Finding the sweet spot for sleep

August 28, 2013

I don’t know about you, but sleep, and lack of it, has always pissed me off.

When I was a kid, I hated bedtime. I was never tired. I would stay up reading for hours. Sometimes I would hide 20130828_171154under my covers with a flashlight and read until 3am. I just wasn’t sleep.

As an adult with all sorts of health issues, that’s just one of my sleep problems now. Sometimes I’m not sleepy at bedtime. Sometimes I fall asleep without a problem, then wake up complete at 3am. Sometimes I sleep for 10 hours and wake up feeling as if I hadn’t sleep much at all. I almost never wake up in the morning feeling rested. Still, I’ve recently had some success in the sleep department. It both surprises and excites me, so I’m hoping to continue it. Sometimes I’m sleepy at bedtime. I’m not waking up as much during the night. I wake up feeling tired, but that goes away with an hour or two. So I’m not there yet, but I’m enjoying the progress I’ve made so far.

Here is what works for me (in no particular order):

  • The room must be cool, bordering on cold. I use an air conditioner through most of the summer, fans are on all year round, and sometimes I open a window even in the dead of winter (and remember, I live in Boston, so our winters aren’t warm.)
  • I keep the room fairly dark. Of course, the shades need to be open if the windows are (so I can get fresh air, and also so they don’t make noise while being blown around.) For the light that gets in, I cover my eyes. Wearing a sleep mask helps a lot.
  • White noise is a must. When the air conditioner is on, that’s plenty of noise. In the fall, winter, and spring I use an app on my phone. This has made a huge difference for me. It helps to block out the city noises outside my window. Sure, I still hear the garbage truck in the morning, but the screeching of brakes and drunken yells during the night from the sidewalk don’t bother me anymore.
  • I have a bedtime routine. Getting undressed, brushing teeth, etc. all happen in a certain order. This cues my body that it’s almost time for sleep.
  • I wear as little to bed as possible. Most nights I just wear underwear (if that.) I find that clothes make me too warm. They also get tangled when I roll around in my sleep, and that wakes me up. If I must wear clothes, I make sure they’re as comfortable as possible.
  • My bed is really comfy. I have a great mattress and spring board, soft sheets, and blankets that are the right amount of warmth for each season. I spend more than 1/3 of my days in that bed, so I want it to be fantastic.
  • I read before bed every night. Some nights I read a lot, other nights I fall asleep after a paragraph, but I always read. I’ve found that if I don’t read, my mind wanders to things I did, things I need to do, people I need to talk to, problems I have to deal with, etc. Sound familiar? Reading is a great distraction, but it has to be the right reading. Personally, I can’t read books about health stuff before bed because I get upset or my mind starts churning. For me, light novels are the best bedtime reading material.
  • I moved around my supplements. I now take my zinc and magnesium in the evenings and at night. I heard about this from other patients and I think it has helped.
  • I avoid screens before bed. No tv, no computer, no cell phone. They say to avoid these for at least an hour before. I’ve found tv is ok until near bedtime, but I need to avoid the computer for at least an hour beforehand. This isn’t just because of the effects from the light of the screen (though that too) but because I get sucked into interesting articles, feel tempted to read just a few more Facebook status updates, want to answer some emails, and too much time goes by and I stay up too late. Plus, the things I do online tend to get my mind churning and sometimes my bedtime reading isn’t enough to stop it. I’ve found that tv is ok, and books are best in that final hour.
  • I went to a sleep clinic and met with a great doctor there. He suggest I take low doses of melatonin to help me get sleepy at night and to use a blue light in the morning to help me wake up. These have worked really well, though I’ve found that if I take melatonin too often then I’m drowsy the next day. Still, it’s a huge improvement.
  • Food and water make a huge difference. Thanks to a strong bladder, I never wake up during the night to pee. I drink a lot right before bed so I’m not thirsty during the night. I also mentally check in on my stomach a couple hours before bedtime. If I’m not entirely full, I have a snack. That way, hunger won’t wake me up, either.
  • I don’t eat close to bedtime. That definitely messes up my sleep.
  • An exception to the last one: I take a couple sips of orange juice before bed. This is new. I read that if you have adrenal fatigue (which I do) and you wake up around 3-4 am (which I often did) then you could be dealing with a drop in glucose levels. OJ helps with this. So far it’s working. I’ll have to see how that goes.
  • I set my phone to not show any blinking lights at night for text messages, phone calls, etc. That way if for some reason I do wake up and take off my sleep mask, I won’t be tempted to check my phone. I keep it near the bed for the white noise app and so I can check it when I wake up, but I don’t want to check it during my sleep times and this helps.
  • I have a clear rule for all friends and family: no phone calls or texts before 9am unless it’s a true emergency. If I’m really in dire need of extra sleep then I shut off all phone sounds. Otherwise, I leave it on knowing that if I get a call before 9am, it’s probably either an emergency or a doctor’s office/lawyer’s office/insurance call, and I want to get those at any hour.
  • When I’m mentally stuck on going to bed, I remind myself of everything I did that day. That way I remember just how many hours I’ve been awake, and going to sleep doesn’t seem so bad. I also remind myself of everything I want to do still that night, and how much easier and more fun it will be to do those things after I get some sleep.
  • I go to bed around the same time every night. I wake up around the same time every morning. That really helps!
  • I’m treating my adrenal fatigue, which is getting my energy levels where they should be. I’m not there yet, but I’ve definitely improved. This means that I’m getting sleepy at night more easily and also that I’m sleeping better during the night.
  • When the pain is sort of bad, I read as a distraction. When it’s really bad, I watch one of my favorite old movies. If the pain subsides enough after meds kick in, I’ll fall asleep in front of the movie. I’ve seen it enough times that I don’t mind. After an hour or two I’ll wake up and go to my bed (the tv is in the living room.) If the pain is completely unbearable, I don’t try to sleep. Some nights it just won’t happen, or at least not much, and that’s ok. I don’t feel bad about it. I just try to get back on track the next night.

You probably noticed that some of the things that work for me are pretty standard in any sleep advice lists, such as having a sleep schedule and avoiding computers before bed. Here are a few more I’ve read about that might be helpful if you’re having sleep issues. Of course, I’m not a medical professional, so definitely get advice from a professional if your sleep is a real problem.

  • Write a list of positive things that happened to you that day. This is good for clearing your mind and also as part of a bedtime routine.
  • Meditate.
  • Avoid alcohol, caffeine, and nicotine for several hours (at least) before bed.
  • Avoid naps during the day as much as possible.
  • Exercise every day if you can.
  • Time your exercise so that it works for you. This usually means avoiding exercise for a couple of hours before you want to go to sleep.
  • Consider who you’re sleeping with and what changes you might need to make. Ask a partner to avoid watching tv in the bedroom, insist your pets sleep someplace else, etc.

We all know that sleep is important for our bodies to heal properly, but that doesn’t mean that it’s easy to achieve. This is a really tough area for many of us. In fact, this post was inspired by the Twitter conversation by WegoHealth yesterday (#hachat) Check it out to see what others are saying.

So tell me, what works for you?


The “But you always look so good” comments

August 23, 2013

I’ve heard it far too many times: But you always look so good when I see you. Or along the same lines, My brother doesn’t understand your illness because you always look good when he sees you.

I’ve written before about the masks we wear to hide how we really feel. That’s definitely part of it. I’m good at wearing a smile when I feel lousy, speaking positively when I’m sad, and in general hiding how I feel. Yes, that’s definitely part of it.

But then there’s the other part. It’s so obvious, and yet people seem to constantly miss it. It’s really quite simple: I don’t leave the house when I feel really crappy. That’s why no one sees me when I don’t look ok. When I’m out, it’s because I feel well enough to be out, and if I feel well enough to be out then I feel well enough to present as ok. On the other hand, when I’m so exhausted that I have trouble picking up the tv remote, when my brain fog is so bad that I mess up making a salad (which I actually did yesterday), when the pain is so horrible that walking to the bathroom is excruciating, then I stay home. If I stay home, then no one sees me. See, I told you it was simple.

The funny thing is, as simple as this concept is, it took me a while to realize the pattern myself. When I heard those comments, I just figured people weren’t being very observant. They were ignoring my pale skin, slight limp, occasional wince. It took me a while to realize that even though the symptoms are there and can be noticed, the really bad symptoms, the ones that are just about impossible to miss, are almost never seen by others. There’s been the occasional ex-boyfriend or my mother or a friend who I was visiting with, but that’s it. No one else has seen me when I’m feeling really, really bad. So how can I expect them to understand?

I used to respond to those comments by saying that I’ve learned how to cover things up, or that they just didn’t notice, but not anymore. No. In line with my new policy of honesty, I now tell them the truth: they don’t see me on my truly awful days. And then I offer to describe what those days are like. I feel better, and I think it’s enlightening for them. I hope it makes them think twice before they judge anyone else.

Sometimes it’s what you see. And sometimes it’s the absence.


Finding health solutions outside the doctor’s office

August 14, 2013

This month’s blog carnival topic over at Patients for a Moment really caught my attention. It’s being hosted by Getting Closer to Myself – go check it out!

There are a few questions I could have answered, and I’m choosing this one:

How has social media impacted your illness experience?

Anyone who has been following this blog knows that I only recently began to figure out what’s causing my various symptoms. But do you know how I’ve been finding answers? It sure wasn’t at the doctors’ offices! They were all pointing fingers at each other, saying it was someone else’s specialty and not offering me any answers. The real journey started with a book.

I was bored while all of my friends were at work, so I went to the library. I thought I’d check out the books about one of my symptoms because it had been a long time since I’d done that, and while I was perusing the shelves, a title caught my eye about hypothyroid symptoms. I grabbed the book and immediately started reading. That book led to another, and those led to web sites which connected me to Facebook groups. Suddenly I found an entire community of hypothyroid patients online, mostly on Facebook and Twitter and in other places, too. They were dealing with hypothyroid and a lot of the accompanying issues that I also face, like adrenal fatigue.

Being ill can be isolating in the predictable ways: spending days at a time alone at home, not working, and having to miss social events are of course difficult. But the thing that many people don’t realize is that it’s also isolating to be sick and not know why, which symptoms are attributable to which diseases, which symptoms are relevant and which aren’t, or what to do about it all. This can make a person feel very alone, because it seems that no one else understands. Finding books, blogs, web sites, Facebook groups, and Twitter chats of people going through the same thing makes me feel a lot less alone. But they’ve also given me hope because, for the first time in many years, I have treatment routes to explore! In fact, if it wasn’t for the Chronic Babe online support group (which sadly no longer exists) I would have never begun seeing the naturopath who cured my IBS and who has helped me in so many other ways over the past year.

Let’s face it, social media is far from perfect. Finding the right groups and accurate information can feel like looking for a needle in a haystack, but it’s possible. We have to watch out for scams and inaccurate information. There are still doubters. But for me, social media has been incredible. It has given me a community to turn to, answers to my questions, and the hope that I could improve. I can’t wait to see what happens with it next!


Must I educate everyone?

August 5, 2013

I went to a party the other night. (As a side note, YAY! I got out of the house and went to a party!) I know the hosts through a former job, and I had met a lot of the other guests through them and through that same job. I hadn’t seen them in years, so while at a normal party one or two people may ask, “What do you do?” at this party everyone asked. I hate that question, but it’s hard to avoid. I mentioned to one guy that I was unemployed. He said he wished he could get that gig. I was about to respond, “Yeah, it’s a great gig except for the lack of any income!” and just laugh it off, but our host overheard and mentioned that I was out on disability.

So here’s the problem: he shouldn’t have said that. I didn’t mind, but in general, it should be up to the person in question to disclose their disability status or not. It’s no one else’s place to do that. So I feel like I should say something so that he knows and won’t do it to anyone else. After all, I don’t mind, but there’s a good chance that someone else will. My guess is that he was trying to help me out but clearing things up, but there many times and many people where I don’t want it mentioned. After all, this was a party. I didn’t want to discuss my health – I wanted to have fun!

The thing is, I’m tired of educating everyone. Yes, I’d like to help him avoid offending someone else, or making someone else uncomfortable, but do I need to do that? I mean, it’s not my job to educate everyone, right? And it’s exhausting to be doing that constantly. I like to think of myself as a health activist, but it doesn’t have to be 24/7. At some point, enough is enough, and I think I just hit the point where I draw the line.

I like to educate others. Really, I do. I help whenever I can. This weekend I offered advice to parents whose teenager recently came out as gay and is having a hard time (I’m bi.) Today I’m helping someone newly dealing with chronic pain figure out the support services that exist in our area. But must I always correct honest mistakes? Maybe not. Maybe I’ll just let this one slide.

And yet, I feel guilty. So maybe I’ll say something after all….?