Monday, September 1, 2014

Another update



I keep telling you that I'm back, and then I just disappear for weeks again, so I won't tell you that today. If I'm back or not - I really have no idea, but it does feel nice to write again.
This summer has totally sucked. Due to my illness I've spent pretty much every day at home, and I guess I could have counted the visits I've had on one hand, not because people didn't want to visit me, but because I was to weak to have visits.  I will try to have one or two visits this week though, I miss my friends and I certainly don't want to lose them.
Other than that - I plan on taking an exam in November this year. I'm not able to attend classes so I'll have to learn it all on my own, but I think it will be all right (hope). I'm taking social studies btw.
This was one messy post, so I think I'll just round up now. Next one will hopefully be better.

~ Sarah ~

Sunday, July 6, 2014

Back

I know it's been a while since last time I checked in. I keep telling you that from now on I'll do better, and then it takes weeks before you hear from me again. Last time I was really motivated to do well, to update you and write about things that I like. But then I lost someone who means the world to me. All my energy (and even more) has gone to the wake, the funeral, the memorial and other get together's. I had no idea how I would react. I've been trying to stay strong for my family, but there is only so much I can do to prevent the symptoms. The nights are worst, so the other day my doctor gave me some sleeping pills to get me back on the right track. I won't be using them for long as they can get addicting, but they have given me a couple of hours sleep the past three nights, and the difference in the mornings are huge.

I just wanted to let you know why I've been absent, and from now on I will update the blog when I have something I want to write about. I won't say that I'll update it every day, or even every week, because I have no idea if I'll be able to. But I like having this blog, so I will keep it up. Thank you for all of you who still follow me, soon I will make it worth your while.

~ Sarah ~  

Tuesday, June 17, 2014

New week - New start


Made a rough plan of my week yesterday and thought I could share it with you. As a spoonie you can't really plan a week, but a least I have some plans and if I'm not able to go trough with everything, then that has to be OK.



Don't know if this is interesting, would like some feedback on that. Think I'll be posting a plan of my treatments and other set plans on Mondays from now on, and than a summary on Sunday, does that sound OK?

~ Sarah ~

Sunday, June 15, 2014

SUNday


I woke up in my room which was filled with sunbeams at 8 AM, and looked outside to find a sky so blue you can't help but spend a few seconds just to stare. It was just me and my mom at home, so we made a delicious breakfast, in my case oatmeal with banana slices, and spent the morning out in the sun. One of our neighbors saw us and joined us for some coffee and a little chit chat too, I always love that.
Most of the day I lay on the lounger, reading, listening to music and working on my tan. Of course, I didn't think of using sun protection, so now my face - thankfully only my face - is tomato-red and burning. Great.
After a while I got really tired from all the sun and the heath, so I spent the second half of my day inside watching the Lindsay Lohan documentary show. I really like that girl, so I want her to get back on track.

// Picture from We Heart It //


Now it's time to go to sleep, I'm really tired. Even though this light and warm season makes me better, it's still exhausting to spend too much time in the sun. But one good thing is that I used to be tired after spending all day in the sun when I was healthy as a horse too!


(Not mentioning Fathers Day, as the Norwegian Fathers Day is on November 9th this year. It's not that I forgot my absolutely wonderful, supportive and loving father, just thought you should know that. )

Hope you all had a great Sunday!

~ Sarah ~

Saturday, June 14, 2014

Finally, it's time

Boy have I waited long for the World Cup 2014 to start. The excitement before the opening game between Brazil and Croatia was immeasurable. Pretty pleased with that game, except for the referee though.. Thank goodness that Oscar scored the 3-1 goal, or it would be a discussable win.
And who didin't get blown away by the Spain vs Netherlands  match? Wow. Crap. Wow.
Anyways, I hope you all enjoy the World Cup, and if football doesn't interest you; I hope you enjoy that summer has finally arrived as well. Have a great day readers, and note that I intend to update my blog more often from now 


// pictures from We Heart It //


Anyone else out there crazy about the World Cup?

~ Sarah ~ 

Monday, May 12, 2014

M.E. awareness day

Today, May 12th, is the international M.E. awareness day. In that occation I want to write a post about my illness and how it impacts me. 

Almost two years ago, I got ill. That was only a infections mononucleousis, but it developed to ME. The past two years have been the worst of my life. I´ve had to give up almost everything that makes me me. I´m no longer a athlete or a student, I´m no longer a employee or a coach, I´m no longer the friend, sister, daughter or person that I want to be. I am no longer full of life. 
Having a invisible illness is tough. Of course, sometimes people can see that you are feeling bad, but if you saw me walking down the street, all you´d see was a normal girl. You wouldn´t be able to see how painfull every step was. You wouldn´t see the constant headache I´ve had for the past two years. You wouldn´t see how much I lenghten to get back to bed. 

About the same time I got ill, I started my freshman year in high school. I was a dedicated 16 year old girl, filled with motivation. The school I went to specialized in elite sports. I was one of the cross country skiiers, and my classmates were football players, dancers, handball players, alpine skiers, freestyle skiers, biathletes etc. That was the perfect place for me - but I didn´t get to attent many days of school before I got ill. I´d felt bad for a while, but suddenly my body said stop and I was no longer able to push it. 
Now I´ve had to put my education on hold. The past year it´s been all about getting though the day. My focus has been on my treatment, but it´s all gambling whether it will work or not, but I have to feel like I am doing something to get better. Of course, I had to quit my spare-time job right away. Sports were out of the question, my favorite thing in the whole world. No more sparetime activities. No more going out with friends. My social life right now is through the internet and visits from my friends at home. That´s not the way a 18 year old girl should spend her time and youth.


"The Perfect Sarah"
A couple of days ago, I wrote down in a mindmap what would make me perfect. When I was done, I looked at it and guess what I saw? If I hadn´t been ill, I would be her - The Perfect Sarah. Here is my criteria for me being "perfect":
❤ The Perfect Sarah is sporty and strong.
❤ The Perfect Sarah has top grades. 
❤ The Perfect Sarah has plans for the future.
❤ The Perfect Sarah is a kind, thoughtful and good friend.
❤ The Perfect Sarah is fun to hang around with.
❤ The Perfect Sarah is confident.
❤ The Perfect Sarah is outgoing.
❤ The Perfect Sarah is healthy

"The ill Sarah"
love the perfect Sarah. But that´s not who I am. I am the ill Sarah now.
✘ The ill Sarah is tired and weak.
✘ The ill Sarah is not able to work hard or at all with school.
✘ The ill Sarah has a uncertain future.
✘ The ill Sarah is too tired to give back to her friends. 
✘ The ill Sarah is boring and never does anything "fun".
✘ The ill Sarah has a poor self-esteem and is insecure.
✘ The ill Sarah is withdrawn from her social life.
✘ The ill Sarah is, well, ill.

To all you out there that doesn´t know how much M.E. impacts a life, look at me. I loved my life, now I hate it. What I feel is the worst, is that I know there are many M.E. sufferers that struggles more than me. I am still able to walk - I don´t need a wheelchair. I can live at home, and rarely spend nights at the hospital. I have the best family and friends that all tries their best to make my days as good as they can be. I still have hope.






The importance of M.E. awareness
More and more people are diagnosed with M.E. Younger and younger people are diagnosed with M.E. Too many meets faces filled with questions if they say they have M.E., and that involves meetings with doctors. The M.E. sufferers needs the world to know more about this illness.
If the awareness of the illness had been better, the life of M.E. sufferers would be too.
★ There would be more interest and funds for research.
★ There would be one less challenge for the M.E. sufferers. Healthy people can only imagine how exhausting it is to explain over and over what the illness is and what it does to you.
★ Doctors would know more about the illness, and less misinformation would be given. 
★ Hopefully, M.E. awareness would lead to a efficient treatment.

We need this. Awareness. Please share this post or in some way the importance of M.E. awareness. I will be forever gratefull. 

#May12BlogBomb



~ Sarah ~

Friday, May 9, 2014

I´m a fighter

Yesterday was a really tough day. I couldn´t sit, I couldn´t stand, I couldn´t eat, I couldn´t drink, all I could do was to squirm in pain under my blanket. My headache was at it´s worst, I nearly threw up because of it. Every muscle and limb ached and I wasn´t able to lie still and get to relax even a bit. I absolutely hate those days, and I am so glad I´m feeling better today.

// Picture from We Heart It //

As many of you know, I am currently staying in a rehabilitation center. I´ve been here for over two weeks now, and was supposed to go home this wednesday, after three weeks. But, since things haven´t really gone my way - the fact that I´m worse now than I was when I got here - my supervisor and I have decided that I will stay here for another two weeks. I soo badly want this to work, and I don´t want to go home feeling like this - both fysically and mentally. I will give this a second chance, and then we´ll see. If it doesn´t work I guess I am not ready for it. But I will continue fighting, I will not quit.

~ Sarah ~


Wednesday, May 7, 2014

Update from rehab

I know it´s been forever since I´ve posted something, but I´ve been all caught up in things here at rehab. Things are going ok, could have been a lot better. I try to stay positive at all times, but its hard when you feel like things are going in the wrong direction.. I am worse now than I was when I got here, and I´ve been here for two weeks. I thought I was supposed to be better.
The first two days I was a little shocked about how much I thought I was supposed to do, and after two days trying to do it all I was totally exhausted. But then I had a meeting with my contactperson up here, and we developed a plan that we thought I was able to follow. That is the same plan as I still have: maximum 15 minutes of activity a day. But the thing is that going from my room to the cafeteria is activity to me. Eating in a room filled with people is activity. Chatting along with them is exhausting. Dressing before/after my "real" activity is hard. It´s all tough. 

On the bright side, I am able to do soo much more now than two months ago. It is progress, and I so badly don´t want that to be ruined.

So, today my activity was a walk with the group and we did squats and lunges before I had to leave. The rest of the group continued with other basic exercises that we can do at home without any equipment. Other days we´ve been in the gym, doing Tai Chi on the grass watching the sun rise, regular walks, strenght training outside etc. The others have exercises in one of the pools 4-6 times a week, but I´m not allowed to as it takes too much energy to shower and get dressed/undressed twice + swimming. That sucks, but I know it´s right as I tried joining one of the swimming sessions my first day here. 

But, it´s not all bad. In fact, I´ve spent every day positive till yesterday, so if I´d written a post then, it would have sounded a lot different than this. That post would have been smiling itself. 

Other than that, I´ve watched lots of movies and TV-shows on netflix, been drawing a little and nitting a lot. Now I´m excited for tomorrows talk with my contactperson, and see if she have a plan to get me back on the right track. We will also discuss whether I should stay here for another week. I am supposed to go home next wednesday, but maybe I´ll be here longer. 

The other day, me and one of the others here went out in the boat. He rowed and I enjoyed the peace and quiet. I took some pictures for you guys, but other than these I barely take pictures even though this is the most idyllic place ever.




And this is something I drew the other day. Not finished, but I don´t really know what more to do with it.



~ Sarah ~

Sunday, April 20, 2014

I need your help and opinion

If you´ve read my blog before, you probably know that I was recently vacationing on Gran Canaria. Well, that wasn´t all I did. The trip was booked for three reasons. Number 1: To get to see something else than my livingroom. Number 2: To see if the climate helped my health. Number 3: To visit a school which I´ve applied to, and am now considering going to this fall. Yes, you read correctly, I´m considering moving to Gran Canaria. That´s why I need your help and opinion, what do you think?

Do I think the climate helped my health on Gran Canaria?
Yes. I absolutely do. The week before we left I was better than I´d been since October, but that doesn´t mean I was well. That means that my headache was reduced, my energylevel was slightly better, I was able to have friends over some nights and I was able to pack my bag all by myself. So, I was much better, but I wasn´t good. The first days on Gran Canaria was a bit tough. The trip was long, 16 hours in total, and of course I was tired after that. The first days I spent many hours in bed, but I was also able to sit outside on our balcony to get fresh air. As the days went by, I recovered more and more from the trip. I started hanging out by the pool and some nights my mother and I even went out for dinner. We came down there on a Saturday, and the next Friday we visited the school. I´ll tell you more about it below. After visiting the school we went out to eat lunch as we were already out in the city. That was a mistake. When we finally got back my headache was a 8 1/2 out of 10, I was nauseated, had lots of musclepain and was ill in general. I slept for three hours, from 3pm to 6pm, but when i woke up I was miraculously much better. My headache had reduced to a 5, I was no longer nauseated and had hardly any musclepain. I was trilled, but took a calm night on the balcony to make sure I wouldn´t ruin the recovery. I went to bed early, and when I woke up the next morning, my headache was hardly a 3 and I was feeling good. I can´t remember me recovering that fast even once since I got ill. Saturday I spent almost the entire day by the pool, at night my mother got us takeaway and I went to bed still feeling good. 
The next week was even better. I was feeling good every day. I took two short walks where one of them was up stairs after stairs (518 steps) to reach a viewpoint. I swam in the pool, I ate out many nights, I went to bed almost without a headache (and I can´t remember last time that happened), and I smiled, laughed and was really enjoying myself. The last day we even took a day-trip to a town nearby, it´s name is Puerto de Mogan and it´s being called Little Venezia because of it´s similar canals linked by bridges. It was beautiful and it was a market there, same type as I visited in Arguineguin the same week(!!), and we walked a lot and we ate out and when we got back to our hotel we had been out for 6 hours, and thats almost a day of school. We went home the next day and that trip was tough, but now I´ve been home for a week and I´ve kept the good shape I had on Gran Canaria! I´ve been able to continue taking short walks, having periods almost without a headache, a minimum of musclepain and, yeah, I´ve been good. Great actually. 

So you must see that I think very positively about Gran Canaria. It really did me well, and I am thinking that since I got that well after two weeks, how will I do after ten months?

The school is a Norwegian private school. I know that I haven´t told you that I am a Norwegian before, but I thought it was time to let you know (plus then I have a excuse for my bad English). 
Well, as I said, the school is a Norwegian private school. It´s located between the popular tourist cities Puerto Rico (where I stayed) and Arguineguin. It´s a tiny school with elementary school, middle school and high school on the same grounds. To be more precise, the kids from elementary school have their playground outside of the high school classrooms. Elementary- and middle school have about 160 pupils in total, and the high school between 70 and 90 pupils. 
I spoke to the school counselor, and he seemes to have a good idea of how to get me trough school. And that is exactly what my goal is, to get trough school. I´ve tried to keep the old me, the girl who only accepted, and only got, good grades, but then I use too much energy and I end up not being able to attend the test which I practised for. I simply get exhausted by the preparations. So, my goal will be not to fail any classes, and thats it. I will study at college, but I will have to choose a college that will accept me, and not get to attend my dream college. 
Some of the other pupils at the school are in some way ill and the climate helps them, and that´s why they attend that school. Others have parents or siblings who gets better because of the climate, and the rest of them only wants a different year or something like that. So it won´t be like going to school in a hospital, most of the pupils will be healthy, just like at any other school. 
The biggest downside of this is; I will have to move out. Not just move out, but basically move to another continent (not really, but hello, it´s almost Africa). Will I be healthy enough to take care of myself  and study? I have no idea. 

This is why I need your help. Do you have any advices or opinions to help me make a decision? Of course it will also be a lot more expensive to move out and attend a private school, but ignore that factor. Not that money isn´t an issue, but I´d rather like your opinions on the rest. I have to decide within Wednesday!


- What do you think? I really need your help and opinion.


~ Sarah ~

Wednesday, April 16, 2014

Pictures from Gran Canaria

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