Today was quite an interesting day, a few of dystonia patients from the clinic met up for lunch and discussed symptoms and treatment progress. I knew some of them but never got to talk in detail about their stories. One guy who had been coming to the clinic for quite a while told me he suffered from dystonia for over 10 years before he started the treatment – he also had schizo and anxiety. He told me that every time he went to the hospital he was told to come back another time because they didn’t have a suitable treatment other than botox. Once he found this clinic, he has been making 5 hour return trips every day from his house to the clinic.
Another guy who had it for 3 years had to move from an island where he lived to somewhere near the clinic so he can get proper treatment. It seemed that everyone had been through so much and although they were grateful to have found effective treatment, they were still going through some hardships. As I mentioned earlier in the diary, the treatment is not an easy process for the patient; it takes faith, effort, time and resilience – if any of those lack, it seems to take longer. This made me very grateful of my situation actually – to have found the clinic quite early on, support from my family and the time availability.
Another interesting fact that I noticed was that each and every patient (including me) go through the same pattern – firstly, they think that their condition is worse than everybody else’s (guess this links to negative thinking); secondly, after some time through the treatment process all sorts of thoughts go through their mind thinking theirs won’t be treated because it is unique and different to everybody else’s (this is due to anxiety and negative thinking) and thirdly, they all aim for 100% recovery quickly.
Yes, I also want 100% recovery but it seems that everyone is so overly focused on their ideal picture of the normal life that they lose patience over the treatment progress and start becoming frustrated (then being stressed as a result). Again I am grateful that I don’t have a family to look after or in financial stretch but I can imagine for some people, especially in South Korea where the welfare system is not so great, they would be under very stressful situations. But I realized that the answer to quicker recovery is to be satisfied with the improvement that has already been achieved – at the moment I feel I am 90% free from the symptoms but rather than trying to force myself for full recovery within a month (when I’ll be going back to the UK), I have decided that I can live with 10% of the symptoms for the rest of my life; it’s definitely better than nothing. This way, I will feel less anxious and stressed – I hope my theory works, then I can tell other patients about this approach too…