How do you rate yourself?

March 14, 2013

Self assessment is never easy, and it’s certainly not accurate. This can be true for the way we look, the way we act, and the way we speak. Lately, I’ve been thinking about it in terms of my health.

First, there’s the vague stuff. If I’m feeling good on the day I see the doctor, I’ll focus on my progress. If I feel bad, I’ll focus on Pain scalethe setbacks. That’s just natural. At 3pm Tuesday the doctor may make one assessment of me, but at 11am Wednesday it would look completely different. It’s hard not to have a selective memory based on mood, especially when brain fog is already an issue.

Of course, that also doesn’t account for the inability to differentiate periods of time in my mind. How have I felt in the last 2 months compared to the 2 months before? Are they kidding? In the middle of March, I’m supposed to compare January to last November? On my best days before brain fog I could sometimes use association techniques to make a wildly inaccurate comparison. But now? Forget it!

Then there are the more specific ratings, like the pain scale. We all know the pain scale, right? You tell your doctor how much pain you have, with 0 being no pain and 10 being the worst pain you can imagine. They always seem to ask about the pain I’m experiencing that day, even though that day could be an aberration. And talk about subjective! I explained to my rheumatologist the other day that the pain started when I was a kid. After all these years, after experiencing new levels of pain, after gaining the perspective of an adult, of course my pain scale has changed. My 17-year-old pain 8 is now only a pain 6 or so. I report a lot of pain 2 and pain 3 days now, and even some pain 1 days, but the same pain 15 or 20 years ago would have rated at 4 or 5. There’s no good way to reflect that in the medical record. And there’s no objective test for it.

I’ve heard of people using a similar scale for fatigue, but my doctors haven’t suggested it yet. For that, they ask about how much activity I can do in a day and how I feel afterwards. Again, there’s a lot of selective memory there. I don’t like it, but I can’t help it. I’m only human, after all. And it’s just all too easy to forget about the walks I accomplished, or to ignore the days I wasn’t able to leave the house.

I’ve had three medical appointments in the last week, and I think they each got incredibly different views on my health. Sure, it’s partly because they each know different things about me, we have different histories, and they focus on different things. And it’s partly because of the time of day I saw each, the distance I had to travel, the stress surrounding the visit, and how much activity I had done in the days prior.

As always, it comes down to the idea that we just need to do our best. And that’s what I’m doing. I just hope it’s good enough.

 


“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.


Following the gray

March 7, 2013

I thought my last post was a day or two ago. I was shocked just now to see that it was THREE days ago!

This is a bad, bad, bad day for me. Boston has been getting a lot of rain and snow, which I don’t mind too much (as long as thePhoto 3 snow isn’t enough to require shoveling.) What I do mind is the lack of sun. Even on the days without precipitation, there’s no sun! A few times I’ve woken up to see some blue sky out my window, but I can only see a sliver from my bed, by the time I get up an hour later, it’s gone. A day or two ago (I really can’t tell the days anymore) I saw some blue sky. It was so exciting! I had thought about taking a walk, and that gave me the push I needed. I walked a few blocks and back, then found a place to sit. It was too cold to sit still, but I did it anyway for as long as I could because there was blue sky! It really helped. Unfortunately, the sun was behind the clouds and sunset came less than an hour later. And that was the last time I saw blue sky.

When I was a kid, I knew I didn’t like the early sunsets in the winter. I knew it, but I didn’t know why. It wasn’t until much later Photo 1that I realized it was a seasonal thing. And the first time I heard of seasonal affective disorder (SAD), it just clicked. I suddenly knew why I became grumpy every October, and bitchy by November. And those manic days at the start of spring made sense too.

I’ve been feeling it getting worse every day. Last week I felt so lousy from a resurgence of symptoms that I didn’t leave the house for three days. Those were the sunny days, of course. Since then, I’ve been dealing with SAD, the worse symptoms, and the latest round of insurance bullshit. Add to that concern over 5 ill family members (yeah, it’s been an odd week), uncertainty over my immediate future (thanks to the insurance crap,) and the loneliness of sitting home by myself while my friends are all at work, and you can begin to understand why this hasn’t been the greatest week for me.

The gray weather can’t last forever. That’s what I keep telling myself. This is a long stretch, even for Boston. The sun should be out on Saturday. I have no plans for that day, but I sure hope to be outside. A lot. In the sun. Enjoying every minute of it as much as I can. The rest of the shit will still be in my life, but I have a feeling it won’t be nearly as bad when the sun comes out. I just hope it comes out soon.


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!