Merry Christmas

Merry Christmas, have a wonderful, healthy, happy and exciting time over the next few days. I hope you are all where you want to be and spending time with people you love. 

I'm currently snuggled on the sofa with the cats and a sneaky glass of Baileys :) 

Love love

xXx

Festivities

Christmas is in less than a week! My housemates are leaving for home one by one. I finally finished my Christmas shopping yesterday and just need to wrap some remaining presents. I'm feeling rather rough today and it looks like I'll be spending the evening in bed so I figured I'd write about recent happenings.

My Christmas and New Year travelling around Britain to see family starts tomorrow so I won't be on here much for a couple of weeks I shouldn't think. I just picked up my bulk load of various medications to last me over the holiday period there is quite the stash sitting ready to be packed into my suitcase!

We had a house Christmas party on Saturday which was really fun! A scrumptious dinner was prepared and demolished easily by us all :) it was so good! We played Secret Santa giving a budget to each other of 5 pounds and only Asda to shop in... all at the same time.. it was hilarious trying to run away from each other in the ails in case we saw what someone else was buying. We all managed it though and gave each other some lovely, funny and gratefully received gifts. After dinner was the of course the obligatory game of Charades again a massive amount of fun, the kind where you laugh so hard you can't breathe! 

Right I'm in desperate need of a sleep, walking a long way in the pouring rain takes it out of you! x 

Private neurology consultation.

First and foremost... the hospital was like a 5 star hotel!! It was so clean and inviting and the staff where happy and smiling, when we were in the waiting area it felt more like we were waiting to have our room keys handed to us than waiting to see a consultant. 

We (my mum and I) went in as if I were a fresh new patient and went over everything we could think of at the time. The neurologist seemed very nice and I felt very at ease talking to him and discussing everything. A lot of the time I tend to feel somewhat intimidated when it comes to medical appointments mostly through faults of my own though. However I feel like I could handle an appointment with him by myself and not feel stressed that I'm taking to much time to explain everything or having to repeat information that I'm being told just to make sure I understand. Most importantly, I feel, is that he seemed interested, he listened carefully and asked plenty of questions. When I showed him photographs and videos he looked at them time and time again replaying and pointing at certain things asking me about them as I went along. Obviously I'm clueless while seizures are happening but he wanted to know what people had said and if they had mentioned I do the things he was watching in the videos at different times and things. 

When I explained that I've lost some vision in my left eye which had been picked up by the hospital and opticians on separate occasions since August yet nothing had been done he seemed quite shocked. He asked if my doctor knew to which I told him I'd taken the opticians results there myself and handed them in and seen him in an appointment after that and asked about it, but still nothing further has been said about it. My neuro then declared he would send me for an ophthalmology appointment at the hospital (NHS thankfully money wise) then discuss the results and further tests/treatment if any with me at a later date. This then lead onto my constant headache that is getting me further and further down at the moment. He couldn't really say all that much about it though apart from he wants to review all of my past scans and see where to go from there when I speak to him next. 

The immediate plan is to increase my medication Lacosamide (Vimpat) from 300 mgs per day up to the maximum dose of 400 mgs per day. To go alongside my Keppra which will remain at 2500 mgs per day. If this increase doesn't work then I will come off Lacosamide altogether and try another medicine. He did mention one but I can't quite remember which one... Lamotragine rings a bell though. I am to keep taking Clobazam as a rescue medicine as it well and truly does the trick when I need it. 

My Video Telemetry results still haven't come through so he said that as soon as he has them he will examine them then write to me with the (if any) findings. These cannot come soon enough for me, they could tell a crucial story and not knowing is driving me crazy. 

I have now been placed on the waiting list to see him on the NHS he warned me that this may take some time (believe me I'm used to it) in the meanwhile he is not taking me off my current neurologists list as I am well overdue a review with her I should go and see her if an appointment becomes available in the meantime. It just so happens that they are both in regular contact with one another as colleagues and he will be discussing my case with her so that she is in the know that I have been seen by him. Long term wise though I am know on his list which means I will be transferring my care over to him here in the hospital close to where I live (literally 2 minutes down the road) so it will be much easier to get to an appointment. 

I didn't realise just how much I was longing to know that someone is looking over my case and trying to help me. The relief is immense knowing that a fresh pair of eyes scanning over my notes coming up with viewpoints and knowing that my file isn't just sat waiting on a shelf gathering dust. I'm still going over everything in my head at night, there was a lot to take in and it's taking me some time to think through all the information.

Everything seems to be on the move again now thankfully. Back to the NHS now though so we'll just see how long it takes further tests, results and appointments come through. I'm not holding my breath in the meantime... I'd be rather blue! 

Friends and neurologists.

Tonight I'm meeting my new neurologist in a private hospital. My notes, video's and witness accounts are almost ready to go. I went to collect my notes that my GP prepared for me and half my information isn't included! Good job I make copies of everything I receive before I take them over to them I'll just show them myself. Not impressed I have to say. The nerves are kicking in but I'll have my mum with me and we are going to get something sorted, we're not leaving the hospital without a plan of action that's for sure. 

Anyway a friend of mine I lived with at university came down from North Wales to visit for a couple of days on Sunday. It was so good to see her. We talked constantly about everything life wise, explored some of Cardiff and went shopping (of course) along with treating ourselves to a couple of meals out in restaurants :) Had some amazingly tasty food! The BEST news is, she may well be moving down here permanently very soon :D I really hope it all plans out and we end up living together again, that would be amazing!! 

Hopefully these little walks exploring the city will become a regular thing... 

Big decision - Private consultation.

My mum and I have come to make a big (and expensive) decision. I am going to have a private consultation with a new neurologist. 

With everything that has been going on and getting absolutely nowhere with being able to see my current neurologist on the NHS, something inside finally snapped and after a few phone calls between my mum and I the decision was made. After receiving some emails from my mum following our discussion she went on to research various neurologists and emailed me with some choices. Yesterday morning I asked a few people their opinions on a couple of them and any experiences they had and I received a very positive reply to one particular neurologist. Within minutes I made a phone call to the private hospital and booked an appointment. I've never had any dealings with the private medical sector and was expecting them to offer me an appointment early next year... I'm booked in for a consultation on Tuesday evening. THIS Tuesday!!

It would be nice to maybe get a bit closer to some answers. My results from my video telemetry aren't ready yet but I can't wait any longer. If I put the telemetry to one side, maybe this doctor might be able to help me find out what is causing my constant headache or the worrying change in my field of vision that the optician and hospital picked up on a few different occasions yet nothing had been done about either. Each time something like this has thrown a complication into the mix all I've heard is "you'll need to see your neurologist about that" and placed on more medication with increase after increase and hospital stay after hospital stay... It's scary to be left on the side lines when something obviously isn't quite right. I might be able to come off some of the painkillers I'm on, or change something in order to kick start a reaction, or maybe nothing will change. Who knows. 

Tomorrow I will be spending the day gathering all my paperwork ready, be it old clinic letters, videos, witness accounts, or anything else I can find and think to talk about. My GP has prepared a referral letter and produced copies of all my recent test results ready for me to pick up on Monday to take with me. My mum is travelling down to meet me during the afternoon and then we will be going to the appointment together.

It's a strange feeling that maybe, just maybe, I might be about to progress further with my condition be it positively or negatively at least I can learn to deal with it rather than sitting and waiting constantly. Currently I feel like my life is on hold. I'm not really sure what to expect to be honest... I'm trying not to allow myself to get too hopeful though, but even if it's just another person looking through my case and offering up some suggestions and opinions then it will be worth it. 

Weekend celebrations!

We had such a nice weekend here in the house :) It was one of our housemates Sameena's 30th birthday celebrations which of course meant a house full of people dancing the night away!! 

HAPPY BIRTHDAY SAMEENA!!! X 

Umm so this very rare occasion is me dancing bollywood style in the middle of a group of people... I'm not entirely sure what happened.. one minute I was sat talking with people and the next I was up dancing... IT WAS SO MUCH FUN!!! I'm going to have to get practising on some moves for next time hehe! 

There was plenty of music, dancing, laughing and food! 

The morning after brunch, scrumptious food for a tired bunch :)

I haven't laughed so much in a while and to feel so well and happy felt amazing, bring on the next gathering :) 

It really was a lovely couple of days with a house full of people really enjoying themselves, and everyone had a brilliant time, what more could you ask for! 

xx