The long and short of it.

Yesterday I travelled up to North Wales to stay with some family. I was greeted off the train by my dad and youngest sister who immediately stood next to me so she could check how tall she was against me. It's been a long running tradition that she would grow taller than me at a young age. And sure enough yesterday we discovered that she is now officially taller than me by about a centimeter. Ahhhh dear.... I mean shes TWELVE!!! Anyway it's so good to be back :D I really do love this place.

After a long day travelling with a rather heavy suitcase and then cleaning the 4x4 and general countryside things an early night was definitely in order. This was the stunning view I had out of my bedroom window as I lay in bed...

We're off on a road trip up to Scotland today for the weekend for a family wedding and a little break away. I think it's safe to say we're all very excited! Finger's crossed it'll be seizure free!

Have a lovely weekend whatever you're up to :)

A moment worth sharing.

I'm so excited today. At 7am tomorrow morning I'm leaving to catch a train up to my childhood home for just over a week. I haven't been there for far too long and I simply cannot wait to see everyone :D Some of my family and I are also travelling up to Scotland on Friday for the weekend for one of my uncle's wedding. It's going to be lovely.

Anyway yesterday I had an appointment with the dentist. Now not to sound to cliche... I REALLY REALLY do not like the dentist. I never have, and the prospect of a seizure with metal objects in my mouth only makes it worse.  Seriously I was like a quivering wreck sitting in the lounge waiting to be seen. But something so lovely happened. So there's this waiting room with say 12ish people in it? Everyone was pretty much silent, maybe trying to settle their own nerves. Then amongst the silence came a little voice. A little girl started to read aloud from one of my favourite ever books. The Very Hungry Caterpillar. Now yes I am well aware that this is a children's book but I still love it all the same and reminds me of being a child myself. This little girl was just sitting there, next to who I assume was her mother and younger sister. And with seemingly no fear at all began to read the story of the Very Hungry Caterpillar out loud. Her little voice breaking the silence and relieving a little of the tension hanging around the room. That little girl made my day. Carefree, just wanting to prove she was a brilliant little reader to a room full of strangers. And she did just that.

I just love little moments like that. Absolutely adorable. Precious.

New meds finally here..

Well I finally had my prescription for my new medicine Lacosamide (tradename Vimpat) filled by the chemist today. I was supposed to start them last week but after handing in in my prescription and attempting to pick it up two times I was told that this particular medicine doesn't happen to be prescribed here very often, which did suprise me slightly but then that be something to do with the dose? Maybe? Meh.

The pharmacy told me that they had called around various stock houses in the UK and had located some up in Warrington which happens to be nearly 200 miles away... and it would be at least a few days before it will arrive at my local pharmacy. I hadn't heard anything from them almost a week on though..

This morning I went back to the pharmacy to hand over my prescription for my other medicine and thought I'd ask if they'd heard anything about the Lacosamide. The lady I spoke to was VERY surprised I still hadn't received the new meds even after a week. She said she'd give them a ring to find out what was going on. So there I was stood awkwardly amongst others silently waiting for their medicine when the lady got rather angry with whoever she was talking with on the phone ( a few odd looks were passed between us waiting) and two minutes later she returned. She said she was very sorry but the warehouse where the nearest batch was, had got the order wrong when the pharmacy had rang them a week ago and they were sending one of their drivers down in a van to deliver them as soon as possible. Bless that lady she must have said something right! That's nearly 400 miles there and back that someone then had to drive to get the Lacosamide to me. I couldn't thank her enough! Low and behold this afternoon I received a phone call from the pharmacist saying that my medicine had finally arrived and off I went to pick them up. I had a little consultation with the pharmacist who went through all the side effects etc slightly nerve wracking but hey...  so *THANK YOU* lovely lady :D

Anywho I've now got it right in front of me and I am about to start my dose at 25mg per day and will increase it gradually over the next month. It's back to that bitter sweet feeling again. Bitter in that it'll probably mean feeling awful for the next few weeks nicely timed for when I've got a wedding, visits to family and friends I haven't seen in far to long, and lots of long distance travelling amongst other things. Sweet in that of course hopefully it'll help with seizures!

Stay well X

Just a note..

Last night I really didn't sleep well. A lot of things were flying around in my brain and I spent until the early hours of this morning writing down anything and everything into one of my many notebooks. 

Without fail I always have a notebook within reach of my bed. Actually pretty much anywhere in the house I have so many! They are my little saviour sometimes. Something to scribble random thoughts that might crop up at any time. Anything from photography idea, to an appointment someone mentioned in passing I'd just remembered, to the little things that happen to be bothering me at the time. If ever you can't sleep for to much of a busy mind... try writing it down. It doesn't have to make sense and it could be the smallest of things but once it's down on paper it seems to make sleep come a little easier :) 

I don't suppose it helped that I watched the film "The Lovely Bones" that was on the TV just before trying to go to sleep. I'd never seen it before but have heard it mentioned many a time along with the book so I decided to watch it. I have to say it lived up to my expectations, an incredibly beautiful and hauntingly sad film.

There is one particular song in the film that I seriously cannot get out of my head. It's stunning.

X

Quiet day.

It's Saturday, I had nothing planned apart from a quick food shop in the morning. I'm still feeling pretty low and demotivated including upsettingly towards my photography which does not help matters of the mind. So I decided to spend the day indulging in pretty much nothing but flicking through my stash of photography magazines and books.

 Just some of my collection :)

The British Journal of Photography is one of the main magazines I read. I was delighted to find out that my two of my parents had bought me a years subscription for my birthday back in May.

Foam International Photography Magazine is my other absolute favourite. It's pretty hard to get a hold of over in the UK so when I can afford it I will definitely purchase a subscription :)

I think a little inspiration is starting to flow again. Thankfully.

Neuro appointment two days on.

I decided to leave it a couple of days before writing about my neurology appointment that I had on Tuesday simply because my head wasn't in the right place. Two days on though, if I'm honest, I still don't know what to make of it all.

My mum came with me to this one which was a massive help in terms of moral support and in trying to explain what has been going on in terms of seizures and episodes. I had a couple of smaller ones in front of her whilst I was staying there so that was useful for them to hear what happens from a witnesses point of view. I also happened to be sporting a nice cut and bruise on my forehead where a couple of days previous I'd had one of the weird drunk episodes, lost my balance and headbutted the side of a barn. That was pleasant..

I've now managed to catch two seizures on camera. One of a minor drunken feeling 'episode' which I'm still non the wiser as to what they are and one of a big convulsive seizure that I had whilst sleeping at night. I really do have a massive issue with the idea of watching myself have a seizure. Unless I REALLY REALLY have to I won't watch the video's. I think it's a control thing. Makes me shiver just to think about it, I prefer to be literally kept in the dark about the whole seeing what I look like during a seizure thing... I showed these to the Epilepsy nurse and the Neurologist they didn't really say much about the smaller seizure but when it came to the bigger one during my sleep they seemed to be rather baffled by it. The neurologist commented it was quite long... this bothers me slightly because the morning after that one I didn't feel particularly achy and tired compared to some occasions which makes me wonder how long some of the others are. Another thing she said was "it's unusual"... and left it at that. Unusual... WHAT DOES THAT MEAN?!? That one word is probably what's bothering me the most. I can't get my head around it. 

After my appointment I was sent straight to other parts of the hospital for blood tests and an ECG to check my heart rhythm. These are just usual tests that I will have to get used too. The ECG in particular is important in this case as I am about to start taking a new medicine which can disrupt a normal heart rhythm. The new medicine is call Lacosamide, another Anti Epileptic Drug (AED) that I will be adding to my current 2000mg's per day of Keppra. I start it tomorrow at a low dose of 25mg per day for the first week and will increase it over a month to 400mg per day I have no idea how I might feel on it so I'll just have to see. Hopefully it'll do nothing but lessen my seizures. I still have no idea what these newer episodes of unresponsiveness, talking no sense and feeling drunk are. I did talk to a lady who told me that what I explained sounds almost exactly how her husband acts and he has had them diagnosed as Complex Partial Seizures.  This wasn't mentioned in my appointment though, no names for anything where mentioned actually. The Lacosamide is supposed to be used for partial seizures so I'm assuming this is what my neuro has in mind...

All in all I'm more baffled now than when I went in but these things take time. A long time. 

Stay well!

Urgent Neuro Appointment..

It's a beautiful sunny day here on my mum's farm on the beautiful South Devon coast. Everybody here is pottering around and the atmosphere is generally a very relaxed one. As much I love being here and it's brilliant to spend some time with my family I have a little something playing my mind.... While on the train down to here yesterday I had a phone call from my specialist nurse which I was expecting as I had spoken to her on Tuesday. Except instead of her calling to say that she had spoken with my neurologist and I simply need to increase my medicine a wait for my next appointment, she instead told me that my neuro wanted me to attend an appointment as soon as possible and to make sure I go along to the clinic on Tuesday coming up. She said that she didn't want to go into to much detail over the phone but they are worried about my current situation and are not happy to leave it any longer. To say I was shocked is a massive understatement! The waiting list for appointments is MONTHS!! I am yet to receive my EEG results which worries me slightly too.. although she didn't mention anything about it on the phone. 

Needless to say I'm worried but I will try to relax a bit and enjoy my time away and let myself be looked after by my family for a while :) Oh good news though my mum will be able to come along to this appointment with me which means I'll won't be quite so nervous and hopefully she will be able to remember a whole lot more of what will be discussed than what I can!!

X

Seizure on camera.

So yesterday was a pretty damn seizurey day. I was exhausted, spent most of the day lying in bed as my balance was utterly rubbish and despite being alone the entire time I new I was having plenty of minor seizures.

I'm usually told by other people when I have smaller seizures known as absences as I am completely unaware that they are happening. Apparently I literally stop everything that I;m doing whether I'm mid sentence or walking along etc and then up to a 10 seconds later I simply carry on where I left off with absolutely no recollection of the event.

Recently though (in the last few months) I have been experiencing episodes where I totally loose sense of where I am I become totally unresponsive to everything and everyone around me for up to 20 seconds, I still move but in a confused way then after the initial 20 seconds ish I start to regain some awareness and start to feel like I'm incredibly drunk and loose my balance, stumble and sometimes fall. If someone is there with me and they are trying to talk to me I start to reply but don't make any sense. Sometimes I talk about the things I see around me or sometimes complete gibberish. Although to me I am making complete sense in what I am trying to say. These episodes are different from my normal absences as after the initial unresponsiveness as I start to regain my awareness I can feel that there is something wrong. I know that I can't judge where things like the floor are properly, which feels VERY strange as if I'm honest very frightening because I know that I am aware that I have no control over what I am doing. People say I look, move and walk like I'm drunk. After about a minute or so I am totally back in the normal world. I can move and talk coherently. Yeahhh it's pretty hard to explain...

So yesterday I new that I was having episode after episode. My skin was a shade of grey and had massive bags under my eyes from being so exhausted. In the evening when they were starting to ease off and I could concentrate better to use the internet and watch TV so I decided to set my web cam on recording me. In just over an hour after I set up the camera I had another episode. I then re-watched the last part of the recording and there it was! This is the first time I have been able to watch myself experience any form of seizure, and I have got to say IT IS FREAKY!!!!!!!!

My specialist rang me today to discuss these newer 'episodes' (I'm calling them episodes simply because they haven't been seen and diagnosed by my neuro as seizures as of yet) after I had described these recent goings on she said that all the local clinics have a massive back log but she will try to get me in to be seen as soon as she could. This worries me slightly... Anywho tomorrow morning they are going to discuss my case and decide whats best to do next. She told me this will probably either be another increase in my current medication so anything higher than 2000mg per day of Keppra OR  they will add another medicine to my daily routine. Either way I will find out through a phone call by 2pm tomorrow. I'm not looking forward to finding out as any changes in medicine always have bad consequences for a good two weeks :( but hey if it's one step closer to gaining control over seizures then it's definiftely a good thing!

IN OTHER NEWS...

I'm off to my mum's tomorrow for a week or so which I am very happy and relieved about! A nice bit of time to relax and see family and of course hang out on the farm with animals! I always find that theraputic :) OH and my hair is being chopped off tomorrow :D I was trying to grow it long again but it's gotten so thin recently that I've decided to have cut quite short again and then dye it to make myself at least look a bit healthier... excited! 

X

Impossible hangover

Urgh I was rather poorly last night and through yesterday :( About 7 pm I suddenly got a horrible headache. So I drank lots of water and took some painkillers but it didn't budge. Strangely for once I wasn't particularly tired so I watched a bit of TV for a while but found that I kept missing chunks of what was going on which I'm going to assume means I was having plenty of Absences. Eventually I just put myself to bed and bang I was gone. This morning I woke up with the headache gone but feeling REALLY tired and aching muscles :( not a good sign. A Tonic-Clonic seizure during my sleep is very likely. Brilliant.

Anyway onwards and upwards despite being really tired I had plenty of tasks to get through. Including taking one rather miserable hamster to the vet. I think it's safe to say she won't be liking me very much for a few days. I noticed my balance was off when I walked down the stairs and the walk to and from the vet was a bit dodgy. By the time I got home I had a headache again my vision was becoming blurry and my balance was awful. I HAD to ring a few different people about various matters I'm trying to sort out but being so tired it was pretty hard to concentrate who knows if I made much sense. No one seemed to notice though, well at least they didn't say anything...

Ahh well I spent the afternoon fast asleep and can't say I feel much better now still aching, and wobbly :( It's like a really long hangover,  not very pleasant.

It's just typical I wanted to go shoe shopping today as well for a wedding I've got coming up booooo! Hopefully tomorrow I'll feel little better and I can go off and find some shoes that will hopefully result in me appearing at least a little bit taller than my 12 year old sister in front of a whole load of my family. And yes I did say 12... ridiculous isn't it. I'm ten years older and yet she is still taller than me!! 

Time to stare at the ceiling some more for now though. X

MRI Results

This is the news I have been waiting for... and it's probably the best news I will recieve in a very long while! Enough said. :D

Back to life, Back to reality

Aaaaaaaand I'm back! 

So yes I am back in Wales after going away for over a week to Henley on Thames. I went because I needed some pennies and it was the week of the Henley Royal Regatta. A world famous rowing event. And the place I used to work just so happens to be located overlooking the finishing line. Which means for them that this event is the biggest on the calender which inturn means jobs for us not so rich and famous types! Although the regatta only takes place over five days I went for over a week as Henley is where I spent a lot of time growing up. So I had people to see and places to visit and my goodness did it bring back some memories :)

My waitressing job at Phyllis Court was my first ever 'proper' job. I started when I had just turned 16 literally sitting in a marquee for five days slicing up fruit for the Pimms and clearing tables amongst the thousands of people attending the Regatta. 2005 gosh it seems so long ago! Anyway after I finished my weeks work at the club, a few weeks later I had a phone call asking if I would be interested in further work... and that was that. From then on I worked every hour I could amongst studying at college which quite frankly meant I didn't really have much of a life... but I did have plenty of money which of course meant I could go travelling and and pay for my own driving lessons and car etc. It was the prefect job for that time of my life. With brilliant people :) Anywho it was lovely to go back for the week and see everyone and catch up on life etc and of course there is always the famous after-regatta staff party. All I will say is it was EPIC as usual!

The bad news is I had a big seizure that involved me mashing my elbow and right side into what I'm assuming was my suitcase and some shoes etc that were on the floor. Said elbow and side now have some rather lovely looking scrapes and bruises which infortunately I had to walk around with wearing a short sleeved shirt on some busy shifts of work. Not Fun. But whilst it raised a lot of questioning from people I had last seen a year ago when Epilepsy didn't exist in my life, it was ok to talk about it. It just strengthens the fact that these things happen and no shame of guilt should come from it at all :) So it was just a matter of questions asked, honest answers given, a few interesting discussion and then carry on working. I love that it's ok.There of course where a few things that I couldn't do that I used to. Little things that you wouldn't usually bat and eyelid at like serving tea during the afternoon tea sessions... yeah scalding hot water and seizures DO NOT mix!!! Also where I would have usually worked for 16 hours shifts everyday for the whole thing this time I only did the 8 hour day shifts. There is no way I could have worked the hours I used too energy wise. Plus with working and little sleep... thats just asking for E. related trouble! But I explained my reasons for certain adjustments and all was fine. OHHH and they gave me my usual supervisory role which basically means your incharge of a 'section' looking after a certain number of tables and staff. Usually it's stressful but fine but of course this year I had the added memory problems and I really didnt think I would be able to make a good job of it. But as far as I'm aware everything went smoothly so WOOOO!

So, it was busy, hectic, mad, rushed, hot, heavy, posh, rude and many many more things but at the end of the day everything was a success and we all had a good laugh along the way :D plus of course there's always the pay cheque to look forward too!  

I met up with friends and went for walks, picnics, dinner out, general little catch ups, a day out in Windsor and plenty more :D  It was a nice to spend some time where I spent my teenage years growing up. Strange though to walk around the town knowing I don't and will never live there anymore.....But I know it's always there to visit and so on... So until next time Henley!

Now I'm back home to an empty house for a few months which will take some getting used to. I have my little life savers around and about on the other end of a the phone should anything too drastic happen. What I would do without some people is beyond me!  X