A cathartic cry and Mom

March 20, 2013

It’s not like I haven’t thought about writing in the last two weeks. I’ve actually wanted to write here more than that one post. But I just couldn’t.

Last month I wrote about the latest disability insurance bullshit. After that delay, I got a bit depressed. I wasn’t thrilled about the depression, but I also wasn’t worried. I’ve experienced it before. It wasn’t too bad, and I knew it would go away once the insurance stuff got settled.

Cathartic Cry

Then last week I found out about a new delay. Now it looks like I should have an answer in April. Maybe. I had just gotten the notice from my landlord saying that I had to either renew my lease or give them notice. I had just gone to the bank to change my accounts, because I can no longer meet the minimum. All sorts of other things depend on this insurance decision. And it was delayed. Again. Still. More.

I was really depressed after that. I cancelled plans that I had been looking forward to for a long time, and I sat home alone in my apartment. I had no desire to go outside. I didn’t want to do anything. I dreaded seeing my friend the next day. She didn’t know the whole story. I didn’t want to explain it. I couldn’t explain it. But I also couldn’t have a happy, cheerful, pleasant visit.

Then I thought more about the way the insurance assholes are treating me like shit. They’re acting like I’m not a real person. They’re taking away from my focus on my health (ironically!) My health has suffered because of the stress of this. I was just starting to make real progress, and this bullshit has led to a backslide.

And I suddenly knew I needed to cry. I had to get it all out. I called the one person I really wanted to talk to: Mom.

I got her on her cell phone. She was on her way to a nice dinner party, so I tried to tell her we could talk later, but she heard it in my voice. She insisted we talk. What a mom! I sobbed on the phone to her for a long time. Yes, these were full-out sobs. I told her my frustrations, my anger, my fears. She listened and somehow she said all the right things. She supported me.

After that call I felt much better. It was the first time I’d cried about this insurance crap, and I really needed it. I was exhausted, but I felt lighter. I spent the night relaxing, and I chose a light-hearted, fun movie to watch before crashing early. The cry had really worn me out. The next day, I cancelled the long-awaited plans with my friend, and instead spent the day with my mom. The sun was out for a change, and we took a long (well, long for me) walk in a park I’d never been to. Fresh air, sunshine, trees, a pond, and dogs really cheered me up. Best of all, my mom is my best friend, and it was great to talk to her. Back at her place, we talked a lot. I helped her clean out her desk, which made her thrilled and made me feel useful and productive for a change. We had dinner with my dad, and then the three of us sat around talking about all sorts of things that had nothing to do with my health or with insurance. Like “normal” people. It was relaxing and lovely. I left their house feeling like I could handle things again.

I won’t say that my depression is gone, but it’s a hell of a lot better than it was a few days ago. Sometimes all it takes is a good, cathartic cry. And mom.


“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!


Being ill doesn’t have to mean watching tv all day… but it can

February 26, 2013

There is a stereotype of people with chronic illnesses sitting on the couch or lying in bed and watching tv all day long. That’s it. They don’t do anything else.

Is this true for everyone? NO! DEFINITELY NOT!

Is this true for some people? YES! OF COURSE!

The point? Don’t generalize. Just because something is true for some people doesn’t mean it’s true for everyone. Do some gay men have great fashion sense? Yes. Do they all? No. Do some women love clothes shopping? Yes. Do they all? No. (I’m one that doesn’t!) Do some sick people lay around all day watching tv? Yes. Do they all? No. If they do, do they have a good reason? Some yes, some no.

I’ve encountered this stereotype a lot. Of course, it doesn’t just apply to ill people who don’t work. I’ve seen it applied to all people who don’t work. When I quit my job several years ago, people kept asking me what I did all day. Apparently they lacked the imagination or interests to figure out what anyone could possibly do besides work at a job for those extra 40+ hours a week. The truth was, I was incredibly busy. People were shocked to hear that I was watching less tv than ever before, and I’d had to stop watching some shows altogether because I just didn’t have time. What did I do? I hung out with other unemployed friends (this was at the height of the recession, so there were several to hang out with.) I read a lot. I exercised regularly. I learned to cook. I started some interesting new projects. I volunteered twice a week at a nonprofit. I socialized a lot more – I rested during the day so I could go out at night, even several nights in a row. I did laundry, cooking, grocery shopping, and other chores on weekdays so I could go out with friends on weekends. I slept healthy amounts every night. I did my physical therapy nearly every day. When I found time, I squeezed in looking for a new job. It was a fun, busy time, and I loved it all. Who had time to watch tv? Not me.

Of course, being out of work this time around is completely different. I don’t have the energy for most of those things. I have entire days where I don’t leave the house. So I have to find other ways to fill my days.

For starters, each thing I do takes longer than it used to. Taking a shower and getting dressed takes a while. Cooking takes a while. Doing dishes takes a while. I also have to cook a lot more than I used to, since I’m not eating any processed foods. In between those at-home activities, I do leave the house. My friends are all working now, but during the day I can visit with relatives who aren’t working. Or I buy groceries. I do laundry. And I read. I read a lot. I read a lot every day and that’s what I spend most of my time doing. And yes, I do watch a lot of tv. I’ve noticed that the amount of tv I watch is directly proportional to my cognitive problems. When I have good focus and my mind is working properly, I don’t watch much tv at all. When things are fuzzy, I watch more.

This is why on a typical day at home, I watch an hour or so of tv while I eat lunch, then shut it off. It comes back on while I eat dinner. If I feel clear-headed, I usually have no patience for tv and I’d rather be doing something mentally active, so I shut it off after I eat. If I’m tired or not thinking clearly, I watch until bedtime, which could be several hours. This is also why I watch almost non-stop during my waking hours when I have a fever; I just don’t have the focus to do anything else. When I get sick of watching tv then I know the fever is breaking and I’m getting better.

On Saturday I had a lovely day. I rested all morning and early afternoon. In the late afternoon I played with my friend’s kids, chatted with my friend, helped get the kids to bed, then played board games. And since then I’ve been paying the price. It started with some fatigue on Sunday afternoon. By yesterday, I felt really crappy. I’ve had a sore throat since then, so I think my thyroid is enlarged. And I feel fuzzy-headed. I spent a lot of yesterday watching tv. I tried to read in the afternoon, but I read the same paragraph 5 times before giving up. Then I took a nap. And then I watched more tv. It was a miserable day. I composed a version of this post in my head, but didn’t have the energy or desire to type it out. I felt lousy and just wanted to ignore everything. Checking Facebook or reading a blog seemed to take too much effort. Tv is easy. It’s passive. And it was perfect.

Today is a mix. I watched for a couple hours around lunchtime before shutting it off. But when I tried to read, I only got through a few paragraphs and I just didn’t feel like I was following along. I managed to participate in the HAchat today, and now I’m typing this, so maybe I’m getting better. I hope so. But then, I’ve had to retype words over and over to get them right. It’s hard to compose sentences. So who knows. I haven’t left the house in over 48 hours and it’s a bit much. I could use to buy groceries. (A downside to living alone is having no one to get food when you feel like crap.) But I probably shouldn’t drive at this point, and I’m definitely not up to walking. Maybe tomorrow.

So to all those who assume that because I’m ill and not working that I spend all day watching tv because I’m lazy, I want to say that I find small ways to contribute to society. I’m a good friend, daughter, granddaughter, and auntie. And if I do spend all day watching tv, that’s none of your damn business!