Category Archives: caregivers

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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Getting on with life

There has been a nagging feeling of things that need to be done, but exactly what those things are swirl around my mind and it is hard to capture them, so I am left with this constant undertone of confusion.

This morning, I was able to communicate some of them to my husband. In some cases, they are simple things, like “I need legal pads.” But when I have previously thought about buying legal pads that thought was also accompanied by the desire to not go back into Staples, where I have had an HD meltdown. So the legal pad need has been going unfulfilled as I write on the back of every lined piece of paper I find. There are some other things I needed that I could pull out of my head to tell husband.

One item is a small pad of paper and pens so I can write down the other things as they come back around!

I fell out of bed a few nights ago. I was sleeping like a rock and landed like a rock, too. It scared me, but I wasn’t hurt. I have been sleeping with a fortress of pillows around me or on the couch ever since. My husband is going to buy a baby gate to go on the side of the bed. I hope that will keep me from taking flight again. A friend of mine sleeps with his bed on the floor so when he falls off, he won’t have as far to fall. I think that is a pretty good solution, but like having the bed up, just because I am used to it and heaven forbid I try to change anything I am used to because I will stress over that.

I have discovered that being around people who I don’t know well is exhausting and I am very averse to it. Because I have an invisible disease, I wonder if and how many times I have met people. I wonder if I have told them about me, or if they already know. Yesterday, I dropped off some stuff at a neighborhood picnic and the difference in my level of comfort was so dramatic between the people that I knew well and those I knew by sight. It was a stark contrast. I was stressed out being around strangers in a setting where my reactions to their questions might make them uncomfortable.

In general, I am moving forward and am trying to do so positively. I have lost over 40 pounds (I am overweight) and each day I pretty much wake up cheerful. It just gets harder as the day goes on.

Sometimes, if something that is not routine occurs or something suddenly annoys me, I will take an extra mood stabilizer to prevent HD’s irritability from taking control. I had written “my irritability” but decided that I am not going to claim it. It is the disease that has installed the pressure cooker into my emotional center.

There is a woman who I wrote about in a blog about a year ago who introduced herself to me again and again until I finally started remembering her name. Her name is Vana, and she has become a beloved friend. She is headed off in the next few days to spend a year in St. Lucia to pursue some dreams and my happiness for her outweighs any sorrow so far because I am proud of her gumption and courage. I know it will hit me later.

Vana, I wish you the greatest adventure of your life, and thank you for becoming part of my family.

Thank God for the internet, right?

The importance of friends

It cannot be understated.

Yet I have realized that, after two nearly two years, I’ve never written about it.

After my husband, I have best friends-in-the-whole-wide-world.

BFINTWWW  love me as much as I love them.

I can not talk to them for weeks, but always know that they are there for me.

And, individually or collectively, they seem to always be coming up with things for us to do, places to go, bucket list items to cross off, and other ways of filling life with beauty so large that it blots out the bad stuff.

They are the ones who call me after I’ve been in hibernation.

The ones who have such a great capacity to love that they of course have many other friends. But they make me feel special and loved. And not because I have HD. They either knew me before I became aware of the HD and have made the choice to stick around or they have gotten to know the parts of me that peek around the HD and accept the me that I am.

Sometimes I think about the people who have discarded me but I do not miss them the way I used to before I realized that I was only doing the best with what I’ve been dealt.

People have just stopped talking to me and never acknowledged my words again. My usefulness or value to some people has expired. I have been cut loose because I “made the same mistakes over and over without growing from them.” I have been let go because I was not positive enough. I have received bitter diatribes because I no longer properly embody the role that was originally cast for me.  When I look back at my life and my friendships,  I readily admit that I was a pretty shitty excuse for a friend sometimes.

But all I can do is try to do better going forward.

And in the spirit of moving forward, today and every day, I thank the special people who have chosen to love me. The people who make my life whole and worth living.

I am simply blessed.

 

Goodbye, irritation. Hello, rage.

My experience with HD holds that I no longer have irritations, grouchiness or impatience. I go straight to rage. It is always the same flavor. The same intensity. The same heat. No matter what lit the fuse. No matter how insignificant I recognize the slight to be. No matter how wrongly I know I’ve blamed someone. No matter how much I know I don’t have any reason to be angry.

There it is.

It is more common by far in the evenings. In fact, I am vigilant to avoid situations that might trigger slight irritations in other, regular people after 5 p.m. This is when I take my mood stabilizer. The heavy dose. This is when I stay away from people and social media. And when I can’t, I take the three tranquilizer pills that I have historically saved for bedtime. I have been taking them earlier and earlier.

Because something always sets me off.

Notice I am not saying some ONE.

That’s because I know that the rage I am suppressing and channeling and grinding through my teeth has no rightful home with anyone else.

Growing up and too far into adulthood, I was a rage receptacle for my HD-stricken mother.

It’s always been my greatest fear that with the progression of the disease, my anger will hurt people I love. My husband suggests that things might not play out that way. I used to be pretty easy-going.

But that doesn’t explain why I now have to be vigilant every single night.

I have my back against the front door and I’m trying to keep out a terrible villain.

If I strain harder and harder to keep this part of me at bay, some part of me will eventually prolapse and it will burst onto the scene–uninvited and unwanted.

And that will really piss me off.

 

Happy anniversary, Randy!

Dear Randy,

Today marks our 11th anniversary and I could never be happier than I am now.

We just shared the observation that pretty much everything has changed since we’ve been together.  We had a child together, found our dream town and home, and learned that I have Huntington’s disease.

I don’t know how you stuck with me during the years before we knew why I wasn’t doing things that obviously needed to be done. When I was paralyzed by apathy and confusion. But I thank God that you did.

When my genetic test results came back positive for HD, you stuck with me while I grieved much longer than we all thought possible. While I was sucked in by darkness. While I still wasn’t able to do the things that obviously needed to be done. When I was still paralyzed by apathy and confusion, compounded by depression. But I thank God that you did.

You’ve been by my side at every opportunity I’ve taken to help myself. And as a result, I’ve grown in ways I never knew I could. And so has our marriage.

Together we take the good that each day offers. On bad days, we use the tools we’ve been taught to get through them.

I look at the years to come and intend to cheat HD from taking away the happiness we share now. I know that if I fight HD, you’ll be there, fighting with me.

And I thank God that you will.

I love you so,

Sarah

 

 

We and HD: face-to-face with HD peers

Nobody nearby has HD and so there are no HD support groups in my neck of the woods. Luckily, there is a fantastic network of HD support on Facebook. Some of the most important people in my life are people I have never met.

This past weekend, I got the chance to meet a few of them.

At the WeHaveAFace.org’s First Annual Walk for HD and JHD, I was able to get face-to-face with other people who have HD. I also got to meet some Facebook friends in person!

I was nearly overwhelmed at the Orlando airport. I was going down the escalator, when (beside all these men in suits holding dry-erase boards to get the attention of their parties) I saw James Valvano smiling, wearing his WeHaveAFace T-Shirt! We hugged for so long that I could feel people around us staring. Maybe some of them thought that we hadn’t seen each other for a long, long time.

I guess they were right. Never is pretty long.

For several hours after our meeting, I had some cognitive dissonance where James was concerned. I kept checking to verify that James was not a flat picture that spoke in print. He is indeed a real live person who uses words. And he also has HD. I didn’t know what to expect, because James accomplishes so much, but HD affects him too. He has developed ingenious workarounds for the roadblocks HD throws at him. But that is his story to tell. I’ll just finish by saying that the live version of James is very, very cool. And his family captured my heart.

The next day at the walk, I met my Facebook friend Cindy and her family. I don’t remember any of their names, but they were so nice to me and helped me do things that my fine motor skills wouldn’t allow me to do, like tie strings around balloons and tape down tablecloths in the wind. I couldn’t make a decision about what to do about putting the tablecloths on, and suddenly, people were there to help me.

I missed my husband a lot at that moment, because at home he is the one who comes behind me and tucks the sheets in all the way. I was comforted by the notion that these very compassionate people were there because they love other people battling HD.

I talked to other people with HD that day, but I can’t remember any of their names or what we talked about. Such is the nature of my disease.

I do remember that some of their struggles were clearly different than mine. I saw them walking, eschewing wheelchairs for the hands of loved ones.

I saw them happily living life out loud. And then I realized that I was, too!