Travel insurance.

I'm going on a little trip to Italy in October with my Nanna and I simply cannot wait! Trying to get someone to insure me to go however is proving an absolute nightmare!!!

The questions they ask are so set in stone it's ridiculous trying to mould them to this condition as is the same with many more by the sounds of it. I am constantly hit by the image above which is basically a big fat NOT IN A MILLION YEARS WOULD WE INSURE YOU!!! Quotes have ranged from not giving any at all to the average being £719 :(

By some well earned miracle though I FINALLY (after spending forever on the phone) managed to find some for £84 which given that the base rate of this package is just £15 before medical screening is still A LOT of money. Well at least I can definitely go now though I don't have to worry too much if I end up getting very poorly as much as it would be horrible at least my Nan won't have to stress to much :)

It makes me so angry I mean what on earth is insurance for if they are too worried you're actually going to need it?! 

Ophthalmology

So I popped to the hospital on Tuesday as I had a review with ophthalmology. Sadly there is no change in my eyesight where I'm missing a rather large chunk in my upper left quadrant. I was really hoping it would have magically improved in someway as it's my brain causing it rather than my perfect (doctors words!) eyes. 

It was pretty standard appointment involving three different field vision tests then in to see the doctor to go over results. Last time I was in my consultant requested I be sent for an MRI scan to check if any bunches of blood cells etc are pressing against any optic nerves. When he asked me if I'd been for my MRI I simply replied no but I've got an appointment on Thursday for  CT head scan. His face was a picture of anger... and to justify it he said how he had specifically requested and MRI for a reason (don't ask me what...) as opposed to a CT. Any way long story to include a very angry doctor short when I was walking back home from the hospital my phone rang and it was the consultant saying that he had spoken with radiology and I was to still go along to the CT appointment only they are now adding contrast dye to the mix (which I am NOT looking forward to as it stings!!) and I'm now on the waiting list for an MRI. 

I have a check up with him again in 3 months time where yet again I'll take some field vision tests to see if there is any change in my peripheral vision. Hopefully I'll have some results waiting for my from my scans to but that might be wishful thinking when it comes to and MRI! 

It just shows!

I was dreading having to tell my new housemates that I have Epilepsy and I mean DREADING it. It's different from telling someone in everyday life that you won't be spending a lot of time with. I felt like saying yes you want to live in this house but actually it comes with baggage!

On the various times we have met now to finalise tenancy details etc we've been gradually getting to know each other and there have been a few times where I've managed to sneak the fact I have seizures into the conversation. It feels good to have it out there and they are in the know at least. I will have to sit down with everyone properly together though when they all move in to discuss exactly what happens and the different situations that arise. It's only fair for them to be prepared! 

As it turns out one housemate used to suffer from seizures when she was younger and the same for her daughter. So it just goes to show just how common this condition is!

Another EEG

Unexpectedly a few weeks ago I received an appointment letter requesting I go and have an hour long EEG recording done.

I went today... just the usual, came out with my hair in an absolute mess and typically it wasn't raining for once so I couldn't even hide it under a hood haha just had to stroll back to my house from the hospital looking like I had a birds nest on my head!

During the hyperventilation stage I felt like I was going to pass out but I think that was just because it was added to the heat and being tired. I managed to stay conscious though so that's always a plus! I've had three standard one hour EEG's since I was diagnosed two and a half years ago. The first time I consented to having the strobe light tested on me to detect any photosensitivity but it was negative thankfully. The last EEG I had I asked them not to show the light as the headache it leaves is horrible. This time though for some reason I allowed them to test it again but that ended up in instant regret as I felt like I was looking through a kaleidoscope of colours and lights by the time it finished and the headache I have now hurts!! 

Afterwards I asked the physiologist if he had seen anything funky going on both on the screen and via me but he said he can't give me any answers until my consultant has looked through the results. He did say that he didn't notice anything obvious coming from me though so I'm guessing nothing happened seizure wise. I'll just wait and see.. 

Next up a video EEG again just waiting for the call on that one, could be waiting a LONG while though! 

My new space

Ok so I feel it's high time I post something positive!

I recently moved rooms in my house. This one is much bigger with far more space to fall and miss bits of furniture on the way down always have to keep these things in mind! I LOVE it, it's perfect for me with a huge bay window, lots of cute pieces of furniture and a double bed (very happy to have one of those back again!) My last room was very small so I hadn't been able to get out all my little trinkets and photo's etc to put up and around. Now I have plenty of room to dot the things I love around the place and have been having a nice time doing so. 

I have a little desk area so I can keep work stuff separate to everyday life things like relaxing. Makes for a clearer head I believe. 

I have a nice bright window next to my desk to keep the area bright enough especially when using my laptop for too long. Nice to casually look out and daydream too :) The pink flower was given to me by a fellow patient when we were both stuck in hospital for a long time, it felt right to put it in the bright light looking out over the world. Simple gestures can make such a huge difference sometimes. 

I love a good bit of greenery around so some more pot plants are definitely needed! I have one that just so happens to be a Jade plant which I only found out by chance over a year after I saw it sitting on it's lonesome looking all forlorn and shabby in the shop which is what made me buy it. Faithful plant that one, it's been with me a long while and travelled from place to place with me <3 We were meant to be! 

It's been nice having a little project to work on away from health stuff and stressing about work. I'm not quite finished yet though!

Repeat Situation

Last night was another night spent staying over at a friends house who very luckily lives very close to where I work.Yet again I had seizures while I was in work ending up in the medical centre on campus. I took two doses of my rescue meds Clobazam and still went on to have a seizure :( it scares me that they are getting longer.

After my recent job review I am no longer allowed to be alone on campus at any time and I must work where there are plenty of people around me. I like my own space and it's very hard to concentrate on my job when there are people chatting all around me. But the thing that bothers me the most is knowing that inevitable some poor unsuspecting person is going to have to deal with a situation involving a seizing me. Yesterday it was one of the other interns who has been helping me with researching as of course I'm a little behind due to increased seizures etc. She dealt with it very well though (not that I would have assumed any different) and I'm so very thankful <3 I told her I was getting warning signs which is a tingling in my forehead which builds up. We got to the medical centre where I lay on the bed with said intern/friend sitting watching over me with the nurse. We all just sat and chatted with me in and out of it trying to act "normal" if that makes sense. My other friend who is more than used to my wobbly ways came and met us there and we stayed chatting until I finally seized that horrible feeling out of my system. At first I used to find it very embarrassing knowing I was going to seize in front of people I know but nowadays I value the support and knowing someone is there when I come out of the seizure/s a huge amount. 

It's a very good job I carry extra meds with me at all times along with my rescues meds Clobazam. I keep them all together in a handy little medicine bag I purchased from Medpac a little company who specialise in providing cases, bracelets and cards for those how need someone to be aware of their specific medical needs. I would highly recommend them to anyone! They come in varying sizes so suit different needs :) 

I'm so lucky to have such supporting people around me.