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 πŸ™‚ 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 πŸ˜‰ only messing that’s really good news πŸ™‚ 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.Β 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.

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Author: jennygx

My name is Jenny, I live in Bournemouth with my boyfriend Martin and 2 cats Mystie and Tipsy. I was diagnosed with Anti-NMDA Receptor Encephalitis in August 2014, my whole life was completely changed and I created this blog to try to piece together forgotten memories with texts and social media posts I had sent during my month of madness. I now use the blog to raise awareness for Encephalitis and brain injuries and to connect with other survivors.. I am still slowly recovering, it is a long process and extremely hard but every day is a step closer to a healthier me!

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