Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

This morning  pain has slowly been spreading down from my TMJ area into my jaw. I had done my best to ignore the pain, distracting myself with getting things ready for tomorrows hospital appointment (a non dystonia related one). However the lack of attention I was paying, seems to have seriously offended Benedict. To punish me, he has chosen the most painful part of me and decided to twist and pull it in as many ways as he can possibly find.

The right side of my face/lips has been pulled diagonally upwards and outwards. Consequently my right eye has been forced shut and it look like I am trying to bear half of my teeth. I must admit, if I was trying to scare someone away by bearing my teeth this spasm would do a very good job. The left half of my face/lips has been pulled diagonally downwards, and the whole of my jaw has been shoved to the left as well. I feel like my face is going to rip in two and my jaw is going to dislocate!! It is disappointing that despite having Botox not that long ago, Benedict is already able to manipulate my jaw. I have at least 4 weeks to go, if not more, before I can have any-more Botox injected.

Having Dystonia in any part of you body is a horrific thing. However now, in this moment of time, I would rather have my hand or my foot go into spasm. Whilst they are still ridiculously painful, I find them a hell of a lot easier to deal with. With the way Benedict seems to be playing with me today, I am sure that he will find some twisted way to add my wish to today’s neurological games.

I am refusing to let this spasm get the best of me though! I am going to enjoy today’s rugby match – Come on Scotland – I am going to have a nice glass of wine or Disaronno, even if I have to drink it through a straw, and I am going to relax. I am hoping that my pain medications kick in soon! Before I do anything else today I am going to meditate, as I often find this to be a very helpful way to help keep myself calm and to put off any unwelcome seizure.




Comments on: "Benedict, Dystonia, Rugby & Wine" (2)

  1. Linda Kaye Schnackenberg said:

    This is first time I have read one of your blogs. You certainly have a lot to contend with. I want to say I realize you are dealing w/diff. issues. I admire your doing a blog. We can vary a lot w/one issue (cervical dystonia) for me, but along w/ our differences we share a lot in common: pain, disruption in our lives often, embarrassment for many, etc. But we have in common among us what often isn’t really known & we react differently or alike in many ways. You are a young woman in the prime of your life,but I recognize you are fighting. We cannot give in though often we feel we would like to. I am much better so not coming from same place as many. But most of us understand enough to be able to know how bad things can be. I wanted compliment you for your fight and not letting your issues take over your life. I have called mine “that imp in my head that is dictating t my brain the things that went on at my worst & still today I call it an imp. Though stronger word could be used. Keep a positive attitude, do what you can to cope, but never give up.. I wish you the best as you must continue to cope & pray better things will be in your future. Always remember others are thinking/praying for you.

  2. Thank you for your lovely message! I wont ever stop fighting Benedict. I love that you have named yours imp! I wish you the best xxx

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