You Never See Us Then

I think a lot of people see us and think: They look so young, and so healthy. They don’t look sick at all.

Well, you most likely have seen us on a good day. When you see us we are feeling good enough to be seen in public. No, we aren’t healthy. We are still sick, it’s just that some days you have things to do, but you wait for those things until you feel like going out.

But, you don’t see us when we lay there, not being able to do anything. The only thing you have enough power to do is breath. That is almost everything you do in a day, lay around, breathing waiting for the energy that never comes. This is the life of a lot of us, a life bound to stay not too far off from the comfort of your own bed.

And you know, the night arrives, and people think: If they are so sick, then they must sleep a lot. Trust me when I say this: We don’t. We all would just love to sleep, but in the end we can’t.
I have been having trouble falling asleep for years, of course when it goes too long without real sleep you have that one night where you just feel like you can sleep for ever, and for that one day, I could fall asleep silently and without using hours to do so.
But for most of the time, I could use hours to fall asleep. I could lay there, listening to the silent sound of my music in the background for hours. I have a goal to always get up before 9 o’clock. And I have stuck to that for a while now, and even if I fall asleep at 3 or 4 in the morning, I try and wake up at 9.
This has become easier, because I have started to use Melatonin, and since starting with that, I have been able to fall asleep faster. But don’t let that fool you.
Having ME is like going to sleep, but when you wake up the charging of the body hasn’t gone right. I might even feel more tired when I wake up that I was when I fell asleep. Some days I can use days to just start functioning again.

You know, I love to read, but on the days where I am so tired, not even my favorite activity is tempting. I can look over to a book, and wanting to picking it up, but not have the energy to focus on what is says.

Some days I am just laying there, thinking and hoping for a better day tomorrow. And I don’t know what the next day will bring. But you never see us like this. You never see us when we lay here, hoping for a better day tomorrow. You see us on that better day, when you have to go somewhere because of something. So don’t you dare judge us on our good days, because there aren’t many of them. And for some of us, the better days aren’t getting more of, they are very rare.

CFS/ME Story #1

This will be an ongoing story time. This first part will be how I got my diagnosis. And honestly, when I am up to date on where I am now… the story is still not over.

I don’t know where to start, because I don’t know what you know. I don’t remember what I have told you before, and I don’t know how long this post will be. I think I will set a limit on how long this text will be, and if it is longer, I will have another part of this.
It all started in 6th grade (if anyone gets confused about the Norwegian School system, just write a comment and I will write a post all about the Norwegian School system because it is different than other places), I got sick and went to the doctors. They figured out that I had mononucleosis, it is transmitted through saliva.
Throughout the whole wintertime in 6th grade, I stayed inside without any training. And when I got better I thought it was all ok.
However, from 8th to 10th grade I slowly got worse, I was home from school a lot. I got my homework done and everything because I always had my schoolbooks with me home because I never knew if I would be sick the next day, or just too tired to go to school.
In Norway, we have two different psychology services, and throughout 9th and 10th grade I was in contact with both because at first, we thought I had problems concentrating because of ADD. One of them saw me one time and concluded that I had anxiety and was depressed, something I wasn’t. The other one concluded that I hadn’t.
At the same time in the 9th grade, the headmaster of the school wanted a meeting with my mom. And even before she had said her name she said: “I am considering turning you in to child welfare.” And then the tone was set from there. She is now no longer headmaster in my old school, and the teachers wanted to celebrate when she left school.
My mom, dad, the headmaster, our school doctor, my doctor, and my teacher had loads and loads of meetings. Nothing would make me better. And I still had no diagnosis, until I started 10th grade. I got into out Hospital, and I stayed there for a while, they were doing tests, and figure out if there were anything elseā€¦ there wasn’t. And that is how I got my diagnosis.

6 things you are allowed to do when you are chronically ill

Stay in your pajamas all day

You know, why waste energy on putting on clothes and thinking about what to wear. Also, why waste being uncomfortable. If you have a really bad day, and the only thing you know you are going to do that day is stay in bed or on the couch all day, why dress up. Why don’t you just stay in comfortable clothes. I love to stay in pajamas, and if I know I’m not doing anything that day, I will stay in my pajamas all day.

Take the elevator instead of the stairs

Just thinking about the stairs is making you tired. And you know that climbing those stairs will be the only thing you can do that day, if you try. You are allowed to take the elevator, people who know you will know why. Don’t use up all your good energy on the stairs, if you don’t feel like it, then don’t do it.

Cancel plans

When you are chronically ill you never know the day. One day you might be all right, and the next… not so much. Your real friends will understand if you have to cancel plans, they will know that most likely you are feeling so ill that you can’t go anywhere. Maybe you can’t even get out of bed. If you know you have a bad day, you shouldn’t push yourself. It is better to cancel those plans, and make up for it later, when you are feeling better.

Have a spa day

I mean, you don’t have to go to an actual spa if you don’t have the money for it. But, if you have a bathtub, fill it up with warm water, use a bath-bomb with some relaxing fragrance. Take a face-mask at the same time. Put on music or your favorite TV Show, and just relax. Just take your time, and relax some. You might feel a little better.

Have fun

It is nothing wrong with having fun. Everyone should have fun. Hang out with friends, or do things you consider fun. Even if you are chronically ill you still have maybe that one day where you are feeling all right, so why not use it to something fun, instead of putting on Netflix. Call a friend, see if they have time to meet up with you on the time of the day where you are feeling the best. I know that some might feel better in the mornings and some at the evenings. Find the best time for you.

Cut negativity and stress out of your life

This just makes you tired, and makes you feel bad. Negativity is not good, surround yourself with positive people, and positivism. Also, all that stress, cut it out. I know it is not easy, some days I might stress, before a meeting, before a doctors appointment, and other things where I will get answers to something. I try to cut it out, try not to overthink, try and relax and use my energy for me.