First it was pains in my joints. I had to live through it the whole period of December 2002 until I was diagnosed - June 2003. A good solid 6 months before actual diagnose and proper Prednisalone i.e. Steroid intake. Actually, the pain started even before December 2002 but it elevated in that month itself.
Imagine all joints... and I mean ALL of your joints in terrible pain when you sit, you hold a pen, you stretch, you sleep.. any kind of movement. Even eating takes a long time to chew as the jaw-joints are incredibly painful. I remember the pain... I was trying to live with it throughout the period.
It's not that the Dr. I was seeing did not give me pain killers... In fact, there was aplenty of them prescribed to me and various types when the Dr. found out that the previous painkiller did not work it's charm to lessen my pain and swelling. Nothing worked.
Blood test after blood test. There was not a single conclusive proof as to what I was having at the initial stage of my SLE pre-discovery.
I was still going to university during the months of December 2002 up to February 2003 (before they close for semester break). I was studying for semester exams in utterly painful state. Not only was my joints acting up with swelling and pain, my hair had dropped in tremendous amount that it had left me bald. The "hikmah" or blessing of being in the university I was studying, the women are required to wear a "tudung" i.e. headscarf, being an Islamic University.
No one from my university mates knew I was suffering. Those who were from the same dorm as I couldn't comprehend my pain. In fact, there was an incident when I had asked for help to get a bottle from across the room, though my friend did help me take it, she thought I was just being "mengada" i.e. lazy to get it myself. This she admitted herself when she came to visit me after my diagnosis of SLE.
My ego was much bruised when I can't do everything on my own. When everything I do involves limitation and pain. I needed help from people but I'm not used to asking. Don't get me wrong, people are kind to help when asked but I'm used to do things on my own... and sometimes with gritted teeth.
When I finally got the diagnosis, university's new term was about to start. Pain had depleted totally from the intake of 60mg Prednisalone i.e. 12 (5mg) tablets of steroids. But because of the fact that I have high dosage of steroids, my Dr and family had successfully persuade me to stay off campus for one semester or until at least my situation became more stable.
Imagine all joints... and I mean ALL of your joints in terrible pain when you sit, you hold a pen, you stretch, you sleep.. any kind of movement. Even eating takes a long time to chew as the jaw-joints are incredibly painful. I remember the pain... I was trying to live with it throughout the period.
It's not that the Dr. I was seeing did not give me pain killers... In fact, there was aplenty of them prescribed to me and various types when the Dr. found out that the previous painkiller did not work it's charm to lessen my pain and swelling. Nothing worked.
Blood test after blood test. There was not a single conclusive proof as to what I was having at the initial stage of my SLE pre-discovery.
I was still going to university during the months of December 2002 up to February 2003 (before they close for semester break). I was studying for semester exams in utterly painful state. Not only was my joints acting up with swelling and pain, my hair had dropped in tremendous amount that it had left me bald. The "hikmah" or blessing of being in the university I was studying, the women are required to wear a "tudung" i.e. headscarf, being an Islamic University.
No one from my university mates knew I was suffering. Those who were from the same dorm as I couldn't comprehend my pain. In fact, there was an incident when I had asked for help to get a bottle from across the room, though my friend did help me take it, she thought I was just being "mengada" i.e. lazy to get it myself. This she admitted herself when she came to visit me after my diagnosis of SLE.
My ego was much bruised when I can't do everything on my own. When everything I do involves limitation and pain. I needed help from people but I'm not used to asking. Don't get me wrong, people are kind to help when asked but I'm used to do things on my own... and sometimes with gritted teeth.
When I finally got the diagnosis, university's new term was about to start. Pain had depleted totally from the intake of 60mg Prednisalone i.e. 12 (5mg) tablets of steroids. But because of the fact that I have high dosage of steroids, my Dr and family had successfully persuade me to stay off campus for one semester or until at least my situation became more stable.
My phase of pain had gone away, but it didn't mean that I was cured. SLE is an incurable disease. Emotionally I was scarred. To say I have recovered from the scar totally, is a lie. I feel it sometimes of what had happened. Even typing this out made some scars to resurface.
It's not easy to re-write things without feeling emotionally damaged. People see me as a strong human being. Mainly because I smile and I have a positive outlook in life. The disease has in many ways changed how I look at things... but it doesn't mean anything. Deep inside, if I look back to the past, I can still feel the hurt, the pain, the beginning of knowledge to learn I have SLE... the knowledge that I was NOT a normal 21 year old girl.
"Berat mata memandang, berat lagi bahu memikul" as the Malay proverb goes. It's true. No one knew about the pain I went through. My family saw everything and they had helped to their best ability to get me back to "normal". No one knows how sad I am that I was not able to be the normal daughter for my parents; that they still have to take care of me, emotionally, financially and unconditionally.
Despite all this, I try to think positive. Things turned the way it did for a reason. Now, I have more meaning to life and somewhat know my purpose when I survived and still am battling this incurable disease. It's not easy to make people understand what this disease entails. It takes more than research online, brochure and interviews... it's only when you ARE the patient and you ARE the person who is close to the patient, you will learn deeply about the disease.
Read more of my diary, I promise you will learn more bout the disease in a patient's point of view. If you want medical terms or medical answers, the exact medical quotation, I can't give you that.... but I can give you what I am going through as the days go by.
I try my best to make people understand my condition. To understand the SLE disease. Some of my friends who have their loved ones having SLE sometimes come to me for advice. All I could advice them is not to panic and not to stress out the person with SLE. Always turn to God, no matter what religion you are. Make him/her as loved and comfortable in their life. Learning about SLE for the first time is scary for anyone.
That was why I have finally decide to type out this diary. In HOPE to make people out there with SLE or with their loved ones having SLE to understand that things are not as bad as they are if you manage the disease wisely.
Don't let the disease win you over. It's not the end of the world. It is, if you want it to be.
One of my many mottos nowadays since the disease :
"Kalau fikir sakit, sakitlah kau!" (Translation : If you think you are sick, SICK you will be!)
Ouh well... enough for now. Next diary entry would be about the side effect of Prednisalone for me... especially on my hips. More pain!
~This is the diary of Sarah Kambali, LL.B (Hons) IIUM, SLE Patient~
It's not easy to re-write things without feeling emotionally damaged. People see me as a strong human being. Mainly because I smile and I have a positive outlook in life. The disease has in many ways changed how I look at things... but it doesn't mean anything. Deep inside, if I look back to the past, I can still feel the hurt, the pain, the beginning of knowledge to learn I have SLE... the knowledge that I was NOT a normal 21 year old girl.
"Berat mata memandang, berat lagi bahu memikul" as the Malay proverb goes. It's true. No one knew about the pain I went through. My family saw everything and they had helped to their best ability to get me back to "normal". No one knows how sad I am that I was not able to be the normal daughter for my parents; that they still have to take care of me, emotionally, financially and unconditionally.
Despite all this, I try to think positive. Things turned the way it did for a reason. Now, I have more meaning to life and somewhat know my purpose when I survived and still am battling this incurable disease. It's not easy to make people understand what this disease entails. It takes more than research online, brochure and interviews... it's only when you ARE the patient and you ARE the person who is close to the patient, you will learn deeply about the disease.
Read more of my diary, I promise you will learn more bout the disease in a patient's point of view. If you want medical terms or medical answers, the exact medical quotation, I can't give you that.... but I can give you what I am going through as the days go by.
I try my best to make people understand my condition. To understand the SLE disease. Some of my friends who have their loved ones having SLE sometimes come to me for advice. All I could advice them is not to panic and not to stress out the person with SLE. Always turn to God, no matter what religion you are. Make him/her as loved and comfortable in their life. Learning about SLE for the first time is scary for anyone.
That was why I have finally decide to type out this diary. In HOPE to make people out there with SLE or with their loved ones having SLE to understand that things are not as bad as they are if you manage the disease wisely.
Don't let the disease win you over. It's not the end of the world. It is, if you want it to be.
One of my many mottos nowadays since the disease :
"Kalau fikir sakit, sakitlah kau!" (Translation : If you think you are sick, SICK you will be!)
Ouh well... enough for now. Next diary entry would be about the side effect of Prednisalone for me... especially on my hips. More pain!
~This is the diary of Sarah Kambali, LL.B (Hons) IIUM, SLE Patient~
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