Merry Christmas

Merry Christmas, have a wonderful, healthy, happy and exciting time over the next few days. I hope you are all where you want to be and spending time with people you love. 

I'm currently snuggled on the sofa with the cats and a sneaky glass of Baileys :) 

Love love

xXx

Festivities

Christmas is in less than a week! My housemates are leaving for home one by one. I finally finished my Christmas shopping yesterday and just need to wrap some remaining presents. I'm feeling rather rough today and it looks like I'll be spending the evening in bed so I figured I'd write about recent happenings.

My Christmas and New Year travelling around Britain to see family starts tomorrow so I won't be on here much for a couple of weeks I shouldn't think. I just picked up my bulk load of various medications to last me over the holiday period there is quite the stash sitting ready to be packed into my suitcase!

We had a house Christmas party on Saturday which was really fun! A scrumptious dinner was prepared and demolished easily by us all :) it was so good! We played Secret Santa giving a budget to each other of 5 pounds and only Asda to shop in... all at the same time.. it was hilarious trying to run away from each other in the ails in case we saw what someone else was buying. We all managed it though and gave each other some lovely, funny and gratefully received gifts. After dinner was the of course the obligatory game of Charades again a massive amount of fun, the kind where you laugh so hard you can't breathe! 

Right I'm in desperate need of a sleep, walking a long way in the pouring rain takes it out of you! x 

Private neurology consultation.

First and foremost... the hospital was like a 5 star hotel!! It was so clean and inviting and the staff where happy and smiling, when we were in the waiting area it felt more like we were waiting to have our room keys handed to us than waiting to see a consultant. 

We (my mum and I) went in as if I were a fresh new patient and went over everything we could think of at the time. The neurologist seemed very nice and I felt very at ease talking to him and discussing everything. A lot of the time I tend to feel somewhat intimidated when it comes to medical appointments mostly through faults of my own though. However I feel like I could handle an appointment with him by myself and not feel stressed that I'm taking to much time to explain everything or having to repeat information that I'm being told just to make sure I understand. Most importantly, I feel, is that he seemed interested, he listened carefully and asked plenty of questions. When I showed him photographs and videos he looked at them time and time again replaying and pointing at certain things asking me about them as I went along. Obviously I'm clueless while seizures are happening but he wanted to know what people had said and if they had mentioned I do the things he was watching in the videos at different times and things. 

When I explained that I've lost some vision in my left eye which had been picked up by the hospital and opticians on separate occasions since August yet nothing had been done he seemed quite shocked. He asked if my doctor knew to which I told him I'd taken the opticians results there myself and handed them in and seen him in an appointment after that and asked about it, but still nothing further has been said about it. My neuro then declared he would send me for an ophthalmology appointment at the hospital (NHS thankfully money wise) then discuss the results and further tests/treatment if any with me at a later date. This then lead onto my constant headache that is getting me further and further down at the moment. He couldn't really say all that much about it though apart from he wants to review all of my past scans and see where to go from there when I speak to him next. 

The immediate plan is to increase my medication Lacosamide (Vimpat) from 300 mgs per day up to the maximum dose of 400 mgs per day. To go alongside my Keppra which will remain at 2500 mgs per day. If this increase doesn't work then I will come off Lacosamide altogether and try another medicine. He did mention one but I can't quite remember which one... Lamotragine rings a bell though. I am to keep taking Clobazam as a rescue medicine as it well and truly does the trick when I need it. 

My Video Telemetry results still haven't come through so he said that as soon as he has them he will examine them then write to me with the (if any) findings. These cannot come soon enough for me, they could tell a crucial story and not knowing is driving me crazy. 

I have now been placed on the waiting list to see him on the NHS he warned me that this may take some time (believe me I'm used to it) in the meanwhile he is not taking me off my current neurologists list as I am well overdue a review with her I should go and see her if an appointment becomes available in the meantime. It just so happens that they are both in regular contact with one another as colleagues and he will be discussing my case with her so that she is in the know that I have been seen by him. Long term wise though I am know on his list which means I will be transferring my care over to him here in the hospital close to where I live (literally 2 minutes down the road) so it will be much easier to get to an appointment. 

I didn't realise just how much I was longing to know that someone is looking over my case and trying to help me. The relief is immense knowing that a fresh pair of eyes scanning over my notes coming up with viewpoints and knowing that my file isn't just sat waiting on a shelf gathering dust. I'm still going over everything in my head at night, there was a lot to take in and it's taking me some time to think through all the information.

Everything seems to be on the move again now thankfully. Back to the NHS now though so we'll just see how long it takes further tests, results and appointments come through. I'm not holding my breath in the meantime... I'd be rather blue! 

Friends and neurologists.

Tonight I'm meeting my new neurologist in a private hospital. My notes, video's and witness accounts are almost ready to go. I went to collect my notes that my GP prepared for me and half my information isn't included! Good job I make copies of everything I receive before I take them over to them I'll just show them myself. Not impressed I have to say. The nerves are kicking in but I'll have my mum with me and we are going to get something sorted, we're not leaving the hospital without a plan of action that's for sure. 

Anyway a friend of mine I lived with at university came down from North Wales to visit for a couple of days on Sunday. It was so good to see her. We talked constantly about everything life wise, explored some of Cardiff and went shopping (of course) along with treating ourselves to a couple of meals out in restaurants :) Had some amazingly tasty food! The BEST news is, she may well be moving down here permanently very soon :D I really hope it all plans out and we end up living together again, that would be amazing!! 

Hopefully these little walks exploring the city will become a regular thing... 

Big decision - Private consultation.

My mum and I have come to make a big (and expensive) decision. I am going to have a private consultation with a new neurologist. 

With everything that has been going on and getting absolutely nowhere with being able to see my current neurologist on the NHS, something inside finally snapped and after a few phone calls between my mum and I the decision was made. After receiving some emails from my mum following our discussion she went on to research various neurologists and emailed me with some choices. Yesterday morning I asked a few people their opinions on a couple of them and any experiences they had and I received a very positive reply to one particular neurologist. Within minutes I made a phone call to the private hospital and booked an appointment. I've never had any dealings with the private medical sector and was expecting them to offer me an appointment early next year... I'm booked in for a consultation on Tuesday evening. THIS Tuesday!!

It would be nice to maybe get a bit closer to some answers. My results from my video telemetry aren't ready yet but I can't wait any longer. If I put the telemetry to one side, maybe this doctor might be able to help me find out what is causing my constant headache or the worrying change in my field of vision that the optician and hospital picked up on a few different occasions yet nothing had been done about either. Each time something like this has thrown a complication into the mix all I've heard is "you'll need to see your neurologist about that" and placed on more medication with increase after increase and hospital stay after hospital stay... It's scary to be left on the side lines when something obviously isn't quite right. I might be able to come off some of the painkillers I'm on, or change something in order to kick start a reaction, or maybe nothing will change. Who knows. 

Tomorrow I will be spending the day gathering all my paperwork ready, be it old clinic letters, videos, witness accounts, or anything else I can find and think to talk about. My GP has prepared a referral letter and produced copies of all my recent test results ready for me to pick up on Monday to take with me. My mum is travelling down to meet me during the afternoon and then we will be going to the appointment together.

It's a strange feeling that maybe, just maybe, I might be about to progress further with my condition be it positively or negatively at least I can learn to deal with it rather than sitting and waiting constantly. Currently I feel like my life is on hold. I'm not really sure what to expect to be honest... I'm trying not to allow myself to get too hopeful though, but even if it's just another person looking through my case and offering up some suggestions and opinions then it will be worth it. 

Weekend celebrations!

We had such a nice weekend here in the house :) It was one of our housemates Sameena's 30th birthday celebrations which of course meant a house full of people dancing the night away!! 

HAPPY BIRTHDAY SAMEENA!!! X 

Umm so this very rare occasion is me dancing bollywood style in the middle of a group of people... I'm not entirely sure what happened.. one minute I was sat talking with people and the next I was up dancing... IT WAS SO MUCH FUN!!! I'm going to have to get practising on some moves for next time hehe! 

There was plenty of music, dancing, laughing and food! 

The morning after brunch, scrumptious food for a tired bunch :)

I haven't laughed so much in a while and to feel so well and happy felt amazing, bring on the next gathering :) 

It really was a lovely couple of days with a house full of people really enjoying themselves, and everyone had a brilliant time, what more could you ask for! 

xx

Weekend Perks

12 hours sleep and I feel bright as a button!!

My housemates are coming be back for the weekend very soon (15 minutes and counting) in fact they just rang to say they're stopping at this place called Magic Wrap on the way and will be picking up some yummy food! YAY they are soooo delicious! The weekend is looking up and we have a big party here at the house on Saturday night for a birthday :) SO excited! 

Right that's enough exclamation marks for now... oh go on then just a few more... the weekend's awaiting!!!!

Just keep swimming.

My body feels heavy so I think I might have over done it the past few days. My minds been in a bit of a stress with one thing and another and to fight it off I tend to make myself busy. 

I think maybe I'm a little bit addicted to swimming... If I don't get in the pool every couple/few days I start to feel really agitated. That then has it's own downside in that to feel better again I go swimming but it saps my energy resulting in over tiredness and seizures. I swam 50 lengths today and my body is screaming at me to go to sleep but it's not even half past eight in the evening. So even right now I'm fighting it, and instead of putting myself to bed I'm thinking of ways to get out and about tomorrow. If I'm not in the pool then I'm finding excuses to walk for miles to do something instead of catching a bus. Tomorrow, I need to pop over to where I volunteer and pick up some shifts. It's a 45 minute brisk walk each way, I could get the bus, but I won't, I'll walk there no matter how tired I am. 

Exercise is good and all and I do thoroughly enjoy it... In a past life I wouldn't think twice, sunny winter day, nice walk across a huge park, done. It's far to easy to forget though that even if for some people what I get up to would be nothing, for me it's really draining. My energy gets used up so fast it's hard to pace myself. I feel guilty when I have to stop and rest, I feel lazy when I spend what seems like forever lying down and reading, yet I just can't convince myself that I need time to reboot!

BUT always look on the bright side and, even though I do feel lazy and what not, it does mean I make myself sit back and read funny books like Miranda Harts' Is it just me? I LOVE LOVE LOVE her and her book. My friend bought it for me while I was in hospital and I've just got round to reading it properly. It's BRILLIANT. 

Anyway rant over, maybe I'll make some tea and carry on reading said amazingly funny book and then sleep. x 

The seizure, the faint and the uncontrollable shakes..

I had a tonic-clonic seizure yesterday morning. I managed to hit both the front and back of my head in the process, I assume I bounced from one of my bookcases to a storage chest I have on the floor. So that was a brilliant start to the weekend... and it didn't stop there! 

All I remember is putting my moisturiser bottle back on the shelf and boom next thing I know I'm lying the floor. After I'd fully gained consciousness again I picked myself up and wobbled over to Amrit's  room and told her what had happened and that I'd banged my head. I really didn't want to be alone at that point. For some strange reason I was carrying a towel with me... (I must have been so confused, no idea why I had it with me...) I lay with her for a while and chatted then Heather came up to see what all the fuss was about. I went back to bed for a while but I started feeling very odd, it's like a sort of fizzy feeling all over your body similar to pin and needles but more subtle. I don't often get warning but when I do the fizzing usually a sign of another seizure so I took some rescue meds to try and stop it from happening and luckily with worked. Afterwards most of the day was spent snoozing on Heathers bed so she could keep an eye on me while she did some uni work. I felt pretty fuzzy with the various drugs floating around my system so a cosy bed and seizure pillow was probably the safest place to be!

Later on in the day I felt better and three of us were in the bathroom trying to fix the shower hose (as you do) I was happily holding back the shower curtain while they were fiddling with the tap when I suddenly felt very light headed. I knew I was about to drop to the floor so I just blurted out I was going to pass out and Heather turned around and said yes I was (apparently she could tell by the look and colour of my face) and grabbed me. Thankfully with her help I got to the floor without hitting anything. Fainting feels so strange! My eyes went all funny, sort of blurred and spotty vision, I couldn't hear them for a tiny while then I could hear hissing. After lying there for a while I felt better again got up and ate a little sandwich made for me then repeated the morning in terms of snoozing away in my housemates bed. By the time it was evening I felt a million times better and went out for a birthday meal. 

At 6am this morning though I woke up feeling TERRIBLE and shaking so much I could not keep still. It was as if I was stood in the middle of a snow storm in summer clothing, yet I was neither to hot nor to cold. Very strange, I also felt unbelievably sick. I managed to get to the bathroom to get some water and bring it back but I was all over the place and practically threw myself back on my bed to lie down. I text my Heather to tell her I felt awful, I wasn't expecting her to be awake, it was more of a - this happened at this time so when you wake up can you come and check on me - kind of text. But luckily she happened to be awake when I sent it and she came upstairs and into my room to see me. I told her I felt awful and how much I was shaking which she could plainly see! After fetching a towel in case I was sick (lovely) and helping me to drink some more water she lay down next to me and we watched a TV show to try and distract me from feeling horrible as I was REALLY restless too, I could barely control my self. Eventually we both fell asleep and woke up again at 11!! That's the longest I've slept in for ages! The rest of today was spent resting although we took a trip to Asda to do a little bit of food shopping... I such a craving for sugar I ended up buying a few items of the very unhealthy kind that would never usually end up in my shopping basket but I figure I deserve it, at least that's what I'm telling myself.. 

All in all apart from a stiff neck and bruises settling in I'm not in to bad a shape :) Just need to catch up on some sleep (I fell asleep whilst watching a film earlier) but that just requires a early night. Hopefully I won't have any rude awakening of the Epilepsy kind! 

House of Lords debate - Neurological and Epilepsy services.

Last night a debate discussing improvements of health and social care services for people with Epilepsy was held in the UK House of Lords. 

The main subject of the debate was as following "To ask Her Majesty’s Government what progress has been made in improving neurological services, and in particular the provision of epilepsy services, in the United Kingdom" (Epilepsy Action website) - www.epilepsy.org.uk

I watched the whole thing with much interest. In my opinion some very good arguments, questions, facts and figures where opened up for debate. It will interesting to see what emerges from this debate however as clearly stated within the debate itself, this wasn't the first time many of these important issues have been raised with little action taken in the past. 

Please follow this link if you wish to find out more about the issues raised. There is a video that can be streamed and a transcript typed up for reading. 

Brightening up

I figured I have to get myself out of this stupid mood.. and soon!!! I spent a while on the phone earlier to a very dear friend of mine and even though we were both feeling rather glum we had a good catch-up on life things and I certainly felt a little better afterwards. I miss her though, A LOT. It poured down most of the day which is never one to brighten a mood so now it's evening and I'm waiting for a decent time to sleep to roll around, I thought I'd try and relax myself with some nice lighting in my room. I forced myself to actually get a few chores done today too and despite the rain walked to the doctors and back to drop of my prescription, not the most exciting thing in the world but it was some fresh air nonetheless. Hopefully both the weather and I will feel a little more cheery tomorrow so I can go and visit some places, a need to stretch my legs and clear my head. We'll see though. At least I took a couple of photo's today, somethings better than nothing. 

Extended glum patch

Well this miserable feeling that seems to have descended over me in a overwhelming fashion doesn't seem to be fading so I thought I'd just blab away on here. I have a list of various things to get done just sitting in front of me. It's not like they're hard or horrible things though, I just can't seem to get my head in gear to get them done. This is all VERY unlike me believe me which is why it's driving me up the wall!! The worst thing of all is that I can't even bring myself to go out with my camera... or smile and mean it. 

I also "found" myself stood up on the opposite side of my room to my bed in the middle of the night last night... I'm clueless as to whether I had one of those waking dream things or a partial seizure. It's hard to tell as I don't remember anything apart from realising where I was and putting myself back to bed. I did have a horrid headache, worse the normal, last night though before sleep and woke up with it this morning so I highly suspect a seizure. It's wearing off back down to the usual pain now though thankfully. 

Oh good news though, some blood tests results came back clear :) so it's "underlying stress" from meds, worry and constant pain that is the cause of hair loss and general greyness. Strange saying that's good news but it could have been some sort of deficiency or something worse. I'll just keep chomping down the vitamins and usual diet to keep what I can away. 

Right I'm off to mope around and watch a ton of Modern Family or something. 

Momentary life pause.

I'm feeling a wee bit low at the moment, just a momentary glum patch. Cuddly cats, warm radiators and friendly faces is what is needed for now. Catch-up very soon when my mind brightens up a little X

A small worry.

A small worry in the grand scheme of things but I have to ring up with the results of my blood test tomorrow. Of course I'm hoping they find nothing wrong but at the same time I want an answer as to why I feel "low". My hair is a thinning mess and my nails are looking terrible. Before Epilepsy and all these meds (Keppra, Lacosamide, Gabapentin and occasional Clobazam) I had fine but thick hair and mega strong nails. I MUST be lacking in some vitamin or other surely?? I do take multivitamins everyday to try and counter balance the effects of the medicine along with a healthy diet (I'm no angel though chocolate is a must in my life..) but I just don't think its enough! I'd love to know what more I can do to shove these stupidly strong side effects where the sun doesn't shine! 

Like I said I know it's a stupid worry but I look in the mirror and constantly look grey, I've got used to that,  but now my hair is so thin it's REALLY noticeable to other people and something I can't hide under make-up :/ Don't get me wrong I don't mind talking to people about anything to do with seizures etc but epilepsy is a hidden disability after all, until it rears it's ugly head, and it is nice to hide it away when you can but it's getting harder to do so. 

OK well mini whinge over, back to life. 

Video Telemetry

In October I had a 3 day/night hospital stay in order for them to perform a video telemetry test to find where my seizures are coming from in my brain. Video Telemetry is basically a test that constantly records a persons brainwaves via electrodes stuck to the scalp whilst simultaneously capturing a video recording of the person. 

I found it very hard to get hold of any information as to what it was going to be like staying in hospital during the test and the process that you are to go through. I don't know about anyone else but I like to know what I'm to expect. So I thought I'd get as much as a photo diary as I could and maybe someone else will see it and not worry to much... I wasn't actually allowed to take photo's but give a photographer an interesting/unusual experience and well...

Anyway here's me looking rather fetching all kitted out and in my pyjamas (even if I do say so myself...)

Right I'll explain the kit as much as I can. There were 25 (I think) electrodes stuck on various points of my head with a couple on my chest that were to measure my heart rate. They were all gathered and wrapped in the bandage you can see in the photo. The wires are all connected to a battery pack which sits on your waist and is quite heavy. Connected to the pack is a "event button" which you or anyone with you press if you think an event has just taken place or is in progress. All the data is collected in the pack and then relayed over to a computer which is in the room with you via a long data cable you can see leading off the pack towards the floor. You are connected to this the whole time you are in the test, but there is plenty of it so you can move around freely. Well I say move around freely, they prefer you stay close to or on your bed as this is where the camera is directed and of course if anything where to happen its better to be on camera! You are filmed 24 hours a day with a normal camera operating during the daylight hours and an infrared camera during darkness. They do not film you in the bathroom however, this is also where you get changed for obvious reasons... 

I have to be honest and say the application of the electrodes to my scalp was quite sore. I do have very sensitive skin however so it probably isn't the same for everyone :) They rub your skin to remove the top layer of skin cells in order to allow for a better conducting connection between skin and electrode. They then used a glue (as opposed to gel which is used in normal EEG's) the glue is basically the same stuff they use when gluing a cut together in the emergency department, strong and smelly stuff! Over the course of the test a neurophysiologist came in and checked that all the electrodes were conducting properly and would adjust/add more glue if needed (I had one particular one that didn't want to play ball!). Trying to sleep was pretty hard... it's not everyday your shoved in a strange room with your every move being watched whilst numerous wires superglued to your head pulling with the slightest of movements as they're attached to a chunky battery pack fastened around your waste is it? But then you get past the point of caring and tiredness takes over and you sleep. If you press the button a nurse will come and check on you, take your obs etc. The video from your room is streamed on the nurses station also so they can keep and eye on you and help you if anything happens. That's pretty much how it goes for the duration of the EEG. 

Then of course they have to take the wires off you... this I found painful, again it might just be for a few people but the glue made my skin so sore it bled(lovely). The lady was trying to be so careful taking them off to. They take the electrodes off by dissolving the glue with neat acetone, very strong stuff usually found in nail varnish remover. Once the glue is dissolved it fluffs up and they comb your hair with the aim of getting the most of it out. There is so much of it though it took me DAYS to get it all out even after washing my hair time and time again and combing it non stop. The tape they use to connect the electrodes to skin areas left nice red marks for a long while too. Put these together and the result is having to walk around looking like I had very specific patches of sunburn and sever fully dandruff... not a good look. There's no particularly long lasting results though thankfully. 

It was very strange being in hospital without actually being ill as such. It was pretty boring at times but I just napped a lot, received cute gifts, read, had visitors, rediscovered a comedian I love (Lee Evans!) and ate a lot of food, another strange thing for me whilst being in hospital. Usually when I'm in hospital seizures make me so nauseous I can't stomach anything! 

So all in all it was an experience I don't particularly want to go through again. I just have to wait and see what the results are now. Tense times. 

Urgent matters.

So there's something not quite right inside my head. Joy. 

I got called in to see my GP a week or so ago while I was away and the soonest I could get back in order to see him was Monday. We spoke for a while about various things including my general health, life stresses (my hairs gotten thinner and we're hoping its just underlying stress as I don't feel all that stressed to be honest), and most importantly we talked about the problem with my neurological test involving my eyes that was picked up both by an optician and hospital recently. He told me he is worried that this along with my constant headache is worrying and needs to be discussed as soon as possible with my neurologist. He has requested for me to see her urgently and while I was waiting in the waiting room for a blood test today he came down to see me and told me he had spoken with my neurologists secretary after our consultation on Monday and sent a fax over with my results to them today. Nice work doctor!! 

I'm trying to stay positive. I had a CT scan back in August and it came back clear so I'm pretty sure its nothing to sinister. Thankfully. 

2 years ago today.

Two years ago today I was diagnosed with Epilepsy. I remember it like it was yesterday, in fact what I remember the most is how I barely reacted at all. I had no idea what was to come because I had very little any idea of what the condition entailed and thats a fact I hate.

I posted this as my status on Facebook and had a brilliant response. I plan on sharing little facts every few days over the month. 

"2 years ago today I was diagnosed with Epilepsy. These past two years have been a hard-hitting rollercoaster of emotion, pain, enlightenment and sacrifice amongst many other things. But without it I would not have met some of the most inspiring people know, gained the knowledge I most value or learnt that a smile is one of the most important tools in helping someone heal. There is no cure. A person has Epilepsy, fact. But it does NOT have them.  People die from this condition… did you know that? I didn’t either. November is our awareness month; bit-by-bit we’re shining the light on a condition that few know much about. X" 

Sharing the huge amount of information I have learnt over the past couple of years is the plan! X 

November.

It's November (I can't believe it!!!) but it does mean it's Epilepsy awareness month!!! Spread the word people.

I will be back to normal blogging soon :)

Much love to all X

Upcoming trip.

It's been a while! 

I've been busy with hospital stays, family visiting and running around places amongst other things. With everything going on I haven't had to much time to spend on updating my blog. These hectic times don't stop here though, tomorrow I'm starting a exciting project. I can't give to much away for now.. but it involves road tripping around Britain for a little while so I'm not to sure if I'll be able to write much. 

I'm excited, nervous and intrigued all rolled into one as I too am half in the dark about whats about to happen over the next week or so. It's going to be a good one though!! 

What's in my (hospital) bag.

I've seen these "What's in my bag" posts around and about on blogs so I thought I'd do one of my own!

I'm packing my bag ready for my Video Telemetry in hospital which starts from tomorrow morning. It almost seemed a must to snap a photo and hope I have everything I need!

I'm being admitted for at least three days and I am not allowed to leave my room for 24 hours a day... so one of my main priorities is bringing things to entertain myself! A book is obviously a good place to start so I've borrowed one of my housemates books to take. This along with my laptop, camera and phone should keep me entertained for a while along with visitors! 

Snuggly nightwear is also a must! I will have a bunch of wires connected to my head to trying to sleep is going to be difficult I imagine. Plus I won't have a duvet as they want to see any movements at all times so warmth is also another things to think about so my dressing gown is coming along for the ride along with my slippers. 

Button up clothes are needed as I won't be able to put anything on/off over my head due to the wires. I won't be able to shower for the duration of the test also so plenty of wash things are packed along with all my meds in their boxes so the medical staff can see what I'm taking. 

Cheerio! 

Video EEG booked.

I got a phone call telling me I'm going into hospital from the 10th of October for my video telemetry. Thats THIS Wednesday, Scary!  

All I know is that I have to be there at 9AM on Wednesday and I will be in until at least Friday evening and I should bring things to keep myself from getting bored as I will not be allowed to leave the room 24 hours a day. 

I can tell it's going to be a thrilling ride... 

The Piano Guys

Looking over my last few posts there seems to be a rather low mood theme to them so I thought I'd write a positive post :)

The Piano Guys are incredible. Fact. Listening to them brings a smile to my face and this strange feeling into my heart. Now I realise how cheesy that sounds but there is just something about them that sits perfectly with my music tastes. Having the piano and my favourite instrument the cello as their main instruments is a massive help! Here's a link to their  You tube channel to have a sneaky peek. 

I like all their music to a certain extend, but I do prefer the more classical approach. Some of their covers of popular music tracks are just stunning too, here's an example of my favourites, not the highest of quality but still beautiful...

My music taste is vast and very varied but I could just sit and listen to these guys all day!

Wait and See

OKAY okay I'm trying not to worry about this but it's just to hard not to at least wonder what is going on...

So with this whole ongoing constant headache that is driving me mad I've been trying different things to rule out causes. Yesterday I went for an eye test, I've never had any problems. I've always been told by neuro's and opticians that I have perfectly clear eyes and yesterday was told yet again that my vision and eyes are PERFECT. There's just one thing... While I was there (as I hadn't had an eye test in about 7 years) they suggested that they would perform a field vision test. It was done using a machine where you have to look at a little light in the centre of the box you look into, then click a little buzzer thing in your hand every time they show you a little white light elsewhere in the box. 

These were the results:

The circled dots above are where I didn't click the buzzer. The test basically said that I'm not seeing all that much in the upper left field of vision... But as far as I'm concerned I'm pretty sure I can! A couple of people looked over the first test then told me I had to repeat it. Unfortunately it was pretty much the same outcome. I don't really know what happens from here, I was given a copy of the results and told to take them to my doctor and the opticians will write to them also. 

So now it's a waiting game I guess while all sorts of scenarios race around my mind. Great. 

A "Horizontal Day".

Well today was well and truly a "horizontal day" as I like to call them. No balance whatsoever just wooziness, increased head pain and general yuck feelings as soon as I go to stand. I've also been extremely tired and kept drifting off into really deep sleeps during the day. My housemates are brilliant when I get poorly, they turn into little nurses (despite them training to be doctors!) it's lovely to have such caring people around me, I don't know what I would do without them. I feel a little better this evening though as my balance isn't so bad but I'm definitely not right yet. Hopefully tomorrow will be a better day.

I thought I'd post a photo I took a while ago when I got some new bracelets through the post from Ebay. They're lovely little alternatives to my usual medic aware bracelet. 

Best get some more sleep and hopefully wake up with the ability to stand up properly tomorrow.

Chest infection conquered.

Thanks to some antibiotics I'm rid of my chest infection yaaaaaaaay! I feel SO much better... well back to my normal state of health which isn't exactly brilliant but I have so much energy compared to the last week :) 

My mum's farm has flooded in lots of places due to flash flooding in the area I was supposed to be heading home but the train lines around here are also flooded so I've decided to stay at least another day :). We've been out in the mud and pouring rain this morning moving horses around and re-homing the sheep in different fields, it's hard work in this miserable weather but I'm glad to be able to help properly, I really don't like being the one that can't help out as much!  

I'm sitting now just taking it easy and drying off for a couple of hours with a cat fast asleep on either side and a nice cup of coffee (decaf of course!). The rain has slowed down for a while at the moment but who knows how ling that will last... 

Soaring Temperature

I'm visiting my mum at the moment but unfortunately I'm sitting here whilst unable to sleep going round and round in circles on the internet. I caught a cold from my housemate about 4/5 days ago but now it's turning nasty. I have a temperature nicely bubbling away and my head, on top of the usual pain, is screaming at me every time I cough or sneeze. Last night (so I'm told) my speech was beginning to slur and I was massively struggling to find the right words and stopping altogether along with developing an even deeper shade of pale grey on numerous occasions... not good. 

A trip to a doctor was in order this morning  they confirmed the temperature, told me to keep taking all my usual pain and seizure meds, try to rest as much as possible and prescribed Antibiotics. I can feel it down in my chest now which worries me but hopefully the antibiotics do their trick soon as illness and Epilepsy DO NOT MIX!!! I just have to watch how everything goes with a close eye with the help from my family and rescue meds. 

I'm sitting it out at home for and hopefully that's where I will stay.. I really don't want to see any hospitals for now!! 

Emergency supply of meds/sleep.

Well yesterday was interesting...

Friday night I was busy filling up my tablet reminder box and noticed that I had forgotten to ask for my next supply of 250mg Keppra tablets. I've never had to ask for them before as this was the first time I had run out since the hospital increased my dose last time I was admitted. I only had enough to last until this morning (Sunday) so had to find a pharmacy that would supply my some to tide me over until next Wednesday as I'm off to my mums. Now there were a couple of problems... One being that, because I have never had to ask for them since being in hospital, I didn't have a repeat prescription and Two being that my usual pharmacy doesn't open on a Saturday. This meant that I had to find a pharmacy that would take me on as an emergency patient and without any sort of prescription. IT TOOK FOREVER. All I had was the old box the pills came in from the hospital with my details on. Four pharmacies after my first attempt I fell upon the golden 250mg Keppra tablets, but now I had another problem... It taken me so long and I had had to walk a long way whilst in a lot of stress... so now I was exhausted. It would have seemed like nothing to some people but it just took every ounce of energy away from me. While waiting for the pharmacist to come and see me, which thankfully didn't take long as it was very quite, I felt like all my pills had taken effect all at once and could feel my energy just seeping away. Once we were in the consultation room I explained my situation and to my relief she said she could help me out and knew that they had the tablets in stock. So she left the room to go and prepare my medicine and input my details onto the system etc. The next thing I know I'm being woken up by a strange woman in a room I didn't recognise, my sleepy confusion soon cleared though and I realised it was the pharmacist and I was slumped over the little table in the consultation room! I could not believe I had actually fallen sounds asleep... after I'd properly woken up she explained that she had come back with my meds but found me asleep so left me for another 20 minutes! 

That nap made such a huge difference though as well as the relief I finally had my supply of Keppra up to date. So now I can hop on the train in the morning up to my mums and chill out on the farm for a little while and I even get to one of my rarely seen sisters for a few days too :) 

Volunteering begins.

I started my new volunteering position at an arts centre yesterday evening. To be honest I was really nervous but it turns out I had absolutely no reason to be. Everyone was so lovely and chatty :) I had a tour of the building (most of which I know already because I've been there so many times!) there's a theatre, gallery, dance studio's, two cinema's one 120 seat one and one of a much more intimate size, both are really comfy and presented beautifully not like the big branded places! There's also a big cafe bar area which makes for a brilliant place to socialise. The most fascinating place I got to see though was one of the projection booths!!!! Seriously amazing!! After my little tour I was told what to do and that was that ready to go!

This was the film I was ushering... Berberian Sound Studio

It was brilliant, very intense and mind boggling, as soon as the film finished, while I was waiting at the door for the viewers to leave, other members of staff came over to ask what the film was like because they'd heard so much about it but hadn't had the chance to see it, I couldn't really give them a straight answer because I myself wasn't completely sure what I had just experienced... It was a hardcore film to start my time at Chapter with and so I felt I had to share! 

Officially a Graduate.

It finally happened. Four years after starting university I have dressed in my mortarboard and gown, walked across the stage and doffed my cap.

After being diagnosed with Epilepsy just a couple of weeks after starting my third and final year of my degree I have to be honest and say there were certainly times where I never thought it would happen. This was especially true when I had to suspend my studies over half way through my final year because things got so bad there was no way I could carry on studying. After restarting my final year in September and despite it being VERY hard a lot of the time with an unbelievable amount of support that I am truly thankful for, I can officially say I am a Graduate.  It's the biggest sense of accomplishment I've ever felt and it feels amazing. 

Now excuse the posy photographs it's not my usual thing but I wanted to make the very most of my day!

It really was a lovely day and the best thing was being able to spend it with my friends and family. A friend who I studied with originally and who graduated last year travelled a long way to be there, even brought her mortar board so we could wear them together as originally intended! 

x 

18 pills a day.

Since getting really poorly a few weeks ago and spending time in hospital I've now been put on even more medication. So I'm now taking a lovely 18 tablets a day, luckily this number has dropped from 26 a day as I was taking paracetamol with the concoction but I had to stop taking it because it would soon start to damage my liver. 

This little handful is my morning dose.

First there was a increase in my seizure medicine Keppra from 2000mgs a day to 2500mgs a day in order to stop me seizing so much at the time, these are the large white and small blue tablets. The yellow tablets are Gabapentin a neuropathic painkiller that was once used as an anti-epileptic medicine here in the UK but is no longer used for that reason (I'm pretty sure it's still in use as an anti-epileptic elsewhere though). It has helped with the pain but not entirely. The pink tablet is Ibuprofen to help with the pain and any inflammation that occurs, the small white round tablet is Domperidon an anti-sickness medicine to take away the nausea and sickness (I can't eat without it) and finally the brown tablet is my other seizure med Vimpat. 

I take the painkillers and anti-sickness 3 times a day and seizure meds twice. I'm on close to maximum amounts if not the maximum amount I can take for my weight so I'm pretty dosed up and definitely feeling the effect. Tiredness, lack of physical energy, memory and speech problems being the worst. Of course I have to remember that to some people 18 pills is nothing and hand on heart, I feel for them.

Do they work? Short answer no. BUT the Gabapentin and Ibuprofen have lowered the extreme pain I was in a few weeks ago, just not entirely. I still have seizures (what a surprise). However the anti-sickness is working if I take it away the nausea sweeps right back in and the prospect of eating just goes straight out the window. 

Anywho I just have to carry on life as it is, slowly but surely plodding along...

Yet again life has taken over!!!

Some free time to rest over the weekend should leave me with time to post some exciting life events from recently.

X

Cranial Osteopathy

I'm sick to death of having more and more pills thrown at me, I can't take much more of it I'll just end up not being able to function at all soon.

I've decided to try a different approach after being given the suggestion of cranial osteopathy. It took a while to take the plunge as it's costs money (which I really don't have much of..) and initially it was to try and help with my seizures but I'm quite the skeptic when it comes to these kinds of things but now I'm stuck with chronic neuropathic head pain as well I'm willing to try. I finally made an appointment and during the week I went to my local clinic for an initial consultation to find out what it's all about and if it might be able to help me. 

The session began with meeting a really lovely osteopath at the clinic. He asked about my medical history and any significant illnesses and if I'd wait for it... "suffered any falls"... well, I could write a scroll... and so began my mammoth explanation. After that there were a few quick tasks like signing a treatment consent form etc and writing down what to do should I go into a seizure given that sometimes osteopathy can initially make symptoms and problems worse (but thats only for SOME people and only for a short amount of time). 

The beginning of the examination involved walking in front of him so he could check alignments and things then he sort of felt my muscles, then asked me to do things like turn my head from side to side. Most of the stuff I can't really say why they ask you to do it... It's all new to me! After, I had to lie down and he massaged my head and neck (at which point I realised that the muscles at the base of my skull on the right were much more tender than on the left..) The result from that part was that my pelvis is out of line which would probably explain why I feel like my back needs clicking all the time! He asked when my bigger falls were (the 3 biggest being May this year and about July 2011 and late August 2010) he didn't think it felt new enough to be this year or even last year so is most likely to have been knocked off centre when I fell down a flight of concrete steps a couple of months before I was diagnosed. Anyway, once we'd established something of a starting point I then had to lie down on my back with his hand flat beneath my hips and seriously he was doing the TINIEST of movements through his fingers and I could feel my back sort of slipping little at a time almost like little bubbles were bursting strange feeling and with so little force! 

At the end of the session we talked through what we had done and what his conclusions were. He said that I am quite a complex case (now where have I heard that before??) and he could not be sure if osteopathy would be very helpful but I could give it another session to see if my symptoms improve any. The miss alignments and tender muscles on certain sides might be an indication of crushed nerves or some sort of damage, which could be whats causing head pain so it's worth a try. So that was it, my back ached a little afterwards but other than that no extra seizures or more pain so it's all good :) 

I must say I find that rather than trying to locate the cause of my chronic head pain, doctors and in particular hospitals just think it's easier to throw painkillers and anti-sickness drugs at the problem and cover it up, which I agree it is easier but in a way it makes me even sicker. I'm really hoping this might help at least a little bit so I'm going back on Wednesday... we'll see what happens. 

Video of my "small" seizures.

These are some of the smallest seizures I have. In fact these ones in the video are TINY... most people would see them as strange movements in my sleep but notice how they have repetitive, I chew with my mouth and take a deep breathe after my arm finishes moving. The ones in the video are subtle or weak complex partials. I also have these whilst awake, my head and eyes deviate to the right with stronger ones along with staring, blinking and more pronounced movements with the arms and mouth and i am completely unaware that they are taking place. 

This was taken while I was in hospital, the shirt over my eyes was because I had a unbelievably bad headache (chronic neuropathic pain) I was extremely sensitive to any light. I was dehydrated from not being able to eat or drink much for nearly two weeks because of the nausea brought on by the pain which is why I'm attached to a drip. This all in turn led to far more seizures than usual particularly when sleeping. My friend who is also in these cases my "witness" was the one recording the video while waiting for a tests. Literally don't know what I would do without her! 

Off sick!

Just out of hospital - be back soon x

Poorly poorly poorly :(

Long time no swim.

What an eventful couple of days and believe me I'm feeling it now. Today though, I've done pretty much nothing but lay around and listen to the storms that have been rolling over. I haven't slept well the past couple of nights for some reason. Normally I'm out like a light, which isn't unusual given the meds I take, but for the past couple of nights its taken what feels like forever to fall asleep. Then during the night I wake up with strange feeling sensations crawling all over me. The might well be aura's which are strange feeling, smells etc that some people get as sort of warning sign before seizures. I rarely get them and whatever it was these past couple of nights it isn't something I've ever felt before so I can't definitely say if it was an aura or not. Hopefully it'll pass and I'll get a full night sleep again very soon. I NEED my sleep! 

Since I was a baby I've always loved the swimming pool. I swam competitively from a young age too and have always loved and taken part in water sports. Since having seizures though it's not as easy. One, there's the risk of seizures in the water and two, the side effects of large amounts of Keppra and Vimpat I take make energy levels very low. Now I live a five minute walk from a leisure centre though, I've found I can't resist the lure of the pool any longer! So yesterday I dug out my swimwear and went off. Obviously I have take my time but I swam a few lengths I have to say though I was SO jealous of the girls swimming up and down length after length without it seeming to bother them in the slightest. I used to be that fit. I really enjoyed being there, even the smell of the chlorine was invigorating! I have to be careful and not push myself to much but I've decided I'll try to go at least once a week if I can and build up some strength. If I can get a good night sleep tonight and feel rested and of course am well enough then tomorrow I think I might go for another quick dip. 

Oh here's a bit of drama though... I literally had just showered and got into the pool when a woman walked up to the side behind me and started talking in a foreign language in a distressed way. You know the kind of sound where you immediately realise something is wrong? Well there was... her young daughter who (as we later found out) had never been swimming before had climbed into the pool and was out of her depth and struggling to get to the top of the water!! Instincts kicked straight in and before I even realised what I was doing I was grabbing her out of the water. An older lady helped me lift her onto the side and she immediately started angrily shouting at a lifeguard who even by then STILL hadn't noticed what was going on. Why the girl was in the pool on her own though is beyond me!! Everything was fine in the end though. Nothing like a quick bit of drama to get the adrenaline pumping!

Anyway sleep first, swim later.