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. 


~ 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 ~