Category Archives: Mental Health

Stamina, or lack thereof

Mornings are when I function the best. I work better. I am more likely to leave the house. I am usually in a good mood.

Things have a tendency to change after lunch. At first I thought it was because of the heavy meals I was eating, but then I stopped eating heavy meals and was still pooped after lunch.

Then comes the question: To nap or not to nap? Usually I nap, but sometimes I don’t. Either way, by four o’clock I am spent for the day. Ready to take some prescription to head off the inevitable irritability. My brain is tired and my body doesn’t want to move.

And then everyone comes home.

That’s no way to spend a life, I think. I am spent before I get to be with the people I want most to be with.

And what have I left them with? No dinner. No clean house. No accomplishments to show them.

Only a tired, cranky shell who wants as little stimulation as she can get.

That’s no way to be a mom or a wife.

If only they could go to work and school while I’m sleeping at night, like real world elves.

They could come home and find me at my best, and, because they are elves, they would never be tired or need to sleep.

And we could frolic the way we used to.

It will be just like that split second years ago.

The joyous, resonant moment that I still base my “normal” on.

 

 

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The slow fade

It doesn’t feel slow to me.

It feels like I’m being pulled in by the undertow over and over.

Miles out.

Into a dry ocean.

My thoughts are duller and they no longer fall over each other. There is starting to be space between them.

The level of oblivion I have towards daily life is something I have to try to sneak outside myself to measure. I have stopped cooking. I seldom use the car. I have stopped engaging with others unless I am directed to or am scheduled to. I know that there’s a lot of home improvement that I want to happen, but either it can’t happen soon enough or I don’t have faith it will happen at all.

The emotions I feel the most are impatience with myself for not being able to do anything right and regret when I hurt people.

The collection of memories and facts I’ve forgotten has outgrown its habitat. It needs an island of its own.

I sound like I’m drunk and people on the phone who don’t know me are put off by it.

And my brain is too thick with obstacles, too sick with HD, to be written about with any great insight by its owner.

What other people see is a slow fade.

But I can’t describe how fast I am becoming an empty vessel.

A remnant of myself, clinging to stay, bobs up every now and then.

Like a cork in a turbulent, empty ocean.

 

Reconciling a life and a disease

The days are tumbling on top of each other following the death of my mother who had HD. I never was able to visit her as much as she wanted me to. Even when I visited her every day she would barely let me out the door. Even when she was yelling at me, she didn’t want me to go. She wanted the connection. I moved away, my own HD progressed and I became less capable of making the 90 minute drive.

Then she started calling me, literally hundreds of times a day. She would sit for hours and hit the redial button and when I would answer, she would ask me when I was coming to visit. When my support system got wind of this, they insisted that I block her calls so I could try to get something done during the day and not have my heart broken every time I heard the despair in her voice and felt the specter of what could befall me. I told her I was having trouble with my phone. She sent me a few letters begging me to help her, but I confirmed that she was safe and being well taken care of. The letters stopped and I visited as often as I could.

At a certain point, long before her final days, she had decided that she wanted to consume me. I don’t know if it was the same dynamic as the time I was drowning and as people kept trying to save me, I climbed up their bodies, plunging them further down into the water. But for years I have felt her sickness manifested in a need for something from me that I could neither identify or satisfy.

Until she died, I carried an enormous weight of guilt because I thought that I wasn’t there enough for her. That I couldn’t see her or help her. That I had failed the one who had failed me the most, and by doing so, I had blown both of our chances for redemption.

Now even though she is gone, I still have a sense of her being. The memory of her unforgettable presence lingers and, more and more, I remember snapshots in my life from the times long ago when she showed me love.

But the oppressive guilt has lifted. I am realizing that I did the best I could based on my own condition, and that is more satisfying knowing that she is released from her diseased body and mind and no longer desperate.

Now it is my turn to live out my days and, while I have plans, I have adjustments to make to improve my health. I am formulating safeguards to protect my kids from what I went through. I am already having conversations with them about blocking me if I perseverate on the phone calls. And I am conveying my unconditional love to them the best that I can.

But I mete it out in small doses, because they are teenagers and I do not want to freak them out.

How Halloween Charms the Grizzly Bear out of H.D.

… Step, stagger, speak, slur. Fog, fugue, forget, fret.

Step, stagger, speak, slur. Fog, fugue, forget, fret.

Step, stagger, speak, slur. Fog, fugue, forget, fret.

But suddenly:

Bell’s Palsy, ear PAIN!

Bell’s Palsy, ear PAIN, trigeminal NEURALGIA!

(Pain meds.)

Ear pain, trigeminal neuralgia, pain meds.

Ear pain.

And as a result:

Complain, expect, insist, subsist.

Lazy, crazy, hazy, home.

Bemoan, deride inside.

But tonight:

1000 zombie children come.

Swarming, wanting, fearing, thanking.

Adorable, inescapable.

Temporary cure for all the above.

 

 

Me to HD: It’s not you, it’s me

I person I trust has told me that I have been manifesting depression and anxiety, not as part of my symptoms, but because of them.

It’s hard to wrap my mind around the fact that a departure from depression and anxiety will reveal that I am functioning better than I thought.

And that my brain is not melting.

I have to cut myself some slack and realize that living at, for example, 75% of my functioning capacity with a good attitude will yield a better me than freaking out over, say, 95%.

During the past week I have learned a little bit about what it takes to get me to do what it takes.

I’ve learned that I need to play a bigger role in my expectations for myself. I have made a schedule for myself consisting of the things I want to do every day that would make me happy.

I was as surprised as any one that I conjured up such a list. It’s a list of things that a happy person living a good, balanced life would do every day.

It is not my visual reminder.

It is not my promise to others.

It is not my tool for self flagellation.

It is something to work toward. I know that there are medicines that must be changed because I am still having difficulty, but I have to make the day to day success my responsibility.

Who else is going to be responsible for it?

If you didn’t listen to WeHaveAVoice’s  “All About CAG” radio show, I recommend it. It’s one of those recordings that I will be able to get a lot out of for years to come and I plan to listen to it under a variety of circumstances.

But what Dr. Lange said that spoke to me the most today was that the best thing I can do for myself, as a person with a CAG of 40,  is to lead a happy lifestyle and aspire to go to bed each night thinking that the preceding day was pretty good.

I am going to try this approach and while letting the HD do whatever it does.

Sort of like we’re taking a break.

 

 

What it feels like when things go wrong

I have been having severe psychiatric symptoms and have been asked to describe them, and am finding it to be difficult.

Yesterday I told my husband that it felt like the emotional equivalent in intensity and horror to the pain I would feel if one of my eyelids had been pulled around my head, down to my neck, leaving behind my skinned, painful head, unable to see anything.

I know that is not physically happening to me, but it’s the emotions and the pain that I suspect I would feel if that happened to me that I am trying to encircle with words.

It’s really important that I describe it in a way that make sense so the doctors will know what kind of drugs to give me. I guess whether I need to keep taking anti-psychotics or switch to mood stabilizers.

There are at least two parts of this emotional crisis:

One is this emotional pain described above. Another way to describe it would be to compare it to how I might emotionally feel if my fingernails were being pulled out slowly, one-by-one, only worse.

So this is constantly going on, and it manifests as my own screams and shrieks filling my head. I want to go through the house screaming and shrieking out loud, but I hide myself away from everyone else and it feels like my head is going to explode with the constant suppression of the screams of emotional pain.

The other part of this crisis is like a cloudy, smoky feeling of doom that washes in and swirls about while the first part is going on. It does not use words, but it communicates to me that I cannot handle much more of the first part, but warns that it may never stop. In fact, it could get worse and I could spend my life trapped in the first part with the second part swirling around. And that adds more panic and hopelessness.

Since I have been in crisis, these two parts have always been actively going on but I notice that it is quieter and easier to tolerate in the morning. It gets louder and more painful and harder to bear throughout the day until the evening when I run up to my bedroom, strap on the bipap (sleep apnea) machine and take deep, deliberate breaths until I fall asleep.

I hope that this description, along with a doctor’s visit, will result in some new meds and an end to this crisis.

 

 

Flipping the HD switch

Yesterday started out like any other day, with the potential of being a day filled with hope, productivity and love. But for me, with HD, all it takes is for something to flip a switch, and everything is overtaken by the worst feelings of despair and foreboding.

The smallest negative thought yesterday morning flipped my switch, stole my day of promise, and rammed my will into what felt like a barbed, cramped metal container. I spent all day trying to break out, to outsmart, to out-wait the sinister captor.

No sleep came to provide respite. No arms were available with the exclusive purpose of holding me. The only voice that I could hear was my own, and the best advice I could give myself was to wait it out.

It would relent at some point if I just waited it out.

Towards the end of the seemingly endless day, I sat on the same couch where the switch had flipped twelve hours before.

This time I was medicated for the evening and was prepared to distract myself with television images until I was sedated enough to go to sleep. An end-of-a-bad day  game that had worked plenty of times before,  but failed this time.

Instead, I acted impulsively and inappropriately then lashed out at my family. I stomped upstairs and flung myself into bed. My husband was at my side shortly, and I acted out some more.

Then I felt so ashamed about everything. I had spent all day trying to fight my way out of the metal container, and was only then hanging my head out to draw in desperate breaths of the reality I had so longed for.

But in my quest for it, I had tainted it.

Today I am tired.

My brain is like a floor filled with mousetraps and I’m afraid to take a step.

Not my day to die

Yesterday I was thinking, as I often do, about how much better it would be for people who love me if I wasn’t around.

Sometimes just trying to function day to day with HD, I screw up things around me so badly that the only way I can see to make the pain and shame of it stop is to end my life.

But then my son texted me.

A troubled friend of his (who I will call Jake) had spent some time in a psychiatric hospital. Four days after being released, Jake was able to buy a shotgun. (Welcome to the U.S.) After an agonizing, nightlong search, Jake was found in a car– where he had killed himself.

Suddenly everything became real.

I set aside mentally minimizing  the impact my suicide would have on my children.

Thoughts of how Jake’s family and friends will be permanently scarred by his death edged out the rationale behind my plan.

I know that, despite the many roadblocks in his life,  Jake had a life ahead of him that had worth and now that is gone forever. So now I grieve for Jake who, through his own pain, may have bought me some time.

Because, even possessed by a monster, I am forced to admit that I am still worth something to someone.

 

Greetings from oblivion

Bad people are doing mean things in the world.

I sense it only as a faint tugging at my heart.

A feeling of homesickness for a place that never existed.

I hurt like I have been pulled by an angry ocean wave.

I am dazed as if I’m riding a two-day hangover.

I want to see my friends.

I can’t talk to any of them.

I want to be alone.

There is none of me left.

So, even alone, I’m left with no one.

If a fleck of me flickers by, I’ll grab it.

And try to mold it into my game face before it dissipates.

Until then I will pile sleep upon itself.

Folding away the danger of being understood.

The sting

It starts out innocently enough.

I am usually congratulating myself for following a routine.

Feeling success in my own complacence.

Building a wall that separates who I think I am from the damage that I cause.

Then I do the exact thing that causes disaster, as if I had been planning it for months.

I do something I had promised mere hours ago to never do again.

I am listening.

I am really trying to listen.

I really thought I heard it.

But in truth, it takes an ice pick to chip away my wall, so I can hear and register what is being said to me.

 

Then I am exposed and the truth stings like the hard flick of a wet towel on a baby’s cheek:

The person I love the most is choosing to have his life destroyed by me. That is not only his conscious choice for the future, but that is what I am doing to him now.

I can’t stand to be inside myself and I tell him to leave me, to let the world scoop me up and put me elsewhere. For him to start over and be happy.

But (thank God) he won’t. He stays and I feel guilty that I am happy that he chooses to continue to suffer. I wish that HD could impact only me and realize that most of the time I am under the misapprehension that it does. Only occasionally does my wall of denial crack sufficiently to let in the truth. The disease will suck me back to oblivion before too long. The lack of awareness that is part of HD will return and I won’t realize what I am doing to the love of my life. To the most important relationship I’ve ever had. And it won’t sting anymore because I won’t remember.

But I’ll keep hurting him, just the same.