Clinical management of insomnia

Cartoon man lying in bed with thought bubble counting sheep in thousands

I didn’t know I could count that high.

You know this title is a joke, don’t you? Am I the type to lecture you on anything? But I am well versed in dealing with insomnia, as much from my clinical work as from my vast personal experience. Ah, the glory of a good night’s sleep.

I’ve been a crappy sleeper ever since I left my mother’s womb. Six full weeks of colic, she asserts. She’s surely exaggerating since the exhaustion of caring not just for sleepless screaming me but also for my two not-much-older siblings clearly impaired her memory.

My sleeping has improved to some degree especially over the past 10 years, especially as I’ve gotten more tired from illness, but I have learned that insomnia and chronic fatigue unfortunately can co-exist. Anemia has its benefits–I’d never slept so well until that bombshell hit–but I had a bad insomnia relapse this week. Two bad nights in a row, the second a personal best, stretching from 12:30 to 6:30 a.m. Despite my extensive clinical knowledge of what to do to manage insomnia–don’t stay in bed if you can’t fall to sleep, bozo, get up and go to a different room, keep the lighting low, and listen to music or read something not overly stimulating until you are tired enough to return to bed, and never, ever, ever turn on your computer/TV/cell phone–I didn’t heed most of it. I didn’t touch the electronics, at least. I could say I was too tired to do all those other things but I’d be lying because I was wide awake.

So what did I do instead? I stayed in bed and planned out the rest of my life, in the process disturbing J.’s sleep as well. I’m terming last night’s bout “happy insomnia”. (Apologies to my sister in liver disorders, who recently introduced me to the term “happy tears” when she was reading something in her car that made her cry from happiness. I’ve adopted her notion for my own selfish purposes.) I don’t often have this type of sleeplessness; mine is normally anxiety fuelled.

“Happy insomnia? Why?” you ask. In fact, I had a lovely visit with Dr. Liver Wednesday, in which he graced me with his time and kindly addressed my long but reasonably organized list of questions, as he always does. (Patience of a saint, that man.) He gave me as clean a bill of health as he was able given recent investigations and bloodwork. If he’s cool, I’m cool. I left feeling hopeful and positive, and decided I’d better make the most of my time, starting at 12:30 a.m. the next morning. How else to milk the time I do have but intrude on my sleep hours? Unfortunately, I was more than a little tired yesterday–I’m amazed I didn’t land in Tuktuyuktuk instead of Vancouver–so last night I committed to better using my daylight instead of nighttime hours.

The beauty of exhaustion is that eventually it overwhelms sleeplessness. I was so tired last night that I slept like a baby (absurd analogy given mom’s reports, I realize). But if that insomnia devil rears her head again, I swear, as you are my witnesses, that I’ll get out of bed and do what’s advised until I’m ready to try sleeping again. Either that or draft my next blog entry on the computer.

P.S. Pretty clever how I snuck in the lecture, no?

 

“What can I do?”

This past week, from my unwanted home on my couch, I was overwhelmed by tremendous support far and wide. I’ve written before about the importance of asking for help when in need and how lucky I feel to have so many great people in my life when the going gets tough.

People often ask someone who is sick, “What can I do to help?” I’ve learned that my job, if I need the help, is to answer. The answer will differ depending on what I need at the time. This past week, I’ve needed help with dog walks (walking the dog is hard from the couch), with my household duties, and with driving (darn that standard car!) I’ve also craved some company, and have been lucky enough to have a few friends drop in to pass the time. (There are only so many Food Network reruns even I can watch.) And it’s all been here, thanks to J. and our wonderful support team.

Sometimes I don’t even wait for the question, I just ask. And sometimes I don’t have to ask. Some of our friends have been through these ups and downs with us enough to anticipate these needs and offer spontaneously. I’m not sure I actually asked for help with the dog; it was just given, daily, sometimes in duplicate. People visited and called and emailed and and even brought sorbet. I only cried on the phone with one (her fault for calling first thing in the morning).

Sarah Jessica Parker with multiple items in her hands and arms and caption: "I don't know how she does it."And J. has been a saint. Her role is a bit more complicated at times like this because she’s trying to stay upbeat with depressed me while she’s flying by the seat of her pants, caring for me and the household in addition to working full time. I’m almost glad she has work to escape to, even though she’s run off her feet there too, since being home is no break at all lately.

I hope my friends know that by supporting me in these ways, they are supporting J. too. If others tend to the dog’s needs, J. doesn’t come home to puppy mania at the end of a long day. If I have people to talk to, I don’t talk her ear off as soon as she gets in the door. (Okay, I still do, but for just a few hours instead of all evening.) If I’m less stressed because I’ve got help, J. can only benefit from that.

Really, J. has to bear the consequences of my incapacity in so many ways. But she has had to learn to ask for help during my hospitalizations, and she’s better at asking than I am. And she needs to talk to people who understand the trials and tribulations of being my partner. As charming as I may be, I know that living with a sick person is not a party sometimes.

May has been devoured by doctors and symptoms and reminders that I’m sick. As June approaches, it’s time to move the sick me to the back burner where she belongs. J. and I both need an illness vacation, so off to Vancouver we go. I’m going to try my first real ramen. Shhh! Don’t tell the low-sodium police where I am.

Crying isn’t just for babies

Baby crying hard.

There’s nothing wrong with being a crybaby.

I should preface this post by acknowledging that it’s been a pretty hard week. Gout has been my unwanted companion day and night, interfering excessively with my daily life. Too much inactive time alone in my house is always bad for my mental health.

I’ve been trying not to be a downer–I’m sure you all have enough going on in your own lives–but I haven’t been the model of coping I aspire to. In fact, I’ll admit to the odd tearfest. I’m not much of a cryer but sometimes I just can’t stop myself, just like the baby who is long overdue for a diaper change. I figured I’d share with you my guidelines, as a psychologist and a person with feelings, for using your crying time most productively.

1. Don’t try to stop it. If you’re at that place where it’s got to come out, trying to hold it in probably won’t help. Rather, it might just give you a headache, or result in your bursting into tears later that day upon discovering your favourite show is on reruns.

2. Pick a time that works for you. I happen to be a morning cryer, but you may be better suited for evenings. When I get my tears out of the way first thing, I find I can then get on with my day. You may manage through your day but fall apart at bedtime. Just don’t let crying take over your day; put it away once you’re done and get on with things.

3. Don’t forget multitasking. I often choose to do something during a crying fest, and find it eventually distracts me from my misery. For example, I might get up and start making dinner. At some point I realize I can’t read my recipe through my tears so have no choice but to shut off my fountain and get to work.

4. Remind yourself that, like everything else, whatever is distressing you shall pass. When a client was at his most despairing, when he came in at his lowest, I often wondered how he would get through it. But inevitably, the next time we met, he was feeling better: he had tried to approach the problem in a new way or had gained a new perspective on the challenge. I learned a great deal from my clients’ capacity to rebound. So, too, your distress may feel insurmountable in that moment, as does mine some days, but within a few hours, or the next day, or sometime in the very near future, you may wonder what the big deal was.

Indeed, as overwhelmed as I have been the past few mornings, I have made it through each day with the tremendous support of J. and my wonderful friends, I think I’m now past the hump. I am almost back on my feet (literally) and can look forward to everyone’s favourite 50th-year marker: Tuesday’s colonscopy. That darn prep has got to be easier than this bout of gout has been, and the sedation….

My life after death

I don’t much believe in reincarnation–I figure I have one shot at having a good life and being a decent person–yet I do fantasize about who I could be were I to come back. Don’t tell me you haven’t considered a similar next-life transformation at some point.

You might expect I’d first make myself beautiful–imagine a tall, thin body maintained by an unnaturally high metabolism, long voluminous hair, a certain je ne sais quoi?–when in fact, I’m much more interested in changing what’s on the inside.

First and foremost, I’ll be healthy as a horse.  No ailments, no medications, no side effects, no complications, no hanging out in hospitals or doctors’ offices. Nothing personal, docs.

Since I’ll be able to ditch the low-sodium diet, I’ll eat salt and lots of it. That means limitless pizza, french fries, and bacon. I’ll go out to restaurants and order whatever I want without careful scrutiny of the menu on line, without calling ahead to see if my low-sodium needs can be accommodated, without the server rolling her eyes at my special requests.

Being thin is not a priority, so long as I can find pants that fit. That means my waist will no longer be second-trimester pregnant and out of proportion to the rest of me. I’ll have a hint of abs and an innie–no six pack, let’s be realistic–like I did before all this health stuff interfered.

I’ll still want to be a psychologist because I enjoyed it so much the first time around. (How do people survive in jobs they don’t love?) I’ll be able to work full time until retirement age and will always have great confidence in my abilities.

Outside work, I’ll have boundless energy to entertain and cook gourmet meals and go to movies and indulge in my varied interests. I’ll surely be a much more cultured and interesting person.

My great friends will again be kind and supportive even through tough times, and I’ll be as good to them as they are to me. Maybe I’ll even shed my social anxiety.

I’ll travel to far-away lands because I won’t be worried about my immune functioning or the medical care or cleanliness of the water. Imagine me exploring other cultures and eating exotic foods, except perhaps durian.

Dog on leash carrying stick with owner by side

What could be better than this?

I don’t even have to tell you I’ll have a dog. Maybe even two.

Oh, and of course, I’ll again find and marry J. and we’ll live happily ever after. Maybe we’ll even meet when we’re young and healthy so we can have a few enviable kids. (Who am I kidding? At age 4, our dog still jumps on the counter any chance she gets.)

Yes, that means I’ll be gay again, even if I have a choice. Homophobia will be a distant memory by then.

There’s nothing in J. that I’d want to change next time around; she’s perfect the way she is. At least her life will be easier if she isn’t again tasked with caring for a sickie.

 

Whose body is this anyway?

old man with hat dancing

My identity thief?

As I lay awake last night in pain from my first gout attack in months, I wondered whether somebody gave me the wrong body. (That’s after a bout of pathetic self-pity fuelled by exhaustion.) Gout is more often a man’s disease, and it’s more common among heavy drinkers and people who eat lots of animal protein. Other risk factors include carrying excess weight or having health issues like diabetes or high blood pressure.

When I had my first episode of gout many years ago, I was a mostly vegetarian teetotaller in my early forties. I was not overweight and had no obvious predisposing ailments.  No wonder it took the doctors so long to figure out what was wrong: they didn’t expect someone my age and gender to have this disorder. In fact, my polycythemia and my diuretic use predisposed me to developing gout.

When I was first diagnosed with polycythemia in my mid-30s, and I did my before-I-knew-better internet research on the illness–how many times must I tell you not to search the internet for health information?–I learned that this particular blood disorder is more common among older Jewish men. As a younger Jewish woman, I had only one of those strikes against me. It turns out leukemias are more common among Jews as well.

When I got my beer belly despite my teetotalling, I started to question again. My apparent fluid-retention pregnancy was due to my sickly liver, again more common among male drinkers. I was not that person; I came by my pregnancy honestly, if not as most women do. I do, however, accept my contribution of my ginormous blood-disorder-related spleen, which I have often referred to as my perennially unborn child.

So I guess I got the Jewish part right, but I am not yet old (though I often feel that way), and I am female. I also don’t plan to take up drinking or a carnivore’s diet. When I consider my lemon of a body, I wonder if I’m a middle-aged woman trapped in an old Jewish alcoholic man’s body. That must be it: God confused me with someone else. I guess I could be a character in the movie Big or some other such Hollywood body-exchange fantasy. I didn’t choose to be in this movie, though, so the part is yours if you’d like it.

I know we all get older and our bodies change as we age. Our pace and reaction times slow, we misplace things, we can’t hear at hip restaurants anymore (assuming they will seat us), and we are more likely to need medical care. I just figure a few more things may have happened to my body because of this mysterious identity theft. Why did that old Jewish meat-eating booze-drinking man choose my body when there were so many younger, perkier gals he could have chosen from? I may never know the answer to that question.

Stay tuned, though, and I will tell you all about the body I’m planning to have in my next life.

I’m not as smart as a 5th grader

Wish I were as smart as him!

Oh, to be as smart as this lad…

As a psychologist, I spent many years assessing children’s IQs for learning strengths and weaknesses. I even assessed the odd–and I don’t mean “strange”–adult. So I have a good sense of what makes a person smart, at least by these widely recognized testing standards.

In my last post, I quipped about not being smarter than a fifth grader. Out of curiosity, I went on line and found several tests to assess exactly that. Now, no psychologist I know supports any kind of on-line intellectual testing, yet I was compelled to find out whether I had been speaking out of school. My scores aren’t important. Let’s just say that sadly I was right.

I used to think I was smart enough, but then a few years back I became very sick and ended up in hospital for almost two months. I spent so much time in bed, lost so much weight and muscle strength, that initially I needed a wheelchair to get around. Over several months I regained my balance and those muscles grew back yet my body is not yet where it was before I got so sick.

I figure if my body was so impaired by my hospitalization, my mind must have been as well. In other words, when I was in hospital, it’s likely that more than a few brain cells died.  People don’t talk about these cognitive effects of illness much because they’re harder to quantify than the physical changes. (I thank God I don’t have a pre-hospital IQ for comparison since I’d hate to imagine how many points I dropped during the ordeal.)

I had not thought much about this until my Sister in Liver Disorders, who suffered a similar critical and prolonged medical stay when her liver jumped ship, noted she felt less smart now than she used to. (N.B.: She seemed sharp as a tack to me.) Her thinking and reasoning is probably different than it was before, as is mine.

The changes I’ve noticed are subtle. My attention and concentration are weaker than before. Paperwork challenges my attention to detail and organizational skill. For example, my taxes were a nightmare–and not just because I earned so little. I sometimes have difficulty keeping up with fast-paced conversations, and I miss the occasional joke.

Just as I’m now able to walk and my balance is much improved, my brain doesn’t feel as slow as I did when I first got out of hospital. If this is any indication, I’m back to doing those tough Sudokus again, although I make more careless errors.

I don’t do IQ testing anymore; I gave that up soon after my hospital discharge, knowing I just wouldn’t be up to the task. So, although I can speculate based on past experience, I can no longer formally assess whether your fifth grader is smarter than you. But based on my recent on-line testing results, irrespective of medical status, I may not be the only one struggling to keep up with the younger generation of smarties.

 

No Woman’s Land

I’m going to spare you the details of my visit to the Cancer Centre earlier this week. Suffice it to say that my cancer is not the issue right now. Despite the kindness, concern, and breadth of knowledge of my favourite nurse practitioner, I left my appointment more muddled than when I arrived. I realized I needed to find a new way to think of my doctors’ visits, so I came up with my ping-pong analogy.

Dr. Family

One triangle with four embedded triangles

(I’m in the middle.)

 Dr. Cancer                                              Dr. Liver

Imagine a triangular ping-pong table, but if you have more doctors involved in your care, your table might be a hexagon or even an octagon. (N.B.: If I were smarter than a fifth grader, this graphic would be much better; I’m counting on your imagination here.) My specialists (Dr. Liver and Dr. Cancer) and my family physician (Dr. Family) each occupy one corner. Each doctor has a net, and each can direct the ball at any other doctor. There’s a No Woman’s Land in centre court. In case you haven’t figured it out, I am the ball.

I’m not suggesting my doctors whack me around because this is not the case. The game is not competitive. The docs have a gentle volley with soft paddles–recall my propensity for bruising. But my concerns may have multiple causes, and often one doctor’s intervention may compromise that of another.

As you can see, the problem with this model is that I often end up in No Woman’s Land in the middle of the table. The doctors are trying to lob me over the net but sometimes they just don’t know where to direct me. Occasionally, other factors leave me there (e.g., lost paperwork, vacationing doctors, or differing opinions).

I have to get my head around the fact that I spend a lot of time spinning in the middle of that table for reasons that no one can control. That’s why I often leave a doctor’s office with more questions than answers and a need to follow up with a different physician or two. I am a perpetual, ever-changing puzzle.

Consider my anemia: Cancer and cancer treatment can make people anemic. (Dr. Cancer has first serve.) But anemia has many potential causes, including a malfunctioning thyroid (Dr. Cancer serves to Dr. Family) or some kind of gastrointestinal bleed (Dr. Cancer to Dr. Liver). Dr. Liver finds ulcers that may explain anemia, so Dr. Liver increases medication that can interfere with chemotherapy absorption (Dr. Liver returns ball to Dr. Cancer). Also, Dr. Cancer prescribes iron supplements to address anemia, thereby aggravating the ulcers (Dr. Cancer returns to Dr. Liver). But wait, thyroid is off again (Dr. Cancer lobs back to Dr. Family). Dr. Cancer suggests IV iron to address iron-supplement side effects, but IV iron is hard on the liver. (I’ve lost track of who has the ball, but no matter; the game won’t end until I do.)

I’m not trying to suggest I feel tossed around. Sometimes I end up in someone’s court because of a spin or curve I initiate. I’m an active participant in my game, and I am full of surprises. Luckily, my ball has a lot of bounce left in her yet.

What have I learned from my time in No Woman’s Land? That I can live with uncertainty. That there’s no point panicking when the answers aren’t immediately apparent. That I’ll take my cues from my doctors: if they’re not overly concerned, why should I be?

 

Avoidance is my best defense

Tomorrow I have my 3-month checkup at the Cancer Centre.  Except for a telephone call or two, April was a doctor-free month.  If I weren’t taking all my medications and feeling so tired, I could have almost forgotten I had leukemia. I certainly didn’t spend much time thinking about it.

With quarterly appointments now, I can just get on with life, at least as much as I’m able. I can forget cancer and divert my energy to doing what I enjoy with people I like.  I even pulled off a surprise birthday brunch for J., which was a huge success by my standards.  (Huge success = J. was shocked when her friends arrived bearing a breakfast feast, all prepped and stored at the neighbour’s house.)

Enough fun already; tomorrow I have to confront my reality. I have to hang out with the Cancer Club in the morning, find out how the hematologist thinks I’m doing, and hopefully earn another 3 months’ reprieve.

I wish I could tell you I haven’t been thinking much about this appointment but I’d be lying. I know the appointment has been on my mind increasingly as the date approached. But I kept up the nonchalance through yesterday, when I got noticeably quiet and distracted. Of course I knew why: it’s that familiar will-she-tell-me-something-I-don’t-want-to-hear anxiety. Yes, my avoidance failed me.

Looking back on it, I think I’ve been in distraction mode for a few weeks now. When I’m not dealing with a tough issue, I keep busy. I can’t say I’ve been doing anything especially meaningful or productive, just walking the dog more, cooking and baking more–the freezer is full, the neighbours are sated–finding more errands to run, and generally not sitting down. Once I run out of things to distract me, I’m wiped, and I’ve never slept better. J.’s right in saying that I need to slow down, but I probably won’t be able to until month end. (Oh, yeah, some other medical stuff before May is out.) At least I’m getting something done in the meantime.

I see how avoidant I can be and wonder how I could be a psychologist. Psychotherapy is about sitting down and dealing with the stuff we’re avoiding for one full hour at a time. Tackle those issues, head on, no escape. Of course, we can avoid stuff in therapy, but count on our therapists to call us on it. So come see me, and I’ll give you heck for not confronting Your Issues, and once you leave I’ll spend the rest of the day not dealing with My Issues.

We all need breaks from the upsetting stuff, I guess, and we could feel overwhelmed if we tried to deal with everything head on all the time. The judicious use of avoidance helps us all cope. We’ll talk about the perils of denial some other time. For now, if you’ll excuse me, I have a new recipe I need to try out RIGHT NOW.

dog with head buried deep in sand

What? Me, worry?

We are all a work in progress

Does anyone do all this stuff?

I received an unexpected compliment last week.  My good friend, W., and her husband graced us with a delectable low-sodium meal, after which W. commended me for how good I am about my eating. Aside the fact that W. and C. made it easy for me that night, I countered that W. has a commendable commitment to working out. We all focus our care for ourselves in different ways.

I’ve had to follow a low-sodium diet for over 10 years now. Any attention to sodium levels on nutrition labels will help you understand how challenging it is to keep one’s sodium consumption below 1000 mg daily. I miss olives and pesto and potato chips, not to mention pizza and Chinese food. Then I got cancer, and with it came a whole new set of guidelines: watch your fat intake, eat enough fruits and vegetables, preferably organic, and don’t even think of microwaving in plastic. Drink lots of water, exercise as you’re able, minimize your stress, be kind to yourself, blah blah blah.

I can’t be the only one who questions whether poor self-care when I was younger contributed to my current health problems. Before I learned to cook, I had many a dinner of ichiban noodles with soy sauce, butter, and corn, a veritable fat, carbohydrate, and sodium bomb. My sugar and fat consumption were through the roof for many years, but I countered that evil with running and the metabolism of youth. It doesn’t help me much to stew about these past transgressions, if I must call them that. Sure, I may be fairly “good”, if you don’t count the healthy portion of chocolate chips that didn’t make it into this afternoon’s batch of brownies, or the seconds of the delectable dessert I had at W. and C.’s place.  (Would W. still have made that comment after I ate the seconds? I’ll never know.)

As a psychologist, I have often talked to my clients about the importance of being reasonable with ourselves at least sometimes. Consider it “striving for mediocrity”. Of course we all know what we should be doing to care for ourselves, but if we don’t take the odd break from all those rules, life loses its joy and spontaneity.

To be honest, I really admire W. for better balancing caring for herself with enjoying life. I could eat better sometimes, or exercise more, or reduce my stress, or get to bed earlier.  But life is short, remember. Like W. and all of you, I have to have a little fun while I’m here. Hopefully, despite all my failings, they’ll still let me through the pearly gates.

So tonight J. and I are going for a planned spontaneous–remember, spontaneity is not my forté–pizza dinner with friends. I may go wild and order the Hawaiian, ham and all. Maybe I shouldn’t have diverted all those chocolate chips from the brownie batter this afternoon.  Oh well. There’s always tomorrow.

I’m always tired and sometimes cranky

I'm always tired.

        I’m always tired.

A few days ago, after my shower, I went to drain the soap dish of water, only to find it completely dry. That’s how I realized I had forgotten to use soap.  And no, I didn’t get back in. I managed the whole day on the rinse cycle. (No, I won’t tell you which day.)

These days, I sleep as much as I feel I need and then drag myself out of bed only to feel sacked soon thereafter. I’m slower to get moving in the morning–I used to be in the pool at 7 a.m.–and know my best hours are between 10 a.m. and 1 p.m. I feel like I could nap anytime, and sometimes I succumb. I’m tired just thinking about making dinner, let alone doing it. I’m so exhausted by day’s end that I actually sleep through the night, which, as a light sleeper and occasional insomniac, I never did before.

My fatigue started many years before I got cancer. In 1998, to be exact, two years before my polycythemia diagnosis.  I attributed the fatigue to overwork at a very stressful job, although it truly felt different–persistent, unrelenting, all consuming. In some ways, my exhaustion was validated by my medical diagnosis.

Soon after, doctors discovered a serious blood clot outside my liver, and my liver functioning became of concern. Guess what happens when your liver functioning is impaired? You get tired. And the medications needed to manage this problem are fatiguing.

And then I got leukemia, and with it more fatiguing medication.  But in the year before cancer, I noticed my exhaustion getting worse. Twice I got out of the shower without having rinsed my hair. (Yes, those times I did get back in.) Despite my impeccable driving record, I got into three minor car accidents. (In two of these, my car was the only object moving.) I decided to reduce my clinical hours because I just wasn’t managing my by-now-part-time workload.

When I was diagnosed with leukemia, it all made sense.  And even though the leukemia is being treated effectively, the fatigue remains. I’ve stopped working, and I plan out my errand runs and coffee dates. If I lose steam partway through the day, I don’t complete what I set out to do. If I know I don’t have it in me, I just stay home. And I haven’t even mentioned the recent anemia.

I’m not trying to claim my exhaustion is worse than yours, you with a colicky infant or a long, stressful commute or a packed daily schedule; it just may be different. Some have reminded me that I am getting older when I tried to describe the feeling. But then I see how much more than me my 85-year-old neighbour accomplishes in a day. Yesterday, someone suggested my tiredness might be due to the weather. I’ve been cranky since, perhaps because her comment felt minimizing.

But my exhaustion couldn’t compare to Jelly’s after a good off-leash chase of the big dogs. At least my tongue doesn’t stick out when I’m sleeping.

Dog sleeping with tongue out of mouth

This is what fatigue looks like.