The Forgetful Poem 


Apart from blogging to raise awareness I am also an mc. I write and perform my own music so I thought I’d merge the two together to produce a short poem about my memoryloss 😊

I may be very forgetful and find it hard to manage,
There’s still no diagnosis so it’s clearly more than average.

Sometimes it tries to conquer me but i refuse to tap-out, 

I am more than just my memory and these awful, random blackouts.

I try stand tall and hold my head high when in social situations,

But inside im sobbing, worrying so please have a little patience.

I may forget we were supposed to meet, but please do not dismiss me,

I’ve recently forgotten friends, I hope you can forgive me.

If you see me and I don’t acknowledge, please try not forget,

I simply don’t remember how it is we may have met.

I get wound up and come across moody, you’d understand if you really knew me,

I used to be more independent, so these changes really threw me.

I try to see the positives of negative times in life,

But sometimes it all becomes too much and I tend to cry at night. 

I didn’t plan for it to be like this, I took my memory for granted,

But forgetfulness has become so natural, it’s almost like I planned it.

It’s made me appreciate so much more, like what I may have been put on his planet for,

To raise awareness for something that has no name, I’m blogging for help, forget the fame.

 ForgetfulBlogger refuses to quit so I know one day, i’ll remember this. 

 #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.

 

 

First blog – The Forgetful Intro 

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 🙂 

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