Merry Christmas and Happy New Year!

It looks like I've abandoned my blog... I haven't though I promise!

It's just been a very busy time here and just as it slows a little Christmas is coming right up swiftly followed by the New Year. 

Short post... I'm glad to report I've finally moved to live up North with my parents and younger sister wooohoooooo! My tenancy is signed over and as of January the 1st I will have nothing to do with those people ever again! Unfortunately I did have to leave a ton of my things down there as my dad had to collect me in the tiny car as the big pick-up broke down right beforehand... typical.. but I'll grab it before the new person moves in. It can safely be said that I feel so much better for it already. 

A little early I know but have a wonderful Christmas and a very happy and healthy New Year xxx

The doctor, the med students and I

Well life is a bit of a confusing mess at the moment due to being stuck in limbo between North and South wales!! I don't know where I have to be and when at the moment for the most part. 

One thing I do know though is that tomorrow evening I am boarding a train up to Wrexham in North Wales. This is because Thursday I will going into the hospital which just so happens to be the very place I was diagnosed with Epilepsy over three years ago. My reason for being there is not for any appointments but a meeting with a group of medical students. A friend of mine is a doctor currently based at the Maelor hospital and is a mentor to this group of students. She has kindly asked me to go in to discuss with the medics my life living with Epilepsy. From the process of diagnosis to how I feel during appointments with medical professionals. It will be interesting to see how it plans out and what will be discussed. I've been asked if images of my injuries gained as a direct result of Epilepsy can be shown to them along with video's of my seizures. 

But for now it's time to rest a very achy head in bed. 

Off to be kept and eye on!

I'm going away for a little while to stay with one of my sisters and baby niece. It's getting overwhelming staying in this house with people I don't get along with while my seizures increase. 

I'm trying to sort out renting my room to someone who can take of my tenancy so I can leave for good but it's taking a fair old while. So while I wait for someone to come forward which will hopefully be sooner rather than later my little sister has offered for me a place to stay so I can be kept an I eye on. There's no way I would have said no even if my stubborn side where to come out as I get to spend time with her and baby Willow. Wooohoooooo! 

I'm not taking my laptop with me so no blogging from me for a little while x 

Drug-resistant Epilepsy?

Would anybody mind if I just climb into a little box in a corner and never come out?

I had a neurology appointment Wednesday morning and I'm now classed as having a refractory Epilepsy that may well be drug-resistant. If there's one thing that I have requested of my neurology team is that they are honest and if needs be frank with me something thankfully they have learnt to be.

Once I got around the original person who invited me into the little room for my appointment (long story which wouldn't be fair to put on here) but lets just say I will not be seeing that person again. Anyway once my actual neurologist was in the room we sat together and went through recent notes, seizure diary and he watched recent video's of my seizures that have been caught by people. My notes from my last appointment in September however have completely vanished... there's absolutely nothing on the system, as if I never went in?? Very strange and believe me neither I nor my doctor were very impressed! After going through everything we came to several conclusions as to what will happen next.

Despite worries that medication may not work for me for now I'm being tried on Eslicarbazepine Acetate (Zebinix) which is actually a medicine I have never heard of before! It's prescribed to adults with refractory partial seizures with or without secondary generalisation. I of course come under the title of "with secondary generalisation" as my partial seizures often run into Tonic Clonic seizures. He printed off the prescription straight away and handed me the paper to take down to the hospital pharmacy. Normally I have to take the to my general doctor and wait for the pharmacy to process it. So I able started the medicine the night of my appointment. All I can do is hope that it works or at least lessens seizures a bit, either in their frequency or intensity.

I am to have a fresh MRI scan as he is sure there is a cause for my seizures and he reckons it's in the left side of my brain. He told me in a follow up email today that this is due to the presentation of my seizures in that most of the movement it focused to the right hand side of my body. My last MRI was 2 1/2 years ago and he wants to compare that one with a new one. I've had various CT scans but they don't provide a detailed enough image. 

He has also now reffered me to a specialist neurology centre to carry on my care. I have a very "complex" case and need to take things a step further to confirm if I do indeed have a drug-resistant Epilepsy. For now though I will wait and see if these new tablets make any difference and carry on my life. I have to say I will miss my current neurologist as he knows how to listen when needed, show interest and realise that I can have a say in my care but perhaps most importantly he is honest. Something that is invaluable when it feels like your life is completely out of your hands. 

Life Changing Move

It's official, I've put my current room tenancy up for rent. I can't quite believe it but I'm now definitely moving back up to North Wales to live in the very house I grew up in. I lived there until I was about 12 then moved away. My current home is in South Wales where I have been living since starting university well over 5 years ago and it has become a place I love dearly.

I've relocated my live several times already each with hundreds of miles apart and believe me it is a very tough thing to do. This time around though I'm not starting afresh somewhere new. I already have beloved friends and family there and a familiar place to settle. It still breaks my heart to have to leave South Wales though. I have strong relationships here and it's where I grew into my adult life but unfortunately it's just not suitable for the way things are in relation to my health at the moment. 

Emotionally it's tough, I had to ring my parents up before I pressed the submit button on the advert just to check that it was the right thing to do. I'm scared, sad, excited and plenty of other emotions all mixed into one. I hope it's true what they say and everything really does happen for a reason.

Sunday morning seizure

It was a tonic-clonic and it's hit me hard. A friend happened to be around for a quick cup of tea when it hit. Luckily she's used to seizures both in her job and through me so she quickly sorted out the basics and whipped out her phone to film some evidence for me to show my neurologist. 

There are a fair few video's of my seizures now and I don't like to watch them at all. But this time she was quite distressed as to how blue I turned during this one. Intrigued I watched it and I too have been left shocked. I've only watched it the once and don't plan on seeing it again as it's really got to me mentally. Physically I'm still feeling the effects of my seizure, I spent most of the rest of yesterday sleeping and have had a few naps today. My muscles are still sore and a head ache is looming over me but is slowly washing away thankfully. 

I have an appointment with my neurology team on Wednesday morning which I definitely am not looking forward too. I'm afraid I'm going to have to get a bit stern with them as there are some problems that have to be solved including my missing prescription and notes. Joy. 

Quick blog break!

I feel like I've abandoned my little blog I haven't I'm just a little lost in amongst all things life at the moment. From amazing need for huge amounts of sleep and stressing trying to plan my move from South to North Wales to pretty much begging my neuro team to send my latest notes to my doctor so I can start my new medication (STILL) and starting a new volunteer role that has already seen me in some very interesting places. It's all going on and it's exhausting! 

Be back soon x