It has now been 3 weeks since I started the treatment and I have to admit I feel much better both physically and mentally. Reminiscing about my state 3 weeks ago, it made me realize what it would have been like if I hadn’t found this treatment. It was a sharp reminder of how grateful I should be both to my mum and Dr Lee. It also made me think about those who are suffering, probably lost and feeling helpless by lack of access to effective treatments. So in my spare time in the evening, I decided to do some online research on how other sufferers in the world endure struggles in life. In all honesty, when I was still in the UK, I only found out to the extent that not many doctors are familiar with Dystonia (therefore difficult to diagnose) and there were not many treatment options that have long lasting effects. I had not read about the life stories of the patients. It was not difficult to find various blogs uploaded by people who were hurt by surrounding people because they don’t understand what they were going through and many were neglected by those who should have the answers. Reading some of the stories actually made me cry and I couldn’t help feeling guilty thinking that I probably should have suffered longer to realize how lucky I am. I felt so vain and was ashamed of myself. Those thoughts did certainly stay for a while and I was lost in my own world.

I spent most of today meditating on those thoughts and thinking of ways to overcome it. It started off as feeling disappointed with myself and I could see it progressing into more depressing state. I concluded that feeling guilty was not going to change anything and perhaps I should put those thoughts aside. I should concentrate on receiving treatments and recovering. May be when I’m better I will be able help other people. I hope I can…

3 thoughts on “24/10/13”

  1. I know exactly how you felt Hun, Iv had dystonia since Sep 2012 and I was 6 months pregnant when it first hit me. For the first 3 months I could hardly get out if bed, needed help to eat, even go to the toilet :-/ I felt like I was in someone else’s body and they had all the control. I was alive but so far from living it was the most scariest time of my life! Now each day is still painful and a struggle, I still get sad when I look at my baby daughter and wish I could be a mum who can take her out for the day and do fun thinks BUT thanks to botox I’m a lot better than I was and because of that like you I have thought of others and laid in bed crying of the thought of those poor poor people….I don’t like the thought of anyone going through what I have . I know you understand.x

    1. Hi Pink Butterfly,
      I know what you must be going through too. I still often feel guilty that I have been able to recover whilst so many people are suffering. And many even have a family to look after, like yourself and I can’t even begin to imagine what it would be like facing hardships every single day. I really hope that you can recover soon and get to do things that you have wanted to do with your baby. I’m sorry I can’t do anything more to help.


      1. I can understand your guilty as I’m sure a lot of people feel the same when they recover from something so horrible like this (I know some cancer patients who also felt the same guilt) but what you are doing to help other and spread the information to others in need is such an amazing thing and in doing that you will help many people. I also have a great passion to want to help others when I myself recover from this life changing condition so admire greatly what you are doing so change that guilt onto pride 😉 x

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