“Normal” stress is NOT healthy!

March 8, 2013

I’ve been thinking about stress a lot lately. It was a big topic in the explanation of some test results I read this week. I’ve been feeling a lot of stress because of the disability insurance insanity and that’s thrown me into a setback.  And of course, stress comes up constantly as I research how to fix my adrenal problems. But today it came from a different source.

A friend sent me a chat message on Facebook a few hours ago. We chatted about the snowstorm and a nice video online, then J mentioned the pain she’s having in one of her joints. The pain is apparently (according to her and her doctors) due to bad sleep, and the bad sleep is from stress. One of the first things she wrote was, “Well, I think it’s more my inability to handle a totally normal amount of stress, which is embarrassing.”

Oh boy. We have a problem here. And the problem isn’t just hers, it’s our society’s. (Note that I live near Boston, in the northeastern United States. You can choose to believe whatever definition of “our society” that you want.)

My symptoms started in the early 1990s, but my diagnosis came 10 years ago. I was working multiple jobs and letting my type A personality rule. I was also dealing with the end of a serious relationship. My doctor told me I needed to sleep more and stress less. I literally laughed when he said that. It was a joke, right? After all, if that was doable, wouldn’t everyone do it? It’s taken me many years, but I finally understand the roles that stress and sleep play on our health. I understand how important they are. Having seen the light, I’d never go back. Sadly, most people haven’t seen the light. Yet.

As I read more and more about autoimmune disease, adrenal fatigue, etc., I realize that while our bodies can handle a certain level of stress, most of us take on more than that level on a regular basis. And that’s the “normal” that J referred to. Not being able to handle the stress that everyone else does (or that they say they do,) she said, “makes [her] feel like a loser.” See, she thinks that being stressed out all the time, working constantly, taking on too much, is “normal” and that she should be able to handle it because everyone else appears to.

Well I’ve got news for J and for everyone else who believes that. Our bodies were not designed for that level of stress. Besides that, you can never be sure how much stress someone else really has. What they say may not match up with the reality. And you don’t know how well they’re handling it. I have a friend, R, who does so much. He works a lot, does a ton of side projects, and is planning a wedding. He loves it and he’s happy. He doesn’t think it’s stressful at all. You’d think he’s handling it well. But I’ve been watching him put on an unhealthy amount of weight. Other people drink too much. Others become sick regularly (I bet you have that one friend who catches every cold that comes along but is otherwise healthy, right?) Some live perfectly healthy lives, but then die young. You just never know how someone else is really handling their stress. And by the way, you can’t control your own exposure to stress entirely.

Of course, that’s a big part of the problem: people usually define stress as being anxiety-provoking, but stress can come from positive things too. Too much fun at a party can stress your body. A job you love, if worked too many hours, can cause stress. It’s not just emotional, it’s physical. Living in a house with mold you’re allergic to can be a stress. An infection can be stress. And sudden incidents can be stress. You can be taking great care of yourself, keeping stress levels low, when suddenly you get cancer, a loved one dies, you and your spouse lose your jobs in the same week, your roof starts leaking during a hurricane. Some things you can not control

The one thing you can control is your response to the causes of stress.

As for me, when I got diagnosed I quit all of my jobs and rested for several months, then started a 9-5 work schedule. You may have to leave an unhealthy relationship, quit a demanding job, move to a more relaxing environment. Maybe you need to start meditating, writing in a journal, and taking deep breaths regularly throughout the day. The best way to handle stress is different for everyone, but I think it’s vital that each person figures out what works best for them.

A difficult one for me is not letting other people’s stress influence me. When a loved one is hurt, it’s hard not to get stressed out, but I’m talking about the more superficial kinds of stress. That’s why I try to do my taxes long before the deadline every year – when everyone else is stressing out in mid-April, I don’t get swept up in their hecticness.

In our culture, though, it’s considered a good thing to be constantly busy. People compete to be the busiest. Like, if you’re not busy, then you’re not important or you’re not doing enough. Ask someone, “What did you do last week?” and they start listing off so many tasks that it seems impossible they did it all in such a short time. Would someone say, “I read a great book, watched some tv, and played with my cat”? I doubt it. I mean, I think it would be great, but I’ve never heard that before. Instead, people try to sound busy all the time. More than that, they feel they should be busy all the time. That’s unhealthy! The truth is, you’re actually smarter than everyone else if you take some time to yourself, read a book, write in a journal, and get some exercise instead of working an extra 10 hours. Even knowing that, I find it hard not to get swept up in their attitude that more is better. After a lot of practice, I’ve learned how to avoid infection with that attitude, but I see that J and most of my friends succumb to it.

Let me ask you, if you can afford to, do you take vacations from work? I used to work at a company that offered a lot of vacation days, and for some reason, people didn’t use them all! Some said the place would fall apart without them. Others made up different excuses that basically said the same thing. In some offices there’s pressure on employees to not take vacation (that’s illegal!) but this was one where we were encouraged to take it. I always took mine. I figured if the place would fall apart without me, if I couldn’t set things up to run without me for a week or two, then I wasn’t doing a very good job. Maybe my coworkers should have tried that perspective. Instead, they wanted to feel important. We often define ourselves by our jobs, and they needed to feel that their job needed them as much as they needed it. (And by the way, we survived when the new mother was on maternity leave for 3 months, so I think we can survive 1 week without you.)

And while we’re talking about the office falling apart without you, or a friend not being able to get by without you, or whatever, consider this: how well will they do if you let yourself fall apart? If you don’t take care of yourself, then what will happen? On the other hand, if you take the time to take care of yourself, you’ll be a better employee, friend, parent, etc.

Of course, like I said before, it’s your attitude towards stress that makes a huge difference. On paper, J does it all right. She works reasonable hours and doesn’t bring any work home with her at all (another hurtful attitude that our society thinks is not just acceptable, but admirable!) The thing is, she feels guilty about not bringing work home. And that guilt is stressful. She feels guilty about not working more, even though she works all of her required hours and gives it her all. And, by the way, she does a fantastic job at it. So what’s the problem? Her friends and family complain (really, they brag) about the many long hours they work and yet they seem to handle the stress just fine. So she feels that she should do the same. To me, that’s like saying that since my friend H can run a marathon, I should be able to also. And because my friend M is trilingual, I should be too. And my friend A is a rocket scientist, so I should be able to be one also. Life doesn’t work that way. We all have our talents. Just because one person can handle working long hours (though you can’t be sure they’re handling it well at all) doesn’t mean we all have to. J has many talents that others don’t have but, like so many, she’s focusing on what she can’t do instead of on what she does do. And what does that lead to? Let’s say it all together now:

STRESS!!!

.

Ten years after I laughed at that doctor I now see how much I was harming my body. Unfortunately, I did a lot more harm before I realized what was happening. Now that I see it, I’ll never go back. I just wish everyone else could see it too.

There are plenty of other sources for tips on dealing with stress. There are web sites, books, classes, and more. And you can easily read up on the biology of what happens to our bodies when we experience stress. That alone could be enough to convince you. I cringe every time I read about it. But right now, I just want people to understand that it’s not good for us. And that working more, doing more, being more, isn’t what makes us happy. So that means that many of us are measuring ourselves against an idea of “normal” that will ultimately hurt us.

Let’s face it, this blog doesn’t have the readership to make huge change (but I do get excited as I see the numbers going up every week!) Still, if this helps just one person, I’ll be happy. So please share it with people you know who need to slow things down. And please share a comment here or on Twitter telling me how you’ve learned to handle your stress and/or what made you see the light. The more examples we have, the more we can help others.

Disclaimer: I’ve said this in other places but I feel it needs to be said again here: I’m not a doctor. I have no medical training. I am not offering medical advice. Everything here is my own opinion, not fact.


The anatomy of a trip to the grocery store

March 4, 2013

Ask a “healthy” person what’s involved with getting groceries, and they’ll probably say: “Go to the store, pick items off the shelves, put them in the cart, pay, go home.” Those of us with pain, fatigue, cognitive, and other issues know that it’s not that simple.

Groceries

Some people use grocery delivery services and some have spouses, parents, friends, or others who get groceries for them. For the rest of us, going to a store for food is inevitable. I just got home, and was amazed, as I often am, at how exhausting it can be. Here’s my own breakdown. It’s different for everyone, but I think it might be worth passing this along to your able-bodied friends who don’t seem to understand the difficulties you deal with. This may open their eyes a bit.

Buying groceries:

  1. Let’s assume I’m already dressed. The first thing is to sit down, put on shoes, and stand up again. Oy. Next, coat, scarf, and other wintery layers. In the summer, carry 1-2 water bottles.
  2. Walk down the hallways, down the stairs, and outside.
  3. Spend a couple minutes trying to remember where I parked my car. Beep the alarm to help find it. Before the memory issues, this was rarely a problem. Now it’s happening more often.
  4. Climb into car.
  5. Drive to grocery store.
  6. Circle the lot looking for a decent space. On bad days, I must be as close as possible to the door. On better days I can be a bit further back. It’s been a long time (years) since I’ve had a day that I could park at the back of the lot. Also, it’s better not to be too close to the next car on the driver’s side if I’m going to have trouble getting out of the car this day, or if I’m going to have trouble controling the swing of my door. My grocery definitely needs more handicapped parking spaces!
  7. Get out of car.
  8. Open back door and bend over to take out shopping bags.
  9. Walk into the store.
  10. Get a cart. Try to get one of the carts that’s smaller and therefore easier to push and manuver around the store.
  11. Check grocery list. Thankfully, I can keep mine on my phone now so I never forget it at home.
  12. Walk up and down the aisles, careful not to forget anything. Going back takes too much energy.
  13. Check grocery list. Memory ain’t what it used to be.
  14. Pick up items, sometimes having to crouch down (ouch!) or reach up (are you kidding me?)
  15. Examine items to be sure they don’t contain gluten or other bad-for-me ingredients.
  16. Lean over to place items in the cart. Anything unbreakable just gets thrown in. Bending is only for items that need more care.
  17. Mentally calculate the weight of all items in the cart. Only get more groceries if I think I can carry them to my apartment later.
  18. Check grocery list. Damn memory!
  19. Realize I forgot something after all. Go back.
  20. Repeat 11-19.
  21. Exhausted now. But almost done (sort of)! Head to checkout.
  22. Unload cart. Bend and lift. Bend and lift. Bend and lift. Heavy items in left hand, lighter items in right. Unless right is having a great day, then medium items in right, too. Pay attention, now, I don’t want to hurt later.
  23. Wait for cashier to scan each item.
  24. Insist on packing my own bags. I know from experience that the workers always pack my bags too heavy, since I look healthy, and then I can’t manage them. Lift each item and place it in the bag.
  25. Lift the bags into the cart. Oooh, feeling that.
  26. Pay the cashier. Most days I can pull out my credit card and sign the screen without a problem. There were times I couldn’t even hold a pen, though, which made things more complicated.
  27. Walk out to the car.
  28. Lift bags from the cart into the car. Not good.
  29. Return cart to store front area. No, neither of my groceries has a cart return in the lot.
  30. Trudge back to the car.
  31. Collapse into the driver’s seat. I want to be done. I need to be done. But I’m not done. Rest in the driver’s seat for a few minutes.
  32. Drive home.
  33. Attempt to park at least twice before succeeding. The more tired I am, the more tries it takes to successfuly parallel park.
  34. Rest in the driver’s seat for a few minutes.
  35. Climb out of the car.
  36. Pick up each bag from the car. Swing one over each shoulder. I try to get no more than two bags per trip. Otherwise, I may need to make more than one trip up to my apartment, and that’s too exhausting and painful.
  37. Get to my apartment.
    • Walk down my walkway.
    • Climb up the stairs.
    • Unlock the door.
    • Press the button for the elevator.
    • Wait impatiently with the bags on my shoulders, because it’s easier than putting them down and then having to lift them off the floor.
    • Take the elevator up to my floor.
    • Walk down the long hallway.
    • Fumble with my keys. Hopefully don’t drop them (I hate when that happens while I’m carrying things!)
    • Unlock door. I’m home!
  38. Walk directly to kitchen.
  39. Unload first bag from shoulder to the kitchen counter. Ahhhh!
  40. Unload second bag (if there is one) from shoulder to the kitchen counter. Ahhhh! Relief!
  41. Walk back to front entry.
  42. Close door.
  43. Remove coat, scarf, and other layers. Kick off shoes.
  44. Walk back to kitchen.
  45. Remove each item from the bags.
  46. Put all freezer items into the freezer. Hopefully apartment is warm enough that fingers don’t go warm right away.
  47. Put all fridge items in fridge. Hopefully there’s room on the upper shelves so I won’t have to do more bending at this point.
  48. If I have enough energy, put all canned items in the cabinet. Try to carry several at once to reduce trips across the kitchen (about 4 feet each way.)
  49. If I still have enough energy, put away the rest of the food.
  50. Walk to the front entry with the grocery bags. Leave the bags there so I remember to bring them to my car the next time I go out.
  51. Wash hands. I want to make sure I don’t get the flu on top of everything else.
  52. Drink lots of water. I’m probably dehydrated by now.
  53. In the summer, go to the bathroom. I’ve undoubtedly drunk 8-16 ounces of water, if not more, during this trip.
  54. Collapse on a chair or the couch.

And now the shopping is done! Yay!

I didn’t plan out this list in advance, I just wrote it as I thought of it. And then at the end I went back and added #24, because I realized I forgot to mention paying. I’ve probably forgotten other things too. But I find it interesting that I didn’t plan this list, and yet more than half of it involves what happens after I leave the store. That says something.

How does your list compare? Is it similar? Completely different? I’d love to hear about it! I think this is an activity that many people take for granted. I used to, but I sure don’t any more. I’m incredibly grateful that I can still manage this most days!


More disability insurance bullshit

February 28, 2013

The other day I wrote about the inanity of the disability insurance system. Today I finally got in touch with my doctor and she read off the questions they sent her.

First, I love my doctor. When they called her, she refused to answer their questions on the phone and insisted that the questions be sent in written form. Lovely. And she’s going to send me a copy in advance so my lawyer and review it before she sends it in. Let’s just hope it helps me.

So anyway, she read the questions. And I didn’t like them. There were some along the lines of, if Prednisone and Plaquenil were helping me, why did I go off of them. Um, HELLO?!?!?!? These are not drugs to stay on long-term if you can help it! Why on earth would they suggest otherwise? And of course they asked why I didn’t try other disease-modifying drugs. I wonder if they mean the drug that’s in a class I’m allergic to, the one that causes permanent infertility, or the chemo drug? Because those are the only options I haven’t tried. Anyway, these questions are all focusing on treating the pain, and if you’ve been reading this blog for any length of time, you know that pain is not what’s keeping me from working these days. It’s the fatigue that’s stopping me from working, dating, spending more time with friends and family, getting out of the house many days… you know, having a LIFE!

Of course, the problem is that these insurance folks don’t see a person in those medical records. They see symptoms that could cause them to have to pay out lots of money, and they don’t want that. So they’re looking for a way to not pay the money. Even though if I had the money, I’d probably get better faster because I’d have more stable health insurance and more money to pay for treatments that aren’t covered by insurance, not to mention less stress and more stability in my life. But no, they’d rather try to avoid paying at all, which just delays my treatments, which means that if I do eventually win, I’ll be on the insurance for even longer. I’d rather get the money now so I can get better and then go back to work. And then they wouldn’t have to pay me at all.

Maybe I should buy a lottery ticket instead. Because, yeah, that always works.

I have to find a way to get healthy. I have to get healthy, start socializing again, go back to work, and then figure out how to fix this ridiculous, unfair, broken system that is completely stacked against the patient. I need to figure out how to lobby legislators or whatever to provide some fairness to this joke of a system.

It’s just not ok.

I used to end every post by asking readers to share it. I stopped doing that because I don’t think it helped and I’m less concerned by the quantity of readers than by the quality of readers (as in, getting people who are in some way helped or entertained by my writing.) But this time, I’m asking you to please share this and any of the other insurance-related posts. It’s so important to start opening people’s eyes to this. Everyone is so focused on health insurance. Yes, that’s important, but disability insurance is important too. And what’s the point of having it if they won’t provide the service that you’re paying for? People need to start realizing this, so that we’ll have more support as we work to improve the system. So please consider sharing this on Facebook, Twitter, Reddit, or whereever else you are. Or even by old-fashioned email (does that make me sound old?) For all but the last, just use the little buttons below this post. It’s a small way to help me work towards one day changing the system.

I can hardly wait to get started.


And the insurance system screws me even more

February 23, 2013

The kid tells his teacher that his book report will be late.

  • Kid: But it’s not my fault! I didn’t have enough time!
  • Teacher: You knew about this 2 months ago.
  • Kid: But the library was closed!
  • Teacher: When did you go to the library?
  • Kid: Yesterday.

You have no sympathy for the kid, right? He should have gotten the book much, much sooner. Procrastination isn’t an excuse.

Of course, what my insurance company did is even worse. You can read the basics here. After sending in the appeal, the insurance company by law has 45 days to respond. At that point, they can request an addition 45 days, which of course they did. So I counted down those 90 days, anticipating and dreading the result, but thankful that at least I’d know, one way or the other. I was glad that I could move out of limbo. I waited impatiently for my lawyer’s call. Almost a week after the deadline, I emailed my lawyer, and she responded that she hadn’t heard anything yet. So I waited more. Finally, more than a week after the deadline, I got the word: they need more time.

And this is where it gets all book report-y. They say they need more time because they need to talk to my rheumatologist. They contacted her and didn’t hear back. I asked when they contacted her. The answer: the day before the deadline. They reached out to her on day 89 of the 90 day response period. So WHY THE FUCK DID THEY WAIT SO LONG?!? Probably, because they can.

There’s nothing I can do, of course. My only recourse is to sue the insurance company, and my lawyer insists that won’t help. The company will argue before a judge that they didn’t get to speak with all of my doctors and the judge will rule that they should get that chance and in the meantime I’ll be paying the legal fees.

So I’m waiting again. I’m waiting and waiting and waiting. I did call my doctor to find out when she’ll respond to the insurance company and I am waiting to hear back from her. And that’s all I can do.

I’m furious. How can this happen? Don’t they realize there’s an actual person whose life is being affected? Who needs to make plans for the future, like whether or not she’ll be able to pay the rent next month? Who needs to know how much she can afford to spend on medical treatments? Where’s the respect for a fellow human being? Why doesn’t the patient have any rights?

I’ve said it before and I’ll say it again: when I get healthy I’m going to try, somehow, to fix this system. Because this is simply not ok.