beauty

down to earth

I have finally figured out what colours I look best in when it comes to make up.
For eyeshadow it’s brown, gold and red, earth tones. If I’m playing on the paleness of my skin, I can use red, pink and purple, but I have to choose my outfit very, very carefully.
Lipstick? Well, anything goes really 🙂

I think this is one of the perks of having POTS. Well, there aren’t actually any perks to it, but being stuck at home for long periods of time does give you a chance to figure things out, to learn things, etc.

I saw there’s a new eyeshadow palette from Maybelline, Countdown palette, oh it looks so good!! I was on a job interview 2 days ago, so with any luck I’ll have a job soon and can buy it 😉 If not, there’s always Christmas to hope for I guess.

What is your favourite colours when you use make up? Is there one you love more than anything?

Keep looking up ❤

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personal

what is life?

Today I told something very personal on an instagram post. It made me cry, but I can’t be ashamed of the situation my health has put me in.

No… that’s not how I should put it. It’s not my health that has put me here, it is the health care system and those that are supposed to help us when we get sick!

My first memory of my illness, my POTS, is from when I was 6 years old. 3 months before my 7th birthday. This was 1989. POTS was first mentioned, in the US, in 1993. I got my diagnosis in 2012. They figured out that it’s the autonomic nervous system in 2014.

As a child, my mother would take me to the doctor time after time after time. They didn’t care. I was “just a girl”. I was “lazy”. I would “grow out of it”. They didn’t believe that something was wrong, and they didn’t care enough to listen. “Just a girl.”

When they started to ignore my mum, my grandmother (maternal) started taking me to the doctor. Same thing.

People have called me stupid, lazy, moron, worthless and all kinds of things my entire life. Even now, at 36, I get those words thrown at me.

I’m poor. I get financial aid, something you’re told is horrible and you should never, ever tell anyone about! But no, I will not be embaraced!

I can’t afford boots for winter, and since I’m in a wheelchair, my feet and legs get freezing cold, to the point where it’s horribly painfull. I can’t afford a new bra, odd size = way too expensive. So I use surgical tape to make it work.

I want bothing more than to find a job. Have some money. I don’t even care about finding friends, I just want a life. I want more than to just survive. Surviving without living is not living!

I still cry when writing this. But again, I will not be ashamed!

I have fought year after year to get help! I have fought to get someone to listen! I have fought to have the smallest things in my life!

I will not be ashamed!

It is those in charge that should be ashamed! Those that decide that people like me are not worthy of a real life! Those that decide what a worthy life on financial aid is or is not. Those that have never needed it. Those that would not last a month, or maybe even a week, on it.

I will not be ashamed!

Keep looking up ❤

misc.

I’m ready for the zombies!

No really, I am!

I love all things zombie, and one day I found myself thinking about my zombie strategy.
The building I live in has 16 floors, with 5 apartments on each floor = lots and lots of zombies/possible zombies. When the zombie apocalypse happens (haha, yeah I said when), I need to get out of here fast, get my mum and meet up with my brother. I have a plan for what stores to go to, where the safest place to stay is. All of that 🙂

Medicine, food, water, clothes, all’s figured out!

I know it’s a silly thing, but it’s a fun way to pass time.

Some of my favourites:

I LOVE Paul Anderson, and Milla Jovovich, so when Resident Evil came out I was beyond happy!

How can you not love The Walking Dead? I can’t get enough! I wanna see Fear The Walking Dead too!!

If you haven’t seen The Rezort, you have to! It’s about after everything is over, and there is an actual zombie resort! It’s so good!

Oooh, I love Z Nation! It’s on Netflix in Sweden, I’m currently rewatching it. Michael Welch that played teenage Jack O’Neill in an episode of Stargate SG1 is in it (left in the photo) 🙂

Is there a zombie movie/tv show you recommend?
What’s you favourite genre?

Keep looking up ❤

personal

super gifts for a super girl

My parents and my younger brother came to celebrate me today.
My mum came early to help me get things ready, then my brother came around 2pm.
Now my “dad” also came around then. The thing you need to know here is that he doesn’t like me. At all.

He went straight to my living room and looked at my DVDs, moving my nerdy mugs to do so. I use these mugs, daily. Since he’s a smoker, I’ve made it very clear to him, sooo many times, that it is extra important that he washes his hands before he touches anything at my place.
I’ve told him of every time he’s come here for 10 years now (!!), but today he decided to act like a poor version of a spoiled brat.
I told him, once more, to wash his hands if he was going to touch anything. He snapped and went “well I can just leave!”
I went to the kitchen and heard him in the hallway. Then he just left, going “I’m not gonna stay here if I’m gonna get dissed!” He never said anything to me, or even my brother, just to my mum. She just stod there, not knowing what was going on.

So… asking him to wash his damn hands is dissing him? Dude, get a grip!

I’m so happy that I have my mum and brother. We ate, we drank (Pepsi)m we talked, we laughed.

And I got presents!!!

From my mum I got season 1 and 2 of Supergirl.

  

And season 7 of The Walking Dead.

From my brother, I got seasons 1 – 7 of Supernatural.

Oh, I also got the Clara tribute funko pop TARDIS from my mum, but I just saw I don’t have a photo of it.

Such awesome presents!!

Keep looking up ❤

Ps, just so it’s clear, I will no longer have anything to do with my so called “dad”.

personal

a lovely day in Copenhagen, Denmark

All right then, today is my birthday, 36 years 🙂

It was my first time on the train since I got Alonso. A few weeks ago, I headed to the train station to have a look at the doors wheen the train arrived. The conductor on that train was kind enough to explain how they do things while waiting for everyone to board. I just have to wait and the conductor will see me and get the ramp. There’s a huge gap to get in. So that was easy!

It was a lot easier than it is going on a bus, so that was great.

We were supposed to go to Glyptoteket first to have a look at about half of their exhibition. Ancient Egypt ❤

When we got there, I just…. well, have a look at the door those of us with a wheelchair is supposed to go through…

  

The left door is the one you’re supposed to use when visiting with a wheelchair. Do you see that doorbell? That’s over a concrete… thing?
The right one is the temporary door, and it’s impossible to get through it on your own, maybe even with help.
We didn’t get to try it… I had been told they opened at 10, but a woman came out and told us it was actually at 11. A man had entered a few minutes earlier, so obviously he told her we were waiting outside. So that was kind!

Their Egyptian exhibition is what made me fall in love with ancient Egypt about 30 years ago!

After this, we headed to Strøget, the shopping street in the heart of Copenhagen. This was my first time there with Alonso, and it was a lot more wheelchair friendly thatn I thought! Most stores had some solution to make it accessible. Now… most of them required a friend to help you up, because – damn, it felt like huge mountains!
One store, a Christmas store ( ❤ ) even had a really good ramp to put out when needed. AND, to get up to the second floor, you needed to take the escalator, but it was stairs to get down. The woman in the store actually offered to help me go up the escalator and then reverse it so I could get down again!!! Can you believe it?! I declined, the escalator was, sadly, too narrow.

A few days ago, Illum posted a photo of burgers on their instagram, it was from Yoburgers and we had to have a look.

I have celiac disease and can’t eat gluten, but they didn’t have gluten free buns. The man offered to make them a bit different, have a look 🙂

Mine vs, my mums.
If you ever have the chance to eat at Yoburger, DO IT!! It was the best ever!!
Now, because of my POTS, I have problems eating, and it was impossible for me to eat all of this. I have only been able to eat actual food for two days now, after 2 weeks with rose hip soup, so I was really happy to be able to eat this!!

We passed by a small store called Mejerigaarden, and I really wanted one of their ice creams, but I was full. But I mean, come on, look at them!!

Illum:

  

I really love the t-shirt I’m wearing today. It’s from Primark! And it was perfect with my red lips and glasses.

At the end of the visit, we went to Peter Beier Chocolate. If you’re ever in Copenhagen, have a visit! Go to the main entrance of Tivoli, and Peter Beier is on the opposite side of the street, in Axel Towers.

It is more than worth the money!!

My mum and I go to Copenhagen every year for my birthday. It’s a tradition that I will find a make up product that I like and she’ll give it to me as a present. It’s a nice tradition.
This year, I came home with a liquid lipstick from Chanel. It’s a part of their Christmas edition or something. So, so gorgeous.
We each got a mascara sample, and then I got this beautiful little make up bag since it was my birthday (or so she the sales person said).

  

  

I did have an accident though…
When crossing the street, I swerved a bit to avoid hitting a stone. It was big enough that it would throw me out of my wheelchair. I did miss the stone, buuuut, on doing so, I missed the sidewalk. And whoops, someone flew out of her chair and landed on her knees.
It took 3 hours before I could move my legs again because of the pain. Both my knees are really bad, and my ankles are too. They were sort of “folded” underneath me. People just looked and kept walking. But you know, don’t mind me 🙂
An old lady asked if I was OK, then she was pulling me and gripping me really hard, and twisting my arm. I thought she was going to break it! A man came up to us and asked if I needed help, and he had to help get the old lady off me, I think he told her of about 5 or 6 times. She wouldn’t listen. But unlike pretty much everyone else, at least she stopped.

Then… something a bit more funny happened. I cried from laughing!
When we were going to leave Peter Beier, I could hardly close my jacket. It was unbelievably tight. I didn’t think my belly was that swollen… Then, I moved my arms back, and…. uhm…. I wasn’t actually that swollen…
I had put my jacket on… with the back of the chair between me and my jacket…. I laughed so hard I thought I was going to fall of the chair. Tears were flooding from my eyes as I laughed!

And now, I’m home 🙂

Keep looking up ❤

wheelchair 101

how to choose your wheelchair

Edit: I forgot to add how high/low you should sit – I will add that tomorrow! If this text is gone, then there’s a new photo with text at the bottom of the post!

Alonso is a manual wheelchair, meaning I push myself.
This is the kind of wheelchair I know and can give advice on. If you have a need for another kind, I’m afraid I can’t help much. Perhaps I can ask around and hopefully someone will have an answer (no promises).
Tha wheelchair I use, is one that a lot of people with EDS is using. I have POTS and they suspect EDS.

This post came from seeing a number of instagram posts where people use wheelchairs that are completely wrong for their bodies. I know that in some countries you have to buy your own wheelchair in some cases. In Sweden, you talk to your doctor, make a call, get a wheelchair, live happily ever after. And you pay nothing at all for it.
If you can’t afford a wheelchair that is fitted for your body, I of course understand that, and you do what you need to do ❤

Now, Alonso is a Panthera U3, you can see more of him here, or read up on him (and other wheelchairs) at Panthera, here.

When you choose your wheelchair, it is important to think of what you need from it.
In my case, I need a chair that is easy for myself to push, that has great support for my lower back, that keeps my feet still, that’s easy to manouvre, that support my legs, and I need push handles because of my health.
Some with POTS also need to think about if they faint, how do they fall? Will this be a problem in the wheelchair?

I’m going to show some photos, the wheelchair I borrowed, and Alonso, and explain the difference, and why Alonso is much better.

I’m afraid this is the best photo I have of the borrowed wheelchair, but you can still get an idea of how it looks.

1) The tires. As you can see, they’re completely different.
The ones on the left are really good because you don’t have to worry about getting a flat, it can’t happen with them. However, this also makes them extremely heavy and you will not be able to push yourself.
The tires on Alonso are like the ones on a bicycle. They make it really easy to push yourself. Yes you may get a flat, and getting an electrical compressor for them is a bit expensive. For me, it’s absolutely worth it!

2) The back.
The borrowed chair has a straight backrest, so if you, like me, have an unstable lower back, it may cause you pain. It’s also quite high, meaning it will push against a larger part of your back. For me, this caused pain all the way up to my neck.
Alonso has a backrest that is more fitted after my back, formed a bit like a C if you look at it from above, and it’s much lower. It is adjusted exactly after my lower back to give the best support, and it has actually helped to reduce some pain!

3) The size.
Alonso is a lot smaller than the borrowed chair. The push handles are fixed on the borrowed one, and the footplate is a lot further in front of you. When going on the bus, or just turning around, this can be a problem. On some busses, I had to sit almost in the middle so people had problems getting by me. But with Alonso, I fit pretty much everywhere. And with Alonso, I can even turn around inside most lifts, I don’t have to back out of them.

Arms, legs and feet. You can see the difference in size on the wheelchairs here.

1) Armrests.
As you can see, my right arm is held further out in a bad angle in the borrowed chair. This is when I wasn’t moving, when I tried to push myself, I needed to extend my elbow further out.
When sitting in Alonso, my arms are much more straight. If you’re going to push yourself, I highly recommend to get a chair with no armrests. Not having them also helps you from slouching when being still.

2) The legs.
As you may have already seen, I sit a bit funny in the left photo. I had to cross my feet like this to keep my legs in place, there was no support at all. Since I’m hypermobile, and that causes a lot of pain, I need stability for my legs.
On Alonso however, the frame along my legs are a lot more narrow, and you can see how that support help my legs to stay in place. This has helped to reduce some of the pain in my hips!

3) The feet.
The footplates… This is difficult. It really depends on your needs. The ones on the left photo can be folded upwards, and the one on Alonso is fixed.
The ones you can fold up is usually recommended when you have POTS. If you need to lay down quickly, then it’s easier for most people with these. When I have felt my blood pressure go down and needed to lay down, I have always moved my legs to the outside of the (regular) chair. This gives me more control of my body, and I won’t just fall to the side and hurt myself. So for me, the fixed one was better. The fixed footplate is also stable and your feet won’t shake/move like they will on the left wheelchair. If you have problems with pain or instability in your feet, the fixed footplate is the way to go according to me. Alonso also have a strap behind the legs to keep them from falling of the footplate.
Also, if you’re going to get a Freewheel, you have to have a fixed (and enhanced) footplate.

The left photo isn’t the best one, but it’s what I could find from when I used the borrowed chair.
As you can see on the left, my posture is really bad. This is a combination of the wrong backrest and the armrests. In Alonso, you can see, even from the front, that I sit up straight. With the straight backrest, and with armrests, it’s so easy to slouch, and you will do it, wether you realise it or not! Both my upper back and lower back are so much happier now!

As you can see, there is no room between my thighs and the wheelchair. I see a lot of people using chairs with a lot of room, putting their bags or bottles of water there. This is how it should look, no room at all. If you go and get help (as we always do in Sweden) this is how they tell you you should sit. This is a lot more stable and a lot more comfortable. You won’t be thrown around in the chair. Even if someone else is going to push you, you will want to sit like this, trust me! It’s also a lot easier to sit properly.
Obviously, if you have a medical reason for not sitting like this, you should always go from there.

It’s not adviced to keep things in you trouser pockets, so in some parts of Sweden they give us this practical bag to put under the chair. It have magnets in the bottom so you just push it back and it stick to the chair and everything in it is kept perfectly safe.
I really love this bag, I always keep tote bags, kleenex, wet wipes (you want that for your hands when you’re out with no gloves!!) etc in it. It’s also perfect for medication so it’s always close by.

What cushion you use is up to you, just make sure it’s comfortable. Always use a cushion!!
This one was ordered from the US for me. I can get super warm and sweat extremely because of my POTS. So when I got home, when using the old cushion, it would look, and feel, like I’d peed myself. It was HORRIBLE! Sometimes I had to change pants like 4 times a day!! This cushion lets air through and even if I do get a bit warm, I’m not drenched in sweat!

Tip guards and push handles.
The tip guards on Panthera U3 can bo turned so they point to the front if they’re in the way or if I just don’t want to use them (always use them in the beginning when you’re getting to know your wheelchair).
The push handles can be folded down and in when not used. Since I have problems with my blood pressure and my heartrate, I sometimes need help, so these are a great way of being able to get help without having those fixed handles as you can see on the borrowed wheelchair in the first photo of this post.
They’re also perfect for hanging a bag over 🙂

I think I have thought of everything… if you have questions or thoughts on any of what I’ve written about, let me know! Maybe I should use this blog post as a page of its own here, so it’s always easy to find. That could be good…

Keep looking up ❤

misc.

Saturday night thoughts

It’s my birthday on Friday, and as always, I will be spending the day in Copenhagen. I can’t wait, it’s gonna be so much fun!
This will be my first day in Copenhagen with Alonso, and I’ve been told Denmark isn’t as wheelchair friendly as Sweden (and we still need to get way better), but I think it will be fine.

I think this year will be the most fun one yet. Since I have Alonso now, it’s going to be so much easier for me to get through the day. I won’t have to worry about going in to stores, about fainting, about my heartrate, or anything really.

I’m not sure what we’ll be doing there, or where we’re going to eat, but it’s gonna be so much fun!

Oh wait, we’ll be going to Matas, Disney store, Illum, uhm… And pretty much every store I can enter 😉

The only sad thing is the currency. It’s unbelievably expensive!

I’m gonna try and take loads of photos for all of those that’s never been to Copenhagen. Just a heads up, we’re going to Strøget, the shopping street, but I think there will be some pretty pictures ❤
There are already christmas decorations up, so it’s extra pretty too!

Right now, I could kill for some chocolate pudding! Sooo… I’ll go get some water…

Keep looking up ❤