Treatment & Exhaustion

I now had a diagnosis plus treatment. Wonderful, I could speak at last. I still contemplated hiding it from people. At the back of my mind I always went back to the same feeling of shame. However, once I told one person I realised how much better things felt, and so I told all those on a need to know basis. It was liberating, but part of me knew I was explaining myself, and in some way apologising for being different. I was still conscious but much happier.

The next 2 months were great. My voice was back although not the same as it was pre SD. I imagine it’s a bit like having a step parent, they are not really part of you but you learn to accept it. So now I had a step voice. I sort of accepted it. Then the bomb hit, it started catching again, I was straining to speak. Oh no, my elation went to despair overnight. As people knew about my diagnosis they were now able to tune in and pick up when my voice failed me.

It was time to see my doctor again. All will be well I can get a top up and carry on. Off I went back to see my doctor and updated her on my progress. I shall never forget the response; it went something like this:

‘I can’t inject you today as there has to be at least 10 weeks between injections  due to the risk of becoming immune’

My head began to spin. I thought ‘you’ve got to be kidding I can’t go on like this’. I must have looked disappointed, my doctor reassured me and advised that I find other coping mechanisms to help my SD. I told her I was feeling down about things. I suppose I expected magic, and now I was faced with the reality that there was no quick fix. So, my doctor talked to me a little more and with consent decided to increase my medication to control my anxiety. I watched her write the prescription, increasing my mental tablets. I studied her and thought ‘I wonder what her life is like’ with her flawless skin, thick luxurious hair, soft voice, and of course that ring. It was a sunny day and the light was streaming in, so the emerald and diamond ring shone and sparkled like little rays of hope. I was dazzled.

Let’s fast forward a month. Injection number two.

By this time my voice was a lot worse. There were two medical students in the consult who looked about twelve. I was slightly amused by their faces when I spoke, but very happy they knew what SD was. They watched as I was injected. This time it did hurt. It felt different; I was a bit scared but tried not to show it. My dose had been increased. Great now things will be different.

I need to tell you I am a nightmare, as in medical nightmare. My sister is a doctor and has told me she would hate to treat me for anything. Charming. I won’t go into details, but let’s just say if there are complications or side effects, I will have them. I’m unique remember.

Everyone’s experience with SD is different and so are treatment side effects. For me, over the next few weeks I experienced the most dreadful fatigue. By lunch time all I wanted to do was sleep. On my way home from work I would think of excuses not to go to bed at 7pm. I had been informed my voice could become breathy, but good god it sounded nothing like me. Using visualisation; it felt like there was a hole in my neck, no protection. I aspirated when I drank. I had been warned, however, I’d forget and glug down my drink which was followed by a coughing fit that sounded weak and raspy. People started to feel sorry for me. I didn’t like that. My voice was very quiet, so quiet; I couldn’t order a cup of coffee at a local bistro. The man serving me just couldn’t hear me. I was frustrated, so I walked out.

Soon after, I received a card from the Dystonia Society, and this is what it said:

I have laryngeal dystonia, a neurological movement disorder which causes involuntary spasms of my vocal cords so I find it difficult to speak. Sometimes I can’t speak at all

I didn’t know how to feel. Am I disabled? If so where’s my blue badge for the car? It’s such a pain parking, so it would be handy when I’m out shopping looking for parking spaces. Oh I see, I don’t have all the same rights. My disability is invisible.

I felt ashamed again. I was never going to use the card. However, one sad day I had to. I just could not speak loud enough. At least I have done it now, no need to be ashamed; if I’m struggling I have an explanation in writing.

Now, one thing I did notice after my botox, my hearing seemed to go up several decibels. Everything was louder; I couldn’t bear the television, people speaking, crowds, coffee shops etc. The sounds almost knocked me off my feet. It felt I had a foghorn in my ear. I wanted people to stop talking. I felt like a spectator in my own life. I had brain fog. So what did I do? I isolated myself again. This lasted a few weeks. I became anti-social as I could not compete with background noise, and so I cancelled dinner plans, drinks, and coffee dates. It was then I realised I would always be the voice athlete in some form or other; albeit not Olympic standard, but certainly beginner to intermediate level. My voice did eventually come back and things were fine, but I grieved for my original voice. Should my voice have a funeral? Well it needed a memorial at least. I needed to pay tribute in some small way.

Dear Voice,

Thank you for being part of my life for thirty-six years. You have been my long and trusted friend. You were my confidant and never once repeated anything I didn’t want anyone to know. You were with me every day through thick and thin. I took you for granted, but now you are gone I realise how much you meant to me. Some would say they heard too much of you, that’s their problem.

I understand when you were born you cried for several hours; you had things to say dear voice. I have so much respect for the courage you showed when you became sick, you never gave up, you were a warrior. However, you just couldn’t do it any longer so you left me. I miss you so much. I am grateful to have had you in my life. However, do you have any idea the hell you put me through all those years? You selfish, attention seeking, delluded idiot. Sorry, dear voice, I am grieving, and you know what they say, people can have angry phases.

I am not sure where you are now. You’re in my thoughts daily dear voice, even if I want to damn well think about you or not. Apologies again, I’m just so grief stricken.

So dear voice, rest in peace and sing with the angels until we meet again.

Love Me

 

So that’s my eulogy. I hope you liked it, it was painful to write.

What’s left to talk about?

Plenty if you’re interested.

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11 thoughts on “Treatment & Exhaustion

  1. Hi Fellow SD
    I am on your journey and I have had 3 shots. I am a bit of a closet SD person. I only told two people so far. I had a great result my last shot. I am talking so much more to anybody who will listen to me. I had been feeling like I was not participating like I had been before SD but now I am so much more comfortable speaking. I hope it lasts forever but I know that it probably will not. I hope you find some relief. I don’t think my hearing changed from botox. I have a lot of energy usually. I hope your voice gets better.

    1. Hello, I think my hearing is affected as the botox makes me so tired.
      I hope you continue to have good results and lots of energy !

  2. There is a way out of this nightmare, folks. It’s called SLAD/R surgery. Not perfect, not free, not easy to access but certainly offering great relief to many with ADSD. More information on FB group “Surgical Treatment Adductor Spasmodic Dysphonia”. Please check it out.

        1. Yes, I am aware. I’ve spoken to someone who has been through it.
          I am newly diagnosed, so still getting my head around things. I would not rule out anything.

  3. Interesting blog. Thank you but please do your homework and update your information to include surgical treatment option. I wish you the best.

    1. Hi Mary, Yes, I know about the surgery but, as I am telling my story in real time as it happened to me, I won’t be talking about the surgery yet. However, that is certainly going to be in my blog further on down the line.

  4. I have read a few just right stuff here. Definitely price bookmarking for revisiting. I surprise how much effort you put to make this type of fantastic informative website.

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