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

Week 7 – Agony

imagesI’m currently on week seven of my Botox cycle. My injections are not being administered for another week due to a mistake (lets presume it’s a mistake and not my new neurologist being devious, because being frank I would not put it past him). I should be in bed asleep right now. Normally I would currently either be asleep or out with friends. Instead I am medicated to the extreme, I have lavender wheat bags heated up wrapped round my neck, and resting along my jaw and heat packs stuck along my back. To say I’m in agony would be an understatement.

I have resorted to taking Oramorph, a medication I try my best to avoid, however I would much rather give in and take it than have a seizure (click here to read what a seizure is like), and right now I’m concerned that with the amount of pain I am in that I will have one. My brain is not staying connected to my mouth tonight, functional paralysis is something I have suffered from for a few years now, but it has never ceased to terrify me. I understand that it is simply my brain being unable to cope with the amount of pain I am in, so it disconnects from the affected part but it is an unnatural experience that no matter how much I attempt to laugh off unnerves me.

Tonight my jaw is particularly bad, and is frequently being functionally paralysed leaving me unable to verbally communicate. It may seem like a small thing to some, but when you are trying to desperately to get any part of your mouth; whether that be your lips, tongue, just anything, to move and they won’t, apart from when they spasm, its horrendous.  I cannot yell for help if I need it, I cannot cry in frustration or call someone to talk too to distract myself. I am stuck with my jaw spasming, distorting itself in ways that should not be possible, threatening to dislocate, and all I can do is cry silent tears, pray that I do not have a seizure and use this blog as an outlet for my pent-up frustration with this crushing condition.

I have a 9am lecture tomorrow morning. Which I am determined to attend, most likely in a wheelchair for my own safety, one of my close friends has agreed to take me there which has helped put my mind at rest. For now it is back to attempt sleep and hope that my little Dystonia Alien allows me some rest

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Comments on: "Week 7 – Agony" (5)

  1. Oh dear, I hope you do get some sleep! Well done for coping; I hope that you will get on top of things, Be very careful with Oramorph: it is addictive (which is to say that your body will adjust to counteract its effects so that you may have to take bigger doses – and then your body will get used to having it around and you will need it just to keep function), but it is very valuable when used judiciously.

  2. samcharvey said:

    I liked this blog because of how well you have explained some of your worst symptoms Rebecca – but I am not liking how much you are suffering. Be gentle with yourself. Love you xx

  3. Although my jaw locks open, I understand the inability to communicate, eat, take medications and lose sleep over the pain. Of all the pain a paralyzed and spasming jaw is pure agony. Glad I saw this, I wanted to shout “SOMEONE GETS IT”, not glad you’re going through it. Hope you’re feeling better these days!

  4. John Hippensteel said:

    Working with Dystonia requires a trusting relationship/partnership investment of you and your Neurologist. If you have any doubts about his motivation then you need a new Neurologist. It does not mean he is a bad doctor in anyway it is just that you and him/her were unable to make that trusting relationship with each other and you need that.

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