One memory in particular

Last night I got home from four days away staying with my nan in Derby. It was a really good few days away for lots of little reasons. The main reason for the weekend was to celebrate my nan's 70th birthday by having a huge party with many of our family and plenty of nan's friends. It was amazing to see all my family again. Living so far away from them for all my life means that there are precious few occasions where as many of us as we can get together at one time. The party lead to me seeing members of the family I haven't since I was very young or have never met at all!

I haven't visited my nan's house for many years but I've spent much time there when I was younger. To walk through that front door again brought back many memories :) It pretty much looks, smells and sounds exactly as it used to. I stayed in the 'little bedroom' as we've always called it, exactly where I used to stay as a child. There is one thing that I remember particularly well about this little room. The light and sounds of the street and road out of the window. I grew up in North Wales surrounded by nothing but fields and the silence of the countryside. Whenever I used to come and stay at my nan's I would go to bed when told but instead of going to sleep I would stay awake as long as I could hoping not to get caught and stand and watch the world outside that window. The yellow light fighting its way through the curtains and the sounds of the seemingly endless stream of cars passing by on the street below. Something completely alien to a little girl growing up in the country. It fascinated me. 

It was so lovely to spend time with my family and especially my nanna. We had some good long chats. very much needed to be honest. I was supposed to be going to visit my dad in North Wales this week but I'm simply to tired to. All this travelling around Britain in the past month has really knocked it out of me. But hey a some time to relax in these last couple of weeks living alone and before university starts again will do the world of good :)

One year since first seizure.. Maybe?

Happy Seizureversary to me. One year since my supposed first Tonic-Clonic seizure. I can't believe how fast it's gone... this time last year I had absolutely no idea what was coming up. 

Well I'm off on the train up to Derby to visit my Nan today for her 70th Birthday Party :D I can't wait to see all the family again! I've been waiting for this weekend for a long while!

Have a nice weekend :)

X

University, the final decision.

The prospect of restarting my final year at university is well and truly on my mind. Term starts in just a few weeks. 

While I was in hospital my dad rang. Of course to ask how I was etc but the one bit of conversation that really clung to mind was when he said my enrollment papers had come through the post. I thought this is it, it's actually happening, I'm going back to university. So I replied with "great can you post them on to me?" Then there was that silence... you know, the silence that screams a thousand words. Eventually followed by "I don't think you should go back to university this year..." The word shocked doesn't even come close. I got that awful pang in my chest, the one you get when you almost trip down the stairs. Of course he meant it in a nice way, but no one has actually said that to me outright. He's worried that given my condition has not improved I will end up having to drop out again. It gave me a lot to think about while lying in that hospital bed.

I know it's a risk, I might not be able to finish the year or get decent grades. But I know no matter when I finish this degree it won't be as high of a standard had I completed it without Epilepsy. That's just a fact I've come to except. It's a also risk to wait until next year. Next year would be final chance to complete my degree. (we get five years in total to finish a 3 year degree) and let's face it who's to say my seizures and their effects won't be worse then. Of course I hoping that they won't!!!... but they might be.

I want to go back to university this year, and I'm going to. It's different this year, yes my Epilepsy is still very uncontrolled but I know it's there. I know that anything could happen and at any time, but so do the university and more importantly, my tutors are more than well aware . The fact I have uncontrolled Epilepsy already exists unlike last year where it crept up from no where and literally punched me in the face and turned my life upside down.

There will be problems, of course there will. I had an appointment with a DSA (Disabled Student Allowance) advisor a couple of weeks ago. We went through everything that could possibly crop up during the year at university. Any problems from not being able to attend lectures or seminars to having a big seizure whilst I'm in the dark rooms. There is a solution to almost everything. For example it has been agreed that when ever I choose to use the darkrooms there will be someone there with me, a 'chaperone' if you will. I had the option of having someone with me at all times while on campus but I simply said no. Being on campus is just the same as being anywhere else in my life. The threat of a seizure is always there and if it happens it happens and hopefully the situation would resolve itself in just the same way as as if I was off campus. The darkrooms however are completely different. They are exactly that, DARK and depending on which darkroom I happen to be in they could be PITCH BLACK. It is a totally different environment. Chemical vapours fill the air, you constantly walk from room to room with anything from, changes in temperature to changes in light in a split second. Anything from daylight to red light to pitch black. While developing camera film there is also a point in the process where I will need to lock myself in a small light tight room. Not the best place to have a seizure and be on my own...! That's not counting the sharp edges and corners, heavy apparatus that I could pull over, numerous chemicals in open containers I could spill and many more hazards. But the thing is it's not only me I could end up hurting but anyone else that happens to be in there at the same time. Just the thought of someone else being hurt makes me shudder. 

There's other stuff to that the university has offered me too from extra time on assignments should I choose to take it and any presentations I have to do I will offered the opportunity to read from a script I have written should I need to instead of recalling all the information from memory given the effects on my memory, something that's usually not encouraged.

So there it is. I'm going  back to university to re start my final year and finish my degree. I'm nervous I mean I am going to be joining a completely new class it's like starting at a new school :D but I'm also very very excited!  Role on the arty goodness!

:)

Back from Portsmouth

Back to normal life well for a few days at least.

Today is back to normal life after a non stop couple of weeks from various appointments to time in hospital to staying with my mum and finally a visiting Portsmouth. Phew! As if just to prove it Last night I got a whopping 15 hours sleep?? I don't know what happened I had got back from travelling all that way unpacked stuck the washing machine on made some dinner. Although I could tell I was tired because I kept doing stupid things like not putting any soap in the washing machine before I turned it on... and putting the oven on and not actually putting any food in it until I went down to check how it was cooking and finding it sitting on the side still :/ Anyway I watched a couple of things on TV then realised how tired I was. Looked at the time and found it was only 10 to 8 in the evening, not exactly late at night. I went to bed non the less. If I'm tired, I'm tired and if the opportunity to get some sleep is there I take it! I didn't wake up until just gone 11am the this morning! 

So I went to visit my friend and her family down in Portsmouth for the weekend, it was really fun! We went visiting lots of different places. Aspex gallery being one of them, a lovely contemporary art gallery tucked away just off of Gunwharf a main shopping precinct. We also went to a vintage boutique market which was LOVELY. Yes I did buy lots of cute little bits and bobs from both the gallery and the market. I can't wait to put them up! I also got to meet my friends brother and his fiance who were both very nice when we went for a nice Indian meal mmmm :) When we were finished the whole family and I went back to her brother's flat and drank tea while playing computer games which was very fun! 

We also got very lucky with the weather took a ferry across to the isle of Wight. Lovely weather and a beautiful place! 

OH I have to mention these two. Amber and Bailey who I got to share the house with. So cute and unbelievably fluffy :D 

There were some tasty treats to be had too 99 Ice cream and Gluten free bread and soldiers. YUM.

There were some nice long chats about everything life wise from everything that had happened over the last few years to whats to come in the future I feel better for it. the new university year starts in just a few weeks I'm now more excited than nervous whereas before to be honest I was very very nervous. I miss being able to blab on for ages about anything and everything. 

Oh and for anyone who can (and wants to) you must see the Inbetweeners movie!! So so funny good old British film... Warning though this trailer isn't censored!

A very nice weekend all around :) 

3 strikes and your in hospital!

It's been a while since I last posted and with good reason. This is going to be a loooong post simply because I'd like to get it all down for myself to remember!

So after barely anything seizures wise for well over a week on Friday I had three huge Tonic Clonic's (possibly more) in the space of 12 hours. The last one resulting in me falling down some concrete steps and... wait for it...crashing into a rubbish BIN!! How dignified. It was during this one that I banged my head twice, my elbow and my ribs all down my right side very very hard. By now I'm used to the bangs and scrapes but I could sense something wasn't quite right... and given that I'm living on my own at the moment I decided that instead of going to straight down to the hospital I would ring my local doctors surgery and ask their advice. making sure at least someone knew was definitely a must do. And believe me I'm glad I did! The people I would have usually told were a couple of friends who live in the same village but they just so happened to be away at the time. A that time though I wasn't feeling that bad to be honest, just a little bruised and sore like usual. Anyway I got through to the surgery and she said to attend a emergency clinic that was starting in about two hours from when I rang. She gave me some advice over the phone there and then, told me that my doctor would ring me in the mean time and if anything changed call an ambulance.

So after a rather slow and wobbly walk across the village I made it to the surgery. By now I wasn't feeling so good but despite it being a particularly busy afternoon for the clinic it wasn't long before I was seen. The doctor called me in and as soon as I was in the room he got up to help me sit down. But I found it too painful to sit down so I decided to stand instead wavering slightly.. We went back through what had happened, he examined my head, ribs and elbow and within two seconds he stated I'm sending you to the hospital my face must have dropped because he then said "but we'll have to get you there before all the drunks arrive" with a smile. (It was a Friday night one of the worst nights to end up in A+E!!)

So I then endured the most painful road journey I've ever taken. Even after taking some over the counter painkillers.. I don't think I'd ever been so glad to arrive at a hospital before! This is the bit that I thought would be easy. I was thinking, right I'll walk into Minors, wait for a little while as it was already busy, see the triage nurse get given some stronger painkillers and be out of there! WRONG.

The only bit I got right in the end was the walking into minors. I was then seen straight away by the triage nurse. She asked me a few questions for the paperwork and asked me to explain what had happened again. She then examined me and said we need to get you through to majors now. And that was that I was whisked away and taken to the assessment area of majors. Within seconds I had people around me prodding and poking, everything from looking at my lovely forming bruises and scrapes and taking bloods to performing  a neurological assessment and checking my heart and temperature. Results? The pain was bad, my bloods were all over the place and showed infection, my reaction times were slow and my pupils were unequal, my heart was beating too fast (which given what was going on I'm not surprised) and my temperature was up. Great. They then sent me to have some X-rays which thankfully came back saying nothing was broken!! I think the quote "how on earth you didn't at least chip your elbow is beyond me" was the best one. By now my side and ribs were tightening, my head was banging and I was feeling more ill. They kept me in Majors under observation for a couple of hours then a doctor came over and explained that they wanted to admit me into hospital for the time being. So that was that I was taken up to a ward where I was helped by the lovely nurse to get changed into one of those dreaded hospital gowns... I don't know what it is with me and those gowns.. whenever I have to wear one I always seem to tie it up wrong or get in a tangle. Not having the use of one arm, the wobbles and not being able to move and bend all that well just made the prospect worse! But thanks to the nurse I was helped into the gown and my bed and given some amazing painkillers :) and so the hourly obs began. Temperature, blood pressure and neurological tests like pupil reactions to light etc. 

I rang my mum up that night and explained what had happened before anyone else had the chance I wanted the phone call from hospital to come from me rather than a doctor or nurse. That way I could explain myself what had happened. Needless to say she was worried and wanted to know when they were going to discharge me but of course I didn't know as it all depended on my observation stats. They live a long way away so I didn't expect them to come up but to talk to her was calming. She said that as soon as they think I am ok to leave that my step dad would drive up and collect me so I could go and stay with them for a while. 

sooo much tea! There were 5 beds on the ward with some very sick people but the atmosphere was surprisingly cheerful always a good mood lifter :) One highlight being to elderly ladies moving across the ward with their zimmer frames. They accidentally got a bit to close and crashed two of their wheels together and it took them soo long to untangle themselves given that they were laughing so much! Fancy that a real life slow speed zimmer frame collision occurring at the foot of your bed. You don't get that everyday!

Eventually I was examined by the doctor during a morning and she explained that my temperature had finally dropped but they would only be happy to discharge me if I would be constantly supervised for the next few days. Otherwise I would be kept in hospital. Thankfully I was able to say that one of my parents were able to come and collect me and I would stay with them for a little while. Phew! She explained that I would have to take some prescription painkillers for a week try not to move around to much (always a hard task for me I really can't stand being still for to long!) and use my sling for two weeks. Urgh. It will take at least six weeks for the pain in my ribs and elbow to go away and they could be stiff for months. They never did find what made me ill in the first place. Strange.

Once the swelling had gone down

Well I'm out now and still feeling very achy and sore. My elbow looks a bit of a state and still swollen, the bumps on my head are still tender and even breathing deeply makes my ribs feel like they're going to explode BUT the good news is I've not had anymore Tonic-Clonic's since, thank goodness, I don't want to even imagine what that would feel like with these injuries!

Gosh that was a long post good to it written down though! one adventure I DO NOT want to have to repeat  I'm off to see one of my closest friends who has quite literally been by my side and kept my life together over the past year since this whole Epilepsy thing came about tomorrow at her home near Portsmouth :D sooo excited! At least train journeys are a lot smoother than by car :D

And the moral of the story is... try to avoid launching yourself down any steps and into those oh so innocent looking bins... IT WILL HURT!  

Stay well X

Explaining to do :/

Ok so I have some explaining to do... After an awful day of being very very upset and agitated I went into cleaning mode to take my mind off the mornings events. I had a small...ish seizure whilst ironing which resulted in me dropping the iron onto the less than a year old carpet :/ woops. So now there is rather obvious iron mark  where it landed and melted in. Bugger. That's going to take some explaining when the landlord sees it. 

Guess that's an end to my time seizure free. Again. 

So Britains falling apart...

The sickeningly violent riots are spreading... wreaking havoc further and further afield, my hamster is sick, and I'm missing my family and friends like crazy. 

So I went out and bought a super bright duvet cover. I think it was a subconscious attempt to brighten things up. Which it has done... well my bed at least. But Britain is still in turmoil, Sesame is still very poorly and I can't do anything for her and my family and friends are all still hundreds of miles away. :(

Its truly frightening what people will do sometimes. I wish I understood the reasoning as to whats going on, but I don't so I can't comment anymore.

Rubbish times. 

Stay safe and well wherever you are X

Lacosamide, the ups + downs.

Today I'm not exactly feeling brilliant, feeling sick, dull headache, very tired but can't seem to sleep  and have absolutely no appetite (very strange for me.. I don't even fancy chocolate... WHAT!!!) So most of the day will probably be spent doing the dreaded "taking it easy" mostly involving lying on my bed. Fab. With nothing much else to focus on I thought it might be appropriate to post a little update on the medicine I've recently started taking, Lacosamide. 

I want to say how amazed I am at the effect it's had on seizures. In fact apart from a few absences, I've not had a single seizure in just over a week :D! By now I'm used to not getting my hopes up too high but, maybe this is a sign of positive things to come? Only time will tell :)

I feel nauseous quite a lot, not all the time though which is a plus point :) Headache upon headache more days than not which isn't so good some are so intense that they make me feel sick to the stomach and want to cry they hurt so much :( but mostly they are just regular headaches. My sleep is quite disrupted... some nights I can sleep a good 9/10 hours, one night in the last week I slept for over 12 straight through! Then there are nights where I barely sleep at all, I seem to wake up again and again for seemingly no reason. During the day though I seem to keep most of the tiredness at bay, mostly by distracting myself. But of course sometimes it just creeps up and overwhelms everything else so you have no choice but to sleep for a few hours. No fun!

Ooo one good thing though is that I was warned by several people including doctors and my nurse that the dizziness and effect on balance that Lacosamide has is very likely to become apparent... but apart from the odd tipping of balance I've barely noticed it at all :D Woo!

There are particularly bad days though like today. But we all have those from time to time.  

There is one thing playing on my mind though... it's not recommended that you take Lacosamide when you're pregnant. But what if I want to have children in a few years? If this medicine works will I have to unravel everything again and risk life being turned on it's head should seizures return? Hmmm something that I will have to bring up in my next appointment I think, just to get it off my mind. 

But given that at the moment I am increasing my dose weekly (another one tomorrow.. urgh..) I'm not doing all that bad. Fingers crossed the side effects will pass once my dose is stable :)

Bryneglwys Show 2011

Saturday was the day for this years Bryneglwys show. It's a cute little countryside show that takes place in the mountains of North Wales. Vintage tractors, falconry displays, art displays and produce and craft competition tents. But the one thing this show is particularly well known for is it's horse competitions.

This year my youngest sister Charlotte took part with her new pony Honey and despite being understandably nervous they both did incredibly well! I am very proud to say that out of the three classes she entered, Charlotte walked away with two 2nd prize Rosettes and was entered into two championships both in-hand and ridden. :D Smiles all around there! 

Brilliant day all around :)
Bring on next year!

Just a stop-gap..

Ok so I've not posted in what feels like forever. This is for a mixture of reasons... good and the not so good. Oh and the internet here is BEYOND SLOW. (This post itself will probably take a reaaaaaally long time to publish!)

But I'm safe in the knowledge that when I get back to my little house in Caerleon this weekend I'll have lots of other peoples blog posts to sit and read through with a big old cup of tea :D

Not that I want to leave here!!!

Catch up soon :)

X