Body image, Chronic health condition, Uncategorized

Another thing I have to deal with



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 

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.