Anxiety, Body image, Challenging, Chronic health condition, Depression, Exhausted, Friends, Generalised Anxiety, Panic Attack, Social Anxiety, Tired

Anxiety Anxiety Anxiety Anxiety Anxiety Anxiety Anxiety Anxiety!!!

I’ve talked before about my depression, health conditions and I’ve mentioned my anxiety before but I haven’t dedicated a blog post to what is a big part of my life and that is, you guessed it, anxiety! *Insert clapping*

Anxiety is a tricky thing as it’s different for everyone who gets it and the symptoms that people experience with anxiety will also be different. Sure, anxiety sufferers might experience SIMILAR symptoms but they will never be EXACTLY the same. There are two main types of anxiety that I’m aware of and they are generalised (you get anxious about everything and anything) and social (you get anxious about going outside, seeing people, talking to people ect) anxiety.¬†I have both generalised and social anxiety.

I can’t tell you which is worse as they are both incredibly bad and somedays one will be worse than the other and then other days they’re both at the same level of anxiousness. My anxiety has definitely gotten worse over the years and now I have a hard time leaving the house just to take the rubbish down. When I’m sleeping I have anxious dreams because of my PTSD and when I’m awake I’m sometimes shaking with anxiety doing absolutely nothing, so basically I am just one big ball of anxiety.

I’ll talk about my social anxiety first:
There’s a big difference between being nervous about going somewhere new and being anxious¬†about going somewhere new. Being nervous is normal and a useful human emotion but being anxious takes it past the level of being useful and a good human emotion to being a draining and fearful experience where there is no need at all to be fearful and to act and feel like you’re being chased by a lion about to be eaten!
I’d like people to stop using the term ‘anxiety’ so loosely and about everything when in fact, they are just NERVOUS and or excited NOT anxious.

A lot of my social anxiety revolves around how I think I look because of my weight which makes going out anywhere incredibly hard. I have a hard time going out and eating because I feel like everyone will be looking at me and judging me for eating. I can’t stand crowded places with too many people and loud noises and I have a very hard time talking to people like shop assistants when I’m out. ¬†I have a constant monologue of unhelpful thoughts running through my head the whole time I’m out and some of them are: “That person is looking at you because you’re fat” and “People are looking at you because you’re fat and eating” and “People are looking at your acne and that’s all they’re seeing.” As you can see, those thoughts aren’t nice or helpful and yet no matter how hard I try I can never stop them while I’m out. I’m always fidgeting and looking like I’m going to hurl and I know these thought aren’t rational but in a society where it’s openly known that you’re judged on the way you look, it’s hard not to have those thoughts and it’s even harder when you have no self confidence at all.

My social anxiety really inhibits me from doing a lot of things like going out with my Mum and spending time with her or going out and trying to find some friends. Social anxiety is not fun at all and I hate it, I hate everything about it because we know that it’s not rational to be so scared of seeing and talking to people that you want to cry, throw up and run away (all at the same time I might add) and yet you can’t stop feeling like that. Pushing past all those anxious feelings is really freaking exhausting which is why after I come home after going out anywhere I have to have a nap¬†ūüėā¬†Not only is pushing past those anxious feelings to actually go somewhere exhausting but consciously challenging all those anxious and unhelpful thoughts is exhausting as well, it almost feels like a full time job…

And as I right this blog post about anxiety I am starting to get anxiety… how effed up is that?!¬†ūüôĄ

Now I will talk about my generalised anxiety:
Having generalised anxiety means that I am¬†anxious nearly all the time and¬†usually about nothing. I could be sitting on the couch watching TV and feel like I¬†can’t breathe and my heart is racing and yet there’s no reason for me to feel¬†anxious at all. Even when I’m sleeping my dreams are anxiety inducing and so I¬†wake up with anxiety. I always feel like I am in that fight or flight state and that I can never properly relax, I am¬†always on edge and¬†always ready to go go go (even¬†though I have no energy).

Continuously feeling¬†anxious for no reason is hard work. I can sit¬†somewhere quietly and do my breathing exercises or distract myself but I still¬†can’t seem to quit being anxious. Being anxious has become part of¬†who I am now and I hate it. I don’t like¬†feeling anxious all the time about nothing and¬†never being able to relax, I want to be able to sit¬†down and give my body a rest.
I get anxious about making plans for the day, taking the rubbish out, Mum going anywhere and sometimes I get anxious just looking outside my window…

Nearly everything causes me to have anxiety and therefore continuously makes my body react like there’s danger and release that adrenaline and cortisol that your body produces when it’s in danger and yet, there is no danger for me at all. My body and mind are always on high alert and can never get a proper rest unless I take my anti-anxiety medication. I’m not against medication at all but I don’t want to take my anti-anxiety medication everyday just so I can get through the day without having all the feelings of anxiety and the starting symptoms of a panic attack, I want to be able to get and work through my anxiety myself but everything I try just doesn’t work. I have worked with many counsellors and psychologists to try and help me with my anxiety and apart from them all giving me the same techniques to use, they just don’t work.¬†

My anxiety also makes all my other health conditions worse. When my anxiety is worse it makes my depression worse which then makes my health conditions worse which then makes my anxiety worse and it’s a cycle that I can’t get out of.¬†

Here’s a little chart I made:

anxiety chart screenshot.png

Living with anxiety is a daily struggle that I have been dealing with for nearly 5 years now and you’d think that I’d get use to it by now but I haven’t, I’m still surprised over the level of my anxiety sometimes and how I can have anxiety for no apparent reason. I will continue to fight it and maybe one day I won’t have it anymore but for now, It’s making my life 1000000x harder and its just another thing that I have to deal with.

Keep safe everyone and know that you are not alone with your anxiety.
Maddy xoxo

Follow my new twitter account: https://twitter.com/DMWAAG

Email: depressedmesswithanxietyandgrief@outlook.com

 

(Featured image: https://www.jmrocketreporter.org/arts-entertainment-2/staff-columns/2017/05/18/stress/)

 

 

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Abuse, Challenging, Change, Chronic health condition, Depression, Exhausted, Family, Fat shaming, Mother and daughter, New housemate, Step-father, Tired

Change Is Good… Right?

We all experience change in our life. Sometimes it’s compulsory and sometimes it’s by choice and sometimes it’s good and sometimes it’s bad. Change is inevitable.

Well two months ago I experienced a big change and I have been struggling with it every day. I’ll get to what that big change was soon but first I’m going to tell you why this big change had to happen.

We have been struggling with money ever since we got kicked out of my step-fathers (Michael) house with nothing. We have been borrowing money off of friend’s for rent but we can’t ask them anymore because that’s just not fair on them, so now that we aren’t borrowing money off people we can’t afford our rent which is where Mum’s male friend comes in to play. Lets name him… Ned

Ned and Mum have known each other for a few years now and have dated on and off throughout those few years and I have always been pleasant bordering on friendly to him but the truth is, I just don’t like him; he hasn’t treated Mum the way I think she deserves to be treated and has said some pretty bad things to her. Ned is extremely immature and pretty much a man-child. He’s lazy and doesn’t put any effort into anything.¬†Two months ago Ned moved in. It was an extremely difficult decision for Mum to make and it’s a decision she didn’t make lightly but we need help with the rent and he’s that help.

For four and a half years it has just been me and Mum. Mum and me watching TV, Mum and me in the kitchen, Mum and me going for walks together and now it’s Mum, me and Ned. Not all the time of course; Mum makes sure that we get our mother/daughter time together but when Mum and I are just chilling at home watching TV it now includes Ned if he’s not in his room and if Mum and I are chilling in the lounge room that’s where he is too 90% of the time.
For four and a half years Mum and I’s home has been a safe place and a male energy free zone but now it’s contaminated with male energy and I’ve got to say, Ned’s energy isn’t that great as he sulks and has the sh*ts a lot of the time because he’s not getting what he wants which is Mum’s undivided attention and devotion to him. As you can probably tell by now, I’m not his #1 fan!

I completely understand why he’s here and he lowers the rent cost and I know this wasn’t an easy decision for Mum at all so I don’t resent or blame Mum for anything. I feel annoyed and angry that this (Ned moving in) was the only option we had otherwise Mum and I would’ve been homeless. I’m angry at Michael for not giving Mum the settlement she deserved and earned and instead he gave her nothing.

For the two months that Ned has lived here he hasn’t done anything to help around the house. He knows that Mum and I have chronic illnesses and still, no help. If he takes the recycling down he makes sure that we know and see him by telling us that he’s taking it down. What does he want? A medal for taking the freaking recycling down that we all do as well and that he contributes too? I’ve done the vacuuming and Mum has also and she asked Ned if he could do it and he still didn’t do it, I ended up doing it. His laziness infuriates me to no end because when I’m sitting on the couch all day it’s because I am so fatigued I can’t keep my eyes open and because all my joints and bones are throbbing and my feet are burning, NOT because I’m lazy. Ned doesn’t have any health conditions. He doesn’t have chronic fatigue or fibromyalgia or lupus, so when he doesn’t do anything and sits on the couch all day it’s because he’s lazy.

I am trying so hard to adjust to this big change and to remind myself that this won’t be another Michael situation. You would know what I mean by that if you’ve read some of my other posts but in a nutshell the Michael situation was him judging me, fat shaming me, telling me I was lazy, hating on me, getting jealous of me and my relationship with Mum and glaring at me every other minute for no reason. Basically he acted like he hated me and couldn’t stand me. I know Ned isn’t Michael because there’s only one Michael, and that’s Michael, but that doesn’t mean that the way Ned has been behaving this last week hasn’t triggered my PTSD into feeling like it was another Michael situation happening…
The other day Mum and Ned were fighting and Mum went to her room to get some space and an hour later or so Ned just walked into her room without knocking demanding that Mum talk to him and when she said no and went to shut the door Ned resisted against it.¬†So Ned barging into Mum’s room without knocking and resisting it when Mum closed it just reminded me that¬†that was how Michael would react to a fight so that then triggered me.
I promised myself that if another man ever behaved in a way that was out of line or threatening towards Mum that I would say something and stand up for Mum and not sit back quietly and not saying any thing like I was forced to do with Michael.
Well, it’s safe to say that I said something to Ned! I walked up to him in the lounge room and at first I talked very calmly and I said to him that if he wants to talk to Mum that’s fine but don’t you dare barge into her room without knocking and then resist against the door when Mum tries to close it. He argued with me and said that he didn’t resist against it and I said fine, but you do not just go into Mum’s room without knocking ever again. I started yelling then and said that I will not have another Michael situation again and he said that he’s not Michael and then I completely lost my cool and started screaming at him and I don’t really remember what I said but I do remember saying something about my health and Mum’s health not needing this and for him to never talk to me again…
He and Mum then got into a screaming match and they had a big fight and Mum told him to move out. He left for a few hours and then when he came back he just ignored me completely and then also ignored me all of the next day but that was also another trigger because Michael would just ignore me, so Mum told Ned to talk to me and to stop ignoring me and now we talk about the weather and how his keyboard wouldn’t work.
I told Mum that I would like to sit down and talk with Ned and apologise for yelling because I know that that’s not how you tell someone how you’re feeling and I would also like to explain to him that me screaming at him wasn’t all about him, that it was years and years of pent-up anger with Michael and I just released a little bit on to Ned and I would also like to explain that he triggered my PTSD and also to remind him that him moving in has been extremely hard for me and that it’s only been 2 months and that for nearly 5 years before that it was just me and Mum and that the past experienced I’ve had living with a man haven’t been great at all and to try to get him to acknowledge that I am trying and that he already knew that I didn’t really want him to move in.
Well, Mum’s asked for us all to sit down twice now as I would like to talk to Ned and both times he has said no and hidden in his room so we couldn’t talk.
Mum and Ned are working on the fight they had and the issues in their ‘relationship’ and Mum has decided to move on from the fight so Ned isn’t moving out now.
I’m hoping that within the next two days I’ll be able to have my talk with Ned.

I have a hard time letting things go and forgiving people, that’s something I have to work on. Mum on the other hand, is very forgiving and good at letting things go…

So, so far this big change hasn’t been the best but I really do hope that it does get better because I don’t like feeling how I feel towards Ned and feeling triggered… I also don’t like how this has put Mum in the middle of Ned and I; that’s not fair on her and she doesn’t deserve to feel like that and have to feel like she has to choose between us. I would never want her to feel like that.

Keep safe everyone,
Maddy xoxo

P.S- I now have an email! Feel free to send me any thoughts you have on my posts if you don’t want other people to see and also feel free to send me your ideas for what I should write about next! Here’s my email: depressedmesswithanxietyandgrief@outlook.com

Feature image: http://webecoist.momtastic.com/2008/11/30/earth-seasons-spring-summer-winter-fall-autumn/

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Death, Depression, Family, Grief, Siblings

How Many Siblings Do You Have?

(Just for reference I have a younger brother who is 11 years old and an older sister who is 21 years old )

How many siblings do you have? It’s a simple question that surprisingly comes up quite a lot in conversation. Whether you’re on a date getting to know someone, in general chit chat/small talk or at a doctors appointment, people for some reason feel the need to ask you about your siblings and if you have any and how many. I don’t know why they can’t stick to talking about the weather or other neutral topics…¬†I do understand that it’s what we’re grown up to ask and that it’s polite but maybe we need to start teaching people to think that maybe the person they’re about to ask has lost a sibling and that asking that simple question might not be so simple for them. ¬†

It’s a question that a lot of people don’t have a problem answering but to us bereaved siblings it’s a reminder of everything that we don’t have, have lost and of the brother or sister who has died. As soon as you hear those words it’s like a punch to the gut and it feels like your heart is being ripped out of your chest; well that’s what it feels like for me anyway.

Whenever someone asks me that question I always freeze and start to stutter out words that make no sense or look at them and start to cry because I never know what to say.
What do I say?
Here are my options that I have come up with:

  • That I have 3 other siblings
  • That I have 2 other siblings and one died
  • That I have 2 other siblings and leave Chase out of it completely and don’t mention him at all

Is it disrespectful to Chase if I don’t mention him at all though? But¬†if I say that I do have two other siblings and that one died then they’re probably going to want to ask me about it and how he died. The problem with that is that I then don’t know how much or how little to tell them and what I should and shouldn’t say about the whole thing.¬†When people ask me how many siblings I have they sometimes also want¬†to know how old they are and if they’re younger or older than me. ¬†Chase died when he was 5 so if I do decide to include Chase in my siblings when answering the question do I say the age he was when he died or the age that he would be now if he was still alive? He would be 9 if he was still alive today…

So many sub-questions for what would seem like an uncomplicated and easy question to start with and to answer…¬†

Losing a sibling is such a different experience to losing a child, it’s a different relationship that no one will ever understand except you and your sibling.
I feel like I not only lost my brother, but I also lost my best friend and partner in crime when Chase died and reliving everything that happened if someone asked me how many siblings I have and I include Chase it will just be too painful to have to do that and to try to keep myself together.¬†¬†It’s too painful to think about let alone say out loud.

I wish there was a handbook that could tell me how to grieve and what I’ll feel and what to say in situations where I don’t know what to say. My Mum says that it’s a good way of remembering your sibling and that might be so, but for me, it just makes me really sad and brings up all the grief feelings to the surface that I try to bury down so I’m not consumed by them everyday.¬†

It’s incredibly tricky and confusing¬†to know what the right answer is and I just don’t know what to say…¬†Maybe one day I will figure it out but at the moment whenever I get asked I’ll probably still freeze and start to stutter out words that don’t make sense. ¬†

If any of you reading this post have lost a sibling and get asked that question what do you say and what’s your answer to the person asking you? Let me know in the comments.¬†

Keep safe,
Maddy xoxo 

Feel free to follow me on twitter. It’s a bit all over the place but hey, that’s me! ūüėČ

 

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Chronic health condition, Depression, Doctors, Exhausted, Family, Grief, misunderstood, Mother and daughter, Tired

Behind The Mask

Behind my mask I am struggling everyday and I am trying to be the strongest that I can be.

A lot of doctors have no idea about mental health illnesses like depression and anxiety. It astounds me when a medical professional (especially if they’re in the mental health field) says or does something completely wrong knowing that you are mentally ill.¬†

I had an appointment with my gastroenterologist the other month and it was the day after Chase’s birthday or death, I can’t quite remember… Anyway so I was obviously more upset than normal and crying more, so I went into his office and had my appointment and told him how I’m really struggling at the moment and he only said ‘Well of course you are’, yeah that’s fine whatever, but when I went back two months later, I had been having a really hard time and feeling suicidal the week before the appointment so I went in and he asked me how I was going and I said ‘not good at all actually’ and he just said ‘well you look like you’re doing a lot better which is good’ and mum was with me this time and she spoke up and said ‘no, she really hasn’t been doing well and she’s really struggling’. Bob (my gastroenterologist) cut her off and argued with mum saying that I look like I am doing better and then I spoke up and said ‘just because I’m not crying doesn’t mean I’m feeling any better.’ Bob just stayed quiet and ignored that and went on to ask me about how my gastro symptoms are going. I felt so belittled by Bob and like he didn’t understand mental illnesses at all. It was a really horrible moment.

In the past a similar thing has happened and it was even harder because it was in a special mental health school. The teachers’ always thought that because I had smiled or laughed that day I was automatically not depressed anymore and they would treat me differently. My case worker saw that and understood how I was feeling, so quite a few times he had to remind those teachers that just because I smiled or laughed doesn’t mean I’m all better now. Sometimes I feel very ¬†misunderstood by doctors and it’s really hard to understand because they’re medical professionals and you would expect them to have at least done a psych rotation at medical school right?¬†

The other day mum was at the doctor and a couple of days before mum’s appointment I saw that doctor. Mum has her appointment and the doctor tells mum that I’m doing quite well and I look like I’m doing good; or something like that.¬†
Just because I have clean clothes on and I brushed my hair doesn’t mean that I’m not struggling every day. What do doctors expect a depressed person to look like? Do us depressed people just have to walk around in our pyjamas all day with knotted hair and not having washed for a month? Or do us depressed people not get out of bed ever? But then how are we meant to go to the medical professionals to get help? And if we stay in our pyjamas all day not caring about self hygiene or stay in bed all the time and we do go to the medical professionals for help, they say that we’re not helping ourselves and making ourselves worse by not getting dressed and brushing our hair! So really, it seems that we can’t win.¬†

A month ago I got into a really bad depressive slump and I was very suicidal and nearly ended up in the pysch hospital again. My mum called my psychologist because she was worried about me and didn’t know what to do and my psychologists answer was to take me out to lunch! Because when I’m feeling like killing myslef because I see no reason to live, the only thing I want to do is go to a busy place for lunch and hang around outside! No, what I actually want to do is take my medication that knocks me out and go to bed until I feel like I’m not going to harm myself. When my psychologist said that, I felt so… I don’t even know what emotion I felt! I honestly couldn’t believe she had said that.

You kind of lose faith in the medical system when people who are meant to help you say such unhelpful and ignorant stuff.  

¬†I feel like I have gotten very good at hiding how depressed and hopeless I am. I’ve had to implement my poker face since Chase died. No one I have ever met has seen through it and seen how much I am struggling. It’s so tiring being so strong all the time and keeping my sh*t together. I just want to stay in bed all day where it’s warm and I don’t have to worry about anything outside my bedroom. I don’t know who I am outside of being majorly depressed, anxious and chronically ill.
I go to my appointments and I get dressed and I have showers and brush my hair and brush my teeth and wash my face, I do all this stuff and just because I do it, it doesn’t mean that I’m suddenly not depressed and mentally stable.¬†

I am broken and I will never be whole again. There will always be a part of me missing that Chase took when he died. I will always be grieving and some days it will be too hard and I WILL stay in bed all day and cry.
Being strong is good but breaking down is also good. I can’t always be strong.

I don’t know what the doctors need to see that I am struggling. My anxiety and depression are overwhelming a lot of the time but I keep going because it’s the only choice I have. I’m so sick of doctors and their small minded ideas of mental illnesses.
If doctors want to see me when I’m at my lowest then come on over to my house and watch me cry myself to sleep and cry so hard I start hyperventilation or I cry so hard that I feel like I’m going to throw up or see the look on my face when I think about everything I struggle with every day or the nosies I make because I’m so sad and I just want to die. If they want to see that to prove to them that I am in fact not doing well and depressed then they can.
I keep myself together so I can help mum because she can’t lose another child. I am struggling and I just want people to see that and acknowledge that and not assume that because I’m smiling or laughing I’m not dying inside. All I want is to be understood.

Behind my mask I am struggling everyday and I am trying to be the strongest that I can be.   

Keep safe,
Maddy xoxo 

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Depression, Family, Mother and daughter

The Real Life Gilmore Girls

Mum and I are like the real life Gilmore Girls. Mum and I are incredibly close and she is my best friend; I honestly wouldn’t know what to do with myself if I didn’t have mum in my life and she wasn’t my mum.

Like I said before she is my best friend but also my sister, father, aunt, grandma, daughter and all round the greatest person ever.
Although mum is a lot like Lorelai I don’t think I’m that much like Rory because to be honest I think Rory is rude, spoilt, selfish and not very respective to her mum.

I love my mum more than anything on this earth. She is the most resilient, strong, loyal, caring, smart, beautiful, loving, empathetic, compassionate, generous, funny, witty, angelic, kind, ambitious, amusing, brave, conscientious, courageous, easygoing, friendly, gentle, helpful, and honest person I know and will ever meet.
Mum has been through so much in her life and the fact that she is still living and this amazing after all that she’s been through is astounding. She really is my role model and inspiration.

Mum and I have always gotten along, we don’t really fight about anything and if we do we get over it pretty quickly.
When we were living at Michael’s we were close but definitely¬†not as close as we are now. ¬†We couldn’t be as close as we are now because Michael was such a jealous freak and would try to come between us all the time. I think the trauma that we’ve gone through has definitely made us closer.

Mum and I have a lot of mutual respect for each other and we’re equals so I think that’s partly why we get along so well. Don’t get me wrong, ¬†I listen to her when she tells me ‘off’ but from day to day we’re equals. The other reasons we get along so well is because we also have a lot of¬†love, loyalty and honesty towards each other.¬†Mum respects me as a person and my decisions and I respect her as a person and her decisions.

Mum and I have an incredibly special bond, it’s a bond like no other. She is one of my soul mates and I am thankful every day that I get to spend my whole life with her.
Mum and I have so many laughs because we have a similar sense of humour so we laugh at things that are pretty inappropriate and that others wouldn’t find funnyūüėā.

My mum is my rock and I know she will always be there for me and I will always be there for her. We have supported each other throughout these 4 years of hardship and there is no way I could have gotten through it without my Mumma Bear.

Mum is a cool mum, she’s the type of mum that all your friends love because she gives great advice and is more like part of the group than the adult of that friend.

tenor.gif

Here’s the letter I wrote to her a few posts ago:
https://depresssedmesswithanxietyandgrief.wordpress.com/2017/03/06/a-letter-to-my-mumma-bear/

I don’t think there is much else I can say about our relationship except that it’s incredibly special and no one will ever be able to come between us and the friendship that we have.

Love you Mum!!!

Keep safe everyone and I hope that you have your own Lorelai in your life.
Maddy xoxo

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Death, Depression, Family, Grief, Step-father

What happens after (Part II)

This post is a little traumatic when talking about my brother, proceed with caution.

So we’ve covered the horrible step-father, getting kicked out of home and the plethora of health conditions, now we’re going to cover my brother dying and then write about my anxiety, depression and my suicidality in part 3.

My brother dying:

I was at the pain clinic for the day getting all my assessments done and I was talking to the psychologist and she asked me if my brother dying was a shock to me and I just thought what a stupid question that was to ask. No, I totally knew Chase was going to die and it wasn’t a shock at all (include heavy sarcasm when reading that). Like seriously? Who even asks that?! Of course it was a shock!¬†The psychologist also asked me to explain what it was like Chase dying, it was not only a shock but a heart breaking experience that I will never ever be able to articulate and understand. I will never be able to explain how it was¬†to watch Chase loose all his motor functions and the ability to walk, talk, eat and eventually breathe. I will never be able to explain what it felt like when I literally saw him take his last breath or what it was like to see his little blue coffin with superheroes all over it get lowered into the ground. Or how he looked before we nailed the coffin shut. Those memories will haunt me for as long as I will live. So yes psychologist lady, it was a complete shock when Chase died.

On May 31st it will be 4 years since Chase died and I still haven’t fully come to understand what that means. I’ve mentioned Chase before and a few memories but I thought that I will write down the whole experience in this post.

Here it goes:

It was a Thursday evening at home and Mum had noticed that one side of Chase’s face seemed to droop a little bit. She then asked him to do some pushups and he couldn’t do them (he always could, he was a strong little man) and when he stood up he was all dizzy and nearly fell over. This was not normal behaviour and now we were all a bit worried. The next day (Friday) Mum took him to the Royal Children’s Hospital to get him checked out. She was there all day and all night. When I got home from school on Friday Michael had to go into the hospital because Mum called him telling him that a neurologist and oncologist wanted to talk to them because they had found something on Chase’s MRI. Michael drove us all in (Michael, Dusty and me) into the hospital and we met Micahel’s brother Paul there. Michael left us with Paul and went to go find Mum.
I didn’t know what was happening and what was wrong wth Chase or that Mum and Michael had to have a meeting with the oncologist and neurologist, I learnt this later on when Mum told me. Paul took us (Dusty and me) to McDonalds and then to get ice-cream at the Docklands. Paul wouldn’t tell me anything that was happening and after the ice-cream he drove us home. I had to go into the Royal Children’s the next day (Saturday) for an MRI of my shoulder. Paul drove us in that morning and we met Mum in Chase’s room. I still didn’t know what was wrong. Mum was crying and Chase was just sitting on the bed playing with one of his toys. I got the MRI of my shoulder done and I drove home with Mum and Chase. In the car when Chase was sleeping I asked Mum what was wrong and she started crying again, I asked if Chase needed brain surgery and she said no. She then said to me “Maddy, Chase is VERY sick.” I then started crying also and asked if he has cancer, Mum said yes and then I yelled out “NO” and told her that I thought she was lying. Mum said she was sorry and that she would tell me everything tonight. We went home and Chase wanted muffins so I made him some muffins. That night when he was asleep Mum told me that Chase had Diffused Intrinsic Pontine Glioma (DIPG) and that it was terminal and that he didn’t have much longer to live.

My aunty drove up from her farm Sunday and we had all our family come over. I took Monday and Tuesday off school. On Tuesday Mum and Michael went back to the hospital to talk to some more doctors about what could be done. Basically nothing, Chase could’ve had radiation and chemo but it would’ve been for every day for 6 weeks and it would’ve only made him sicker and not actually help anything and even if it did shrink the tumour a little bit and give him another few months he would’ve spent those months in hospital incredibly sick from the chemo and radiation. So Mum and Michael decided against doing any of that and took him home: plus Chase hated hospitals.
I went back to school on Wednesday and got the school counsellor there to tell my home group and teachers what was happening. We didn’t tell Chase what was happening, he was only 5 but he was so clever and smart that he knew what was going to happen to him anyway. He started asking Mum questions about death and what happens after you die which was weird because he had never asked those questions before and he was only 5 and what 5 year old asks about that stuff?

We had an early Christmas and birthday because we didn’t know if he was going to make it past his birthday and to Christmas. The ¬†Make A Wish foundation funded the birthday party for Chase. They hired a limo, had people dress up as superheroes, rented out Ace Space, got a birthday cake made and presents donated. They did a great job and I thank Make A Wish for everything that they did.

Chase started deteriorating pretty rapidly; from diagnosis date to the day he died it was 12 weeks. March 8th to May 31st. Chase lost the ability to walk so he had to be carried everywhere and then the ability to talk, swallow properly and then to breath.

I was still having to go to school and do all that, that was because of Michael. If I had it my way I would’ve been at home with my brother who was going to die and spending as much time with him as I could.
Chase only really wanted Mum throughout the whole thing. She was amazing and I will never know how she did it. She literally became an angel and looked after Chase with so much love and support. My heart aches for her when thinking about everything she went through.
With Chase only wanting mum it was hard for me to spend any time with him. I did teach him to play crocodile crocodile though and that was nice. I don’t resent Mum or Chase for that, but it does hurt that I wasn’t able to spend as much time with him as I would’ve liked…

Now to the hardest part, the day he died:

It was a Thursday and I got up to go to school. Chase wasn’t awake when I left so I don’t even remember what the last thing was that I said to him or did with him was.
I came home from school and the palliative nursers and doctors had come during the day when I was at school. When I got home from school Chase was in his bed with a whole lot of needles in him for the medications they put him on (pain meds and stuff like that). I knew then that he wasn’t going to be around for much longer, I just didn’t know he was going to die a few hours later. The offical date and time that he died was Friday, May 31st 2013 at 12:12am.
At around 6pm on Thursday his breathing started to change and mum rang the palliative care team. They listened to it over the phone and told us that it won’t be much longer, I sat on his bed for most of the night holding his hand while mum was laying next to him. I also took a lot of pictures because I knew this was the last time that I would be able to. Chase was unconscious the whole time.
Mum stayed with him in bed while Michael, Dusty, Mum’s friend Anna, Dusty’s grandparents and me watched a movie in the lounge room. It wasn’t my choice to do that but anyways…
At 12:10 am (Friday morning) Mum yelled out Michael’s name and we all went running down to Chase’s room. Chase had died in Mum’s arms. We all stood there crying and watching him. He then he took a breath; the hope that I felt in that moment was like nothing I will ever feel again. I can’t even explain it, but then he breathed out and didn’t breath again, that was at 12:12am.
I literally saw my brother take his last breath. I can’t tell you what happened after that as I don’t really remember. I do remember Mum and Michael washed him and put him in new clothes but I don’t remember much else. I do remember that I finally went to bed at 4am and when I woke at 8am, Anna and I went and drove to pick Holly up (she was living in a share house somewhere). At 4pm, my friend Casey came over and she spent some time with me while her mum spent time with my Mum.

Mum and Michael decided to do the funeral themselves and not take Chase to a funeral home as they’re evil and don’t take care with people’s loved and departed ones. They hired a mobile fridge that was plugged in in the carport and put him in his little coffin and that’s where he stayed until Wednesday June 5th, 2013 when we buried him.

There were a lot of people at Chase’s funeral. It was no where near a ‘celebration of his life’. It was depressing, sad and tragic that we were having to bury our 5 year old son and brother. Mum wrote his eulogy and the funeral speaker lady read it out. I wrote a poem and I read that out myself.

Here it is:

Our lives go on without you Chase but nothing is the same.
Our broken hearts are opened wide when someone speaks your name.
I don’t know how we’re going to live a life that you’re not in and never again hear those superhero songs you loved to sing.
You’ll always be my baby brother that I kissed and held so tight and that is what I think about in the coldness of the night.
I love you Chase

After that was done we carried his coffin over to his grave and lowered him in, we then each got a handful of dirt and threw it on. There was a wake afterwards at the pub, we went to that and at around 4 I got a lift home from my neighbours. The next Monday, Michael made me go to school and we were made to continue with life as if nothing had happened and that we didn’t just watch Chase die and bury him. I still can’t believe Michael was able to start again that soon afterwards.
I had a really hard time at school with friends and classes. I spent a lot of my time in the Wellbeing Centre crying and trying to figure how I was meant to go on with life without my baby brother next to me.

I love Chase so much and he was my best friend. He was the sibling I connected with and got along with the most. He was my personal superhero and I miss him every single day. I think about him every day and every day I wish he was still here with me. Chase shouldn’t have died, he should still be here growing up and living and experiencing everything life has to offer. He would be 9 now if he was still alive and in primary school probably being the smartest kid in his class. He was so smart, loving, caring and such a beautiful soul. He was so wise and everybody who met him felt like they had encountered something special. Chase was everything and he was taken away by cancer. I still ask so many questions to myself and to my counsellors about why he died and why it was him and I will never get the answers that I’m looking for. I will never know why he died or why it was him. Chase left a big hole in my heart that will never be filled and I will continue to miss him and love him and cherish the memories I do have with him.

Chase will forever live in our hearts and he will never be forgotten. 

My psychologist gave me a quote when I first started seeing her from Jon Kabat-Zinn and that quote was: You can’t stop the waves, but you can learn to surf.
I honestly think that that quote covers grief. Grief does come in waves and I am learning to surf those waves and to try not to let them drown me. Grief is so incredibly complex and no one can compare you for what it feels like. 

I love you Chase. 

Keep surfing everyone,
Maddy xoxo 

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Chronic health condition, Death, Depression, Exhausted, Family, Grief, Tired

I’m so tired of everything

 

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I’m so tired, not in the sense that I need more sleep, well I do need more sleep, but I’m talking about being tired mentally and emotionally. ¬†I feel like I’m in quick sand just trying to keep my head above board and trying to live day by day. If I only had my depression and anxiety and grief to deal with I think I’d be ok but I have so many other¬†things to have to deal with. It’s too much; especially for a seventeen year old.

I don’t understand why some people have such easy lives with nothing bad happening and then some people have to struggle to keep going and not give up. I really do feel like I got the short end of the stick and I’m just going to say it… It’s not fair, I deserve better! I know people who live their lives¬†with nothing ¬†bad happening and they just travel the world and have a big group of friends and then there are people like me who have a dead brother, generalised and social anxiety,¬†a plethora of health conditions and a mountain load of grief weighing them down everyday. I feel as though I deserve something more and better than this. I wake up in the morning in pain and feel like I haven’t slept at all even though I could have¬†slept for 12 hours I then shuffle my way down the hallway to start complaining to mum about how tired and sore I am and how I look 7 months pregnant today instead of my standard 5 months, I then have to take my medication which I take three times a day so I can eat without experiencing horrible stomach aches and nausea and then I spend my day doing what I can depending on how tired I feel¬†and how much pain I’m in. Then when it comes time to go to bed I lay there for hours and hours and end up getting to sleep after 3am or sometimes I don’t get to sleep at all! Yay for me.

How am I meant to do a diploma and placement if I feel tired all day everyday? I’ve tried taking sleeping pills and they work for the first week but then they stop and when they do work the next day I wake up feeling like I have a massive chronic fatigue flare up. I really can’t win.¬†

I need a break, even if it’s just for a day I would really like a break from my life and everything that comes with that, but that’s not possible and that’s really sad because this is my life and I have to learn to accept it for what it is. Yes it’s pretty sh** at the moment but I’m really hoping that it starts to get better soon and something changes because I can’t go through life not enjoying anything and just going day by day. I need something more and to believe that I will travel the world and have friends and a social life and that I will be happy one day. I need to believe that because if I don’t then what’s the point of living? My only reason is mum and that’s enough but it would be nice to live for something more as well.¬†

Well It’s 4am and I’m catching up on Millionaire Matchmaker while I write this blog and I don’t see sleep in the near future so maybe I should have breakfast?! ūüėČ

Love to you all,
Maddy xoxo

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Ps- I love Greys Anatomy 

 

 

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