First good day in a while again

Well you know, these days come and go lol
But I oh so do appreciate a good day :D
And today's been sweet AF.

Like, last week... I had like two amazing days with Frost. And one of the days we went and had a date in town and shit. *Fuck yeah* And then snuggles and fun with Freya when we came home. Those days were just perfect you know? I like the other days of my life too, but the days I'm given where the pain levels are lower, and I even have emergy.... yeah those are the best days usually lol

And then I think the day after.... my knee got dislocated again. But not the same way it had been the week before....as per usual it immediately hopped into place again, but the pain and shock I went through... now that was different. The pain was extreme, and unexpected too. Cause I've sort or already gotten used to getting my knee dislocated. I'm used to the pain, so normal people would scream when that happens.... I'm mostly quiet about it..But this time, I screamed like I freakin' belonged in an asylum or something. The pain was fucking weird and unreal. I KNEW I fucked something up big time then.
And then I continued to cry hysterically for half an hour or so....

I didn't cry cause I was hurting though. I cried cause right then I felt that.. Fuck, I had one good day. ONE. And then everything came crumbling down again. FAST. Everything got drowned in pain and agony....again.
It just got dislocated again without me actually even moving. So I cried out of frustration.... later that evening my brother came to visit too. But I was kinda like in a apathetic state, so eventually Frost went outside with him and they smoked. I remember that Daniel tried to talk to me. But I wasn't really... I dunno, I wasn't really listening at first I guess. And then I realized after a while that I looked like a racoon. My eyeliner and mascara had been smeared all over the place from crying so hard 😑 And frost had ordered me a sallad, so he tried to make me eat (it was my absolute favorite food so..)
I tried to talk to Daniel I think? Or maybe I didn't.... I actually don't remember most of that evening.
I remember asking him not to tell anyone. Cause the last thing I needed was another one asking me if I was ok. I reeeeaaaallyy didn't want to talk about it anymore. No need to make me sound more pitiful than I already do 😬😬😬 Fuck that.


But the day after I was walking again so... progressing fast in a way, progressing bad too.

The only difference is that ever since thursday, I've noticed that my knee actually comes off completely every other step I take. Like it actually comes loose. And it's scary and gross. And I know that if I don't pay 100% focus on it... it's gonna get dislocated for reals.
So, I decided then and there to accept the offer, to do the knee surgery.

I wanna wait till winter, since the infections risks are smaller then. And I'm more prone to get infections and shit... But these are thoughts that I've been struggling with since friday last week.
I've been feeling depressed and really lost and alone.

My brother and Frost have both been very supporting though... both kept encouraging me all week. And Frost's been trying to cheer me up a lot. It's just hard to feel happy when your'e sitting there wondering how your body is gonna work, if it's even gonna be of use to you. Or if it's just going to be in the way. Obviously it wasn't just that that's been bothering me. But it's played a big part. I absolutely fucking HATE showing that I'm in pain. And No, I haven't been able to overcome it yet. So fuck off. 


But today however.... today turned out to be a damn fine day. 🍀 My first good day in a week.
And holy fuck, did I need a good day.

We picked up Freya early today, and then let her go to the park just like she had requested yesterday.
She got a drink, I got a coffee... cause we had to go to ica first. (See, Freya did a bad thing to one of her classmates, her friends isn't aware of it cause she had already left for the day. But the teacher told me what she did. But before I even had a chance to have a discusssion about it with Freyster and Frost, I overheard her telling Frost about it. She told him on her own what she had done, she showed that she felt ashamed of what she had done, and then she said she'd use her piggy bank money to buy a new one)
Obviously I let her believe that she used her own money, it's good for her character. But of course we paid for it... My little doodle. 💓

Naturally I was upset to hear what she had done it (it wasn't that big of a deal tbh, but it was the fact that she took something that wan't hers on purpose and then broke it) but the fact that she chose to tell Frost herself, and that she was completely honest on her own made us very proud. So we went to ICA, and bought her friend a new one, and I put a card on it and wrote an apology from Freyster and she'll get it tomorrow morning.
I mean, it wasn't a big thing she ruined, but it was something that she just took from someone else's shelf that someone put up there cause they wanted it safe, cause they had just gotten it today as a gift.😐 So wether it was cheap or expensive, brand new or old... doesn't matter, the whole point istaking things that doesn't belong to you is something we're very much against. And we had a good talk about it too.💗 We didn't have to say much either, since she had said most of it on her own. She knew she was wrong, she was sorry, she apologized. It's all good man.👍
But we decided to not get angry or show any signs of anger at all tbh, simply because I value honesty. And she showed that today. And that she felt sorry for doing it.

But anyway, after we'd been to the store, (I got myself a coffee from there too) we went to the park and Freyster found her friend, and they had a hoot haha
Me and frost sat down, and I chit chatted with her friends mom 💙

It's just been a really good day. An I definitely needed a good one. And Frost too.

Babygirl

Look at this doodle lol She's doing so well paddling around outside haha

Yeah,  she goes for a ride around the neighborhood every day now ❤

In  a little over a month she'll turn 3. Can you believe it?? Threeeeee :0

Fucking hell. 

Where does the time go?! 

It's insane...  

Well, She's definitely a hand full, and she's definitely wild, but she's most definitely the best and sweetest kid in the world. ❤❤❤

And I love her more than words can say. More than the fish in the sea. ❤

OH! My pain is getting better, so that's nice. Really nice actually. I can actually go out and do stuff. Yay me~ I needed this. We needed this tbh. Though Frost & Freya definitely kept me entertained and shit haha But I prefer it when we all do stuff together ❤ 

But it's nice to be on a 5 on the pain scale for once. 

You know, sex helps a lot with the pain actually. Frost believes that the more orgasms I get, the better I'll feel.😂 Hahah well he's not entirely wrong there lol but it does distract me from pain haha 

He's funny 😄

If only sex could take away EDS pain. I'd never be in pain again. Hah. 

snow snow and more snow!

The other day it started snowing like crazy. So I pulled Freya on her sled to daycare. She really liked that haha My little sweetie. She got so excited over the snow.

I ain't gonna lie...but so was I :D

And after that, me and mom went on some adventures. 

And eventually had lunch together too.

That was nice :3

My good mood has come back finally.

The lunch was delicious btw :D

Yum yum....

Oh right, so I'm on new meds for my EDS.... and I'm not sure how it works yet.

I mean, I know how it works.... but it hasn't showed any improvements in me yet anyway. -_-

But then again, patience is a virtue.

It's a big change for me to do this... so we'll see.

it's actually huge...and I was kinda reluctant at first.

Yeah I was weary but both mom and Frost eventually thought it was for the best so...

I gave it a shot.

It's so strange. I used to do this for my patients all the time back in the day...

(though they were dying or something...............)

I never thought I'd be having that too.... at this age.

Frost helps me every wednesday with this from now on.

And this being such an insanely strong painkiller....

my knees are still fucking painfull as hell :/ 

But hey.... it might just take some time?

frost says to be patient..... so I'll try lol

Like I said before.... it's a fucking virtue!

It's been a while

I've got some real shit to tell you.
If you don't wanna hear my complaining now...I suggest you scroll down.
Cause this ain't peachy. And the truth ain't pretty.

I'm going to write about my weekend.

See....I've had a crappy week tbh... Freyster's sick and she's not getting better. Which worries me a lot. I've had a weekend with withdrawals and a man that's sick AF too. So Freyster got to stay with granny. I'm very grateful for that. Cause we've been dead all weekend.

Sooo...I've got a plan. There's a reason why I'm going through withdrawals.

My plan is to stop using all opiates. ☺

Opiates....they're SO good. They make you feel warm and fussy and the pain goes away. They make everything a little easier. But they rip you apart when you stop taking them.
It's just not worth feeling like shit once you're off of them. And if I want to have another kid...opiates ain't gonna help me. So I'm getting clean and I'm gonna ask my doctor to let me eat tramadol instead. They're like 20 times lighter than my current painkillers. So yeah, I'll probably be in pain a lot cause they won't work as well as the others. But it's so much easier getting clean from tramadol than it is with oxy's. 

It's worth a shot right?

My doctors try to control everything...I've tried for half a year now to tell them that I don't want the 12 hour pills. Cause I don't want it in my system ALL the damn time. I wanna be able to just take a fucking painkiller when I'm in pain. Like everyone else. But they insist on having me on oxycotin 24 hours a day. It's too much.
Because of my EDS, it doesn't affect my mind the way it does others. My mind doesn't get clouded and weird. I don't get "high" either.  I feel better.. yeah. But not high. But still, I don't want that shit running through my veins 24/7. Buuuuut because of ny EDS I'll always need painkillers. But I just want to be able to handle the pain without it sometimes. Ya know?

So I'm gonna change that.

I need to change my life a lot. And I'm gonna start soon. I've already gone through the worst part of withdrawals. (I hope there's not more....) haha So I'm hoping that the doctors will see all the effort I put into it and listen to what I say. And understand that I want to try something else. Something easier and less addictive.

I'm doing this for love. 💖

You'd think doctors would help you try something lighter than the second strongest shit you can take. But they're surprisingly resistant.
The next step would obviously be methadone since my tolerance has gone up so damn high. Do I really wanna go through that? FUUUUUUUUCK NOOOO.

Did you know that getting clean from methadone can take up to 2 months (going through the withdrawals I mean) that's excruciating pain every day and diarrhoea and Headaches and fevers and shit. There's supposedly nothing worse than getting off of those meds. I ain't going down that road.

For those of you that don't know what it feels like going through withdrawals.... It's fucking painful and exhausting. Like someone is stabbing me in my gut repeatedly. Your bowels give up and you fucking poop you guts out too. It just hurts so bad. Like your insides are being torn apart.  Everything hurts. My EDS flares up and gets 20 times worse. Every fiber of my body hurts... I'm sweating like a pig. And I'm pretty sure this is what it feels like to die when your organs give up.
It's a living hell.

While with tramadol...withdrawals takes less than two days. And it feels like a flu.
See why I want them instead?
Cause I wanna be able to stop on my own free will WHEN I want to.
I've accepted the fact that I'll need painkillers for the rest of my life.

But I wanna be able to control what I can when it comes to my own body.

I dont want anything in my system when I start to TRY to get pregnant. I don't want anything that could harm the baby. Thus, I wanna be able to quit easily when I've made up my mind.

And I wanna loose weight too but my mind is just not very strong atm. Things are just rough right now. And I feel like I'm losing my way. I can't focus on too many things.
I worry a lot. A loooooot.

But just now... I was holding Frost while he slept cause he wouldn't stop shivering. His fever is being a dick and me clinging on to him seemed to make him shiver less.
That's what I've done to Freya when she's been shivering. I use my bodyweight to keep her calm and warm and it works. So i did that with Frost.

So when I laid there...holding him. I remembered my path that I chose.
I want happiness with the man I love and with my amazing daughter. We're getting married and next year I want to be able to have another child.
I want to help Frost handle his anxiety... help him so that it doesn't control his life as it does now.
And I want to be there for my friends and family when they need me.
Being on a sickleave has made things easier tbh. I have more energy  (well obviously not right NOW.... but you know...) I'm getting better.

So I'm going to find my way again.
And it'll take time to loose weight... But I'll get there.

And other things that's been gnawing on me is that Freyster's been sick since the friday over one week ago. I'm getting really worried...she doesn't get to keep any food. 🙁 My poor baby. I've literally been awake all night again. Mostly due to eds related problems but also cause I cant stop thinking. It's 6:58 now. I hope I can fall asleep even for a little.

Today will be a better day.
All I can do is walk forward with my head up high. Holding on to my family.

Plus....Christmas is coming and that's my favorite time of the year! What's not to be excited about? 😃

I wanna hug an snuggle Freya. I've missed her while she's been with her granny.

Well..wish me luck with convincing my doctor to let me have something lighter than oxy's.
Something so simple is actually so hard. 😑

I'm going to write a better post later today. :) I promise.

Freyster keeps me sane though :P

Our sunshine <3

The wheels keep on turning

I gotta say, I've got one of the most understanding and cooperative bosses ever.

He's very kind.

I can be off work for as long as I like. No problems there.
And he even read about EDS. Which kinda surprised me when he wrote that he read some articles about it. hah... ain't that something?

I'm getting weirder and weirder by the day. But on the painscale I've been maintaining a 4 daily, which is remarkable. And nice!

Sure, I can get insane pain every now and then but hey. I've been doing great with less than half my dosage of painkillers. That's pretty amazing.


There's just this other teeny weeny tiny problem that's disturbing the peace.
But it'll be dealt with tomorrow. It'll be a long day. Maybe I'll tell ya about it some day.


Luckily I have the most supportive man in the history of men.
I mean, I could seriously commit some horrible crime and he'd help cover it up lol

I'm not saying I'd do something. Duuuh. But I'm just saying he's that kinda man. haha

He's got my back, and I've got his.

Feels good to have an extra income btw. Who would've though that he'd find such a great job where he actually does well and feels comfortable. He likes his coworkers and he bought his first real power-drill and tool set so now he's a full fledged "montör". lol
I'm happy for him :) So very happy! <3

Well, I suppose I better go to bed soon, so I'll be ready for tomorrow.

The ugly truth

So here's the deal. I'm gonna be completely honest in this post...

Here's my ugly truth.

Today is one of the worst days of my life.

I am insanely dopesick. I have nasty opiate withdrawals.
I'm sweating like a god damn pig....the pain is excruciating. It's so hot. I'm twitchy and restless. Soooo tired. My tummy is NOT friendly. Hostile tummy. HOSTILE AS FUCK.

I can barely move.

I haven't had opiates in a few days or so... Imagine a dude doing heroin for years, and then just quitting instantly... that's what I'm going through.

All this cause I'm afraid of being honest with the doctors.

I talked yesterday with a nurse about updating my medicine prescription.
She sounded so rude, made me feel embarrassed for needing painkillers.
'if it says that you should take 2, you can't take 3!!'  She made me feel so stupid and worthless. And I had to lie even cause she made me feel so ashamed and worthless... why do I have to feel shame because I have a difficult disease?! Why do I have to feel like I'm worth less than anyone else because of my disease?

The medical care in Sweden needs to learn more about EDS. They do. Cause I have yet to meat a doctor or nurse that actually know about it. The neurologist knew. But not much. Yet, my dentist knew, when I went there.I  panicked cause I'm honestly afraid of dentists... but he told me, oh you have EDS? Well then we might have to upper the dose like 4 or 5 more times than usual. You don't react to sedatives or painkillers like usual people do right? I can't even begin to explain how good that felt to hear. 

But this nurse I talked to... I can't drop this. I'm very upset...and very sick. And angry.

Now cunt, I would want you to feel what I feel. I would like you to know what it's like when your body don't want to move.

Bitch, I'd love to see you get up in the morning with excruciating pain in the body, and go to work for 26 god damn hours. WITHOUT PAINKILLERS.

So when I have bad weeks, I sometimes need to double the dose...heck, one day I even had to triple it just to manage to FUCKING WALK ⬅ 

Yeah I was high as a fucking kite, but I managed to do my job. And be a good wife and a good mother. All because I could handle the pain. All because I took my medication.


My point is, everyday is different. Sometimes I need it, sometimes I don't. But no one would understand the pain I'm going though. And this is the first time I'm dopesick. O__o

So here. This is what a person looks like when they're about to give up.
This is what it looks like when you're having withdrawals. I am broken and in hurting. I'm ashamed as fuck too.

But, I did learn something.
I, Mama Jo... am not addicted to opiates. (this is a huge deal)  My mind is clear. But my body needs it. It's a weird conflicted feeling. But it's amazing that I'm not addicted. I can actually handle the withdrawals and pain... this might sound like I'm bragging or being too proud, but I don't think getting "clean" one day will be that hard. I know now that I can handle the withdrawals. As long as Frost is beside me. 

See, one day, I want to have another child. I am prepared for the withdrawals that'll come. I will NEVER eat anything while pregnant or trying to get pregnant.

I did the same when I tried to get pregnant with Freya. I ate nothing for my pain during that time. We just had lost and lost of sex (with in my case, actually helped with the pain lol)

And once I found out I was pregnant, I quit smoking. Completely. And that was a huge deal. I was a heavy smoker. Like at least one pack a day. But for my child, I can do anything.

And when Frost and I decide to have another child, I will do the same. I will do anything for my family. I can handle everything.

I'm so damn lucky to have my man. Frost goes to insane lengths to make me feel ok. He hates it when I'm suffering. He takes such good care if Freya when I'm incapable of it.

It's funny what instincts can do to you when you think your child is in danger.

I was laying in bed, and I literally couldn't move my body.  Frost sat beside me and comforted me. I wasn't sad or anything....just being dopesick. And he calls out Freya's name. And she doesn't come not does she respond. He started looking through the entire apartment and couldn't find her. I heard him panic and BAM I flew out if my bed in a split of a second and ran out to find her. (no pain or locked joints) First thing I notice was that the door was locked. Which meant that she had to be in here. Frost never looked at the door....so of course he panicked. :P
And calmly said 'check behind the couch'.

And he said 'Freyster?' and PLUPP. She popped her head out from behind the sofa. Where she's not allowed to be. But we just couldn't get mad at her. It's been a rough day for her too. She's noticed that mommy's sick. She's tried to comfort me and snuggled me and and reached out her hand to help me up. My daughter has such a kind and sweet soul.  I know in my heart that she'll grow up to be a wonderful person.

So, I've managed to see the beauty in my life, during this withdrawal. Despite all this shit. My life is beautiful.

I'm actually forcing myself to go out and play with Freya. Freya is going to have an awesome time. I don't want her to suffer just cause mommy's has a shitty day (weekend)  My pain was so extreme that I had to call in sick from work yesterday and today. That sucks donkey dick. 

I know how hard it is to find people to work there. :(

And I wanna apologize to all of my friends and family too. I haven't responded to all the texts and calls. Sorry.

I've just felt ashamed and shitty.

That nurse... made me feel so... I don't know, I can't find the word for it. But she talked down to me so much. I felt insulted. She couldn't understand that when I have bad days or weeks even, I need even more painkillers than usual. And I told her this and I also said that some days I don't even need anything. Anything below a 5 on the painscale is great. I can handle that perfectly without opiates tbh.  And yet, she sounded so condescending. Like she didn't even wanna understand me.


So, now I'm going to go hug and kiss my man. And smooch my daughter like crazy. And go out to the park. 
I can do this.

For my family, I can do anything <3

I'm trying so hard to be positive. 

I love you Frost. And Freyster, your'e my starshine. I'd die for you.

So I can do this.

I just gotta go shit myself a little first...

Shit about EDS

Alrighty then... let's talk about something I've avoided to think about for some time now.
(this is a post mainly for me actually, to keep track of shit)

So, my EDS had gradually gotten worse. It's more aggressive now than it was before. It... "grows" faster than it used to.

My knees got inflamed actually. But I had to figure that out myself because doctors can't -_-
Everything that hurts, everything that goes wrong...all of it, I have to figure out for myself.
There's no doctor there to have my back. To keep my spirits high and give me hope when shit looks dark. There's no doctor taking tests, checking how I feel or trying to figure out what's wrong.

And there never will be.


Cause here's in sweden, EDS is still a rather "unknown" disease.


Recently my knees have gotten in real bad shape. So bad that I have to start thinking about alternative things. Like braces. Braces for my joints in general really.

Like fingers, knees and wrists... I've already decided to buy a waist trainer so my waist will have a constant support. It won't weaken the muscles like the doctors always say. Cause a waist trainer unlike a corset will actually force the muscles in my abdomen to work out. It sounds great in theory anyway.

Knee braces on the other hand....................... expensive. As fuck. Not something I can just pull out of my ass and use so everything will be good. Nope. Gotta save up for those. And save up a lot.
I can, through a doctor get referred to the orthopedics and get knee braces there custom made for my knees, which will save me a whole fuckton of money. So that's the option I'm going with right now.
Buuuuuuuuuuuuut, it takes time. Obviously.

My fingers are good for now. But in the future I will need something like this:

Yeah... the finger braces would cost thousands of dollars. So I won't be getting those anytime soon.
They're ridiculously expensive even though they're technically just a bunch of rings. Which leads me to think I could make these myself (or have someone else make them for me) But I think I've mentioned this before.

SOmething else that getting worse with the disease is my memory. My memory is getting pretty crappy. I remember things I've forced myself to remember by instinct. Routines and natural things. But tell me to go get you something, I'll come back nomming on a cookie having no clue why you're looking at me like I'm a dick. I manage to survive though. I pretend to be an idiot so people will get off my back about shit that I don't have the energy to deal with.

At work I pretend to be lazy, so I don't have to admit that I haven't done certain things because I'm in pain. Cause I'm so scared that one day I won't be needed anymore.... because they'll be afraid that I'm going to be in too much pain. I don't need pity all the fucking time. It makes me feel worse than I normally do.

My speech and vision.... well, that's affected by how tired I am. Like most people I guess lol
But I'm getting very VERY tired these days. Literally can't keep my eyes open. It's extremely irritating and annoying.


Good things... well, I think I've managed to change at least a small part of the positions that I sleep in. I think. I don't bend my wrist backwards anymore (I'm not entirely sure though, but I haven't caught myself doing that recently anyway) so that's good.

Unfortunately I always wake up like 10 times every night due to changing my sleeping position. It's painful once the body tries to relax so it forces me to wake up every time I get relaxed.

I guess that's still one of my biggest issues. The fact that every time I try to relax, I tense up and almost stop breathing. It's like my body get's such a shock from the pain when I try to relax that it get's so scared of relaxing that it forces me to stay alert. Even when I'm exhausted.

I've woken myself up sooooo many times cause of pain so you have no idea.

But, I'm still stuck on the same kinds of "valium" (different brand) though I would've prefered a stronger dose.

Fun fact: If you suffer from EDS, your more resistant to drugs.
Painkillers and benzo's don't hit me as hard as normal people. I almost have to abuse the shit out of it in order to force my body to relax so i finally get to sleep at least a few hours straight. Unfortunately I can only do that every once in a while. Quite rarely in other words -__- I only do it when my body and mind are so sleep deprived that they need it in order for me to not go insane or make me be angry and mean all the time.

I can get very angry and frustrated because of EDS. This is not how I used to be. It's still... a scary new side of me that I don't get along with.


But if I get enough sleep combined with painkillers, then it can be managed.


And now it's time for my benzo's and oxy's and say good night. Let's hope for at least a 3-4 hour night. *hope hope hope hope*

I'm on a higher depot dose of oxy's now so we'll see if they do the job. I doubt it though. The dose ainät high enough. But I'll play along if it makes the doc happy I guess, For now.


Luckily my handsome studmuffin gives me my medicine every morning so I can get up and get on with my life.

Early morning

It's 5am(ish) right now. I've been awake for a few hours. I'm super tired but I just can't seem to relax. 😕 Bummer. Plus Freya woke up around 3 screaming her lungs out. She was in such a panic mode. Poor baby. I have no idea why she was like this but she kept on waking up next to me crying and screaming. At one point she even woke up clawing me.

I finally got her back in her bed though 😊

I've noticed that recently my fatigue has gotten worse. Sometimes I can't even see straight. I see double and blurry and I have no choice but to close my eyes since I probably look cross-eyed when it happens...  some people ask why I get so tired.

Let me tell you, always being "on guard", scared of relaxing too much and stuff... that really drains you. Seriously.  I have to focus hard all time on my tensions and shit,keeping my body going. Staying tense so it won't fall apart. It makes you more tired than you think....

So for people who wonder why I'm so tired all the time.  It ain't cause I'm lazy.

http://www.ehlers-danlos.org/patient-support/management-advice/living-with-ehlers-danlos-syndrome/managing-fatigue-sleeping-problems-and-brain-fog/

My memory is greatly affected by it too.

On the bright side though, I was reminded of how much I wanna move from here. I just killed like 8 FAT fucking silverfishes!! 😨 Nasty fuckers. Gueh...

Aaaah it also looks like I won't be able to keep this phone. I ain't even sure this email will be sent to my blog since my phone says there's no storage left even to send a fucking email 😒 I want an android though.

I know... The issues of the today's world. Phones lol
BUT!! In my defense, I use my phone a lot for editing photos, making nice collages for the blog or stuff, it's nice having Netflix too. And Spotify. But I guess I need to delete though in order to be able to use the phone... It won't let me open Spotify anymore cause it days there ain't enough space for it 😐
But yeah... I like photos. Editing. Writing blog posts. Learning. Listening to music. All of that. I have three apps for my photos. They're brilliant. But I used to have 4, but I had to delete it for more space. I thought it'd work better... but meh...

Anyways... Yeah. Read about EDS there and educate yourself if I'm a person you care about. If I'm not, (And you're just reading my blog cause I'm so amazing) read it anyway just to open your mind. It's a rough disease... it wears you down.

Oh oh oh another bright side of me staying awake though, my body don't hurt as much/not cramping too much since I'm not relaxing my mind nor my body.
When I do manage to relax and rest... The pain I excruciating. So I think my mind unconsciously tries to avoid me resting sometimes. I mean, it knows that me relaxing is extremely painful, so why would it want me to. Can't blame my brain for thinking that way. Nope.

Aaah I'm gonna try to sleep again now.... It's quiet. Maryam picked up Michy yesterday so no more nagging tiny dog (yay!😀) 
But look at how cute they all were together. :)

But I still do hate small dog breeds, Gosh they're too annoying. LeiLei is the best <3

Oh oops... it's closer to 6am now. lol Oh well.

a very tiny part of a big life

It's been one of those shitty mornings...

Got a rough start, but it slowly get's better.

But this is how a day can be.

I'd say I live a big life. I mean, It's not small. It's not insignificant. And it's not a lonely life.
I know I'd be mourned if I died. I know someone would cry themselves to sleep if I did.
I also know that I have a man that's very different from other men. He's sensitive, sweet, caring and he thinks a lot (A looot) and he tries oh so hard to be understanding. There are very few men that tries so hard like mine does. He tries so hard everyday for me. He tries to be stronger than me when I'm having a bad day. He tries to make me smile when I'm sad. And at the same time he works hard as a father, playing and teaching her stuff.

And then there's this huge light in my life, called Freya. The light that came out of me. (I sound like the universe lol ....Or a nuclear disaster)
She's so young. Too young to understand why mommy is crying in the bed when dad's in the shower. Too innocent to understand why mom acts like this when no one can see her. She's sad when I'm away, and she get's happy when I come back. Frost is the same. He's like a little child when I come home from work haha They're standing there both so happy and excited in the doorway. It's the best welcome home salute ever.

So I'd say that my life is anything but insignificant. (I don't think anyone's life is insignificant though.) I may have my moments where I feel down and like I'm a nobody. But I make a difference one way or another.
There was this really good speech on Daredevil last night (season 2, yes.. me be nerd) about cause and effect. Everyone's actions have some kind of a consequence. Good or bad or small or big. Everyone interact with someone in some way. So every life has an effect. It matters.


But in my big life... that is filled with people. People that I love. People that I dislike. Even when it's filled with so much love and understanding... there are these moment's that destroys everything.

When I wake up and it feels like someone broke all my ribs on the right side.
When I can't move at all... and I try so hard to keep it in. I can't show them how weak I am. Gotta pretend like I'm all good, like I don't need painkillers all the time.

I realized this morning while Frost was in the shower that when things are really bad,
The worst thing isn't the pain. You can live with pain even if it drives you crazy. 
What's worse is when it takes away my fighting spirit. And without my fighting spirit, what am I?

It's lonely at times, when I'm in this strange killing pain...
Cause no one understands me. Despite them trying so hard. They will never understand what an effort it takes just to stand up from the sofa some days. Or getting up out of bed some days. And it's not the pain that's hindering me... half the time it's my own spirit.

But then I see Freya running around the bed going 'Mama mama mama mama!' giggling and shouting, and I hear Frost say 'Let mama rest a bit. We love you Mama'... and I remember again why I go through that stupid annoying pain. Duh. Of course I'll fight through. Cause my life is pretty fucking awesome despite the pain :)

I have to keep reminding me. And that's what my life's about these days. Reminders. I gotta remind myself why I should keep fighting and trying so god damn hard. Cause when your'e stuck in that void, where everything hurts, and your'e focusing so hard on your joints, and how to move properly... everything get's kinda blurry. Until they step closer and you see their faces. And those moments are precious as fuck. They motivate me. My family is my motivation. But I'd also like to think that I was strong to begin with...haha

Here's something you don't know, I space out a lot. Sometime's it's cause I'm high on whatever I just took, Sometime's it's cause I simply just tend to drift away in thoughts, but most of the time... it's cause I focus SO hard on functioning. I always have to think about how I move, how I walk. How I put down the right foot, then the left. Keep the body up, keep it tight, hold my breath and get tense and then keep going. 

I live a very peaceful life. Definitely not quiet. (have you met Freya??) But it's peaceful and sweet.
I hear how the man I love is going through laundry, mumbling things to himself while folding his shirts and Freya's pyjamas. And here I am, thinking how lucky I really am despite this shitty ass body. It is a shitty fucking body. But it's the body that gave birth to Freya and Frost's Wifey. They love it. So I guess I should try to love it a little more too huh?



So there ya have it. This is my pep speech to myself.
I need a pep speech, if I don't push myself and stay positive and have motivation, I'll go down in a very dark hole. So far I've always managed to get out of that hole pretty quick. I rarely stay down and sad for long. But I'm worried that if I don't keep the fire burning, It'll go dark... and what if it stays dark?


Is it weird to think like this?

To me, mind over matter is a big deal. I manage to do a lot of things just cause I tell myself that I can do it.

Life as it is

Yeah... Today didn't really start that great.
It was rough. Really rough. My painkillers aren't working.

I woke up and noticed that my neck is "wrong" and that I can't bend down or move well at all basically. It just pushed me over the edge and I had tears in my eyes when I left for work.

My bag is really heavy, It's hard on me.

When I was almost at the bus stop (with 7 minutes left till the bus was gonna arrive) I noticed that I forgot that most important thing for my dinner, without it I can't really eat the food I brought... And that shit just pushed me further of the edge that I was already dangling from... So I screamed BAAAAALLS really loud and angrily with tears in my eyes and people turned around and looked terrified. And that made me even more upset so I yelled "MotherfuckingfuckshitpissFUUUUC!!!" and kept trotting toward that stupid fucking bus stop. Only to find out that it's fucking late. Which made me sniffle again. Which made me curse even more. And I was late for my fucking job.

But once i got here, I calmed down. A if anyone understand how it feels to not wanna live inside your own body anymore. I hate my body. It's so useless. What's the point of building muscles faster than normal people, if I can't even regulate or handle my own strength?! Why am I this strong if I can't use it? Why be anything if all I do is feel pain...?

Welp, I'm finally sitting down with a cup of coffee. I doubled my medicine even though I'm absolute not supposed to do it. I feel better. I calmed my mind. And I keep telling myself that I can do this. All I have to do is make it through the day, and monday and tuesday too... and then I have 6 days off. I can do this. I can do this. I always do this.

Freya's been staying with her granny and granpa these past two nights. I picked her up yesterday after work so we could spend some time together and then dropped her off again in the late afternoon. Frost has got one hell of a bad flu. It's an awful kind, mom's neighbor got it too. It seems so painful... it make me sad to see the one I love in such a state. But mom and Lasse has been helping him with Freya cause I can't be there when I have 26 hours shifts. :/ You try to find a replacement in the last minute for a 26 hours shift. It's next to impossible.

I had hoped he'd be much better today but he doesn't seem too well... I'm just wishing that Freya doesn't catch this. This kind of pain in a little snugglemonsters body is top extreme. Gosh, No. Nope. She can't catch this flu. Nope.

SHe was so cute yesterday when I had coffee at mom's place. She was doodling on a magazine and she was soooo excited cause she got to use an ink pen (which later resulted in some not so cool face tattoos..but still. haha) she was so happy and adorable :)

Sometimes, I realize that the only thing that motivates me in life is Freya & Frost. They're the only reason I make it through. Cause honestly, who the fuck would wanna live like this really...?

But let's stay positive. I am not alone. And I finally found a group online for people with EDS, I'll went and ask about what meds works best on them.


I'll be fine.

See that?
See how beautiful my daughter is? She's amazing, in every way. Even the way she can be annoying sometimes is amazing. But most of all, she's absolutely perfect and sweet <3

Who wouldn't keep going  when you can come home this this? :)


Ah, last night me and beeb caught up on some shows. We watched the latest episode of Supernatural and The Blacklist. We snuggled and wen't to bed kinda early, we also watched the first episode of "Love" on netflix. Seems like a fun show haha Though I felt like such a horrible person cause I just couldn't stop staring at the dude's nose. It's just so... out there.

I mean, look at it. This picture actually makes it looks smaller though lol Anyway... it's time to do some other shit.


I miss Frost. I wish I could be at home with him. He even offered to come to work even though he's sick and bring me my lchf tortillas haha Silly puff. He should stay in bed. Mom already offered to come <3

see, thing's turn out ok.