A Part Of My Life...

Because I had the first three periods off I had to go to the Gym for my physiotherapy. I have to be there at 8 in the morning. So getting up early and I already was pretty ‘Brak’ because Tuesday night I went to Grease the musical, so I got in bed quite late. I was still half sleeping when I got downstairs. My mom asked me what classes I got, Maths, French, German and English tto I answered. Why? She explained that all lessons after 5th where ‘facculatief’ so you did not have to go to them. Then she said that the wind was blowing so hard that it was actually dangerous to go on my bike all the way to school. So we came to the conclusion that I will go to the gym and after that just stay home and study for the test week.

When I was at the gym an old man came to me and asked why I was here. I answered to him that I had rheumatism. ‘But isn’t it too early for that?’ Well normally it is but I am supposed to me the lucky kid of 1000 other kids who has the youth form. The man told me he also has rheumatism for 40 years now. I felt quite sorry for him I told him that but he was like:
‘Do not bother I am old enough and have done a lot of fun stuff in my life, I still can do that. It is a shame that such a young girl has it, there are so many things you still have to do and that you have Rheumatism might make you that you cannot do that.’ I only nodded it was true. ‘ But I still can get over it.’ I said to the man. ‘It will only take some years.’ The man whished me good luck in my life.

This was actually the first time I talked to someone with Rheumatism in person, I mean I know no one here who has it too, and certainly not teenagers.

Over one year ago the doctor said to me that I had some form of youth rheumatism. I thought it would shock me, but it didn’t. I had no idea what to expect from it, the only thing I wanted was to get over this 24/7 pain in my hands. Soon after the doctor had told me the diagnose I got my medicine. They did not work and the pain got into my whole body. The doctor said that there were infections in the joints in my hands, hips, shoulders, elbows and knees. There were also some weird spots on my feet. Because I could not even bend my wrists in a 90 degrees angle the doctor thought that these joints were infected earlier. I was shocked to hear that this was in my whole body. The doctor was talking about getting a special pen to write with, putting my schoolbag at the back of my bike and maybe even get a laptop to work on at school. I also had to keep al my joints warm. My mom bought me ‘armwarmers’ I had to wear them the whole day, inside as well as outside. I didn’t like these things they just did not match my outfits and it sucked while I was writing. It only took two weeks and I did not wear them anymore.

I also got new medicine; I am still taking these ones. It is painkillers and they are supposed to make the infections in my wrist less. The side effects were horrible, I was dull al day long could not pay attention at school and my reactive power was like very bad. The first three weeks I did not dare to cycle alone because like the second day I was almost to slow to brake on time.

I also could not drink alcohol with the medicine. I tried one time and I got just so sick, dizzy and like the whole package. I found this so sucking because all of my friends were like experimenting with alcohol. Getting drunk and at parties everyone was drinking alcohol and I tried to find fun in other things.

Sometimes I saw that people did not understood what was going on with me, and sometimes I did not even know what was going on with me. Always when I got out of school I was exhausted everything hurt, especially my knees, hips and shoulders. Sometimes I got home and started crying on my bed. I remember one time that it was raining and my jeans was soaked and my gloves too. I still had to cycle two kilometers when the everyday pain got worse. I was screaming because it felt like someone was hitting on my knees and hips with an ice-cold hammer. My face was cold and wet of the rain, I felt that warm tears were rolling down on my cheeks. Somehow I managed to get home, thank god my mom was home. When I got home I collapsed and started crying real hard. ‘Why me mom?’ I cried, ‘One at the thousand kids get it mom! Why me!?’ my mom did not answer the question she just cared for me and stayed with me.

Sometimes I still have that thought, Why me? I still cry over it. But then I think, okay this happened to me I have to live with it. How hard it is. Sometimes when I tell people that I have Rheumatism they look weird at me and ask me if that isn’t that disease old people get? And sometimes when I tell them they only say ‘oh’ I think not much people know what it means to have it. You live everyday with pain, from the time you wake up until you go to sleep at night and then you are exhausted.

The worse time is when it is cold and wet, even when you are dressed warm you still have pain. The wet cold is getting through all your clothes. It is horrific.

When the summer was over I got new medicine, which would lead to 5 pills per day. These medicines would also make me duller but I could also have weird mood changes. I did not tell my friends about this, because it could sound like a weird excuse. Actually I do not have a lot of trouble with these supposed ‘mood changes’ only when the pain gets worse.

The last three months were like the worse I have ever had, my doctor suggested to take one pill less. I was happy to hear that because I hated to take all this chemical stuff but after two weeks the pain got worse. First I thought it was because of the weather that was getting colder but much later I came to the conclusion that it was because of the one pill I was not taking.

When I am cycling I have strong pains in my left hip. When I get at school after the exhausting cycle my shoulders hurt when I have to walk to the classroom. When it is cold and wet my fingers hurt and I can barely move them. When I get back to school on the bike my hips and knees hurt. At home my shoulders, hands and elbows hurt when I am doing homework. While working my hands hurt.

This is like the ‘schedule’ of pain of every day. I am trying to do as much as every ordinary teenager would do. Since 4 months I work and I am enjoying it, not everyone knows that I have Rheumatism, but I do not want them to think that I am weak.

A good friend of me said to me like 5 months ago that this rheumatism has embittered me. I think it kind of has, but not that big. Sometimes I look at this life quite different then I did one year ago. I have also changed during the year, I came more interested in paganism, and I started listening quite different music. Sometime is seek refuge in the music, it has gotten very important to me. Maybe I have changed the way I look too, some friends say to me I have. ‘You have gotten more into a Rocker.’ Someone said to me once. But when you have this you have to change your way of living and with it you change yourself. All I can say now is that I hope I will get over it soon because like the old man said: ‘There are so many things I still have to do.’

I do not know why I am telling you this, it was just such a relief. First I was thinking not to post it because it was quite personal, and because I cried when I wrote some stuff down. But this blog is about my life and unfortunately rheumatism has become a part of my life.

Greenthings

Music: Three Days Grace – Pain
Quote: Do not think about the things you can’t do, but about the things you can do. (Steve (OMNIA) has sent this to me once)