Trouble getting going

I feel like I’m trapped in molasses right now. I think I want to do things, but actually getting up and doing them is challenging. I did make cookies today, which surprised me, since I haven’t been able to get up the will to do it the last couple of days. This may have happened because I was hungry, and haven’t gone grocery shopping since I got back.

I’m really struggling with the WILL to do things as well. So I guess it’s sort of like a two-phase problem. There are some things I don’t have the will to do, and others that I want to do, but feel stuck.

I’m also not really able to sort of stick to goals I’ve tried to set. Like blogging. I try to do it three times/week. Clearly that hasn’t happened recently. I get busy and this gets dropped by the wayside. Knowing that I want to do it, I should plan for it, but I don’t. On Monday I had a meeting that I needed to be somewhere from 8am-1pm. Then I wanted to go to the doctor, but got sidetracked by something else, and didn’t get back from the doctor until after 7:30pm. By then I was pretty spent for the day.

I guess the real problem is that I don’t treat the things I want to do seriously. Part of the problem with working from home is that the day doesn’t have the structure that working from an office does. Things sort of just slide around. When I worked from an office, I knew that I had X amount of hours when I got home to get things done. I felt some pressure, and that encouraged me to do what I wanted.

Now, the days just sort of slip by. Before I know it, I’m as tired as I get, and I crash. It doesn’t help that I’m tired throughout the day as well. I suppose constant fatigue can get in the way of goals at times.

I am working on getting the fatigue issue sorted out. I saw an ENT the other day and learned that my nose is blocked – so I’m not getting the right amount of air in. We’re trying a nasal spray for two weeks and will see where I’m at, maybe do a sleep study. At this point I would love to have some energy during the day to get things done and feel like myself again. I hate feeling wiped out all the time. It’s gotten old.

Perhaps I should cut myself a little slack.

My fibro isn’t Lady Gaga’s fibro

Lady Gaga has fibromyalgia. I’m sorry for her. Having fibro sucks.

And apparently people are now talking about fibromyalgia. This is GREAT. A lot of people, doctors included, don’t think fibro is a real thing. They think it’s all in the mind or some bullshit like that. It’s not. Functional MRIs can now show us that fibromyalgia is a real thing. In case you don’t believe Lady Gaga, here are 15 other celebrities who have it.

What concerns me about Lady Gaga sharing her experience is that people are going to hold her up as the model for fibromyalgia, and compare the rest of us to her.

It’s not fair to say, “Well, Lady Gaga swings from a trapeze while singing during her shows and she does shows all the time. Why can’t you come to a party?”

That’s not how chronic illness works.

First of all, fibromyalgia is characterized by three main things: widespread musculoskeletal pain, fatigue, and localized tenderness. How strong each of these is and how often they affect someone depends on the individual. There are an estimated 5 million people with fibromyalgia, so you’re basically looking at 5 million different cases with different symptoms.

Second, a lot of people with fibromyalgia have other chronic health issues. That’s right. As if having fibromyalgia wasn’t crappy enough, we get hit with more. Take me, for example. I have lupus, Hashimoto’s thyroiditis (which may be an expression of the lupus), anxiety, depression, Type 2 diabetes, IBS, and chronic back/leg pain (after a spinal fusion that went kind of wrong). All of these affect my “activities of daily living.” So even if fibro isn’t kicking my ass on a given day, something else probably is.

Third, medical things aside, we’re all VERY different people. We have different expectations for ourselves, different lifestyles, and different life situations. Lady Gaga and Morgan Freeman and whichever other celebrity has fibro are all in a completely different place financially than I am. They may have help to do things that I don’t have – someone to clean their house, someone to do their hair, someone to drive them places. Us normal fibro sufferers have to weigh the costs of our actions against our plans for the day and week. If I know that I have to do laundry, wash dishes, and vacuum, I know that I’m not doing much else that day. Those individually cause pain. Together they’re a nightmare.

So yay, fibromyalgia is getting some attention. I just hope that people do research on it and don’t just assume that it’s the same for all of us. Because it’s not.

Done

I’m done. I think I probably hit this point a few weeks ago, when my irritation with everything lasted for days. I woke up irritated.

I don’t really know what it is. Mr. Lyndsy and I have been apart since August 10, but we’ve been apart this long before. That could still be it.

I’m not sleeping well either. But that’s nothing new. Maybe it’s catching up with me.

I can’t string together many non-irritated days anymore. That’s problem.

I know that irritation like this can be a symptom of anxiety. Unfortunately I can’t walk around stoned on Xanax all the time though I should consider it for the next few days until I’m back with Mr. Lyndsy.

I don’t like being irritated by everything. I don’t like not wanting to be around people. But I can’t be nice when I’m like this. And I’d rather not do and say things that will upset people.

Being me is hard sometimes. I don’t think all my pieces work particularly well together. An extrovert that can’t be around people nicely? That doesn’t work.

I have been exhausted lately. So much I want to and need to get done before I eventually get on a flight back to the sandbox but I just want to sleep or lay in bed. I’m tired of being tired.

Ugh.

People are exhausting

I’m a direct seller with a few companies. One of the companies I’m with just announced some major changes.

Rather than be calm and rational and THINK THROUGH things, people are freaking out on the COMPANY’S GROUP PAGE. I even saw a comment from someone who hadn’t watched the company’s announcement, but instead just ran with what she’d heard other people saying.

The people complaining are people who aren’t making many sales each month. This means they aren’t actually making that much income either. But they’re worried that the company is taking it away. They say they’re working hard.

Here’s the thing. Working hard doesn’t always mean you’re working the right way. If you’re doing the same thing over and over you’re probably getting the same results. When something isn’t working you have to step back and re-evaluate your plan. Try something new. Jump out of your comfort zone. That’s how changes happen. That’s where you find success.

But really, what the ever-loving fuck is wrong with people? If this is how they’re responding on this issue, I’m guessing this is how they respond to other things as well. Rather than actually taking the time process information, they’re letting knee-jerk reactions carry them forward, yelling about it, and getting inflamed by the other people who didn’t bother thinking things through either.

I’m guessing that’s how we got our asshole president.

And of course, because people freaked out, the company changed the requirements to make it easier. Now all those people who didn’t bother thinking shit through have been rewarded for their idiocy.

This is why we can’t have nice things.

It’s fucking irritating and I’m already in a foul mood.

BLARGH.

My Week Unplugged

I took last week off. I went into the middle of nowhere with a friend and unplugged from social media and the computer for the most part.

It. Was. AWESOME.

Everyone should do it when you can. I was so much less stressed out. I kept up with the news some, but I wasn’t inundated with posts from friends. It’s not that I don’t like the posts, but it certainly gets to be a lot. (I sort of live in an echo chamber on social media.) I also didn’t work at all, which really helped my stress levels.

We started at an AirBNB in Northern Michigan. I say started at because we did end up having to leave, which was not the plan. The deadbolts didn’t go into the frame of the place; there were open electrical things because switch plates were missing; the shower was skeevy; there was no door on the bedroom (it was only a one bedroom place, not two like the ad said); the queen bed was where the living room used to be I think; there was only a curtain between that bed and the bedroom so you could easily reach out and touch someone (anyone remember that AT&T ad?); the “kitchen facilities” consisted of a burner, a toaster oven that I’m not sure worked, and a microwave that we had to move to where the TV was since none of the plugs were three-prong (we had to plug it into an adapter); there was a blanket covering a section where the wall was missing and it was just insulation; there was a sliding glass door with no curtain on it so anyone could peek into the house and see the person in the queen bed; the AC unit was plugged into an extension cord next to the queen bed so thank God we didn’t need it since it would have had to be plugged in right over my friend’s head; the ad showed photos of water sports but wasn’t near any water; it was in a sketchy neighborhood and we got creepy stared at when we went out for walks; and the sheets were musty and gross – we couldn’t be sure whether they were actually clean.

But, we were going to stick it out. Until the toilet failed and the showed backed up with it. We got there on Sunday and expected to leave on Saturday. The toilet failed Tuesday night. Messaged the owner to let him know and he told us to plunge – that it always worked for him. (So right there I’m getting pissed off since he knows this is a problem and gave us NO warning.) After a while we check the toilet and the water has gone down and it can be flushed. Except that it wouldn’t flush again Wednesday morning. That’s when we decided we were done. When you’re chronically ill and occasionally have nasty bouts of stomach ickiness, you don’t live with a shitty toilet. (See what I did there?)

Owner was totally cool with us leaving and refunded the money for the days we didn’t stay. I think in an attempt to get us to leave a good review, he told me he’d already called the septic company to come out. Then he offered to let us stay Thursday and Friday nights for free if we were still in the area. (We weren’t – we headed to Detroit to go to the zoo and a Tigers game.) Then he rescinded the offer because he had his local plumber go out and that guy told him that his septic had failed. To further piss me off, the owner told me that he knew he was on borrowed time with the septic. He also shared that he wouldn’t be able to rent for the rest of the season. My heart broke for him. Or not.

The obnoxious thing about the experience was that we couldn’t have known it was going to be messed up from any part of the ad or the reviews. Everyone talked about how great it was. We wondered whether everyone had had problems and he just gave people their money back so they would leave good reviews.

This would completely put me off AirBNB but I’ve had a prior good experience with it. I will probably be very critical of the ads in the future and message the owner with questions they’d never expect (like, “have you had problems with the toilets recently?”).

If you’ve had experiences with AirBNB, please share them with me. If you all have had mostly funky experiences, I’ll stay away from it going forward. Also, I wonder if there’s a difference between international and local to the US AirBNB.

5 years gone

Five years ago my stepfather Pat took the truck to Steeler Heaven. It was sudden, but not surprising, when he left us. His heart had been giving him shit for a little while and you could see it as he moved around. When he died, I was glad he wasn’t suffering anymore. It’s not how he wanted to live and everyone who knew him understood that.

It certainly threw my mom for a loop. I have no idea if she was in denial about his health or truly didn’t see it. It’s taken her a long time to get to an okay point. She’s got the dogs to keep her company and occasionally we joke that Pat’s messing with them, making sounds only they can hear so they bark like 17 mail carriers are coming to the door.

I still miss him every day. He never got to meet Mr. Lyndsy, which is exceptionally sad because they have a lot in common. They both love football (just not the same football). Passion for a sport is apparently the same, regardless of the sport. Mr. Lyndsy even has some of the same mannerisms that Pat did. I also think if Mr. Lyndsy were ever hospitalized, they’d also have to take the TV remote away to keep him from watching his teams play since the stress would drive the hospital’s monitors crazy.

I like to think that Pat would be proud of me for the choices I’ve made, for exploring new parts of the world, and doing the best I can do given the situation I find myself in. He knew all about pain affecting how you live and how much it sucks. He’d probably tell me to go easier on myself and just do what I can since I’m no good to anyone if I’m totally wiped out and stuck in bed to recover.

I’m sorry he didn’t get to spend more time with his granddaughter or meet his grandson. Pat was basically an overgrown kid himself, which is why he could have so much fun of them. I’m sure he would have liked to see the father his son has become.

I still cry when I miss him. He had a special kind of orientation toward life that made you want to live more, push boundaries, and see just what you can accomplish. You don’t often meet people who live with the kind of bravery he did. He was himself, whether that was good or bad for the time. You could always count on that.

I hope that wherever he is he’s got a nice cold beer (preferably a Guinness), an excellent hat, and socks that have been washed sometime in the last few months. Since it’s early in the football season his socks probably are still mostly clean. If it were later in the season I can guarantee they’d smell like something a dog buried and then unearthed.

Here’s to you, Pat. May we all live as courageously as you did.

1

Feeling like a burden (Spoonie Life Complication #3)

A few months ago I got stressed out which led to a horrible back spasm. I tried to fall asleep, but was kept awake by the pain. It was so bad I actually had tears in my eyes. I couldn’t find any position in which I was comfortable. I hemmed and hawed about whether to wake up Mr. Lyndsy. I posted about it on social media – asking whether it was okay to wake him up.

Overwhelmingly the answer was “Yes! Wake him up!”

But I still didn’t do it until a time when he might have been up anyway. (Obviously he wasn’t awake since I had to wake him up, but it was after 7am when he’s usually up.)

Once up he put some ointment on my back to try to soothe the spasm, but it didn’t help much. A little while later we headed to the doctor to get some drugs that would actually help.

Mr. Lyndsy was upset I hadn’t woken him sooner. People online were surprised I didn’t wake him sooner.

Here’s the thing, I constantly feel like a burden already. I didn’t want to be EXTRA burdensome by disturbing his sleep.

Spoonies, even those with the most supportive partners, often feel like burdens because we can’t do all the things we think we should be able to. Some of us can’t work full-time like we used to. Others can’t help keep the house clean or cook. These things make us crazy. We try to do what we can, even to the point of hurting ourselves, but we rarely feel like it’s enough. (Occasionally this is made worse by outsiders who add their commentary about how bad they feel for our partners, having to pick up the slack.)

We try to be as un-needy as possible all the time. We minimize pain we’re having or hide it altogether. We just don’t want to burden those we love.

So when something happens that we believe is going to be an additional pain in the ass, we’re indecisive about what to do. Can we manage on our own? How much should we try before we go to our partners? What’s the pain point that we really just can’t take it anymore?

That’s where it has to get before we’ll reach out. Especially if our partner is doing something they really enjoy, like sleeping or playing video games or out with friends.

It all comes back to the fear that one day we’ll be too much for someone. One day our partner will hit their breaking point and that will be it. So rather than push it to that point, we do everything we can to be as self-sufficient as possible. Because we believe we’re already a weight on our partners’ backs every day.

I need a break

The news over the last two weeks has been horrifying and depressing.

My health is making me crazy. The fatigue is awful no matter what I do. I want better sleep. I want less pain.

My patience is waning for everything.

I’m tired.

So I’m taking a break. From August 27-September 2 I’m unplugging. A friend and I are locking ourselves away at an AirBnB in the middle of nowhere. We’re going to spend time reflecting on our lives, chilling in nature, and figuring out what comes next for us.

I cannot tell you how much I’m looking forward to this. I think it’s going to make my soul happy.

I’ll miss you all but I think things will be better after this break.

Unless the United States stops existing while I’m gone. Try to keep everything together, please.

Destroy the Statues

Y’all know which statues I’m talking about, right? The ones of Robert E. Lee, Stonewall Jackson, and any other Confederate soldiers.

Yes, I’m saying we should not only take them down, but actually destroy them as well.

  1. The monuments aren’t history. History is what happened. It’s not monuments that were erected 50+ years after the Civil War ended. Confederates/white supremacists/Klansmen erected this statues to establish the lasting virtue of their ideals. They put them in places (like in front of courthouses) that would continue to intimidate black citizens, as if life wasn’t already hard enough for them. We have textbooks for what happened. We have photos. We have documents. We don’t need the statues. Also, history books. There are so many of those.
  2. Most people would never have seen a statue of Robert E. Lee. Most people wouldn’t see a statue of any of the traitors anyway (and yes, they were ALL traitors to the United States), probably unless they were in a historical museum that would make them seem important. So great, now we’re highlighting shitty ideals that have no place in the country, mores than we already do.
  3. White people made the mess, they need to fix it. The reality is that white people created this mess. They need to rein their people back in and find a way to get them to understand that white supremacy is bad. Really, I doubt a statue is going to do that anyway. Understanding why white supremacy is bad should be a thing that people just know. If they don’t, it’s going to take a lot of in-depth conversations and probably meeting real live black people. Not looking at a monument that was created as a memorial for racist ideals.
  4. Can we stop torturing black people? Look, by now everyone should have figured out that life for black people in the United States is pretty shitty as it is. Black people get shot, can’t get jobs because of their names, pay more for their mortgages, get terrible deals on cars – and the list goes on. Is this not enough? Why must we take down monuments of hate only to re-erect them somewhere else? Class trip to the Civil Rights Museum and the little black kids come face-to-face with a giant statue of the man who thought they were only 3/5 of a person, that they could be owned? How is that fair because white people haven’t figured out any other way to convince each other that was fucked up.
  5. We aren’t over racism enough. There are still people who don’t get that systemic/institutionalized racism is real. There are still people who say that the US isn’t racist anymore. NeoNazis and Klansman are marching in the streets, faces unobscured, and people are okay with it because “well, that’s their right.” At some point, we have to make a distinction between free speech and hate speech. Were they to try to act on the things they’re saying, they could be sued and would lose, because those ideas VIOLATE THE CONSTITUTION. Under the Constitution, all men are equal and have the same rights. The ideas of the KKK and Nazis are in direct opposition to that. But the point is, we’re still racist AF. If we think this is okay, then obviously the statues are fine.
  6. Saving them gives racists a place to celebrate. If we keep the statues, we’re giving white supremacists exactly what they want – a place for them to revere their heroes. IS that really what we want? Do we really want asshole white supremacist parents taking their kids to the museums and saying, “This was a great man. His ideals are our ideals.”  Putting the statues in places where they are on display, almost in a way of honor, continues the perception that those ideas have value.
  7. We shouldn’t celebrate the false equivalence. Racist/white supremacist/white nationalist ideals do NOT have the same values as those of tolerance and acceptance. Keeping memorials to those ideals suggests otherwise. They give the impression that those ideas were valuable, but that some people disagreed. Just because a lot of people held those values dearly enough to go to war against their own brothers does NOT mean they have VALUE. People have gone on about how those ideas were part of our history so we can’t ignore them. That’s true. Those who don’t know history ARE doomed to repeat it. However, the very fact that there are museums dedicated to the Civil War and Civil Rights Movement necessarily means that there was a fight against something. Otherwise, why would there have been a movement? We don’t need to put the horrible and despicable on a pedestal.
  8. The artists don’t deserve recognition. For people to have spent what had to be hours upon hours to create these monuments, they had to believe in the ideals espoused by the subject. Why should we celebrate them for that? Why do they deserve any kind of recognition for being vile? We don’t celebrate the doctors who helped create the solution for the gas used in the gas chambers at the concentration camps. This is basically like celebrating an artist whose art killed people. Because really, that’s what it did. These went up at times in history that were particularly awful for black people. They emboldened the KKK to act. Why should we do anything other than destroy the monuments?

But hey, if you’re cool with keeping the statues, this is really just more of the same for minorities. White people again making decisions without taking into account how they might affect black people, or again being more concerned with their fellow white folks than anyone else.

I think that if we want to memorialize the statues we should take video of them being torn down and put THOSE in the museums. You can talk about what they represented and why they had to be taken down. That would accomplish the goal if history, but also what’s right.

 

1

Goodbye to a friend

My last year of law school I took a class on politics. Thoroughly bored with the law, I wanted to spend time in a class where I would enjoy the material. An adjunct professor, Peter Schalestock, taught the course since he had extensive experience in politics.

The very last class of the semester I had a presentation to give so I didn’t read the assigned material figuring I wouldn’t get called on. Apparently I wasn’t the only one. Instead of looking away while Peter was searching for someone to discuss the material, I looked directly at him. And then he called on me.

Rather than try to bullshit my way through an answer, I said, “I’m not going to lie, I didn’t read for class.”

He responded, “But you looked like you had something to say.”

“Oh, I always have something to say. It’s just not always relevant.” The entire class laughed, including Peter.

After the class was over, he and I got to talking. For an hour in the entrance to the law school. Six months later, he was at the campus bookstore while I was working in the office next door. I ran out to say hi. At the end of the conversation, he handed me his business card and said, “Now you can prove to your friends that you know a Republican.” I got a good laugh at that.

Eventually I did email him and we started hanging out. He was swamped that election season. He was an election law expert and there were tough contests across the country. Surprisingly he spent a good deal of time in Montana. I asked him why that was, since there were probably more moose than people there. That became a running joke for us and that year for Christmas we exchanged moose gifts. He got a stuffed moose from me and I got a moose shot glass from him that I still have.

Not long after he moved to the East Coast for work, but we stayed in touch. I got a RUDY card from him for my law school graduation (he worked on the campaign until it imploded). When he visited Seattle we got together.

I was sort of floundering my last year of law school. I knew the law wasn’t really for me, but worried about that since I’d spent three years getting the degree. He assured me that there were other things I could do with myself and that it was okay, even normal, for me not to want the lifestyle of a lawyer.

We stayed in touch through Facebook over the years, exchanging messages here and there.

I found out today that he passed away yesterday. He’d had a long battle with his heart, and it seems that it finally gave out.

The world lost a great man with his passing. He was genuinely kind-hearted, brilliant, and funny. I will miss him greatly. In honor of our friendship, I bought myself a new necklace. When I wear it, it will hang close to my heart.