Life Lately

I’ve been struggling lately on what sort of blog posts to do. I started this as a way to raise awareness about my memory loss & blackouts so I try my best to stick to the subject in all posts which can make it difficult to blog if i haven’t blacked out much! So I thought I’d give an update on the past couple of weeks.

So, life recently has been pretty average tbh.

As you’ll know if you read one of my recent posts – ’10 Days Black Out Free’, I was on a roll with not passing out. I went something like 12 days black out free in the end which is easily a record because it was getting to a point where I was blacking out on average at least once a week so the 12 day streak of being black out free came as a surpise! I got so excited but at the same time tried not to get my hopes up too much as I knew that a black out would be just around the corner. And it was! Boo!

I worked my 10 days of early shifts and it actually went better than I thought. I was overly careful and took painkillers when I needed them instead of trying to be big boll*x and soldier on without them. I went to Thorpe Park with a group of friends and it was an amazing day. The sun was shining, I was with my other half and some great friends, we laughed til our tummies hurt and made as much noise as possible on every rollercoaster!

 

After that weekend when my partner and I came home, we were both clearly tired and I just knew that a black out was on it’s way! I passed out on the Sunday and Monday but can’t really remember them ones. And I also passed out the Tuesday. My partner went off to work as usual and because she had the car with her she thought she would come home on her break to surprise me but clearly I had my own surprise for her! She came in and found me passed out on the bed. I had completely forgotten the weekend at Thorpe Park and I was gutted. I felt really low and agitated and I was supposed to go in to work to cover a shift that day but my partner had to call and inform them that I wouldn’t be able to.

I think I’ve pretty much caught up with most of my memory now and I’ve been back to work.

I’ve also finished reading the book that was suggested to me by the last Dr I saw at the JR. It’s called ‘It’s All In Your Head’. I was very dubious about reading this book for obvious reasons. But never the less, I’ve read it. I’m still not sure what I think about it but I have learnt a few things from it. I’m not sure if I will do a review on the book exactly but I may do a blog post on some of the things that I did learn from it.

My partner and I also went to watch ‘Mrs Browns Boys’ live and if you are a fan of the programme then I would definitely suggest going to see it live! We went over to Birmingham early on the train as the sun was out so we visited a few beer gardens and sat catching some rays!

 The show started at 19:30 I spent pretty much the whole 3 hours of it laughing! I love it when they mess lines up or make each other laugh and just play off it and carry on like it was supposed to happen, it’s great, it really adds to the funny side of it. The only thing was that we forgot to check what time the last train back from Birmingham was and it’s safe to say that we were going to miss it if we wanted to stay and watch the whole show! BUT, luckily, my lil sis was also in Birmingham at a gig and my mum had driven her there and was taking her home so, once again, momma bear came to the rescue and we got a lift home!

So, all in all, I’ve had a pretty decent couple of weeks. The weather has been nice to us, I blacked out less than usual, visited friends, went to a theme park, and went to see a live show! And if you read ‘A Bucket List For April’ you will see that this means I completed a fair few things on it already! Hehe.

Thank Your for reading and I hope your last couple of weeks were as good, if not better, than mine ­čÖé

#Forgetfulblogger

Just Another Appointment?

#forgetfulblogger

20/02/17 I had an appointment at the JR in Neuroscience. I already had it in my head that it was a waste of time being there. Just another appointment with no answers. Luckily i don’t suffer from what some may call “White Coat Syndrome“, if im honest, i didn’t even know what this was until someone asked me about it. And if you are also unaware of this it means- People with this syndrome exhibit a blood pressure level above their normal range in clinical setting (Dr’s surgeries and hospitals). The term white coat comes from references to the white coats traditionally worn by Dr’s. So, luckily I don’t have a fear of hospitals or white coats! I just don’t have much faith in them at the moment.

My name was called to enter the Drs office. He was a very polite man (not wearing a white coat though!), introduced himself to my partner and I ‘Nice to meet you’ he said.

He asked what my understanding of this appointment with him was ‘I have no idea if I’m honest’. He said that was ok and asked me to give a brief description as to what has been going on since May. I tried to make it as brief as possible but he kept asking me more questions so I’d go into a little more depth about it all so this “brief description” ended up taking about 35mins! 

He started to focus on the fact that I have quite a high level of anxiety and was asking about previous counselling sessions I’d had for my anger and anxiety. It was then that I started to get an understanding for what this appointment was all about… It was basically another damn counselling session! My partner had to take a day off work and drive me to Oxford for a counselling session!? Once I’d got this into my mind I felt a little annoyed but I tried my best to stay focused and answer all of his questions. 

Hands starting to sweat as I rub them together and jiggle my legs whilst stutterin as I become more and more anxious with all attention being on me – ‘How was your childhood?‘, ‘What sort of cancer did your mother have‘, ‘do you have any siblings?‘, ‘what we’re your previous counselling sessions like?‘, ‘How old were you when your father left?‘. He even drew up a rough drawing of my family tree! This guy now knows more about me than most of my friends and family do. I’m starting to feel a little uneasy, I’m not very good at letting my gaurd down and explaining how I felt during what could be described as tough times from the past.

I started to realise where he was going with all of this. He was about to blame all of these blackouts and the memoryloss on my anxiety! Man was I right! So I’m feeling a little knocked down by this approach. I’ve always said that many Drs will just give you a random diagnosis just so you feel you have an explanation as to what is happening to you even if it isn’t precise. And now this guy had just proved my point.

Yes, I understand that my anxiety probably doesn’t help, but now this Dr has made me feel like it’s all in my head! As if I don’t feel crazy enough when I come round after passing out and I’m convinced everyone else is wrong about the day and time!

‘Now, don’t feel like I’m telling you it’s all in your head because it’s not, it’s very much real’. What!? ‘Do you like reading?’ He asked. Well I’d never read a full book until recently, but now I love reading books on psychology and how the brain works. ‘Perfect, I’ve got a book that you may enjoy, it’s called – It’s All In Your Head by Suzanne O’Sullivan. Is this man for real? One minute he’s telling me it’s not in my head and the next, he wants me to read a book about it being in my head! Well, I’ve ordered the book but I’m not sure whether I should read it as it may just wind me up even more! But if I do get round to reading it I will make a blog of my review 👍

I came away from this appointment feeling quite let down in a way. I understand that he was trying to help and see it from a different point of view but I couldn’t get those words out of my mind “It’s all in your head“. But he’s the Dr, right? So he should know best. And he feels that the stress my anxiety is giving me may be a cause to my headaches as I tend to overthink things and wind myself up, putting myself under stress that could be avoided. 

At the moment I’m willing to give anything a go to try and get this all to end or even calm right down. So he has prescribed me some new medication, it’s something that people with epilepsy take to calm them down apparently. He’s also going to sign me up to a group session to talk about my anxiety. I said I’d try my best to attend but, ironically, I have anxiety so I’m not exactly a huge fan of socialising, especially when it means sitting in a group of people I don’t know! 

So at the moment that appointment seems pointless, just like the rest. But who knows, maybe if I can get my anxiety under control, it will stop the headaches, which in theory should stop me from passing out. I’m willing to give it a go but I don’t have too much faith in it all at the moment. Keep your fingers crossed for me! And if you have anymore questions about this appointment then please feel free to contact me ­čÖé 

#forgetfulblogger 

Into The Deep – #ForgetfulBlogger┬á

Ok, so I was overwhelmed with the support I received after posting my first ever blog and got so excited about my next entry – But I had no idea where to take it from there! I turned to friends and family and asked- What is it you would like to know about my experiences with blackouts and memory loss, so that I could go into a little more depth with it all. So here goes…

#ForgetfulBlogger

-Do you ever remember things that you have forgotten and are there ways you can get any of those memories back or do they come back randomly?

During the “big blackout” that I had where I’ve lost 2 years of my memory I have remembered a few random things. Usually something jogs my memory like in 2015 our bungalow got flooded from a burst pipe, we had to live in rented accommodation while our house got sorted. I had forgotten all of this but I used to go past the house that we temporarily rented almost every day and one day something just jogged my memory! I remembered that we had lived there for 2 months! Sometimes I could just be laid in bed thinking and I have to ask ‘was that a dream or is it a lost memory from the past 2 years?’ lol. If you can imagine waking up from a deep dream but when you try to explain it to someone it all seems quite blurry- THAT is how bits of my memory come back. When I have these smaller episodes of blacking out – I tend to loose the last 2 or 3 days and most of that slowly comes back over about a week.

-Do the Drs know if its heredity and has anything like this ever happened to any other family members?

No, they cant see any signs to say that its heredity and nothing like this has happened to any family members, that I’m aware of.

-Do you know you’re about to pass out or is it sudden?

I can never remember what or how i feel seconds before i black out, but during the lead up to me passing out- I will get a severe headache, a lot worse than it usually is. This usually gives me and others around me an indication as to what’s about to happen. Ive been told that I also become very quiet and quite withdrawn from whatever is going on and round me. My partner has told me that my veins In my hands stand out and become raised which I am assuming is to do with my blood pressure rising from whatever is happening inside my body at the time.

-Can you remember your initial thoughts when you first come round after passing out? What goes through your mind when it happens now?

When all of this started it was very confusing and quite scary when I first came around. Id usually be surrounded by my mother and partner and sometimes an ambulance crew. I remember the first couple of times thinking ‘I wonder if I’ve lost another 2 years or if my memory has all come back’, neither of which was right. I used to worry and get a little scared, I didn’t know  what was going on and how I ended up on the floor. Now it seems to be a regular occurrence – I wake up knowing what’s likely to have just happened and just think ‘Oh not again’, my partner asks how my head is, whether I’m in pain and what day I think it is. I still have some slight confusion when I come around and I feel quite vulnerable at first but I recover a lot quicker now.

– What was it like when you first blacked out and came around feeling like you’d travelled to the future, how was it adjusting to every day things?

Well I thought it was all a huge joke that everyone was in on! I was determined that it was still 2014, I’d get upset and angry because I thought that everyone else was wrong! The Dr’s were constantly asking questions to find out how much of my memory had gone and I’d get would up and annoyed with them. I did get a little bit cheeky – Id memorise signs around me so that when the Dr’s or my family would ask ‘Do you know where you are now Daniella?’ I’d remember all the signs id seen. They caught me out most of the time though! When I was allowed to leave hospital and I walked into my house a lot had changed in the past 2 years. I became quite upset and agitated with all of the changes I could see around me. I had to ask where so many things were including my own belongings in my own home. But, on the plus side – I had a whole new wardrobe, a lot more money, and a much better partner!

-What sort of tests have you had done so far?

So, when I started getting these horrendous headaches I went to the opticians to see if it had anything to do with my eyesight as I do wear glasses. They noticed that my peripheral vision in my left eye was absent. I had numerous field tests at the opticians and it was handed over to my local eye hospital but apart from slightly bad vision in my left eye, there was nothing serious to be seen and nothing to link it to my headaches. Things with my head kept getting worse, I tried almost every painkiller that could be bought over the counter and they just weren’t touching the pain. I ended up going to my Dr Who organised tests for sinusitis and when that showed nothing and they referred me to a neurologist. Through them I have had a lot of MRI scans, neuoropthalmology tests, an EGG test where they wired up my head and checked for any abnormal activity, and when I was in hospital I had a lumbar puncture done to check for any infections. None of which explain whatever condition it is that I have.

– Do you ever talk to your friends and family about the effects this has on them, it must cause a tremendous strain on your personal relationships?

I don’t think I’ve asked them outright as I believe I know how it must effect them. Obviously my mum, sister and partner are extremely  supportive and I understand the strain it must have and still puts on them. Luckily I knew them all before 2014 lol. My close friends are also very supportive and patient and have a slight understanding of what goes on and maybe after reading my blog, you too will have an insight as to what goes on. My work colleagues I think it was most strange for. They had a rough idea as to what had happened but I don’t think it really hit them until I first walked back into the office again. They obviously remembered me but had to treat me like a stranger in a way. They have also been very supportive and helped me while I re-trained for my job again which I’m extremely thankful for.

 -Does it effect your everyday life like going out?

It doesn’t stop me from going out altogether, no. I don’t worry too much about passing out while I’m out in public and that hasn’t happened yet. But if I’ve already passed out I tend to be a bit vulnerable for a day as im still getting used to the fact that my memory has gone back a day or two. I tend not to go out by myself very often anyway so I’ve always got my partner, mother or a close friend with me for reassurance. When I first lost my memory I did worry that I’d see someone that I’d  met between 2014 and 2015 that I couldn’t remember. Or, I’d worry that I might attempt to speak to someone that I’d stopped speaking to between 2014 and 2015 for whatever reason but I think I’ve caught up with everyone now!

Thank you so much to everyone that participated in helping me to write my second blog – Into The Deep.

 

 

First blog – The Forgetful Intro┬á

My name is Daniella. I am 25 years of age (apparently lol).

I suffer with what some may call “blackouts”. It starts off with a headache that becomes severely unbearable and I lose consciousness. When I come back round I tend to lose memory of the past 2 days or so. Dr’s and specialists have no idea what this is or what the reason for it may be.

This all started last year when I was at work one evening with an awful headache. I took myself out of the office, sat in the kitchen and took some painkillers. I then collapsed and was found by my colleagues who then called for an ambulance. I wasn’t taken to hospital and the medics put it down to a migraine. 

A few days after this random episode I went out for a meal with family and when I got home I passed out again. Only this time, when I came around, I had lost the past 2 years of my memory, I thought it was 2014 and was understandably very confused. I was in and out of the Dr’s and hospital for some time and ended up being kept in on a ward for a couple of nights. 

I thought it was one huge joke or TV show and everyone was in on it just messing around. I kept waiting to see a camera pop round the corner. I was convinced it was still 2014. I’d forgotten all about my new job, I forgot passwords for my online banking and social media, I had a new partner (luckily I knew her from years ago and she wasn’t a complete stranger!). I was, in a way, quite fortunate that apart from my new job there were no huge changes in my life from 2014-2016.

Numerous tests were done, hundreds of questions were asked but no answers were given and I was discharged. My notes are still getting passed from Dr to Dr. I’m still being poked and prodded by specialists. And I still have no answers. 

I have been retrained at my job thanks to the company and my employees for being so supportive. I have got used to a whole new wardrobe and style. I’ve slowly rebuilt relationships with people I had met during 2014 and 2016. And I’ve just simply adapted to “a new life”.

With my blogs I hope to help people in similar situations. Learn and share coping mechanisms. And maybe start some sort of awareness. Because although I have so many supportive people around me, I feel so lonely due to  the fact that no one can see it from my point of view. 

So please bare with me as I’ve never done a blog before but I hope you enjoy reading my journey ­čÖé 

Click to follow on Twitter 🐦