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