Yesterday I was agitated, reactive and wanted to act impulsively. In a couple of instances, I did act impulsively and inappropriately. I was either in other people’s business or I wanted to jump into other people’s business in both positive and negative ways. The intensity to act was strong all day. I am grateful that I did not cause more damage.
I could not take a nap to re-set myself, and when the real bedtime came around, I just lay there, twitching and seething all the more because I was twitching. I had to text my husband, who was downstairs watching a movie with our son.
“I need you,” I said.
In a flash he was there. I told him about specific things I had been perseverating about all day. I told him that breathing exercises weren’t calming me down and, in fact, I was only getting more wound up. After exhausting our playbook of ways to calm me, we decided that it was best to give me a pill that would make me sleep.
So we drugged me. Today I don’t feel agitated and impulsive the way I did yesterday, but I’ve been worried. What if it happens again? What if it gets worse? What if it becomes the new norm? We can’t just knock me unconscious whenever things go south. I’ll require professional intervention.
I will probably set up some parameters for my own good, and for the well-being of people I come into contact with. Like before I act on the impulse to say something that I really want to say, I will check it out with Randy first.
But I’m noticing that when I’m agitated, I seek interaction.
I recognize the irony in blogging a post for you to read about my struggle in staying out of your business. But I will still poke my nose in far enough to ask:
Has anyone out there had the same experience?
Huntington's Disease and Me 
I have pushed into a conversation I had no business being in, sometimes to become a part of it, sometimes to argue a point just to get a rise out of someone. I always regret it but sometimes it just happens – and it’s when I’m feeling irritated, depressed or angry. I’m working on it.
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Sounds familiar. Thanks for sharing your experience.
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I confess to being a serial busybody. It sounds as if you only have sporadic fits of it.
In all seriousness, better living through chemicals. Things are out of whack in your brain kiddo. That’s what happens.
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True enough, my friend.
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Hello Sarah,
I took 40 minutes writing you a reply that was instantly recognizing myself and also questioning my fears, the use of medication and the fear of the numbed feeling, just existing being sustained by it, the fear of the future events, the damage caused as you put it, the justification and the whole circle of feelings and thoughts that continue to go around and around in ones head regarding these incidents, I felt relief in being able to share with you the same grief exactly, to an absolute T, the terrible fear of losing ones self and who I once was, especially, and felt I had been able to add a few things regarding my own struggle, especially regarding my doctors here in Wales UK, in what is actually a world class team in UHW, and then accidentally went back a page and lost everything I’d been inspired by you to write.
Do I start again and I have periodically copied this just in case and will probably after sending it, spend the next 20 minutes (to myself in my head) castigating my stupidity and carelessness, justifying my mistake with all sorts and then coming full circle back to the eternal questioning and blame I put on ‘My HD’.
I am 48 and had a positive diagnosis of the HD gene at 40.
My doctors and medics, neurologists, psychologists, professors and specialist HD nurses etc all say my anxieties are normal for anyone concerned with HD, and that I’m not symptomatic.
Sometimes I believe them, I trust them, am relieved, feel blessed, happy, confident, and positively carry on unfaultering, literally or at least I believe that, as I question if that is my delusional HD too…
…and Sometimes I think what the hell do these specialists even know about HD, are they mad, can they not see how am behaving, what I am experiencing, what I do to myself and my family, that I do in fact need to be doped up to eyeballs to prevent this monster as you call it from rearing its ugly evil, sinister head!
What matters is that we are listened to validated, cared for, loved, cherished and remembered for who we once were.
Thank you for your blog brilliant as it is.
Regards Dawn x
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Dawn, in the US, my doctor says that psychological syptoms often preceed the official diagnosis, which is usually made here when the movement starts. As a result, I take a lot of antidepressant and antipsychotic drugs and who knows where I would be without them. I can’t imagine facing all this without it. The drugging of me to sleep I see as a separate issue and I envision myself as an elephant who has wandered onto the freeway, shot by a tranquilizing dart so I can be moved to safety. Thank you for your post. Thank you for sharing the commonalities and differences in our experiences. While I hate that you’re going through it, it’s comforting to know that someone gets it. That someone really relates and I am not alone. And neither are you. Take care Dawn and best wishes. Sarah
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Thank you for replying Sarah X it does mean so much to know your not alone and your right that understanding of how it affects us is almost impossible to replica in words or descriptions to those that don’t get it. I have just downloaded your book volume 1 and I have ordered ‘life interrupted’ so I am looking forward to reading both.
My doctors who are exceptional probably don’t really know the struggles I have my normal GP has prescribed me Amatryptalin 75-150mg for me to self medicate which is an anti depressant and it makes me drowsy after about 30 minutes , so I take them at night and it stops me lying there for what seems like hours.
I do find when I wake up i feel like ive lost the whole night in a millisecond.
Again something you said made me relate to.
My problem is I look for things with my partner of 18 years to blame him for, I’ve accused him of affairs, due to colleagues text messages, built a whole story up in my head based on his failings and weaknesses, by the end of it I hate him for what he has supposedly done with such venom, I don’t recognize myself anymore, and I question everything he does, I really have no way of knowing if I’m justified, or if it’s my severe insecurity, or if it is the psychosis of the illness.
When I’m not being this distrusting, accusational, disparaging crazed woman, life can be great, until the next thing that sets me off.
I think we both justify my behaviour with the understandable insecurities a person has with something like HD. Can I ask what medication you take
and for what, I think my ‘behaviour’ is getting worse and I fear that I will in fact cause my partner to decide enoughs enough, if I can go to my doctor with something to recommend it would be helpful as they are very much in the dark here. Something else I picked up on is the time of diagnoses of onset, it varies in families and in my own HD family the chorea part of the illness is nt anything like as bad other sufferers, so if my docs are waiting to diagnose in that basis I might actually be incorrectly recorded as a late onset patient. I hope you don’t mind me asking if you want to message me privately my email address dawneharry@gmail.com
Thank you again X
Take care X
Dawn x
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