#I miss being manic it was so much easier to pack the car and just fucking drive form Florida to Maine and back

[milo-is-rambling]

Trying to plan a road-trip for yourself when you when a deadline for when you have to be at the end destination but you get to make the entire plan to actually get there is the worst ever actually

[mumofadaofficial-blog]

The Gap Filler

Firstly, a massive thank you to everyone that has read my first post! Your messages and comments have been overwhelming and you will never know how much it means to me to know that you all care enough to read our story - you guys are friggin amazing!! And I am so pleased to see that what I am doing seems to be helping or comforting others in some sort of way.

SO - last time I took you through Adas birth and getting her home. I touched very very briefly on the stressful time we had before Ada came off oxygen so I want to give you a run down on that. As traumatic as Adas entrance into the world was, life didn’t seem to get much easier for us and I think it almost completely fried my brain, but hey, we’re all crazy in one way or another right?!

Going back to KL hospital was an exstremely hard thing for me. The memories of what had happened there were still very fresh and very raw. Ultimately though, if it hadn’t of been for the team of people that initially worked on her, she wouldn’t be here today. So I sucked it up, put on my big girl pants and was ready to give it another chance. 

There was definitely a big difference to Norwich, mainly I would say communication issues that I’m hoping lessons have been learnt from now. From going through this I have realised that parents really need to be included and told what is happening every step of the way, something which I think can easily be overlooked. When your Childs life is in the hands of someone else you NEED to know what is happening. 

I don’t want to dwell too much on the things that were done wrong once we returned but it was a struggle and no parent should have to feel like they are battling with the providers of your Childs care - my advice would be to stand your ground, be strong, ask as many questions as you want and make sure you are happy with the answers and information given. 

I also think its important to remember that not all people take the same pride and care in their job as others do, so we always tried to make a point of thanking the people that went the extra mile for us. 

On the day that we were finally able to take Ada home we were not allowed to do so until she had undergone an MRI scan on her brain, we were told this was just routine. There wasn’t much explanation as to why. Instantly you think to yourself ‘omg, whats wrong?’ ‘Is there something wrong with her brain’ ‘is this routine or are they hiding something from me’ After doing research and asking questions, it is a routine thing to happen after a baby has been starved of oxygen at birth. Thankfully with Ada there was no signs of damage to her brain in the initial overview and this was then backed up by a specialist team at Nottingham (you still can’t stop your brain from thinking ‘what if?’ Whilst waiting to get those results back). After this she then had to have blood tests and a scan on her liver due to certain enzymes not being at an appropriate level. Without sounding thick, I didn’t even know what that meant and my head was just not processing anything properly. The information given to us on what would happen if it didn’t sort itself out was also very patchy. 

Now taking a new born home on oxygen is bloody tough, you find yourself confined to your bedroom or to the lounge, the rooms where we had the oxygen canisters. And you feel very restricted and trapped. So much so that I pretty much only went to my mum and dads or to Tesco if I was feeling super brave. Trying to get a baby out of the car is hard enough when you’ve never done it before, let alone having a back pack with oxygen in it too. Personally we felt that we couldn’t travel up north to see Nathans family as it would be too hard, so unfortunately people had to miss out. Trying to run a house when confined to those two rooms is very hard, that whole sleep whilst the baby sleeps is not even a real thing! When Ada was sleeping I wanted to do my washing, clean up, eat something or even just sit outside and have a coffee. Looking back, I wish I had relaxed a bit more and just thought fuck it! Those jobs were not going to please anyone but myself. Being easier on myself after having a c section would probably of been a better option and I shouldn’t of pushed myself to do so much when it was sometimes really hard to do so. Thankfully Nathan was a good team mate and I have lovely family and friends who all tried to keep me sane and help as much as possible in the process.

In order to assess how Ada was coping and trying to wean her off oxygen it meant having weekly 24hr assessments on an oxygen monitor at home. If you haven’t ever had any experience with one of these its a clever, annoying as shit, little machine that shows her oxygen saturation levels via a sensor on her foot. If they drop below 90 it makes the loudest most annoying bleep you’ve ever heard…great when you’ve just got her to sleep and shes moved and knocked her sensor off 🙄. They are used a lot on premature babies, however, Ada was a full term, strong bruiser of a baby who really enjoyed throwing her feet around and getting into massive strops! (I have absolutely no idea where she gets her attitude from?!) It soon became apparent that trying to get accurate readings from the machine with the amount of movement she was making was going to be hard. The machine would go back, data would be downloaded and the readings were not accurate enough due to movement. It felt like a constant ACCESS DENIED. Back to stage 1, which is really hard on your mental state and emotions when you are desperate to get your baby better. This would mean we would have to repeat the 24hr process and her oxygen level couldn’t be reduced, even though as her parents we knew she was ok and capable. I was left with no choice but to provide a written documentation of EVERY movement that made her sensor drop throughout the 24hr period, sometimes meaning I wouldn’t sleep just to be able to prove that she was doing well. We’re talking like mental person sending in four A4 pages of movements! This went on for weeks, the longer it went on, the stronger Ada was getting and the harder it was to get the readings. At the time she was also struggling with silent reflux which seemed to play up especially for us on the days she had her monitor on - thank god we have now found infant gaviscon!! 

As well as trying to cope with the oxygen there was a lot of different appointments at home, the hospital and doctors. Blood test for her liver enzymes again, health visitor, collecting oxygen monitor, hip scan, monitor again, physio, dropping monitor off, monitor again, dropping it off, another blood test, monitor again, health visitor, monitor again, immunisations, monitor again, physio, monitor again, consultant appointment, blood test, another hip scan, more immunisations, monitor again and physio - you get my drift and I’ve probably missed some out! Whilst all of these appointments were happening I was then having to chase for answers and information on the outcomes of all of these as the communication was very poor. But if you ask enough questions and make enough phone calls, eventually someone will answer you and you will find out what you need to know. Personally I don’t think it should have to be like that and it makes the situation a million times more stressful. But I do understand that staffing levels don’t always allow you to be the main concern and if your out of sight you can often be out of mind. 

Gradually throughout all of this and my crazy note writing Ada was weaned down off her oxygen one step at a time, then it was stopped in the daytime so she only had to go on it at night. 

Finally on the 27th of September we got the call that I had been longing to get! Adas consultant was happy for us to turn her oxygen off, completely! No messing around at night, no more changing plasters and making her face sore (making you feel like the worst person in the world), no more fighting to put her cannula up her nose and no more sleepless stressful nights with a monitor bleeping in your ear! I cried and then rang Nathan and cried a bit more, then I probably rang anyone else in my phone book that would answer, and you guessed it, cried some more. For once throughout this they were tears of happiness and relief. She had finally done it, our miracle baby had stuck her fingers up to the world and smashed it! In the words of the king that is George Michael ‘You got to have faith’ 😉 

Now, our only reason to go to the hospital is for extra immunisations against bronchiolitis, unpleasant, but better than her being hospitalised again or poorly. And for routine check ups with her consultant which will happen until Ada is 2. 

Deep breath for this part. 

The effect that this has had on me has been unreal, and although Ada is fighting fit it still isn’t easy. I was always quite ignorant to issues involving mental health and was one of those ‘just get on with it’ people. I’ve now realised that sometimes this just isn’t possible. When something in your life has been so traumatic and so stressful it can be really hard to deal with and process, my main concern was Ada and to worry about me later. It is also very easy for people to say ‘she’s fine now so don’t worry’ but you do (please don’t take offence if you have said this to me!).

Hiding your feelings and pretending everything is ok is not healthy for anyone, but to seek help was not something I was prepared to do until recently. I am by no means crazy, or a manic depressant but I do have my bad days. Days when things get to me and the stress takes over, flash backs, not being able to sleep because my brain won’t switch off, worrying that something will go wrong, being well and truly put off from having any more children, having to have full control of all situations, and for weeks, I fully blamed myself for what happened to Ada and believed that I should of known something was wrong and prevented the whole situation. I have felt in the past like I am not good enough, like I’m doing a shit job and like I can’t cope. I have struggled to speak about how I feel as I was worried I would be judged or people would think I was a shit mum or that I couldn’t look after Ada properly. I have also pushed help away as I feel compelled to be some sort of ‘super mum’ and that no one else should be doing my job. 

I still cannot talk about what happened without crying, and there isn’t a day go by when I don’t relive it at some point. I constantly look to see if Ada is developing as she should and is there any signs that something isn’t right, when I should just enjoy every moment. Living with me is probably a nightmare, Soz Nath, Mum and Dad - cheers for putting up with me 😘 Somedays I will snap at the smallest thing and overreact, whereas another day that same thing wouldn’t bother me in the slightest. 

I am a very private person when it comes to my feelings and I have always thought to show people the venerable side of me would make me seem weak, when in fact it does the opposite. From doing this and the responses I’ve had I now realise just how important it is to talk out and show everyone the old saying of ‘It’s ok not to be ok’. To write this down and tell you all what has happened is unbelievably difficult, yet very therapeutic and I strongly believe that if more people were to speak out about how they feel and the effect it has, then it wouldn’t be such a taboo subject. Because it most definitely shouldn’t be and anyone who says they haven’t had a full scale meltdown at some point is most probably lying to you. 

Ok, so might as well of just posted a naked picture of myself with the caption ‘HERE I AM’ after all that, but thats probably about as honest as you will find me. 

Amy x

[metalornothng-blog]

Forming/Retaining Memories with Mental Disorders

First and foremost, I’d like to address something really interesting that I truly related to when I read it - RAPID CYCLING. What led me to this revelation of the concept “rapid cycling” was researching “What is Bipolar Disorder?” Now why would I be randomly wondering about BPD? Because I need answers and solutions to these horrible mood swings ruining my life and relationships. What does this half to do with memory? You’ll see.

I remember being diagnosed as a child with “rapid mood swings”- highs then lows swinging so fast they leave me dizzy and with spotty memory of what just occurred.. something as simple as my morning trip to Starbucks, posting an IG story ranting about something I find amusing, then taking a break to sit on the couch and *boom* mood swing I’m overanalyzing and being really hard on myself, suddenly unsure of what I'd even just said or done as if I’d been in some drunk frenzy. Sure if i think hard enough i know exactly the events of the day but sometimes i even confuse it with the day prior, or another day before that. It leaves me pretty disoriented most of the time. 

So sure, that didn’t affect anyone but me but here is a perfect example of how these mood swings are affecting my relationships- I just finished a modeling job, I’m driving home in a great mood, and then *boom* here comes the negative thinking, the overanalyzing of my work, and the bad mood. And maybe that bad mood makes me lash out at my friends or family. Maybe I text all angrily for a good five minutes in my car in my garage and then I get out of the car and stand up and suddenly *boom* I’m fine. I no longer care and life goes on. But no one else is fine. My friend is left with all these angry words I didn’t even mean and honestly I’m pretty embarrassed that i have these weird outbursts that half the time aren’t things im rude enough to ever voice and i’d rather not remember so I don’t scroll back up and I block it out and I’m left thinking things are suddenly back to normal since I’M back to normal. This doesn’t only apply to cell phone interactions by the way it’s just a relatable example, but for you it could be yelling at your mom, saying hurtful things, slamming the door, taking a deep breath and suddenly walking back out trying to apologize.

So now here’s an example of how it affects me in daily life with people i DON’T know and that i’m TOO nice to (haha!) So, I’m leaving a modeling job, I’m in an ecstatic mood and I get to the counter to buy cigarettes and end up gushing to the cashier about the beautiful day and we get deep into conversation about cigarette prices and then my tattoos by now fifteen minutes has passed and he’s trying to give me his phone number and I’m immediately annoyed and discouraged and by the time I’m stomping out of the store I’m angrily muttering “can’t a girl just buy a pack of smokes? damn!” And instantly my good mood that spurred the conversation which confused the dude into thinking I was flirting has sailed out the window and I’m blaming myself and angry with the world. And as I overanalyze our fifteen minute conversation to figure out where I went wrong I realize I sounded like I was a full on tweaker babbling about sunshine and how wonderful Cali is and pouring out my life story to someone I’ll never see again. What. Just. Happened?!

What is rapid cycling?

“Rapid cycling is defined as four or more manic, hypomanic, or depressive episodes in any 12-month period. With rapid cycling, mood swings can quickly go from low to high and back again, and occur over periods of a few days and sometimes even hours. The person feels like he or she is on a roller coaster, with mood and energy changes that are out-of control and disabling. In some individuals, rapid cycling is characterized by severe irritability, anger, impulsivity, and uncontrollable outbursts. While the term “rapid cycling” may make it sound as if the episodes occur in regular cycles, episodes actually often follow a random pattern. Some patients with rapid cycling appear to experience true manic, mild manic, or depressive episodes that last only for a day. If there are four mood episodes within a month, it is called ultra-rapid cycling, and when several mood switches occur within a day, on several days during one week, it is called ultra-ultra-rapid, or ultradian cycling. Typically, however, someone who experiences such short mood swings has longer episodes as well. Some individuals experience rapid cycling at the beginning of their illness, but for the majority, rapid cycling begins gradually. Most individuals with bipolar disorder, in fact, experience shorter and more frequent episodes over time if their illness is not adequately treated. For most people, rapid cycling is a temporary occurrence. They may experience rapid cycling for a time, then return to a pattern of longer, less frequent episodes, or, in the best case, return to a stabilized mood with the help of treatment. A small number of individuals continue in a rapid cycling pattern indefinitely.”  See: http://www.dbsalliance.org/site/PageServer?pagename=education_brochures_bipolar_disorder_rapid_cycling

So it sounds like I’ve figured out what these rapid mood swings are called and I feel better that there’s a name for it. And clearly other people are dealing with this too. This next paragraph hit home-

“Characteristics such as irritability, tendency to cry, racing thoughts or impulsiveness may cause social problems. Because people with bipolar disorder are often unfairly judged, they may lose opportunities to develop friendships or romantic involvement, or have trouble achieving their career goals. These struggles may contribute to self-esteem problems.”

So while I’m sitting here writing this I pulled open my text messages and saw one that said “Let’s go get our belly buttons pierced!” I remember writing it but I don’t even want a belly button ring. Perfect example of making impulsive decisions while rapid cycling. And because I just read it I remember it but I honestly had no memory of wanting to do that today. So yes, that definitely applies to me, but this but this doesn’t explain the MEMORY LOSS/BLOCK part of things which made me decide to search “Bipolar and Memories” which lead me to this eye-opening article:

“Of course, it’s common to engage in out-of-character behaviors while manic. I accept that. However, it’s much more difficult for me to accept the fact that I have absolutely no recollection of performing so many of these actions. I suspect there’s a lot more I don’t remember from that time period, as even five years later, I keep learning new things. I can’t tell you how many times my husband has said to me: “Do you remember when …” and I don’t. It’s as though someone has stolen my memories, and I don’t like the idea that such a thing is even possible. Memories aren’t like alarm clocks or artwork—you can’t just replace them.Coping with the reality of losing so much time and having done so many things (often highly embarrassing things) of which I have zero recall hasn’t been easy for me. I recognize that my amnesia may well be my mind’s way of protecting me from myself, from reliving painful events, but that doesn’t make it any easier to accept." See: https://www.bphope.com/bipolar-disorder-missing-memories-i-did-what/

The article ended up with the author babbled about forgiveness and that people still love her. Good for you, I’m losing friends by the minute.

So I continue my search. So what I’ve gathered so far is that people with BPD experience rapid mood swings all day long just like me and people with BPD experience states of frenzy with memory loss (amnesia). 

What is amnesia?

“Amnesia is a deficit in memory caused by brain damage, disease, or psychological trauma. Amnesia can also be caused temporarily by the use of various sedatives and hypnotic drugs. The memory can be either wholly or partially lost due to the extent of damage that was caused.[2] There are two main types of amnesia: retrograde amnesia and anterograde amnesia. Retrograde amnesia is the inability to retrieve information that was acquired before a particular date, usually the date of an accident or operation.[3] In some cases the memory loss can extend back decades, while in others the person may lose only a few months of memory. Anterograde amnesia is the inability to transfer new information from the short-term store into the long-term store. People with this type of amnesia cannot remember things for long periods of time. These two types are not mutually exclusive; both can occur simultaneously.” See:https://en.wikipedia.org/wiki/Amnesia

So maybe I have BPD and anterograde amnesia with a drop of retrograde because The best way to describe my memory would be snapshots- shorts clips but no seamless video footage. I can’t remember my child hood, I had several best friends in 7th grade and don’t know their names, they don’t even have bodies or faces in my memories. Entire years, schools, individuals- wiped out. Or even getting lunch with a friend two weeks ago seems like years ago. It hurts. It makes me feel heartless. I didn’t choose to be this way but if there was one thing I did that might have screwed me, it was learning how to block things out. My mom loved to scold me with this weird expression on her face of pursed lips and a finger wagging in front of my nose. I hated it so I’d tune her out and go somewhere else in my mind. I began to do this so much I eventually lost control of when to snap back from my happy place. My sweet mind trick on my mom turned into this full blown out mental disorder called “ADD.” 

What is ADD?

Apparently “this is an outdated term. The term was once used to refer to someone who had trouble focusing but was not hyperactive.” OK cool so it’s ADHD now. Inattentive ADHD means a person shows enough symptoms of inattention (or easy distractibility) but isn’t hyperactive or impulsive.

For example- It got really bad in high school to the point that I’d be trying to listen to my friend’s story and she’d say a word that either sparked a memory of mine and I’d be so excited to share it I’d blurt it out and interrupt her because i literally didn’t even hear her talking anymore my memory was so loud and needed to resurrect itself from the dead. Everyone started to hate me because i came off as super obnoxious and spacey. I didn’t always interrupt, I’m actually pretty aware now and I apologize or manage to hold it in til the end. But THEN people probably think I’m just waiting for them to finish talking so I can talk about myself some more. And while that’s not true at all, it truly is hard to hear the rest of their story with mine pushing so hard to get out. Then I found this psychology study on ADHD and memory differences and the outcome:

“We know that these individuals with ADHD are just as capable in remembering information, but what is selected to be remembered could be an issue. The brain areas associated with planning, memory, and decision-making are also implicated in a number of other psychological disorders. Decisions about risk-taking, substance use, and other problematic behaviors may be impaired in children with ADHD compared to their non-ADHD counterparts. A recent analysis looking at the long term outcomes of children with ADHD found that as adolescents and adults, they are more likely to try smoking and marijuana, and more likely to develop substance abuse or depending on nicotine, marijuana, alcohol, cocaine, and other drugs.” See: https://www.psychologyinaction.org/psychology-in-action-1/2011/02/12/adhd-and-memory-differences-in-what-is-remembered

Oh did someone say substance abuse? Hello, it’s me! But more importantly, they mentioned selective memory. 

“A study found that repressing these memories for long enough can lead to us erasing them completely. Using EEG scans, scientists noted the parts of volunteers' brains which became active when actively trying to forget something. They were also able to pinpoint the exact moment a memory is 'forgotten', and claim that long-term suppression of a memory is a sure fire way of permanently erasing it.

The study authors say that mastering the technique could be useful for people who suffer from depression or post traumatic stress disorder.

Mr Waldhauser, a researcher at Lund University, said "We know that 'forgotten' or repressed feelings often manifest themselves as physiological reactions.” See: http://www.telegraph.co.uk/news/science/science-news/8620360/Selective-memory-does-exist-say-scientists.html

So maybe my elite human brain is just protecting me... They did mention depression and PTSD.

“Depression has been linked to memory problems, such as forgetfulness or confusion. It can also make it difficult to focus on work or other tasks, make decisions, or think clearly. Stress and anxiety can also lead to poor memory.

Depression is associated with short-term memory loss. It doesn’t affect other types of memory, such as long-term memory and procedural memory, which controls motor skills.” See:https://www.healthline.com/health/depression/depression-and-memory-loss#outlook

Several reoccurring symptoms of PTSD include fearful thoughts, flashbacks and bad dreams. These symptoms can become problematic in a person’s life. Some of the avoidance symptoms include difficulty remembering the traumatic event and avoiding reminders of the experience, such as places, people and objects. Hyperarousal symptoms may also arise, such as feeling tense, being startled easily and having trouble sleeping. While it is normal to experience some of these symptoms after a terrible event, symptoms lasting more than a few weeks may be signs of PTSD.\Post-traumatic stress disorder causes short-term memory loss and can have long-term chronic psychological repercussions, according to the American Psychological Association (APA) and the NCBI. Fortunately, psychotherapeutic intervention and treatment can alleviate and often eliminate short-term and long-term effects of PTSD. See:https://www.psychguides.com/guides/post-traumatic-stress-disorder-symptoms-causes-and-effects/