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 ~

1 comment:

  1. Thank goodness for ME awareness week! Not only does it help us share the realities of this cruel disease with people who know nothing about it...but it also enables fellow sufferers to find one another!
    Every time I read a fellow sufferer's account of the illness it makes me feel very sad. But I'm really pleased to have found your lovely blog and look forward to reading more! Bon courage to you as we say here in France xxx