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…
My stomach problems have been on and off for the past few weeks and now I’m starting to realize that it is part of deflection symptoms. I am experiencing some good improvements though; concentration has definitely improved and finding it easier and easier to sit down for longer, before sitting down for anything longer than 10 minutes was like torture. I also feel less anxious about not having the TMJ balancing appliance on – it doesn’t mean that muscles don’t move at all, however, I feel that as concentration shifts away from the muscle spasm the less frequent it gets. I realize that the muscle spasm has stopped (although not sure when) after focusing on something else for a while.
Also, another good news is that my teeth have moved significantly and my bite is almost normal – my front upper teeth used to cover significant part of my lower teeth (Dr Lee referred to this as Class 2 malocclusion, overbite) but OBA has changed the bite. Now I have been told to switch to TBA now that the upper teeth and lower teeth meet where they should. I really hope that this means it’s not too long to go.
The treatment is going quite well. Although the progress is not as swift as hoped I am slowly regaining some control over my muscles and learning to control my moods and anxiety better as well, all without medication! With that said, I have been a little lax on my food and exercise regime, being occupied with things that I normally do. I have been out in the city a couple of times to see my friends and catching with some overdue work that had stacked up since I have fallen ill. It does feel good to finally have some control over my life and although it’s not perfect and sometimes it’s frustrating I am constantly trying to remind myself what I was like when I first came here. I am extremely grateful and whenever I am reminded I feel at peace.
As regards to my diet, it has been awful the past couple of weeks… I have never craved naughty food so badly in my life and cannot seem to handle it at all. I have had cakes, pastry, ice cream, fried chicken, beer and the list goes on. And it serves me right for having the most hideous abdominal pain today. It felt similar to food poisoning and it came out of nowhere when I was receiving treatments during the afternoon. Fortunately, Dr Lee gave me some sachets of dried herbal medicine for the stomach pain and told me to take it with warm water. He said most of his patients go through similar things so he has those sachets ready. So I took one (didn’t taste nice..) then I went to bed with a hot water bottle. Together with pain, I was also getting some flu like symptoms; I had the chills, dizziness and nausea. I had food poisoning before (really bad ones) and I was quite worried that it might go on for a while; it certainly is not a pleasant thing. Surprisingly, I just woke up after a 2 hour nap and I feel completely fine. Don’t think it was food poisoning, maybe it was a little telling off of my bad diet…
For the past week, I have managed to stick to a strict routine and diet, doing exercises (even started jogging!), stretching and meditating. It has been just over a month since I started the treatment and I feel normal most of the time. Dr Lee always asks me how much progress I think has been made and this week, I feel I am around 80% back to normal. I still do have odd moments when I suddenly become conscious about having muscle spasm and get quite anxious. The sensation is still there almost constantly but I think I’m learning to ignore it and not think of it as a big deal. Pain is at least 90% gone which is probably why it has been much easier to focus on the treatment and getting better rather than allowing all sorts of thoughts go through my head like I did for the first 3 weeks.
However, I have had itchy body for the past few days and quite a sensitive tingling sensation on the face, as if I am being tapped by a bunch of needles delicately, if that makes any sense. It’s not very pleasant and I’m hoping it will disappear soon.
Unfortunately, I think I’m still quite dependent on the mouth piece, worrying what will happen if I don’t have it on; a bit like the training wheels before you learn to ride a bicycle. I never got to take off the training wheels when I was younger and still can’t ride a bike… Anyway, I’m trying to come off the mouth piece slightly so I have had it out for a few hours today which has not been easy to be honest. Hopefully, I can learn to carry on with life without it soon and maybe learn to ride a bike too.
Over the past few days, I have concentrated on meditating and working on exercises that improve balance. A new thing that I am focusing on is chewing on both sides. I have a habit of chewing on my right side since I was young which got even worse after having braces because my orthodontist made me wear an elastic band only on my left side for over a year which made it very difficult for me to chew on that side. Looking back, the most logical explanation of my unendurable TMD is probably due to the fact that my orthodontist did not properly consider the position of my TMJ and his only goal was to make my teeth align. After 3 years of agony, I was finally free from the train track but my face eventually became more and more asymmetrical to the point where I became very self-conscious. Then, when I started work, I did not even have the mental strength to reflect on my looks because of the constant pain and depression that I had to cope with. It makes me quite emotional and perhaps angry when I think about my wasted youth, something that was completely out of my control but what can I do? At least I know what it is now and being caught up by what has already happened will not make anything better.
Anyway, I was aware of my habit of chewing on one side but I did not think much of it until now. However, I was told that chewing on one side does affect the balance of TMJ so I am making a conscious effort to chew on both sides – I can certainly feel my jaw muscles on the left side are much weaker. Something else I am trying to improve on is having equal muscle strength left and right side of my arms and hands. I am right handed and I do everything on my right hand. When I clench the fists I can really feel the difference between strength I have on my left and right side – so I have decided to do a few simple exercises and activities that improve the use of left hand, such as wrist exercises and practicing writing with my left hand. Hopefully I can become ambidextrous; this pushes me to work even harder!
Yesterday was quite strange. My body must have gone through a bit of change and my mood was uncontrollable for a good 2 hours. For example, I really craved some pastry with chocolate inside so I went to the bakery but by the time I reached the shop pastry became the last thing I wanted. So then, I walked round for a bit and came across a restaurant serving noodles which I suddenly fancied having. By the time the food came out I didn’t feel like eating at all; I ended up not even touching the noodles (I loved the food from this restaurant before so it certainly was not the food). I was so confused and could not explain why I was so temperamental. It carried on when I came back to the flat and every 5 minutes I would switch from watching TV to listening to music to going on my laptop and so on. After a while, I got so annoyed that I just went to bed. I’m so thankful it had stopped after I took a nap otherwise I would have literally gone crazy.
Then today, I made some very good progress which has made me feel very proud of myself (doesn’t happen often). I finally managed to have a CBA fitted without looking at the mirror. Dr Lee would instruct me to shift my jaw to the right but for some reason my jaw always moved to the left. Like I mentioned before, my body was doing exactly the opposite of what my brain was instructing to do. When I realize that my jaw is tilting to the left when it should be moving to the right I start feeling nervous and completely lose control over my muscles causing my jaw to tremble. So until today, I had to hold a mirror in front of me and keep a watch on my unstable jaw whilst having a CBA fitted. I hope today’s progress is a sign of significant improvement and hopefully I can pull this off again tomorrow.
Sorry for the delay in uploading posts! I can only blame my laziness which I am ashamed of. But I promise I will finish uploading soon!
I realised something very interesting on Friday (25th October). I came back to the flat in the morning after having 2 sets of treatments and lied down to rest. Whilst I was lying down I noticed something quite peculiar – that my brain and my body were not in harmony at all. In fact, my body was doing exactly the opposite of what my brain was telling it to do because the more I tried to stop the muscle spasms, the worse it got. I knew anxiety and stress made spasms worse but I was not stressed at all (or at least there was nothing that I should be stressed about). It was very strange; the more I tried to focus on controlling the muscle, the less control I gained. Dr Lee had recommended trying meditation but I never tried it because I simply did not believe it would be useful. I realised then that subconsciously I was stressing myself out unnecessarily which of course did not help with muscle spasm. So I decided to try meditating, taking deep breaths and visualising my body and brain working in unity (I know this sounds weird but I could not think of any other way of meditating). In all honesty, it did not help much at first. I don’t think I noticed much difference in muscle spasm but it did help me to feel more relaxed and peaceful.
On Saturday, instead of going to the clinic, I went to see one of my friends who lives in the city. I thought it might do me good if I kept my mind off treatments for the weekend. For the first time since I started the treatment I travelled for longer than an hour on the tube. It was very tiring even though I only got to see her for a few hours; by the time I got back I was ready to go to bed. Also, it was the first time that I took off OBA for longer than 4 hours. I must admit I could not help worrying about my spasm kicking off randomly. Recently, the symptoms did not appear outwards but I wasn’t sure whether it would suddenly appear again if I was out in public for a long period of time. Despite my concern however, spending time with my friend completely took my mind off it and nothing embarrassing happened! It made me a lot more confident and reminded me that I did not have to worry so much. It also reassured me that the treatment was working.
Today, I just had the day to myself – catching up on emails, cleaning the flat and doing a few sets of exercises. I also carried on with meditating and to my surprise it really is making a difference – I actually felt that I could control the muscles better. Something odd that I observed today though – whilst my mind becomes calmer (during meditation), my heart beats faster as if I’m nervous or scared. However, I’m not bothered much by it because I know it is due to lack of control that I have over my body at the moment. All I can do at the moment is to keep telling myself it will get better soon and concentrate on positive things.
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…
I had all the time to myself as the clinic was closed today and I decided to I walk to town after having failed to go shopping on Sunday (I was too lazy). It took half an hour to walk to town shopping mall and I managed to get my haircut which I’m very happy with. Over the past few days I have pushed myself a little and did more exercise than Dr Lee recommended. And I do feel a difference, my body feels less heavy and I can notice my concentration has improved. I also feel less depressed and I can control my moods a lot better.
What I also noticed though is that my face is very itchy and found myself scratching a lot. It felt quite strange and I was eager to find out the reason for it. Wondering if I can find it on the handout that the nurse gave me on the first day I decided to read it properly (at first I didn’t read this thoroughly because it is quite long (has 15 pages!) and lack of concentration certainly did not help). In the handout there was a list of possible deflection effects and to my surprise ‘itchiness’ was one of them. In the handout it explained that it is due to toxins, bodily waste and heavy metals being discharged from the body as the systems such as blood circulation and hormonal regulation enhance. During that process, it may temporarily cause rash on the skin, excess eye discharge, acne and itchiness. I felt relieved after finding out and spent the rest of the evening watching TV and doing FCST exercises. Tomorrow I’ll be going to the clinic for treatments but I’m quite nervous about acupuncture because it was painful last time. Hoping it won’t be.
I finally have adjusted my body clock and can sleep. For the past two days I have managed to sleep throughout the night. I slept for 12 hours today and I think I’m catching up on sleep that I haven’t had for 10 days. Unfortunately, I feel more focused I’m still physically tired but I’m hoping that once I start doing more exercises I will have more strength.
Today is a busy day at the clinic as it is a Saturday and all the patients who have a full time job tend to come on Saturdays to receive at least two treatments. It is usually the busiest in the morning so I went in the afternoon instead. It was the first time ever for me to manage a CBA fitting without having deflections within 2 minutes. I managed to wear the device for upto 10 minutes today and I think this is a good sign. However, for some reason when I had acupuncture, my back was in severe pain and it was almost impossible to relax throughout the 10 minutes. I nearly had to ask the nurse to take the needles out. I really hope it doesn’t hurt next time.
On a positive note, I think I’m ready to go shopping tomorrow – it is getting quite chilly here and I need some winter clothes. I saw on the website that the shopping mall in town has hairdressers so I might also get my hair cut!
I finally managed to get some sleep! For 7 hours I slept during the night but for strange reason I felt more worn out and found myself yawning every few minutes. So I went to the clinic first thing in the morning instead of doing exercise beforehand. Once again, my jaw would not stop trembling while I was having CBA fitted so it was really difficult. I had deflections about 3 times today; it really does not seem good. I am wondering whether the treatment is actually effective? No one else in the clinic seem to have trembling jaw when they are having the treatment while I can’t even bite properly without a mirror. It is strange though, whilst these thoughts are going through my head I am a lot calmer and less irritated… I often had uncontrollable heart thumps throughout the day but it seems less frequent. I hope this is a good sign.
I could only manage 30 minutes of walking today. I think I’m getting more comfortable though with walking outside with OBA on. I don’t really care if people look at me strangely; they have no idea what it is like to have Dystonia and if having a mouthpiece will make things better I could not care less if I look like a gorilla.