10 Days Blackout Free!

Woohoo!

It’s now been 10 days since I’ve blacked out!

Maybe I’m cursing myself by celebrating and writing this but at this moment in time, I really don’t care! Haha.

It wasn’t long ago that my partner and mother worked out that I was passing out on average about once a week. That’s a lot of times to be losing memory! I started to become even more depressed and worried, I was calling in sick at work more, leaving the house less and so confused all the time as to what day it actually was and what I should have been doing. My repeat prescription got longer and I just had no hope in things ever becoming any better. If anything, I thought I’d just spiral further and further down into a black hole!

Last week I realised that I had agreed to work 10 early shifts in a row. That’s 10 days of waking up at 04:30! I didn’t notice until a work colleague pointed it out to me and I regretted it as soon as I saw the roster! When my partner found out, she was instantly worried. When I have less sleep and tire myself out, the chances of me blacking out get a lot higher. She made me promise that I’d try to nap after work and let my manager know if I started to feel too warn down.

I’ve napped twice, made sure I’ve prepped as much as possible in the evenings like food and my outfit for the next day, and taken painkillers as soon as I could feel my headache getting worse. I’ve even been out and socialised. I’ve been to my mums for coffee, I went out for a drink with my partner when the sun was out, and I’ve been out for food for my mums birthday. So as much as I was regretting this week, I’ve actually really enjoyed it and things have been as normal as possible – No passing out, in bed at a reasonable time and socialising as much as possible.

It’s now Friday, day 10 of 10 early shifts. I will be finishing work at about 14:00, maybe having a nap once I get home, then shower and pack ready for the weekend as my partner and I are going to our friends tonight and a group of us are going to Thorpe Park tomorrow! I’ve had a fair amount of coffee and an energy drink the past few days but I’m not half as worn down as I thought I’d be at this point!

Now, I’m quite a believer in fate and I have my fingers crossed that by being so chuffed and sharing this that I am not cursing myself ! I’ll update you as to whether I do blackout in the next few days or not but this is definitely a record so far!

#Forgetfulblogger

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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 🙂 

#forgetfulblogger 

Into The Deep – #ForgetfulBlogger 

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.