Change of plan.

Well it turns out my prescription was late and so didn't arrive until the day I was leaving for my little trip to see family. The pharmacy where I live can't get hold of the medicine I need for a least a five days each time I ask for it as they don't stock it, therefore have to send away for the meds to be delivered. It's strange given that I live in a busy and populated part of the country but I guess Vimpat just isn't that widely dispensed around here. It's the Vimpat that I am supposed to me increasing while the Keppra stays the same. So of course this means that my increase is delayed until I get back in just under a week. Any delay in anything is annoying to some extent but I'm taking this as a good thing as it means I can really enjoy my time here. My sister and I have already been baking (surprisingly successfully!) helping out with horse stuff, trying to befriend a stray and incredibly timid kitten that has turned up on the farm and just generally catching up for lost time with each other :) It's been nice and given that my Nan and cousin are coming to stay for the rest of the week tomorrow morning things can only get better :D 

I've had a couple of smaller seizures that I've noticed by missing little snippets of TV and a couple of balance ones but nothing too major (wooo) fingers crossed the tonic-clonic's stay away for a while and I don't have too many smaller seizures either because we have lots planned! 

I'm disappearing off..

..into a bubble for a while. This evening I'm hopping on a train up to North Wales to stay with my dad and family for a week. I can't wait to see my family especially as there are two more members coming over to stay for most of that week aswell.  I've had this little trip planned for a while. I suppose it's good timing in some repect to be changing some doses medicine wise. I usually get pretty sick when I change my medicine in any way and it just won't be fair to stay down here with my housemates I'm sure they wouldn't mind but they need to study hard and I won't be helping them any by seizing, mood swinging and sleeping all over the house! It's not fair on my family either of course, but I feel that little bit more comfortable, I hope they don't mind. It sucks to know though I won't exactly be myself while I'm there, but I will try my best :)

This little diary will be closed to my ramblings for a week or so. 

X

Project Image

Tonight I have been experimenting with some quick idea's for my uni work. I asked my housemate to show me what one of her most precious objects in life was. Something that she is barely ever without. No matter where she ends up in life this item would go with her. Something she can see herself keeping for the foreseeable future.  

Eira chose her Prayer Beads. 

I like to think everyone has something so dear to them they can't even possibly think about it not being in their lives. No matter how small. 

If I were to ask you..

"Ideally, what is your idea of a stable life?"

How would you reply?

I thought it was a relatively simple question if I'm honest, I was very wrong. As part of my initial research for my proposed final year university work I asked a varied selection of people from a range of different backgrounds and upbringings to message me their response to this very question. The replies I have had so far are fascinating, heartwarming, heartbreaking, truthful, surprising... you name it. The main thing I have come to realise so far is despite how different we all may be there are common links between the general response.

I am still needing to answer this question for myself. It's incredibly hard. I've started thinking hard about it though. Time for me to get that thinking cap on some more! 

Priorities?

It's all work work work (and lots of napping) here at the moment. My prescription for an increase in my medicine arrives very soon. But I have a very very important seminar this Friday in which I have to present my ideas, research and work already created to the new group of students I've joined. I've chosen to hold off the increase until after this simply because I get nervous enough as it is when it comes to trying to put across ideas etc especially to a group of people I barely know! From past experience I can tell you that any change in my medicine sends me into another world physically and mentally and I absolutely cannot have that on top of my already growing nerves.

I keep thinking to myself, surely my health is a little more important than my education!?!

But given that I wont be able to get much in the way of university work done for probably well over a week I think just this once I'm going to have to put my uni stuff first... just for a couple of days.

I've been working hard to prepare myself for this seminar, when I can, I can't let it all go to waste. It's very annoying knowing that I won't be able to work to my full potential for a while though. Urgh. But that gives me all the more motivation to get as much as I can done before Friday. So for the rest of this week it's notes, research, notes, photography, more notes, experimenting, notes, reading, notes, trying to take in as much information as I can and yet more notes!

Upping the meds. Again.

I had a phone call with neurology today. Big sigh, I have another medicine increase coming up :(

It's good in the long run, of course it is, I mean it will hopefully mean that I gain some more control over seizures if not full control. But I know that it means a fair while not being myself. The way I term it to other people is it's as if I turn into a zombie for a until my body gets used to the new dose. I get tired, any motivation towards anything goes straight out the window and my mind wants to get up and go places but my body just out right refuses amongst other things. People say I turn into a completely different person. That upsets me the most. I hate not being me. I loose control. This delightful phone call came just after I'd had a chat with my tutor, a confidence boosting chat about life and the course and how much more positive everything seems this time around. In fact he said I seem like a different person in a positive way compared to this time last year and can tell I'm learning to live with it all. I needed someone to tell me that. 

I shouldn't really complain about what will hopefully only be a short term affect. But it's just the timing is terrible I've just started back at uni, things are getting serious in terms of being able to graduate this year already, I'm seeing some of my family I barely ever get to see in about a week and so on. I guess I just have to accept that I am going to be on these mind altering/slowing/clouding medicines for the foreseeable future. I'd much rather have that than the seizures themselves. I need to focus on the long term positives as they say. Sometimes it's just harder than it first seems.

I really hope this is the last time I have to increase any dosages. 

Ok venting over.

In good news however I was given a free hot chocolate today before a lecture at uni. It's like someone new I wasn't feeling so great. Oh I had a cheque in the post yesterday saying that I have money owed to me from the tax man. So to cheer myself up, I'm off to spend some of it on a pair of shoes. Fact.

Oh Comely

On a lovely trip to Chapter arts centre gallery in Cardiff the other day I was browsing around their amazing little arty shop. I spent forever trying to decide which of the vast variety of books, journals, and magazines to buy and add to my little collection at home. 

I found Oh Comely Magazine. It's so so lovely. A nice laid back afternoon read. Full of anything and everything creative from art and photography projects to tasty recipes :) 

There nothing like a good dose of creativity in the day especially an otherwise dull one. I'll definitely be reading this from now on!

 

X

Head meets doorframe..

AGAIN. Yesterday morning/afternoon was just plain rubbish.

My balance was completely off from the moment I sat up in bed. That fuzzy, clouded brain was throwing a number of little seizures at me. But unfortunately they are impossible to dodge so all you can do it sit there and let them do what they want to do. I couldn't read, write or watch TV even trying to string sentences together was difficult just sleep on and off. Anyway at some point during the morning trying to get back to my bed from the bathroom I completely lost my balance all together and caught a lock on a door frame on the way down ending up with a nice cut on my cheek frighteningly close to my eye to go along with a rather sore hip. So yet again I'll have to walk around with a nice injury to my face. I shouldn't complain really as it's not as bad as some of the black eyes, cuts and bruises etc I've had to walk around with that are in plain sight to everyone. It's then that I can just feel people wondering what I've done and coming up with their own conclusion that I never get to hear. I actually prefer when people just ask, I have no problem with telling them. It's just those moments when you have to walk down a crowded corridor or something with people staring, sometimes I just want to stop and shout "I had a seizure alright? Deal with it!" but I am far to shy to do that! I suppose even more luckily it could have been a massive black eye and given that I have a lecture with my class tomorrow who have no idea I have Epilepsy... that would have been beyond awkward.

Ok rant over. My housemates and I are off to Cardiff today for a few hours to visit a brilliant art gallery and as I'm feeling pretty good today surprisingly,  although a good nights sleep was a brilliant help, I can't wait. :)

Sleep patterns

I seem to have fallen into a new sleep pattern. In bed by 10pm and asleep by 11pm and wake up between 7 and 8 in the morning. Now to some people of course these times would be completely normal but not for me. I usually sleep for about 11, 12 if not more hours a night! And of course I still steal a nap when I can/need, but that goes without saying.

I'm loving it though to be honest it means I get up earlier than my lovely housemates which gives for lesser fun things, chatting etc to be taking place which without fail will distract me :). I mean what would you rather... sitting at a desk for hours writing up notes OR someone announcing they want to hop in the car and visit the pet store and see the animals?... I mean don't get me wrong I LOVE university and pretty much everything that comes along with it, but I know which of the choices I'd choose. (Hint - fluffy bunnies and funky looking fish!)

My mind is freshest during the morning usually anyway so this way I get more 'fresh mind' time to get the important stuff out of the way i.e bills and work.The only bad thing is getting more energy lows during the day. Whether that's the smaller amounts of sleep or something else I don't know. I don't think I ever feel completely awake anymore actually but then I guess that comes with the seizures be them brilliantly obvious of extremely subtle believe me the bleed any energy sources dry. Oh and of course there in the medicine on top of that. Fun stuff!

Any who I don't know how long it will last as I don't get much choice in when I need to sleep. In facgt I've just used writing this as a distraction from work so I had better crack on! x

What a glorious weekend.

I did my usual disappearing act for about 5 days over the weekend. It was nice, really nice actually :) And as most people living in Britain will agree the weather was AMAZING!!!! It was the hottest October weekend since 1895. Crazy! Definitely chose a good weekend to bugger off from the real world that's for sure. 

Here are some quick snapshots of my little adventure from a lovely countryside farm set on the South Devon coastline <3...

 

Good relaxation time was had and again I cannot believe how summery and hot the weather was! Despite the sunshine I did gain a lovely little cold to bring back to the house with me. My housemate is sniffling as I type :( Woops. Guess I have some apologising to do...

This weekend will be very different as I have a ton of university work to get done before Tuesday. Fun fun! X

One Day

'That was a memorable day to me, for it made great changes in me. But, it is the same with any life. Imagine one selected day struck out of it and think how different its course would have been. Pause, you who read this, and think for a long moment of the long chain of iron or gold, of thorns or flowers, that would never have bound you, but for the formation of the first link on that memorable day.'

Charles Dickens, Great Expectations