So what do I mean by triggers?
I have asked so many questions; and now I am asking you. This may mean something different to everyone, but what triggers the brain to become upset, panicked or go into flight or flight?
Answer: Who knows or who cares.
My only concern is what triggers my brain into a heightened state of SD. Selfish I know, but it’s my blog so I can write what I want. I don’t wish to delve into the biochemical make up of the brain, I just want to be simplistic and discuss what and why my brain does what it does.
It has been 10 months since I was diagnosed with SD and I have had 4 injections. Yes, they work and I can have a gab fest during periods of respite however, I still feel my voice tighten at times and then the panic sets in. Why? If I knew that I would be rich and famous and I wouldn’t be writing this blog.
I think I see the best doctor in town, and I am very lucky in that my condition is extremely rare so there are not many doctors who can treat it. My doctor is Ms Lucy Hicklin, prominent Consultant ENT surgeon MBBS, FRCS, FRCS ORL H&N, St. Georges Hospital, London & Parkside Hospital, Wimbledon. As well as being the best ENT doctor who treats SD, I can now reveal she is the owner of the magnificent emerald and diamond ring. Oh that ring. I feel like it’s mine, as I am sure I think about it more than she does.
Back on track-I have discussed with Ms Hicklin why my voice goes in and out despite treatment. It’s all down to triggers really, it’s that simple. A trigger for me could be the tone of someone’s voice or the way someone looks at me. This makes me sound like a paranoid prat, but really I’m not. What I am; is sensitive to my surroundings, and I know when I start to feel anxious my SD creeps in. This is still all very confusing to me as we know the condition is neurological, and yet psychological components trigger it.
Standing up in front of a room full of people, telling people you suffer with SD, treatment wearing off, or worry about the future. Combine all those things together and you have one big trigger. My doctor, (that sounds so American!) Ms Hicklin, has spoken about these things to me on a few occasions and advocates the use of alternative ways of managing anxiety. Mindfulness and CBT are among those, and so is a sense of humour. Ms Hicklin once said to me ‘It’s good to laugh’
Now this may upset some people, but she knows me and understands my way of coping. The word that jumps out at me is ‘understands.’ There are so many doctors that treat and are pleasant but how can they understand? I really believe that Ms Hicklin does. I know this because I see her every 3 months, and I look forward to it because no matter what I ask, she takes the time to answer my questions honestly and with sincerity, and yes, I look forward to it as I get to see my ring.
Back to triggers. Am I really so different from everyone else? Don’t we all feel anxious if we have to speak to a room full of people at work or go for an interview? I bet everyone would say their voice may falter a little. However, mine does more than falter; it tightens up and sounds strained. I keep a trigger diary-yes I know it’s slightly weird-But, it helped me determine what my worst triggers are. The thing I have learned the most is honesty is the best policy. I do not apologise anymore for my SD voice. I simply tell people I have a voice disorder. It’s too bad if they feel uncomfortable with that. When I tell people, I love watching their reaction – it ranges from ‘poor you’ (which I especially hate) to ‘I’ve never heard of it’ (most common). Some people are uncomfortable when I tell them (that’s their problem) and some people say ‘I hope you get better’ (which amuses me).
I have come to understand my triggers are plain old worry about speaking, and people I don’t like make my voice go weird. That means I let them affect me, so then it’s my problem. I am not perfect but I will continue to work on those pesky triggers and how I deal with them. This is not about anyone else, it’s about me. I spent 15 years hiding my speech difficulties and I don’t intend to continue doing so.
I have read, written and spoken about dystonia, dysphonia for months now. It has become part of my life and vocabulary. What is the difference? Dystonia: movement disorder, Dysphonia: difficulty speaking or phonating (phonate) – difficulty with sounds.
I have Adductor Dysphonia-it sounds like a classical musical score. I’m glad I have something that sounds posh and impressive. On top of that I now have oesteophytes. These are little pieces of bone that grow from my spine and push my oesphagous (food pipe). Just to keep my dysphonia company and make everything worse. Reason: I’m old and knackered. Oh the bliss of ageing.
Imagine if I die from all this malarkey – my death certificate will read:
Cause of death: Adductor Spasmodic Dysphonia with complications from oesteophytes
How eloquent and different. Beats the bog standard stuff any day.
Don’t worry folks you can’t die from SD. I’m just being me, and I will never change.
Maybe when I’m dead someone will commission a play or a West End musical. It could be called Adductor Dysphonia, or The SD story, music will be composed by Andrew Lloyd Webber and the Oesteophyte Symphony Orchestra will play.
SD is always on my mind; that could be turned into a song. People will sing it in karaoke bars in tribute to me, just like Elvis. However, I’d much rather be on Broadway and the West End if you wouldn’t mind. So if there are any prominent people reading this; please take note of my final wishes.
Laughter is the best medicine.