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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Abuse, Body image, Chronic health condition, Death, Depression, Exhausted, Family, Grief, Step-father, Tired

What happens after (Part 1)

What happens after you have a horrible step-father, your brother dies, you’re kicked out of your home, you get a plethora of health conditions, you become incredibly depressed, you become suicidal and you have such bad anxiety that some days you can’t even look out the windows or leave the house because of how anxious you feel? What happens after all that? Well, it changes you in ways you didn’t know even existed and you learn to live with everything as sad as it sounds. How I’ve felt for the past 4 years has become my normal and that’s so depressing because my new normal is sh**! The only good thing I still have is my mum, that’s all. One person keeping me here on earth. 

I think I’ll talk about each issue separately starting with Michael:

A week after Chase died I was forced back to school by my horrible step-father, he went to work and my poor mum was left at home to deal with the silence and horrendous memories of the house alone. We were all forced to go back to normal by Michael (horrible step-father) but how were we meant to go bak to normal when our normal had changed so drastically and completely in 12 weeks? I don’t understand how he was able to get up and go to work so soon after! Like what?! Who does that? Michael also thought that two weeks after we buried my brother he would talk to me about how I’ve put on a little bit of weight and how I need to loose that and be more active outside. Yeah thanks Michael, that really helped. Psychotic asshole. 

 Michael was what you didn’t want in a father or step-father. He was angry, mean, cruel, hurtful, cold, selfish, fake, narcissistic, jealous, abusive and the biggest asshole to walk this planet. He was so mean and cruel to me for no reason. He used to tell me that I was fat and lazy and that I will end up smoking bongs on the couch doing noting with my life. After dinner when I would wash the dishes he would just sit in his spot at the head of the table and glare at me for no reason. I could feel him staring at me and judging me and sending his hate towards me while I was cleaning the pots and pans. He used to also lock me outside after I got home from school because he wanted me to spend more time outside and my mum couldn’t do anything because if she spoke up he would punish the rest of us and not give us money for food or firewood for the heater or water for the water tank and then mum, my brothers and I would all have to suffer at the hands of his anger. Mum stood up for me when he really crossed the line but in the end I learnt how to keep out of his way and stay away from him. When he wasn’t home after I would come home from school that was when mum and I caught up but as soon as I heard his truck or car come up the driveway I would run up to my room and not come back down until dinner time. 
I didn’t have much of a social life because all of my friend were scared and didn’t like Michael, they didn’t want to come over and talk or see him and I don’t blame them, I didn’t want to be there either. I would often think about running away but then where would I go? And leave mum there alone? I don’t think so plus I had no where to go. 

Michael started being mean to me at around the age of 10 as I was getting my own thoughts and feelings towards people and individuating into my own person. He didn’t like that I started seeing him as he was and not as the perfect do no wrong step-father I always thought he was. When I turned a little older that’s when the real glaring, judgement and negative comments would come.
When he and mum were fighting he would all of a sudden be nice to me and pay an interest in my stuff but that would only last until mum sucked up and apologise to him. Once they were back together and ‘all good’ again he would go back to not paying any interest in me and my school stuff and ignore my reports that I would want to show him because I got A’s and I was proud of that. 

Michael thought he knew everything about everything when in fact he knew very little. I understand that because he was raised by not very warm and loving parents and he grew up the hard way moulds him into who he is today but I don’t understand why he then has to teach his kids and treat his kids how he was treated. He never loved me, he saw me as a nuisance and a road block in the way of what he really wanted which was mum. When we used to go out as ‘one big happy family’ Michael would literally push me out of the way if I was walking next to mum because he wanted to walk next to her instead; how petty is that? I’m just a kid wanting to walk next to her mum and Michael the big bully has to come and push me out of the way. In the end it got very hard not to show my hatred towards him, it got harder everyday not to snap and tell him how much I hated him but in reality that would never happen because I was scared of him. He was a big, tall, angry, scary and a violent man. I never stood a chance. 

I don’t and never will blame or resent mum for staying with Michael for so long. I understand that she had no money of her own and no place to go or support, she also had Dusty (my other brother) and Chase to think about. We were stuck. All of us were abused by Michael and it has affected me in so many ways. Nearly every night I have a nightmare with Michael in it, if I hear a car that sounds like his I get anxiety and have to stop from having a panic attack and now I have such bad self esteem and body issues because of him and what he used to say to me that I loathe myself. I can’t look in the mirror without hating what I see. He used to also call me lazy all the time so now when I’m too tired to do anything because of my chronic fatigue instead of understanding that I have an illness and I’m unwell I just think of myself as lazy which means mum spends a lot of time reassuring me and reminding me that I’m not lazy and that I’m unwell with a medical condition and valid reasons for sitting on the couch watching TV. 

I often watch movies where the girl has the perfect dad who loves and cares for her and so wish that I could have what she has. I know that a lot of girls don’t have a dad like that but I still can’t help but wish that I had a dad who would do anything for them and who builds them up instead of smashing them down. Michael was a horrid man and I will always have to go through life with the damage that he’s caused to me and my body; mental and physical. I never want to see Michael or talk to him again, he contributed to my brokenness. One day I might be able to forgive him but that’s not right now.
I try, I really do but it’s so hard when I still think and am reminded about everything he did. It also doesn’t help that when Dusty comes over he’s a constant reminder by the way he acts and what he says, he’s exactly like Michael. Dusty has no respect for me and thinks I’m fat and lazy just like Michael does. 

Getting kicked out of home with nothing but a few boxes of my clothes:

It was a Thursday night and mum and Michael had been fighting for quite a while. Mum had cooked us all dinner but Michael wasn’t home; he came home after dinner had been served and we had cleaned up. Dusty was still eating his though and he wanted some more cheese but we didn’t have any as we had used it for our dinner. Michael went and warmed up his dinner and Dusty asked for some more cheese, Michael went to the fridge to get some out but as there wasn’t any left he started slamming things and yelling at mum about there not being any cheese. Mum went down to her room and Michael sat down to eat his dinner a few minutes later Micahel got up and stormed down the hallway to their room where mum was. He slammed the door and started yelling at her. Mum started yelling out that Michael was hurting her and to let her go and to stop touching her, I eventually went down do their room (I had NEVER interrupted their fights before, I usually go to my room) and opened the bedroom door and screamed at Michael to let her go. He had mum by the wrists and was screaming angry words and threats right in her face. He looked like a mad man and when I walked in. He let her go and told mum that she needs to get out of the house and that he’ll give her 6 hours to move out tomorrow (so Friday) after he had physically assaulted mum and told her to get us out he turned around and yelled at me right in my face to get the hell out of his way; he didn’t say it in exactly those words though. I honestly thought he was going to physically hurt me too. After had he had finished yelling at us and being physical with mum he went down and ate his dinner. Yes that’s right, after all that anger and getting physical with mum and went back to the dinner table and ate his dinner like nothing had happened, what a psycho. Who does that? Who can physically assault his wife and demand that she moves out of ‘his house’ and then go and eat dinner like nothing had happened in the past half an hour? A psychopath that’s who. After he finished dinner he went outside and got the boxes from storage and gave them to mum and told her to pack up her sh** and then he left again. Mum and I started to pack Chase’s room first, taking the most sentimental stuff like his clothes and toys and a few of his funeral programmes. After Chase’s room I went up and threw all of my clothes into boxes not taking notice of what I took and what I left. I left so many of my things behind, I literally only took my clothes. On Friday I took the day off school and mum and I moved our boxes to mum’s little investment house in the town over. The house was incredibly small with only one bedroom, no heater, no water, no gas, no firewood and no cooling; not that we needed cooling as it was the middle of winter! Mum and I had managed to move all our clothes and stuff within the 6 hours that Michael gave us to move out.

The hardest part of getting kicked out was leaving Chase’s room and everything in there. Chase’s room was where I could go and cry and miss him without the judgment of Michael. Living in that little house was incredibly hard when there was 3 people living in a one bedroom house. Dusty and I slept on mattresses that were given to us by friends on the floor in the bedroom meanwhile mum slept on a mattress in the lounge room. 
There was no privacy at that house and no place where I could go and break down and let out all the feelings I had abut what had happened and Michael. We got through it though and after mum borrowed quite a lot of money off one of her friends we were able to get out of that tiny house and move into a normal size house where I had my own bedroom and bathroom and mum had her own bedroom and bathroom. Plus it had heating and cooling which was great! My anxiety was just starting out but it wasn’t that bad that I couldn’t go to school or leave the house. My depression also wasn’t bad either, it was a year after Chase had died so I was still in the numb, processing stage and hadn’t completely gotten the fact that my brother had died.

Health conditions (Gastroparesis, chronic fatigue syndrome, pelvic floor dysfunction):

My health conditions mostly started after we moved into the normal house. That’s when the extreme bloating, pain, fatigue and other yucky symptoms started to happen. It’s also when my anxiety became severe and so did my depression and I ended up leaving my mainstream school and enrolling into Distance Education. I’ll talk about my anxiety and depression more in part 2 of ‘What happens after’ but for now I’ll talk about all the stomach issues and fatigue. 

After I had left my school and started Distance Education I’d wake up every day looking 7 months pregnant and in a lot of pain. I would also sleep for 15 hours a day and be fatigued for the rest of the hours I was awake. I made trips to the emergency room quite a few times because of my bloating and pain and also because I would have blood in my poo (TMI I know, but that’s part of my life and this is a blog about my life so…) which isn’t normal. I would always get sent home from the hospital and told that I was fine and to take over the counter pain relief; it didn’t help with all the other symptoms, it helped with the pain a little but but that’s it. I got referred to see a gastroenterologist at the Royal Children’s Hospital and he booked me in for a colonoscopy and endoscopy. As I had thought they didn’t find anything and he told me to go home and to come back in a few months. Well, I wasn’t happy with that so I went and saw a paediatrician who told me I have chronic fatigue syndrome and associated POTS but my bowel issues and bloating was because I was overweight and that I just had to lose the weight and I’d be fine. Yeah thanks. Mum and I were relieved that we finally had an answer as to why I was so tired all the time and got exhausted walking from my bedroom to the lounge room, but as my stomach issues persisted and I still had pain, bloating and blood in my poo we went and got a referral from my GP to go see a different gastroenterologist privately. My new gastroenterologist has been great up until now as there’s not much more he can do for me unfortunately. 

When I went in for my first appointment he took me very seriously and listened to everything I had to say and told me that he thinks that I have Ulcerative Colitis, he put me on steroids and booked me into hospital to have another colonoscopy done and to get an MRI. Well, I went on the steroids and got the unfortunate side effects from them (extreme hunger, mood swings, moon face ect) and then went into hospital for what turned out to be a week long stay. I had to do a 3 day flush out which meant I couldn’t eat anything solid for three days and had to take a number of disgusting laxatives. If you’re reading this and you’ve had to have a colonoscopy before then you know what I mean when I say the actual flushout stuff is the most disgusting thing in this world. Anyway, I did the colonoscopy and they didn’t find anything (typical) so I was taken off the steroids and then had to have an MRI done of my whole digestive system; that was super uncomfortable as I had to lay on my stomach for an hour. Once again they didn’t find anything abnormal and I was told I just have sever IBS and I was sent home and to get another follow up appointment with my gastroenterologist. We went back to him and he told me because I’m so constipated I have to do a flush out once EVERY MONTH! Nooooo 😩😷 So I continued doing that and as nothing was improving, I was still bloated, in pain and constipated he told me that I needed to go get a gastric emptying study done (http://www.medicinenet.com/gastric_emptying_study/article.htm). So I went and did that and FINALLY something came back abnormal and we got some answers. It turns out I have something called Gastroparesis. This pretty much means that my stomach is a little bit paralysed and doesn’t empty food as quickly as a normal stomach does. I can’t tell you how relieved I was that I finally had some answers! So the end diagnosis with my stomach is sever IBS and Gastroparesis. My gastroenterologist has put me on a medication called Motilium which has really helped; I can now eat without getting a severe stomach ache and severe nausea which is nice. I still get pain, I’m still bloated and I still get constipated but now I know why. 
The cause of my constipation isn’t just from my gastroparesis and IBS though, it turns out I also have Pelvic Floor Dysfunction. The problem with my pelvic floor is that it’s always tight and doesn’t relax and let go. You know when you do your kegel exercises and you can squeeze in and then relax again, well my pelvic floor doesn’t relax when I let go. This means that it’s hard for my poo to come out and it also means I can rarely use a tampon when I get my period. I have exercises I do but otherwise there’s not much else I can do at the moment. 
I’ve talked about my Chronic Fatigue before so I won’t go into that again… https://depresssedmesswithanxietyandgrief.wordpress.com/2016/07/28/living-life-in-the-slooooooow-lane/

Alright peeps, this is a really long post so I’ll leave it here and I’ll upload part 2 next week. Stay safe. 

Maddy xoxo 

PS- Go check out a singer called Agnes Obel if you don’t know her already. She has some beautiful songs. 

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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?! 😉

Love to you all,
Maddy xoxo

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Ps- I love Greys Anatomy 

 

 

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Chronic health condition, Family, Mother and daughter, Uncategorized

A Letter To My Mumma Bear

 

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Dear Mum,

You are the most amazing person and mother I will ever meet. You inspire me to be a better person every day and to keep going, you are my rock for staying here and I yours. Your strength amazes me. You’ve been through so much in your life and the fact that you are still alive, especially after Chase is astonishing. 
Teachers at school used to ask us who our role model was or who’s a person that we look up to and my answer to those questions every time was you, and it still is. You truly are my role model and if I end up half as good as you I will be happy. 

You are the most amazing mum even though you don’t think so sometimes. For the past 4 years I have definitely not made your life any easier between my stints in the psych ward and all my heath issues you have stuck by me and given me the power to keep going. If I didn’t have you in my life I would be lost and most likely dead. You are my everything and I am so thankful that you haven’t given up on yourself, me and us. Thank you for loving me like you do and being not only my mum but my best friend and sister. I honestly couldn’t ask for a better mum, best friend and sister. You are my family. Me and you, just us two remember.

Here are a few words I would use to describe you:
Kind
Compassionate
Loyal 
Trustworthy 
Generous 
Loving
Funny
Strong
A survivor 
Spiritual 
Courageous 
Considerate 
Empathetic 
Sympathetic 
Intuitive 
Passionate 
Reliable 
Witty
Amazing
Angelic 
A role model 
Beautiful 
Brilliant 
Inspiring 
And there’s more but my brain isn’t working and I’ve gone a bit blank… sorry about that! 

You really are all those things I mentioned above, you’re pretty freaking amazing.
I’m sorry your life has been so hard and you have never really had a break from all your stresses, but the fact that you’re still living after everything you’ve been through really does amaze me. If I was you I would’ve died a loooong time ago.

Thank you for keeping me safe from Rohan and Michael. I know that you feel as though you could have done more about Michael sometimes but the truth is, is that you couldn’t! You did everything you could to prevent Michael from becoming worse and making Chase and Dusty suffer more also. I do not and never will resent you or blame you for what Michael’s done. You stood up for me and helped me get though the abuse the Michael did caused and you were always there for me, I’m just so sorry that you had to go through that for so long and suffer the way you did. It broke my heart to see you so depressed and sad while with him. I wish that I could’ve done more to help. 

I’m so so sorry that you lost Chase, I can’t even begin to imagine how that must feel. I’m so sorry you lost your soul mate and twin flame. So many times I wish I could trade places with Chase so you would have him back and live a life with him. I just hope I’ve been a helpful support to you and helped you through your grief a little bit. As much as the thought of you dying kills me, I’m looking forward to you finally being free and being able to be with Chase again forever. It must be so hard to have to stay here for me and Dusty when you just want to be with Chase and that is totally understandable, if I was you I’d feel the same. 

You and I have been through so much between your health conditions, my health conditions, Chase, Michael and everything else in-between you have stayed strong and kept going. I will always love you with all that I am and I will always be there for you. It’s going to be a sad and hard day for me when I move out and we won’t see each other everyday.

All I really want to say is thank you and I love you. Just thank you so much for everything that you’ve done. You are the most amazing and inspiring woman I will ever meet and you truly do inspire me everyday to be a better person and to keep going. 

I love you so much Mum and I will always fist you and tips you (this is a private joke and in no way entails what it sounds like 😉 )

Keep going Mum, I know you can do this and I will always be there beside you to help you and push you to keep going. 

All the love in the entire solar system and more,
your daughter Maddy. xoxo 

 

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Body image, Chronic health condition, Uncategorized

Another thing I have to deal with

 

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I have psoriasis… Great! Just what I needed, another health condition because having anxiety (generalised and social), depression, gastroparesis, chronic fatigue syndrome, chronic ingrown toenail problems and postural orthostatic tachycardia syndrome wasn’t enough now we have to add psoriasis to the list.

I’ve had an itchy head for the past 6 months so I went to the dermatologist and she told me I have dermatitis and I was like ok, that’s good, I can use the medications she prescribed and it will go away! But no, it didn’t go away. I still had the itching and flaking and so I went back for my 6 week follow-up and she then tells me I have psoriasis, like it was no big thing. ‘Oh you have psoriasis and will now have to put all these toxic and damaging shampoos and gels on your head, have a great day!’ Yeah thanks, whatever. She had no compassion and she knows nothing about me. She knows my name and date of birth, that’s it. I feel like she should have gotten my medical history so she knows how this is a big thing for me and not something she can just tell me and not even ask if I was ok, no? Psoriasis is an auto-immune disease so the only think I can do for it is manage it, I can’t get rid of it, It’s now a part of all my other medical problems. Yes I’m lucky that it’s mild and not as bad as some peoples but still, it’s just another thing to have to deal with. Oh and get this, stress is a big no-no! Ha ha ha ha! Stress is my middle name. 

Not to sound full of myself or anything but I have beautiful hair. It’s silky, smooth, thick, glossy, so soft and long. I’m a freaking walking Pantene ad! And out of my whole body it’s the one thing I actually liked about myself. I was happy with my hair and wasn’t ashamed by it, but now it’s full of flaking scalp, it’s itchy and very dry from the horrible shampoos and stuff I’ve had to use. Is this what I get for actually liking something about myself? Am I meant to hate every part of my body and just loathe myself for all of eternity until the day I die? Because to be honest with you that doesn’t sound like much fun.

I just can’t believe I have another thing to deal with. I feel so defeated by life, I was doing ok and then this happens! I’m so tired of everything, I’m emotionally, physically and mentally exhausted I need a break! I can’t keep having new problems arise, my body has enough to deal with and now it has another illness to fight. 

Back to the stress thing, it’s coming up to all of Chase’s anniversaries again so I don’t know how I’m meant to remain stress free through that! March the 8th is when he was diagnosed, April the 30th is his birthday, May the 31st is when he died and June the 5th is when his funeral was, that’s a couple of months of stress. 

I’m starting my treatment now and hopefully I’ll be able to get this psoriasis under control and I’ll learn to love my hair again. 

Oh I forgot to tell you before that today I have to go get my hair cut because it’s too long to handle with all these things I have to do to it. Bye bye hair! See you when you grow back in months and months. I sound a little bitter don’t I? 

Love to you all,
Maddy xoxo 

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Death, Depression, Grief, Uncategorized

A letter to my brother

Dear Chase,

I miss you, I miss you so much it hurts all of the time. I still can’t believe that you’re gone and that you’ve died and that you’re not here. That you will never experience what life has to offer; good and bad. You will always be five years a month and a day in my eyes, you will never grow up and have children or get married, you will never have your first drink or travel the world, and you will never be there growing old with me. You were my little brother and you meant so much to me. I loved you so much. You were my favourite sibling and you always will be, not because you’ve died but because you were meant to be my brother and because we come from the same soul group; I truly believe that. I also believe that one day I will see you again because the alternative is that I will never see you again and that’s just too hard. 

You were so brave and strong. You were the most amazing person, you and mum inspire me everyday to keep on going and not to give up, even though I want to many times a week. Sometimes its so hard to remember why I can’t kill myself and why I do have to keep on living and the two reasons I always go back to is that one: mum needs me and I can’t leave her, that’s just too horrible and two: I believe that if I kill myself before my time to die I will miss you and mum and have to reincarnate and I will never get to see you again. You and mum is what’s keeping me alive on this planet and you’re not even here with me! You’re dead, you died. You died and left me. You left me and you left mum and since then we’ve had to go through so much crap. I get so angry at you sometimes for leaving and dying but then I feel bad because what sister gets angry at their dead brother from dying from cancer? Am I a horrible sister for not going to the cemetery also?

I still can’t believe that you’ve died sometimes, my brain can’t comprehend that I will never get to see your beautiful face again and play superheroes and crocodile crocodile with you. But the truth and reality is is that you are dead and that I will never get to play superheroes and crocodile crocodile with you again. 

You got diagnosed on March 8th and died on May 31st and between those two months I watched you deteriorate to the point where you couldn’t walk, sit or crawl by your self, mum had to carry you every where and you mostly just stayed in bed while I had to go to school and not spend time with you. Your cancer was terminal, you were going to die and yet I had to go to school and waste seven hours a day learning stuff I still don’t remember now while you were at home getting killed by your brain tumour. 

The day you died I remember not seeing you in the morning and it was a Thursday, I went to school and had to re-take a maths test that I’d failed (gee I wonder why that was!) and then I got on the bus and came home and the palliative care doctor had come while I was at school and you had IV lines in you with medication and you never woke up. Your breathing became different around 5-6pm and mum rang the doctor and they said not much longer and then on the Friday at around 12:12 that morning you died. I literally watched you take your last breath. The feeling of hope I felt when I got to your room and saw you take that breath was a feeling like no other and is indescribable and I will always remember that feeling there is also no way I will ever forget how I felt in those five seconds thinking that you were still alive and then you didn’t take another one. It was official, you had literally just taken your last breath. 

The come down from that feeling of hope is also another feeling I will never forget. You were so still and pale, you looked like yourself but at the same time you didn’t. You could tell that you were dead and that there was no more life in your small body. You died in Mums arms and that’s how it should’ve been, I’m glad you had mum there with you. 

Why did you die Chase? Was it so mum would leave Michael and find a new life for herself? Why? Why did you die and leave us? Why did you get DIPG? Why couldn’t you get another cancer if you had to get cancer that could be cured? I don’t understand why you got the rarest one, is that because you’re a rare human? There’s so many ‘why’s’ and I just want an answer to one of them. And why did you have to leave mum? She’d been through so much already and then you have to go and die and make it worse. I wish you would’ve made mum leave Michael another way without dying.

I know you’re still around, I get signs and I heard you say the other day say ‘I love you Maddy’ and I saw that avengers symbol on my top, but that makes me feel worse sometimes because it just reminds me that you’re not hear and that you’ve died. I try so hard to lock and shut those feelings down because if I let them out like I have the past two weeks I become incredibly depressed again and have to remind my self the reasons to keep on living. 

You truly were a superhero and shining star little brother. You were the best sibling and brother anyone could ask for. You and mum make me feel love I didn’t even know was possible. I am so proud of you and who you were in those short five years. everyone who met you loved you and thought you were amazing. No body ever thought you were anything other than amazing. 

I don’t know how to describe how I feel about you dying most of the time. Most of the time it’s indescribable. How do you explain to people how you feel about watching your brother die and then have to live with everything that comes after that? You can’t, it’s impossible. 

Did you know that you were going to die since you were born? Did you know that we would only have you for five years? I wish so much that you could give me some bloody answers. No one has answers for me, no one knows why you died and why you died of such a horrible thing. 

I love you so much Chase and I hope you know that. I hope you know that while I was stuck at school I wish I was at home with you even though all you wanted to do was play superheroes with mum. 

I wish I could do what mum says about thinking of seeing your signs as a blessing and knowing that you’re still around but I just cant do that right now, maybe one day but not today. 

I’m scared that one day I’ll somehow forget about you, that I’ll forget that I had a brother like you and I know that sounds horrible but it is one of my fears, right up there with mum finding someone else she’ll love more than me and want to spend more time with.

It’s coming up to that time when you tell someone about you dying and they ask how long ago and you say 4, 5, 6, 7 years and it sounds like such a long time ago when in reality it feels like it happened last week, yesterday or never. I don’t want that to happen I don’t want people thinking any less of my grief because it happened 7 years ago. I don’t want people thinking any less of your death because it was 7 years ago. 

I don’t want to make peace with you dying because I don’t want to accept that I will never see you again and that you’re dead. In a way me still being in denial makes sure that i will always remember you and that your death will not mean nothing. You meant everything and I still want to believe with everything that I am that you will come home one day or that I’ll wake up and it was just a nightmare but I know that’s not true and yet I still can’t come to terms with it. 

I love you so much Chase and I will never forget you, ever. 

With all the love that I have, 
your sister Maddy.

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Body image, Depression, Emotional eating, Food addict, Guilt, Uncategorized

What it’s like being an emotional eater and addicted to food…

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Food. I love it and I hate it. It’s heaven and it’s hell. It’s good and it’s bad.

My relationship with food is a complicated one because as you can see in the title of this blog, I am an emotional eater and addicted to food.

“Hi, my name is Maddy and I’m a foodaholic.”
“Hi Maddy” (you all say in a bored monotone voice).

Food has always been a comfort to me, it’s always been there when I needed it and sometimes I hate food for always being there. I eat when I’m bored, sad, angry, anxious, tired and just about every other emotion you can feel. It’s a crutch for me to stand on; a very unhealthy and unhelpful one at that.

But what does it actually feel like being an emotional eater and addicted to food?
It feels like a viscous cycle that you know you need to get yourself out of but you just can’t. I’ll be sitting on the couch feeling bored and without me even realising what I’m doing I’ve gotten off the couch and eaten the rest of the chips, put some toast in the toaster and while that’s cooking heated up a muffin and because that wasn’t enough to eat i’ll go back and finish off the corn chips! All because I felt a little bored… Right now as I’m writing this blog post all I can think about is how nice a toasted bread roll would be, but then I remember how I feel after I’ve gone on that food binge and I start to hate my self and resent my self.  I start thinking about how fat I am and how no body likes a fat person. But then those thoughts make me feel sad and I want to go eat! So as you can see, it’s a horrible cycle.

EAT->FEEL BAD ABOUT SELF->EAT SOME MORE->FEEL EVEN WORSE ABOUT SELF->MAYBE EAT AGAIN->FEEL SO DOWN AND DEPRESSED THAT I CAN’T GET OFF THE COUCH TO EAT ANY MORE <—- Fabulous isn’t it?!

When I’m feeling really down food makes me happy, even if its just for those minutes that I’m eating it I feel ok and that’s where I get stuck in the cycle. I don’t think to go and distract myself I don’t even think at all! It’s like breathing I just dot it.

It’s such a messed up thing and I hate it. I hate that food is the one thing to make me happy and sad all in the space of 10 minutes.
I’m getting better though at not hating on my self too much I think. My mums a big help in that because she knows how I feel and what it’s like to eat your emotions away.

My psychologist says something to me every time I see her and that is to ‘Be kind to yourself’ and I always roll my eyes and say yeah ok, but she’s right. I do have to be kind to myself because if I hate on my self too much and end up being a depressed mess (Get it? ;)) I’ll feel the need to eat again and get stuck in that cycle that in no way helps me.

I need to start to remind myself that food doesn’t help, it makes everything worse. I need to stop myself when I’m in the kitchen looking for food and tell myself to go do something else if I’m bored.

Food shouldn’t be my crutch it should be my friend that I visit every day for breakfast, lunch, dinner and an afternoon pop in for tea if I’m feeling peckish.
I also need to learn to be ok with my feelings and to sit with them and not immediately go and put something in my mouth.

Love to you all,
Maddy xoxo

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