World Encephalitis Day Competition

 

World Encephalitis day is Monday 22nd February 2016. #WED222 is used to help raise awareness on social media for this amazing day! This year the Encephalitis society have decided to run a competition with the theme ‘Year of the Narrative‘ – they need you to enter and win some amazing prizes!

The competition focuses on Short Film, Digital Art & Photography. Your entry could be anything: a piece of digital artwork whipped up on your computer, a photograph snapped on a camera or mobile phone, or even a short film. You need to get your entries in by 31st January 2016 to be in with a chance of winning!

Their hope is to raise awareness about the condition which affects 500,000 people around the world each year. I myself was diagnosed with Anti-NMDA Receptor Encephalitis in August 2014 and it has changed my life completely, early diagnosis is key! #showyouknow

Please show your support by entering today!
Visit www.worldencephalitisday.org for more information and to ENTER!!!

Please watch the YouTube video for more information!
Click here

Good luck & I look forward to seeing everyone entries on the website, 🙂

P.S I am in no way afflicted with this competiton, I am purely trying to help raise more awareness and help get more people entering the competition! I will also be entering the competition so good luck to everyone!!!

Update of August, our road trip to Gatwick airport and the flight to Luxembourg.

So since writing about my own month of madness, I have found out some more information. Most of it is text conversations between me, Martin and my mum. On Monday 4th August 2014, I text Martin at 10.07am saying

I’ve only just realised we are 4 days into August. I can’t even remember it. I’m getting more and more comfused everyday.

Martin suggested I go for a nap after dinner. I walked into the bedroom and collapsed on the bed and fell straight asleep. He tried to wake me to move me to a more comfortable position but I wouldn’t respond. I then sat bolt upright and kept going on about tasting the dream. I got up and walked to the toilet and kept repeating I can taste the dream. Martin said I was looking right through him when he was speaking to me as if he wasn’t there. I sent my mum a whatsapp message at 23.28pm

i just feel really weird. I think my body is in shock as I can’t walk properly again, my legs are really sore. I’m not dwelling on it I generally am just in a daze I’ve tried getting out of it by having a bath and doing washing but as soon as I’ve done it I can’t remember doing it

she replied by saying I was probably exhausted from having a seizure over the weekend and to go to bed and let my brain rest. I replied at 23.32pm

okay mum sorry I just feel like I’m going crazy but I’m trying to be normal

I’m telling my mum that I’m writing everything to her so it can’t go missing because I keep losing stuff. The next day I woke up and my chest was covered in ‘hives’. One of our text conversations on the 5th August went like this,

Me: did I show you mango flavour grapes last night or am I going crazy?

Martin: yeah you did haha morning beautiful how are you?

Me: I did! Where? I feel like I’m going crazy Martin. My face feels swollen and I don’t remember going to bed. I feel so confused and tired you?

Martin: on Facebook maybe? I don’t know. And you were shattered last night like hit the pillow and you were gone haha I’m ok just tired.

Me: did I show you it? I’ve seem candy floss flavour ones today.

Martin: yeah you did but only quickly. How are they getting grapes to taste like stuff haha it’s cool.

Me: I’m so confused.

Martin: I know you are baby 😦

The 6th August was when I started to realise something was wrong… Another text conversation with Martin..

Me: what’s happening to me?

Martin: you’ve got an ear infection that’s messing with your head baby, how are you feeling?

Me: what happened yesterday? I’m okay just confused but I feel fine.

Martin: you just didn’t remember anything, like you didn’t know who I was to start with or that we had a flat. It all came back to you though.

Me: dad says you can come round for spag bowl tonight, I think I’ve gotta stay with him today.

Martin: okay thank you and yeah it’s for the best.

Me: am I really that bad? I literally don’t remember anything.

Martin: well there’s your answer then

Me: am I ok?

Martin: yeah why?

Me: just feel everyone’s being nice and I can’t go home.

Martin: it’s best if you’re with someone just in case something happens.

Me: do you think it’ll happen again?

Martin: I don’t but you keep having moments where you forget everything so being around someone is a good idea.

Me: yeah it’s so weird. It happened earlier whilst eating. I couldn’t remember who made it and why I was eating it. I’ve got alarms set to keep me taking medication.

Martin: yeah that’s a good idea.

7th August was when it started getting weirder, I was admitted to hospital that night. Our text conversation that morning went like this,

Martin: morning beautiful, how are you feeling today?

Me: morning baby. I don’t know I’m crying.

Martin: oh no baby don’t cry 😦

Me: I’m living in my own world and tipsy keeps meowing.

Martin: she’s keeping you in this one haha

Me: I’m fine now. I’m not letting this happen to me. I’m using my breathing techniques and I’m tidying the house now.

Martin: that’s my girl 🙂 proud of you

Me: it just happened but I okay now. I called mum on viber and spoke to her.

Martin: was it the screaming again? 😦

Me: I’m not sure but i’m okay now I’m just gunna get something to eat and keep busy, just call me on your lunch!

After being admitted to hospital i text Martin at 00.40am

I keep shaking but apart from that I’m fine. Painkillers kicked in and so has the guales. It’s stopped me biting down. I just read our texts. Nothing like that seemed happening. I thought I was just being a drama queen.

8th August, realising I was losing my memory..

Me: I forgot I lost weight last night it was so weird. Please be here for 2.30!

Martin: that is weird and I will be queued at the door ready and waiting haha

I had my first CBT meeting on 14th August, one of our text conversations went like this,

Martin: How’d it go?

Me: yeah I’m fine. It’s the ear infection not me.

Martin: hmm I still think you’re a bit crazy 😉 only messing that’s really good news 🙂 how much better is this week than last week?! Haha are you gunna see a doctor about your other ear?

Me: shall I go to doctors?

Martin: it’s up to you, is it hurting?

Me: yeah I think it is. I have a headache.

Martin: won’t hurt to check it out

18th August – my first day back at work and I only lasted just over an hour, my conservation with Martin, I just can’t seem to give him a straight answer, looking back I feel so bad for texting him like this when he was at work, it was so hard for him!

Me: my ear made me go unstable just now.

Martin: oh right are you ok?

Me: yeah I am fine.

Martin: good.

Me: mum is taking me home.

Martin: you’re not fine then 😦 what time is she getting you?

Me: I’m at my dads, going to doctors to make sure the ear has cleared.

So Tuesday 19th August 2014, the flat is a mess, the turtles need cleaning out, we still haven’t packed and we’re leaving to drive to Gatwick airport in the morning! I am a very OCD organised person. I have a list for everything, I make a list for the list I need to do! So even I can see there is something wrong with me, I’m like a zombie, I can’t get out of bed, only to go to the toilet or sit on the sofa. I don’t recognise my cats, boyfriend or family and then I suddenly snap out of it and tell everyone I’m fine. I feel so tired constantly and I feel like I’ve got a cold. I’ve got a constant tension headache behind my eyes. Martin has to take the day off work to tidy the flat, clean the turtles and pack our suitcase. Once he had packed the suitcase, I then decide I need to have a list of everything so that we can’t lose anything. So poor Martin has to unpack and repack the suitcase writing a detailed list of everything in there.

Wednesday 20th august 2014 – the day our holiday started. We had decided to leave at 8am even though our flight wasn’t until 13.55pm but after speaking to my dad, he suggested we have a bit of a lie in and leave at 10. Needless to say I was not ready to leave at 10, we were going to asda before to get snacks for the car journey but we didn’t leave the house until 10.30am to go there! Martin woke me up and usually I would be the one waking him up but I just couldn’t find the energy to move. I have no memory of this but Martin said i was totally out of character not wanting to get ready even though we were going on holiday! We finally get in the car and get to asda, pick up some snacks and start our drive to gatwick airport! Driving up Martin said I was tired and agitated. He said I was acting a bit weird but mostly tired, he suggested I go to sleep but I couldn’t. Then a song comes on the radio and I don’t know it but Martin does and he’s singing it quietly. I bizarrely ask him to sing to me because I don’t know the song. Martin looked at me like I was a complete weirdo but sang to me anyway. I have no memory of this and he’s refused to sing to me since haha! I had my chance and it’s not his fault I can’t remember it haha! The song was Charlie xcx – boom clap, which has become one of my favourite songs now – it’s my encephalitis song. We get to the south terminal packing but we’re meant to be at the summer special parking so we have to go find that which is at the north terminal. We get to the check in and they advise us we are meant to be at the south terminal and we have around 10 minutes left to check in! GREAT! I can’t handle this and start to panic, we have to rush to get the shuttle train to the south terminal and arrive at the check in terminal to find out no one has even checked in yet so we hadn’t needed to rush at all! I’m on edge and I’m sweating. We get to the gate and board the plane, my dad had booked our seats so we’re sat at the front of the plane, seats 2A and 2B. I suffer from bad ears on planes so I put in my ear plugs and get my boiled sweets out when I realise I’ve brought the wrong sweets, I’ve brought chewy sweets! I start to panic, my ears are going to be so painful because I don’t have the right sweets, Martin tells me to calm down, suddenly I’m hungry, really hungry and I need to eat. I don’t know why I’m hungry because I had snacks in the car, Martin orders me a sandwich and crisps.

We’ve taken off and i start to calm down slightly, I take out my ear plugs and my ears start to pop from the pressure, it’s excruciating and I start to panic again. The pain is so bad and I start to fidget really bad, people are starting to notice but don’t say anything. The flight is only an hour and we’re looking to arrive 10 minutes earlier than planned. The pilot says that we are about to start landing, the seatbelt light comes on and Martin tells me to put my ear plugs back in but I tell him it’s too late and that they won’t work. He tries to reason with me but I’m adamant it’s too late to put them in. We start to land, my ears start popping and the pain is back and I’m crying. The plane lands 10 minutes early like the pilot said it would. I’m first up and push my way past Martin and run to the door. I’m the first person off of the plane, I run into the arrival lounge. Martin is left trying to get our hold luggage out of the shelves. The air hostesses ask Martin if I’m okay as they watched me run off the plane, he just says I’m bad at flying and my ears were hurting. He finds me in the arrival lounge and our suitcase is the first suitcase out on the carousel. As we’ve arrived earlier than planned my auntie angie isn’t there yet. I’m panicking again. I’m convinced she has forgotten about us and isn’t coming. We go outside and back inside and eventually find her and my younger cousin Claire. Martin says I’m relieved but I’m talking rubbish to my auntie. He says it was like having a hyper child, I was just talking about absolute rubbish that didn’t make sense. He said I was still stressed but since seeing my auntie I had slightly calmed down. We get in the car and start the drive back to my aunties apartment.

August 2014, my own month of madness!

My first seizure

Saturday 2nd August 2014

Like I said in my previous post I was obsessed with couponing and today we were driving 40 minutes to Morrisons to use £5 off £10 meat spend vouchers. We were going with my friend Hannah and this is when Martin noticed my strange behaviour, I literally ran into the store, I couldn’t focus on what I wanted and everything seemed really loud and bright. I managed to get everything I needed and paid for it and then I ran to the car like a mad woman, I couldn’t catch my breath or speak properly. Martin thought I was just over excited that we had saved so much but he did think I was acting a bit weird. We went home and spent the afternoon sorting out the meat to freeze it but I just couldn’t do it so Martin had to do. I just couldn’t focus. So I decided to get ready for the party we were going to later. We were supposed to be picking up our friends but for some reason I just couldn’t focus on getting ready, I was trying to do 100 other things at the same time and we ended up being late.

We were in the car on our way to pick up our friends, I was texting them and an argument started about how we were always late. Not a proper argument, just a silly, pathetic, nothing to worry about dispute but I totally flipped out. I started hysterically crying and demanded Martin turn the car around and we go home. He did as I requested and as we turned onto the side road off of the dual carriageway, I stuck my arms up in front of me like a zombie and started violently shaking. I was also drooling salvia and blood where I had bit my tongue and lips 3 different times. I fell unconscious after this. Martin pulled over and a girl passing by asked if Martin wanted her to call an ambulance. Martin said yes and called my dad who turned up. I have no memory of this, only what I’ve been told but I didn’t recognise Martin and when my dad approached me at the window I was terrified and didn’t recognise him. He asked me if I knew who he was and I said no. Where I had fitted so violently I had broken both my sandals and we later found out I had kicked something under martins car that has caused his heaters to stop working. The only memory I have is the paramedics walking me into the ambulance and lying me on the bed. We sat in a&e for around 4 hours, I was placed on a bed in a corridor. The doctors discharged me with anxiety attacks and a severe ear infection.

I was meant to do slimming worlds race for life on the Sunday morning but I was unable to do it.

On Monday I went to see a fit specialist at the hospital who said it was just anxiety attacks but did no tests to rule anything out. I tweeted at 9am

I feel so weird and I’m in so much pain, 😷😴😖

I then tweeted at 10.36am

I should not be allowed to watch rspca programmes #nocontrolofmyemotions #cryingmyeyesout 😭😪😥

as you can see I had lost control of ny emotions and crying at the littlest things! I was texting Martin at this time telling him how I couldn’t stop crying and he was asking me to stop. I went back to my gp who prescribed me ear drops and said it was just an ear infection. I then tweeted at 16.44pm

Atleast I’m not completely mad 👂💥

I didn’t go to work Tuesday 5th August 2014 and Wednesday 6th August 2014 and had to go to my parents to be looked after by my dad on the Wednesday. I tweeted my brother at 12.19pm on Wednesday 6th August 2014

just spent 10 mins trying to turn your tv on and now your wallpapers hurting my eyes 😖

his stripey wallpaper looked like it was moving and I couldn’t focus on turning the tv on so I gave up in the end and fell asleep.

By now I was having screaming fits every day and night and Martin and my dad had to go and speak to my neighbour and let her know I was ill as I was screaming at all times of the night and we didn’t want her thinking Martin was beating me haha! I was convinced I was going mad and I was depressed. It got worse when I was watching hollyoaks on 6th August 2014 and it was just after Perry finds out her ‘parents’ have just been killed in a car crash and she has gone to her friend Tom’s house to play Xbox. When Jack gets the phone call, it brings back memories to when I had answered the phone to my granny when my Bampi had been taken seriously ill, seeing the look of horror on his face caused what I thought was a screaming fit. All I remember is this horrible tension in my head and it hurting so much that I had to scream. I rewatched the episode the next day (thursday- when home alone) and managed to watch that part of the episode without having a screaming attack but when Leila had to identify the bodies and then the curtains closed. This brought back memories to my bampis funeral where the curtains closed at the end of the service and I went into another screaming fit. I text Martin and told him it had happened again. I was convinced then that I was not over the death of my Bampi even though it had been nearly 6 years and I’d had counseling in the past for it. I only ever got emotional around the time of year that he died so I felt confused. I just couldn’t get over the pain in my head that was causing me to scream, it was excruciating. I thought it was grief.  These continued for days and happened just about anywhere.

My mum was on holiday in Luxembourg visiting my auntie this week. I managed to call her through the app viber on the 7th August 2014, I was confused and crying because I didn’t know where I was even though I was at home and I didn’t know what I was doing and then suddenly I said “I’m alright now mum”. I went back to a&e and was admitted over night that day as Martin couldn’t wake me up for 2 hours so my dad told him to take me to hospital. They did an MRI scan on my brain, you have to remove all your piercings when you have an MRI scan due to the magnets. I have my top ear pierced and my tragus pierced, both which I could not remove myself, the porter who had brought me down for the scan said he would take them out for me. He removed the top ear with no problems but got the tragus piercing stuck. I started to panic. When I was younger I got a stone stuck in my ear and had to have it removed with crocodile scissors! It seemed like all my bad memories were bursting out of my head and scaring the hell out of me! I was terrified and went into another screaming fit. He seemed to really worry about me and refused to leave my side until I had calmed down, they got some tweezers and got the piercing out with no problems. Having an MRI scan on your head when your head feels like it’s going to explode and your hearing is so sensitive is horrible! I cried the whole way through. I got discharged the following day and was basically told I need to learn to control the attacks and get over it as the MRI scan had come back normal. I am signed off work from the hospital for 1 week. On the 8th August 2014 I realised I was in August, confused I tweeted whilst in hospital at 1.48am

how have I missed 8 days? I can smell popcorn

– how could the doctors not think there was anything wrong with me? I was saying crazy stuff and they said it was just anxiety?!

On Saturday 9th August 2014 I sat in the middle of my bed and tried to call my dad but I couldn’t speak so I passed the phone to Martin so he could speak for me. The next thing Martin knows I’m calling 101 emergency and trying to ask for help and for an ambulance because I can’t speak but I can’t get the words out properly. I can hear my dad telling Martin to tell me to put the phone down so I do. The emergency services call back and Martin explains that I am ill but I do not require assistance, they ask to speak to me to confirm this and the lady spends nearly half an hour on the phone to me calming me down, in the end she cancels the ambulance. The next day Martin spends most of the day asking me if I know what things are and who people are.

I decided I was going to take control of the situation and re-admit myself for physiological therapy appointments. I had an appointment on the 14th August 2014 with a lady called Kelly. Who diagnosed me with high levels of depression and anxiety. What confused me the most was I was at a time in my life where I probably the most happiest I had ever been, I was losing weight, I had a great set of friends, I had this new promotion in my job and I was just about to go on holiday! So how was I depressed and having these anxiety attacks when there was no reason for them?!

I have a doctor’s appointment for 15th August 2014 and the doctor says I have a severe ear infection still. I am meant to go to a friend’s 21st birthday party on 16th August but I cancel at the last minute and don’t go. I suddenly feel like I can’t be around anyone apart from my family and Martin. I tweeted at 22.18pm

feel like I’m about to pop!

My head is feeling so swollen and tense right now. Little did I know this would be my last tweet until 18th September 2014.

Sunday 17th August 2014 I did a carboot and felt like people were trying to steal from me so I made Martin write down everything we sold and how much for but I felt I needed to get rid of everything so I started selling stuff at ridiculous prices like 50p for a brand new branded top that should have been more like £2! I have now realised I was selling stuff I actually needed still and doing a carboot was a really bad idea.

Monday 18th August 2014, my first day back at work and it was very LOUD! The children seemed louder than usual and the lights were brighter than usual and my headache seemed to be getting worse. I was just wondering around in my own world when I was asked by one of my co-workers to help them move a bench in the playground. I walked over to the bench, bent down to pick it up and burst out crying hysterically. Everyone seemed so shocked, I mentioned I still had the ear infection and Claire who was in charge that day called my mum for me to pick me up. The pressure from bending down and lifting the bench up caused the most excruciating burning pain in my head that I had ever felt. My mum came and I kept saying to her about how loud the children were and how bright it was. She said to me that they weren’t being loud and it was just a normal day it wasn’t overly sunny. I had been at work for around an hour when I was sent home. I made yet another appointment with my gp. I went to the appointment with my mum and I sat in the chair next to the doctor and I said to her, my head feels like a lollipop, I feel twisted. She asked me to describe how I felt twisted. I turned 360 degrees in my chair putting my legs in the air and she said it was just an anxiety attack and ear infection. My mum told her that I was due to fly on Wednesday morning and she advised my mum and wrote on my notes

SAFE TO FLY.

Safe to say I wasn’t safe to fly. I will do a separate post about the travel to Gatwick and the flight to Luxembourg and our holiday there. August was definitely my month of madness, my month of hell!

My life before Autoimmune Encephalitis with positive NMDA Receptors

So my name is Jenny and I am 21 years old.

In this photo I am actually having my first symptoms of encephalitis NMDA, not that I knew it then, I just thought I had bad hay fever, a severe ear infection and anxiety attacks.

Firstly this blog is going to be for me to vent and somewhere for me to write down my days and for me to keep a track on my memories/symptoms and even side effects as I can’t trust my memory anymore. I have lost 2-4 years of my memory and have been finding it hard lately to remember things. This is also for my family, friends and other encephalitis sufferers to read to try to understand how I am feeling and what it is like living with an invisible illness, a brain injury, encephalitis. Encephalitis is a rare condition, having positive NMDA receptors makes it rarer and harder. This is also to help raise awareness for Encephalitis as no one seems to know what is wrong with me, I have inflammation of the brain. My life has just changed forever and I’m not sure how I feel about that. Dates and times are very important for me now which you’ll see as you read on and in future posts!

My life was pretty normal until towards the end of July 2014.

I had moved into a flat with my boyfriend Martin in 27th May 2013. We adopted 2 cats on 14th July 2013, called Mystie and Tipsy who had various medical issues but after a few stressful months they over came it all and are now relatively healthy and very happy. We have two turtles called Treasure and Whizzy which we gave a forever home on 5th august 2012. We both had a car each and full time jobs although I hated my job working full time in a call centre and decided at Christmas 2013, after numerous problems with my arsehole of a team leader who decided he would use his mental health issues and home life issues and take them out on me causing me to have an anxiety attack at work after he tried to publicly embarrass me in the call centre and being told I would be most probably be working the late shift (12.30-9) Christmas Eve, Boxing Day and the same again New Year’s Eve and New Year’s Day, that enough was enough and I would shove the job back in their faces by handing my notice in just before Christmas! I probably shouldn’t have put that but it’s my blog and my thoughts and I think no matter how bad your life is, you should never take it out on anyone else, or try to belittle someone else, it’s bad karma! Even though I had no job to go to, I did not care, I was sad to leave all the friends I had met there but an office job is just not for me. I was not the type of person who could sit down for too long so this job killed me and I put on so much weight errrugh!

Me and Martin just before the episodes June 2014.

Anyways I decided I wanted to do what I had always wanted to do and that was to be an early years teacher so I applied for an early years apprentice at Paragon and proceeded to call around 50 potential places, only one got back to me, The 115 club. I went for an interview and got the job! It was to start on the 20th January 2014 and my last day at the call centre was 18th December 2013 so I had a month off work to enjoy myself and relax! It was a part time position working 2.45-5.45 Monday to Friday term time and working 2 full days of 8.45-5.45 a week during holiday time. It meant being on an apprentice wage and seeing my monthly wage decrease by 75%!! But I loved this job so much that I didn’t care about the money, I could have happily worked for free! I was having weekly appointments for psychological therapy for depression, anxiety and OCD behaviour. This started 22nd august 2014 and ended 13th February 2014 where I relapsed that very night and felt like I’d gone back to square one but after reading the relapse prevention programme we had set up, I felt back in control of my emotions and never really had an issue since that or so I thought.

Seeing as I had this fresh start with my new job I decided to sell my car to save money as my job was only a 10 minute bike ride away from home and I decided to join slimming world with my mum to shift this weight so I could finally feel happy with myself and start enjoying myself and life properly. I joined on 19th February 2014. My last weigh in was 13th August 2014 where I lost 4.5lbs, got slimmer of the week, my 3 stone award and I was also nominated for woman of the year 2014 which I won! My awards from slimming world consists of 1/2 stone, 1 stone, 1 1/2 stone, 2 stone, 2 1/2 stone, 3 stone, young slimmer of the year 2014, bronze body magic, silver body magic, gold body magic, woman of the year 2014, slimmer of the week x4, slimmer of the month x2! I had lost 42.5lbs in 25 weeks!

Me and my mum when I won woman of the year 2014 at slimming world!

I had my 6 month appraisal at work on 3rd July 2014, where I was not only offered breakfast club hours at the ringwood club but they also wanted to take me on as a proper member of staff which meant no more apprentice wage!!! I had never felt so happy in my life, I was literally on cloud 9, absolutely buzzing!

I was obsessed with my sewing machine, making baby quilts and pillows, buttons, making button embroidery pictures, making bunting, couponing – I once got over £120 worth of free cat food, £40 worth of free fruit and veg, £65 worth of meat for £21.43 and over £150 worth of free coke zero.

As you can see I had really changed my life around for the better and I was really getting on track! Everything good was seeming to happen to me, sometimes it felt to good to be true, but then I though about all the good karma I had been giving out and thought this was mine coming back! I had a really supportive family, boyfriend, best friend and a small group of true friends. I had got rid of all the fake friends in my life who were going nowhere and were holding me down and maybe unintentionally causing me to feel depressed.

Me and my best friend on her wedding day, 25th July 2014, the day before it all started. I’m so lucky to still remember this special day!

I started to notice little changes around June/July 2014 time, but it all started to spiral out of control from August 2014.

I will start blogging about my weird and wonderful symptoms and seizures that happened to me so that you can get a little understanding of how it feels to have your immune system attack your brain and nearly kill you, and how it feels when everyone just thinks you’ve gone crazy!

Thank you for taking the time to read this and if you wanna chat just leave a message below x