"I would not be a very inspiring disabled person" my husband/my soulmate/father of our children said!

Me and the little man on Pokemon hunt. Well, not me really but the little man is. I'm just hanging around and watching him catch them.

Response to the headline is that I am a very inspiring disabled person which is why I couldn't stop laughing at my husband's very honest statement. My statement on the other hand might be slightly big-headed. The husband and I were laughing about it all the way home in the car - the kids were not impressed with their parents.

We had been out for dinner last night as the little man had read 10,000 pages so we celebrated at the local Pizzaria. The conversation was on the way home from there. I think the princess was especially relieved it was in the car and not the restaurant where we decided to laugh our heads off.

Yummy pizza for dinner yesterday at our local lovely Pizzaria. 

Today is Sunday and we have nothing on. Well, the little man is getting ready for a walk around the neigbourhood soon - for another Pokemon hunt. No sun today though, but that doesn't stop a serious hunter.

Looking at at the sky..... Or at her daddy taking the picture.

It's Sunday today. The photo is from a month ago and has no relevance to this post as such. I just like it. Last Saturday Uncle D,  Aunty E and baby cousin went back to England. We enjoyed having them and got lots of precious time with our little niece/cousin. In less than 2 months we're flying to England for a week and to have Christmas there.
I would rather we drove and got the ferry from Hook of Holland but this year we're flying. It's okay as we get loads of help in the airport so it's not too difficult.

Here's a few photos from when Uncle D, Aunty E and baby cousin were her.

Here's a little thing I wrote for the MS Society

This picture is from a typical morning in our half term. We're relaxing together and that is also what you can call 'hygge'!

You can read it right here!

I grew up with 'hygge' so it is a little difficult to explain. But 'hygge' can be a big thing or little thing. It's different from person to person. A quiet slow lazy morning like on a Sunday or like we had in half term is 'hygge' for me.
Dinner with family (we just had Uncle, Aunty and little baby Cousin visiting from England and staying 4 days) where we played Chinese Whispers is 'hygge' too!
I could mention more things but I think you get it.

We said goodbye to Uncle, Aunty and baby Cousin yesterday morning. Luckily we see them already again at Christmas. Yeah, Christmas which also is 'hygge'.

Road Trip

Some of the music we listened to going to Germany and back on Friday. The kids had nowhere to run and ended up liking most of mummy and daddy's playlist.

Friday, the daddy had the day off and we all went to Germany. We live only an hour away and on a rainy day it was a nice thing to do. Also we're still so amazed with our new car that a longish drive is a bit of a treat. We finally got a car with automatic gear and it's a dream to drive with. Especially for me with my constant-pins-and-needles-feet and my heavy left leg. Not that I got to drive eiher way though. The hubby thought it was best he drove. I have the car every day so he dosen't get to drive it much. So I let him drive of course... no need for tantrums.

We had a great little road trip and have been relaxing the rest of the weekend. Tomorrow it's back to school again. Everyday life is back. Well, nearly because on Tuesday Uncle D, Aunty E and baby I. arrive. They're staying until Saturday. We're all very excited.

This is my treat I brought back from our little road trip. I love the jar!

Something like 5000 children and their computers.

All sitting side by side playing games. There was like real gamers/youtubers there too. It's called a LAN Party - the little man and daddy learned.

They spent a good 3 hours there last Saturday. There were things to try such as virtual reality glasses. Both the little man and daddy tried them. The daddy wasn't too keen and took the glasses off quickly. The little man also spent some of his pocket money. He's a Pokemon hunter and a cap was needed for that.

The little man and his Pikachu.

Meanwhile the princess, her friend and I went shopping. We walked, or the girls did, I was on my little mini scooter. We went from shop to shop and were ready to go by the time the daddy called and asked us to come pick them up. A tired little man and 2 tired girls sat quietly in the back of the car on the way home.

Now it's already Friday. Where did the week go? We're of to Germany for a day trip today. We only live an hour away from the border.

Have a lovely Friday everyone.

Nurses from all over Europe and me...

I went to Copenhagen this week to speak to a lot of MS Nurses about clinical trials as a patient of MS.

It was cool and everyone was really nice and asked lots of questions. I love that I can make a difference by doing such things - or I hope I'm making a difference...

I also enjoyed the train trip back with my latte and fantastic book.

I'm not clumsy... really I'm not!

I wish I was though. If only that was the reason and not an illness that won't ever go away. What made me smile when I read this though is that at least it's funny words. Because the MS can make me look like I'm drunk and I hate that but these words are harmless really, don't you think?

Anyway, it made me smile so here's the rest of the words....

Some weeks just fly by, don't they...???

I feel this week has gone sooo quickly. We haven't done anything special really just normal stuff. Took me a few days to get over the Wedding, that's how my MS body works. It'll let me have a good time without bothering me then hit back the next days.... Even though the daddy and the diglots baked cookies to cheer it up. I got cheered up but my MS body took 3 days this time. Think I need to have a word!

Tuesday was Sports Day at school and the weather was lovely so no muddy clothes for me to wash.... Oh, and apparently pancake-baking-over-open-fire is a sport!!! Lego building wasn't so the princess and I had to just do that at home. She has so much Friends Lego now and loves building with it. I love when I'm allowed to be in charge help out.
The little man is into drawing at the moment and he has chosen to draw fruits, veggies, tools and guns.... Yep, guns! The purple one was for his sister. He gets up in the morning and draws, he comes home from school and draws.

Tradition here at ours is that on Fridays the diglots have a bowl of treats but not if bad behavior has been going on too much... Well, this Friday somebody had not been good so somebody had a bowl of fruit instead. Somebody then stated that "somebody had not had treats 3 times on a friday" and then concluded somebody had only been very naugthy 3 times ever... Well I think not, but let's leave it for now!

Actually I feel September has gone really quickly already or maybe a lot of things have happened, like the proud moment when the princess recieved her t-shirt at school for reading 5000 pages. Or when we went to have a big ice cream on the first day of Autumn. The Princess started gymnastics again every Monday evening, now being the oldest on their team. So I guess the days have just passed quickly getting back into routine.

The book and on the radio!

My colleauge on the danish MS Blog I write on has made this book. It's in danish but I'll show you the pictures anyway. The book has a short story from 18 different people all with MS. It's free on the internet and a book I wish had been available when I was first diagnosed. It's a book about real people by real people living with MS. Today I'm going be on the radio, danish radio, talking about life with MS. I've never been on the radio and am really excited... Especially excited to wear those big headphones and speaking in a mic!

Tomorrow it's World MS Day!

Here in Denmark we've been kissing MS away (or tried to anyway, wish it was that easy) to raise money. As I wrote here a while back, I was sent this green lipstick.
I had it with me today when I went to the MS Clinic and I got one of the nurses and 2 students to put it on and pose for a photo. They all agreed to have their picture shown on my blog so here they are....

Have a happy World MS Day!

They don't listen....

"My mummy's legs don't listen to what her brain tells them"

The little man was telling his mate at school. I was picking them up and it was the first time we were having this little boy over to play. He had asked me why I walk with a stick and before I could answer the little man had. His answer being easy to understand for his mate.

"It's her 3rd leg if one of the others doesn't work properly"

The mate nodding like that made sense and said he thought it was cool with this 3rd leg thing. And that was it... With the facts sorted we were ready to go home so the boys could play!

I have used this drawing before a couple of years ago but feel it fits this blogpost so here it is again. The little man and I out for a short walk when he was around 3 years old.

Kiss MS Goodbye!

Wish it was that easy but never the less worth a try.... In Denmark the MS Society has a campaign called Kiss Sclerose Goodbye to raise money for reseach the whole of May. The colour of Hope is green so the pin with little lips you can buy are green. The lip balm is not though but very nice but I was sent a green lipstick to use and then asked to take some photos.... The princess loved it and now wants to wear it every day. That's not happening but today me and her tried it on. The daddy let me kiss him but the little man wasn't having it!!

You're welcome to share this.....

Not finished with Mario yet....

Since Monday when the little man had his Fastelavn party at nursery, he has asked to wear his Mario outfit every day. So when back from nursery, Mario has appeared and so it was on Friday as well. The princess had her Fastelavn party at school and went as a red indian girl.

My colleague from the MS Blog I write, is making a book which I have written a piece for too. He was coming around on Friday to take some photos of the children and me. As the princess was dressed up the little man also insisted to be Mario of course. So me hoping for some lovely photos with the children and me became the red indian girl, Mario and me! He took a lot of photos! The photos were all lovely, this being my favourite...

This is his webpage (in Danish but the photos are lovely) !!

Freedom...!!!!

Tomorrow I'll get my little mini scooter that can be folded and only weighs 23 kilos. It's amazing and so smart, now I don't need the wheelchair anymore and the daddy gets his hands free. No more pushing me around, now I'll do the driving! It has a pet-name, Luggie, and is defo my new best friend. I'm now not such a pain in the bum to take out as I'm now mobile. So going into London for the day this Christmas holiday will be nice and easy and actually possible. I have also finally filled the form out to get my disabled card for my car. That has taken me 4 years to come to terms with having to have, but why wouldn't I really? It will make my (our) life a lot easier and that's worth it, isn't it?!
Let me show you guys the mini scooter that will give me my freedom more or less back.

Tomorrow afternoon it arrives and it's blue, Chelsea blue which made the daddy very happy. It's not as wide as my wheelchair so will fit everywhere I go. I'm so excited and so is the daddy. It suddenly gives him a lot less stress when we're out as a family.

And we're back....

Wow wow wow... It was 3 absolutely AMAZING days!!!!! We had the best time ever... Disneyland is FANTASTIC!!!! We tried all the amazing rides! We met Belle and the last day - Rapunzel. We saw a car stunt show! We had breakfast with Mickey Mouse and his friends. We had lovely dinners and just an amazing time.... It was like a Fairytale!

DAY 1.
Tea cups spinning around, family photo, a princess and lots of fun. The little man and the princess needed a little break every now and then so mummy's wheelchair came in handy in more than one way! By the way, Disneyland is fantastic for us disabled, we get fantastic treatment so we can go on the rides together as a family. We were all amazed and overwhelmed and after a busy first day we rested in the lovely hotel. The princess and little man got to play with their new toys they bought with their holiday money.

DAY 2.
We spent the whole 2nd day in the Disney Studios. It was as amazing and exciting! We made our own cartoon, saw a stunt show and had a very exciting dinner with an entertaining chef...

DAY 3 and our last day....
We drove cars, met Rapunzel and the last thing that we did before our 3 days in Disneyland Paris were over, was watching the parade! AMAZING.....

The rest of our mini Europe trip and honeymoon you'll hear more about later.

And we're off!!!

On Friday at 8am we're starting the car then slowly backing out of our driveway and off we are towards our first stop, Cologne in Germany. After a night there we''ll head off towards Torcy in France to stay one night in a hotel only 10 minutes from Disneyland....

Yes, you guessed right, Disneyland is where we going!! Woo hoo.... Sunday morning we'll get up and drive the 10 minutes to get there and 3 days of magic can begin. We're so so excited and I'm not sure who's more excited the children or us! Not to worry if my blog is a bit quiet for a little while, I will make sure to write as soon as possible about our adventures with lots of pictures.

We're going on a mini Euro trip on our way back home from Disneyland to Denmark. Brussels, Scheveningen, Hannover being our main stops... might sound a bit random and actually it kind of is! It doesn't make it less exciting though and I'll let you know all about it. Now I will be continuing packing the car and getting the dvd players ready for the princess and little man to watch on our road trip.

Where are you off to on holiday this year? Are you jumping with excitement like these two....??

(I am a tiny bit worried about how my MS will behave, but I am not willing to let it decide how my honeymoon and holiday turn out though!)

36 hours.

Is the amount of hours I spent away from the princess, little man and the daddy. I missed them so much but luckily I was busy so the time went quickly.
The company I write for had booked all of us bloggers in at The Hilton Hotel at Copenhagen Airport. It was the easiest when we come from 4 different countries I guess. I must admit I loved it and I enjoyed a good nights sleep. The hotel was amazing and the food absolutely fantastic. Oh, the meeting was good as well! We came up with quite a few new features for the blog, new ways to do things etc. It's always nice when we meet for our yearly meeting. Some of us have been writing here for 3 years now.

I did ache to get back home though.

The day I think I met my Guardian Angel.

Was a Sunday afternoon at the end of September 4½ years ago. It was when I was in a Neurology Hospital (Queens Square in London) for 3 weeks and could only have the princess (only 2 at the time) and the little man (3 weeks old) visiting me 5-6 hours a day. It was when the sound of little feet running down the hall was the best sound in the world! (read)  It was when an Irish woman was admitted to my ward.
She wore sunglasses, had curly black hair and a lot of it. She was chatty, smiley and we soon got talking. I asked why the sunglasses and she aswered MS. I suddenly felt relieved, hopeful, even happy because I was not the only one with MS.
She told me her relapses would come very suddenly. Like the other day when she was walking her three children to school and nursery. Suddenly she fell, luckily nothing happened and she managed to get the children where they needed to go and just got home before all energy was used up. She told all this with a very positive attitude and was just matter of fact about everything.
Then her husband rang. After talking to him she told me that he was struggling keeping things together, the children were upset missing their mummy, could she come home? She said, that it was more stressful being in hospital, that now the MS could do whatever, she was going home.... The next morning she discharged herself and was gone!
When the daddy, princess and little man came to visit me that morning, they were met by a happy, rosey cheeked, smiling, still paralysed but very hopeful and determined me. I felt there was nothing I couldn't do. The nurses all noticed, the family noticed, I noticed!
Was this woman there to tell me to get on with it, that life goes on? That giving up was not a choice I had? Was she my Guardian Angel?

"To infinity and beyond!"

Tommorrow is medicine day. It's the day every 4 weeks I go to the clinic to have my MS medicine. It's nice it's only every 4 weeks but what is not so nice, is to be reminded about the fact I have MS. I don't think about my illness in my daily life. Of course I have the stick with me at all times but that's part of me now. I even think that, if I somehow got a lot better suddenly and could walk normally again, I would feel weird without the stick, kind of naked!

At least it's Friday and also the beginning of half term. We now have a whole week off! Well, not the daddy, he only gets 3 days at the end of the week, but the princess, little man and I have a whole week off! Whoop whoop....
School has their "Fastelavnparty" (read) tommorrow so the princess is very excited. She hasn't yet decide what she'll go dressed up as. The little man had his "Fastelavnparty" yesterday at nursery and he went as.... Drumroll please!

I'll let you know what the princess goes as tommorrow!

Little feet running.....

This is one of my best memories. It's from a time in my life where I should be ecstatic with happiness, which I was to a certain extent, but it was tainted by the situation we were in. I'm in hospital paralysed from my chest and down, only just learning to cope with the diagnosis of MS. The princess is 2, the little man 3 weeks old.
Every day the daddy would bring the princess and little man to see me. I would sit in the bed waiting for the best sound ever, little feet running down the hall! Followed by the princess' little voice calling " mummy mummy ". She would be closely followed by the daddy and little man. She'd climb into the bed to cuddle me, then I'd get in the wheelchair. The little man would be put in my arms propped up with pillows, there he'd stay the next 5-6 hours while I'd chat with my little princess. For 3 weeks the sound of little feet running down the hall was the best sound ever.