Standing without help

Today I was able to walk without my crutches for the first time since a seizure sent me falling down some stairs. It feels SO good to stand by myself! I don't have full bend in my leg, my knee is very tight and it can't take my weight entirely by itself as it's very weak and walking for a huge amount of time isn't an option but it's getting there :) I start physiotherapy next week and I know it is going to hurt but all for the better. I've been told it's going to take a number of months for it to return to normal so for now I seem to have adopted a slight limp. 

The main thing is that my crutches are leaning against the wall in my room out of use unless I have to stand/walk for a long amount of time and that's the way I hope it stays!! Perfect timing as well as I have my graduation exhibition opening tomorrow night :D CANNOT wait!

National Epilepsy Week UK - Seizure video's

Last week (20 - 26 May), here in the UK it was national Epilepsy week and the brilliant charity Epilepsy Society produced video's to raise awareness :D Interestingly and unusually the video's are filmed from the sufferer's point of view. Brilliant for raising some awareness and an absolute must to share! 

It is important to understand that there are over 40 different types of seizure and obviously everybody experiences them in different ways but these do give a good idea into what it is like to experience various types of seizure.

I suffer from three of the seizure types shown here and personally I feel the absence seizure video is closest to my experience as it is pretty much exactly what happens when I'm in conversation with someone or listening in a lecture and they happen. The girl asking for her friend to repeat herself... well ask anyone I know they will tell you that is EXACTLY what I do an unbelievable amount of times! 

Tonic Clonic Seizure

Absence Seizure

Myoclonic Seizure

Atonic Seizure

Simple Focal Seizure

Complex Focal Seizure

Tonic Seizure

So there we are, a tiny insight into what it's like to suffer a seizure, for more detailed information into various seizure types here is a link to Epilepsy Society's seizure info page :) 

Degree COMPLETED!!!

I've sat my final degree assessment at university. It was a few days ago now but it's only just sinking in for real. I have to keep reminding myself that I have COMPLETED my degree it just doesn't feel true!! This time last year it would have been impossible... and although I have to admit it has been VERY hard this year but with loads of help from some brilliant people who I will be forever grateful to, I DID IT!!!! 

I don't really know how it went... alright though I hope! The questions they asked were difficult to answer and had to be re-phrased a few times but I tried my best to answer them so I guess that's all that I could have done. I tend to forget things very easily so cue cards were an absolute must, although everything was supposed to be off the top of our heads I'm glad we were allowed to take some notes in otherwise I can quite safely say I would have been screwed and without coming across as far to negative, there really would have been no point in me even attempting to take the assessment as being able to recall information is a skill that evades me every single day! There were some nice words spoken by my tutors afterwards too which I was so grateful to hear :) After it had finished it made me realise that even though I was desperate to sit it the same time as everyone else last week it would have been a stupid idea when I was feeling so poorly. I needed someone to tell me that and I'm glad my tutor did as I suspect if I had taken it then, then I would have fallen apart... it also made me realise that I can be SO stubborn for the worse at times!!

It feels very strange not to have to think about work that I have to get done for a certain deadline. Although there are ideas flowing through my mind and believe me I cannot wait to be able to get out and about with my camera! 

There's just our graduation show to put up from tomorrow with the big opening night taking place on Friday. It's going to be hard work but I can't put into words how exciting it all is :D it has definitely been a long time coming!! 

Time to go and pinch myself again... just to check I'm not making all this up and on that note SCREW YOU Epilepsy you DO NOT win every time!!!! 

Birthday weekend

I turned 23 at the weekend!!! TWENTY THREE... I can't quite believe it, it only feels like yesterday I was in primary school!

I was such a nice weekend. My friend, who I'm moving in with, came over to collect me so I could spend the weekend in Cardiff with her. She cooked a lovely lamb lunch for us and we went over to Penarth to walk (or hop in my case) along the pier in the sunshine :D finished off with a gorgeous ice cream!

These are some of the cute little gifts I was given :) 

Sunday evening my mum drove down to pick me up and take me to stay with her. I had a lovely time there hobbling around on the farm with lots of time to relax. Including sunny evenings watching my mum school one of the horses :) 

I needed some time away after the chaos of the last couple of weeks. Seeing close friends and spending time with family is just what I needed to feel better :) oh and stuffing myself with mums cooking! YUM.

A+E Review

I popped into the hospital for an A+E review today. It was basically to go over what happened a couple of weeks ago when I had a seizure and fell down the stairs and ended up having to be admitted to hospital with a good few injuries. They checked how I've recovered, my head it completely better as with my ankle thankfully but my knee on the other hand is not. It's still very painful and each time I try to put weight on it to walk with my crutches it just swells right up again and re-bruises. Not pretty, so after they prodded, pulled and poked it today they had the physiotherapist look at it and I have to go back in a couple of weeks. Joy. 

So it looks like these beauties will carry on being my best friends for a while longer. I am determined to walk without them for my graduation show opening though... only time will tell!

The idea is to rest my leg as much as I can but I'm just so rubbish at 'resting'... staying still is most certainly NOT a strong point for me especially when I'm feeling a little bit energetic as that doesn't happen all that often!

I seriously do not know what I would have done without my friends helping me I can't even carry my own cup of tea :( bad times. 

Time to hop off :) 

Assessment

I'm so unbelievably angry and sad that after everything, at the very last minute I wasn't able to sit the final assessment of my degree. In fact I think I'd go as far as to say I'm very close to devastated. The only thing that's holding me away from being devastated is knowing that despite being particularly poorly over the weekend I still managed to get my work in for the hand-in deadline on Tuesday. Unfortunately though that is as far as I got as just a few hours after being in university signing everything over to them I ended up feeling very VERY ill, ending up back in hospital that night. 

I knew I wasn't feeling right during the previous days and by the time it got to Tuesday I felt a whole lot worse. I mean obviously I wasn't exactly feeling on top form from falling down the stairs a few days previous but this wasn't achy painful ill, it was more banging headache, pale, shaky and nauseous ill. I tried to sleep it off but it just got worse as the evening went on. I was alone in the house and eventually I felt so poorly I decided to ring NHS direct for advice and see what they made of it. After explaining everything to them I hoped they would say something along the lines of "don't worry get some sleep tonight it's probably just bit of delayed shock or something..." But that wasn't to be, instead they told me to ring my out of hours doctor and talk to them about what I should do. Now I know that when they tell you to talk to a local doctor they want you to get checked out so STUPIDLY I didn't want to ring them. I think it was because I knew deep down that something was wrong and that it would probably end up screwing up my assessment. WHY that was going through my head rather then go and get yourself better, I don't know... I guess I'm just far to stubborn for my own good at times! So I sat there for far too long trying to decide what to do during which time my housemate came home and I asked him for advice... which is when we noticed the bump on my head had swollen up again out of nowhere. Needless to say that gut feeling of panic started to set in and he pretty much demanded I ring the doctor. Another thing that held me back was knowing he had his final assessment early the next morning and if I had to go and see anyone he'd be the one that would have to take me and it was already close to 11pm. Anyway eventually I rang the doctor, explained the situation and without a moments thinking they told me to go straight to the hospital. 

So yes what I instinctively knew was going to happen, happened. Fast forward to the following morning (after shooing my housemate off home at about 2.30am) I was still lying in hospital. I had observation all night and all the usual neurological tests to check there wasn't anything horrible lurking from when I hit my head but all was fine thankfully. My pupils where unequal though which was a cause for concern although we put it down to seizures which means I'd either had recent seizures I hadn't noticed which is very likely or very subtle seizures at the time or both.  Anywho my bloods came back and it turns out I was having a bad reaction to the co-codomal I was taking as painkillers so I had to come off them immediately. Lucky to have spotted it as if I had kept taking them things could have gotten much worse. It's really knocked me for six though and I'm very tired and look like death warmed up! But the good news is that I'm on the mend :) 

I was so tempted to still take my assessment after getting out of hospital but my tutor was pretty insistent that I don't, which I now agree with fully. I just need telling straight sometimes. I can't put into words just how FRUSTRATING it is though, I was THIS CLOSE to finishing my degree on time along with everyone else. My assessment is being re-scheduled for next week and I'm just hoping I'm feeling a lot better by then and nothing else gets thrown this way to knock me off course. 

Fingers crossed!!!! 

The hospital window.

Well here I am feeling very sorry for myself!

I spent this weekend of glorious weather lying on the wrong side of a hospital window. I took a whopping great big seizure on the way down the stairs :( I have absolutely no idea how far I fell or how long I was unconscious for but I can tell you it hurt!! I ended up with a nice bump cuts and bruises to my head and I twisted my leg so much it pulled the muscles in my ankle and knee. My knee is particularly damaged and very painful which will take a fair while to heal :( So for now I'm armed with crutches and it takes forever for me to get anywhere. This was Friday last week and still bruises are appearing!

Good news is that they managed to get a cannula in ready to pump me full of whatever needed FIRST TIME around!!! I have unbelievably shy veins and usually end up looking like a pin cushion whenever they need to get even the smallest of needles in me. So this 9even though it's in bad circumstances..) was a surprisingly good moment! 

This is what I woke up to one morning... sunshine... around here we hadn't seen any for what felt like forever with the weather being almost constance rain, grey clouds, low temperatures and just plain miserable. So to see the sun streaming in was not fun! 

It started off unusually quiet for a Friday night in the city... but it soon filled up! Plenty of people came and went with all sort of things wrong with them. I hate seeing people hurt or poorly :(

Thankfully I only had to stay there a couple of days because I have some awesome friends to fall back on :) and 'supervise' me :D Although I did have to bend the truth a little bit when they said now make sure you don't do anything to stressful this week and take it very easy. "Yes doctor, I mean it's not like I have my degree finals this week or anything...." WRONG

So yes... that was my wonderful weekend.... x 

Neurology Appointment

My clinic letter arrived in the post yesterday and it reminded me that I hadn't written about my last appointment with my neurologist. It feels like it was ages ago but actually it was only at the end of March.

It was pretty standard really. Go in, explain whats been going on, show some evidence, leave.

My friend came with me to help explain what happens during my seizures which is a massive help. Having someone else's point of view is very valuable in determining exactly what happens. The best I can explain myself is the random patches that I remember which is next to nothing apart from odd sensations in my head and hands and the pain, aches and fuzzy confusion after. Said friend has also been with me when I've ended up in hospital and I had seizures while we were there. Listening to her talking with my neurologist was quite uncomfortable. It is still very strange to hear someone talk about the things I do without me remembering a single thing. For example during some smaller seizures I would look awake and like the seizure had finished and she would try and get me to talk but I was lying there completely unresponsive.

I also showed a video that another friend had captured of me when I was stuck in what I call "partial- seizure mode". The write-up of the video in the letter just basically explains what I do like eyes massively deviating to the right yet my left hand and arm does some strange jerking and twitching all whilst completely out of it. The neuro does point out how it was rather a long time to be in that state. There's not really much more I can say on that matter...

After talking for a while my doctor she said that she was going to book another EEG as the last one I had was about a year ago and thinks have changed a lot since. I am also to be booked in for a few days of video telemetry in hospital. Hopefully they will throw up some clues as to where to go next. Thankfully I'm not having to change any of medicine at the moment because she wants my tests done whilst I'm on my current meds (Keppra 2000mgs and Lacosamide 300mgs). Good news as my degree is coming to a close with some very important stuff going on to not be swapping or changing doses will mean less stress and sickness.

So now all I have to do is sit and wait for the appointments for my standard EEG and video EEG and hope that they don't fall on any of my deadlines!