Physical vs. cognitive: it’s all connected, sometimes

April 10, 2016

I was chatting with a few people about my chronic illness writing when one mentioned a friend with fibromyalgia who also has some cognitive issues. She asked if chronic pain and cognitive problems could be related.

Oh boy, here we go!

Someone else there with chronic pain said that it makes sense to have cognitive issues because the pain can be tiring, but she was a bit vague. I wanted to go deeper.

First, I pointed out that pain can be distracting. I asked, “If I stabbed you with a knife, how well do you think you’d complete a crossword puzzle.” I saw the wheels turning as the others processed that, imagined it. It was graphic, and it got my point across well.

Then, we mentioned how tiring it is to always be in pain. And on top of that kind of tiredness, it’s hard to sleep when you’re in pain, so there’s sleep deprivation, too. I asked how their cognitive abilities are after a few nights of bad sleep. “Now imagine that every night for decades.” Again, they slowly realized.

Finally, I explained how sometimes that thing that causes the pain and also cause cognitive impairs all on its own. In other words, the pain doesn’t cause cognitive problems, the cause of the pain causes those problems. For example, I have Hashimoto’s Disease. Hashimoto’s can have a lot of symptoms including joint pain, digestive issues, cognitive problems, low body temperature, weight gain, hair loss, and more. Notice that one of those symptoms is joint pain. Notice that another of those symptoms is cognitive impairment. Neither causes the other; they’re both caused by Hashimoto’s. Everyone nodded along.

I love that this acquaintance asked these questions and that everyone in the room made the effort to thoughtfully consider what I said. I love that they really tried to understand! Sometimes I hate talking about chronic illness because I just want to forget about it and go have a good time. But sometimes it’s so wonderful to educate people, to help them understand. And now the person who asked will have a slightly better understanding of her friend’s symptoms.

I admit, there are days when I dodge these questions, but today was a good day, so I answered, and I feel great about it. What about you? Do you ever answer these kinds of questions? Do you avoid them? Are you never asked? How do you feel about educating people? Please comment with your thoughts!

When the government forces pain upon us

March 17, 2016

This week there was a difficult statement from the Centers for Disease Control. Well, difficult for people with chronic pain and their doctors.

There has been a lot of discussion around the use of opioids for treating chronic pain. It paints all users are addicts. It suggests that the deaths caused from addiction negate any benefit that might be gained from proper use of the meds. It suggests that there is no such thing as proper use. And so on.

For the record, I do not use opioids. I have tried them and have always found that they helped me very little and that their side effects were terrible. If they worked for me and didn’t have bad side effects then yes, I would use them every day if that meant living with less pain.

Also for the record, many close friends take opioids daily. They are not addicts. They take their medications responsibly. These medications allow them to do heroic tasks like shower, cook, and drive to medical appointments. Occasionally they can even do something fun, like have me over for a visit.

This week the CDC issued a guideline. This is non-binding, but it does usually have an effect on doctors’ practices. I won’t get into the details here, but they’re linked at the bottom of the article below. Suffice it to say, a bunch of people who don’t have chronic pain have decided that those with chronic pain don’t need opioids. Apparently Tylenol and Advil should be sufficient. In other words, they’re completely clueless.

I find this whole thing very upsetting. So on the one hand, I think it’s incredibly important to talk about it. On the other hand, I don’t feel qualified to properly and fully discuss it, and I find it upsetting to even try.

Here are just a few of my thoughts:

  • Lumping together all opioid deaths, including those from heroin use, is hurtful, hateful, and absurd.
  • How can they not be accounting for the increased suicide rate that will result from this? Do they not care, or do they not understand?
  • Do they really think people would take medications with terrible side effects if Tylenol and Advil (which aren’t harmless, by the way!) really worked?
  • Do they have any idea how many different things pain patients try? Do they know how many more things we would try if insurance covered them? I have such a list of things I would do if I only had the money and the energy!
  • Have they not considered that maybe, just maybe, limiting the use of legal drugs will lead to an increase in the use of illegal drugs?
  • If the concern is addition, why not work to prevent and treat addiction? Studies have made it clear that this won’t help.
  • Where is the compassion?

I want to say so much, but I don’t have the words. So here are some reactions I want to share. At the bottom of that article is a link to the CDC guidelines.

The chronic pain community put up a good fight and lost this round. But the fight isn’t over. I don’t know what will happen next, but I know that no one will be giving up!

Yes, I’m one of them

December 9, 2015

I was talking to some friends about some tough decisions I need to make about benefits. One of them said, more than once, that I might need them for a while, but those benefits aren’t meant for my “demographic.” They’re not for people like me. But the thing is, they really are.

I understand why she said it. We both grew up in middle class families in the same middle class neighborhood. We both went to college, then graduate school. We both got middle class jobs. We followed all the “rules” and now we’re supposed to have our happy middle class lifestyles. She is a stay at home mom. Her husband earns a very large salary. She has that middle class lifestyle.

I don’t.

There’s an idea that benefits are meant for other people. The people who aren’t middle class. The people who don’t have jobs. Well, as it turns out, that’s me.

Those benefits are for people with physical and mental illness. People who can’t work. Yup, me again.

People think they’re for people who are older. But they aren’t. They’re for people of all ages. Including people in their 30s like me.

My friend means well. She tries to understand. She is one of the only people in my life who knew me before I was sick, and she understands my health problems better than most. But she can’t accept that it’s permanent because she doesn’t want to. It hurts her to think of me in pain. I get that. I feel the same when someone close to me is in pain; I pretend it can’t be serious or permanent, even when it obviously is. That’s how she feels about me.

But it doesn’t change things.

So yes, I’m one of those people. The other ones. The ones who aren’t us. Except sometimes they are. Sometimes they’re one of us. Sometimes we’re one of them. It doesn’t matter if you grew up rich or poor or somewhere in between, whether you got advanced degrees or didn’t finish high school, you can be too sick to work. And when that happens, benefits like food stamps, Medicaid, and section 8 are helpful. Even when we don’t want them, we need them.

Like it or not, we’re one of them.

Cutting out the people who don’t care

October 13, 2015

Her: I’d like to invite you to our house for Thanksgiving.

Me: You’ve probably heard that I might need surgery, so I can’t plan anything until that’s figured out.

Her: I’m sorry to hear about the surgery. I had no idea. Just let me know if you’ll be able to make it or not.

On its face, this seemed ok. She was sorry to hear about the surgery. So that was a good response, right? But I felt like something was missing. It nagged at me. I read the message again. Something still nagged at me, but I didn’t know what.

Hours later, it hit me: she didn’t ask why I needed surgery, if it was a big deal, or anything else!

I’ve been one of the lucky ones. Most of my family and friends have been incredibly supportive. A lot of people lose many of their loved ones when they have a chronic illness. It’s an unfortunate side effect that the doctors don’t tell us about. It’s hard and it hurts and it sucks. But it happens.

For me, it was my sister. I’m sure our problems aren’t all because of my health, but they’re a big part of it. Every now and then, I question if things area really that bad. Maybe I should try to make amends? Maybe she really does care? And then something like this happens.

Apparently our parents hadn’t mentioned my possible surgery to her. I guess there wasn’t anything to mention yet. I was pretty sure I’d need surgery, but I hadn’t gotten the MRI results yet (which is why I haven’t mentioned it to you yet – don’t worry, I’ll tell you all about it when it’s official.) Now, if someone I cared about had said, “As you probably know, I might need surgery,” I’d be upset and worried! I’d ask why, when, if I could do anything to help, etc. Actually, that’s how the few friends I told have responded. They’ve been amazing. They’ve been calling and texting and emailing. They’ve asked questions and offered support. Not my sister. Nope. She didn’t even ask why I would need surgery.

It’s hard to accept that sometimes a relationship can’t be salvaged. It’s natural to want to keep people in our lives. It’s especially hard when that relationship isn’t a vague acquaintance or a coworker, but a close friend or a sibling. We don’t have any other siblings. We only have each other. But that doesn’t matter. That’s not enough of a reason to try to be close to someone who obviously doesn’t care about me, or who at the very least tries to distance herself from me.

I know from past experience that I am better off focusing on the positive relationships in my life. So I will go to Thanksgiving dinner to be with other relatives (depending on how I’m feeling,) but until that day, I will put my limited energy into relationships with the people who love me and care about me.

Now if you’ll excuse me, I need to answer some more of my friends’ emails. They’re worried about me.

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