getting so many nightmares. Apparently they're not a side effect of any of the medicine I am on... my neurologist then went on to say that she had been observing me throughout the appointment and can sense that I was very anxious. I'm not going to deny that I was, I mean we were discussing extremely vulnerable aspects of my life... and recent life stuff hasn't helped with the whole stress/anxiety thing. It shocked me though for someone to tell me that even after only sitting in front of her for about 10 minutes that I come across as anxious. I thought I hid it pretty well. The nightmares are almost certainly a result of subconscious anxiety :( 

They also discussed my weight with me. I have lost A LOT especially since starting on the Vimpat. I'm not  underweight nor am I complaining.. it's just very unusual for me to loose weight especially without changing my diet or lifestyle. Nothing really came about from it she just asked if I was eating... which of course I do? and believe me I can eat a lot! Just have to keep an eye on it for now :)

So all in all it was a good appointment a lot was discussed and having a friend there that could really tell them in detail what happens on a day to day basis was incredibly helpful :) and much appreciated from me! I go back for another appointment in 3 months time :) hopefully things both life and seizure wise will have calmed down by then! 

Bad news from home.

I haven't been on here in a little while. Life went crazy last/this week. While I was away at my dad's I received some devastating news from my mum. I won't go into it on here, but I can say that it has truly up heaved their life completely. My mother is an particularly strong person and speaking with her over the phone one of the most awful things was to hear her sounding utterly lost and defeated. 

Life is going to be screwed up for a while. I'm taking a little bit of leave from university for a while to go and stay with them and help out in whatever way I can. I have a meeting with my main tutor on Thursday to inform him as to what is going on and tell them that I'm not disappearing of the face of the earth and I will carry on with my uni work as much as I can. But some things are just more important at times as I'm sure they will understand :)

I leave on Friday, I would have gone down a lot earlier but I have so many things going on here as well. For example, Neurology appointment, doctors appointment (both of which take forever to get so I can't not attend them), study support tutorial, dissertation tutorial, project tutorial (again all very important as I will be missing university stuff) and that's not to mention trying to sort out my many medicine prescriptions I need to take in and collect on various days. So living life as usual as I can until then... including blogging.. it's a brilliant way to vent!

Basically life could be a lot kinder at the moment but as much as it's really hard to agree sometimes... it can always be worse!