Fatigue and insomnia do not good bedfellows make

baby yawning with eyes closed

Sleep has been hard to come by these days. Soon after my final deadline was moved up, I started spending a good portion of the night stewing rather than snoring. I’d awaken in the middle of the night and take hours to fall back to sleep. My mind was consumed with thoughts of death.

Lack of sleep is not good for me, or for anyone, for that matter. When I’m exhausted, I’m an emotional wreck, and you know how crying makes me bleed. Chronic exhaustion affects all aspects of my functioning during the day. My concentration is shot, my balance is off, and I become a danger to myself. J. wisely hides my car keys, as she should.

We psychologists are stoic ones, hesitating to ask for help unless we really need it. Insomnia? No problem. I know how to manage that, as I’ve proven through past sleep disruptions.

Through this most recent upheaval, I kept to my usual wake-sleep schedule, I tried not to nap unless my body demanded it, and I maintained my usual bedtime rituals to ready my body for bed, i.e., completing my bathroom routine (yes, flossing included), taking my bedtime pills, and finally reading in bed until I was drowsy. Once lights were out, or if I woke during the night, I shifted focus to my breath, which often helps me fall asleep.

Despite my efforts, nothing was working. Out of desperation, I did something I never thought I’d do: I asked for help. Pharmaceutical help. My medical team obliged without hesitation. Within minutes, I had a prescription for a highly addictive anti-anxiety medication awaiting me at my local pharmacy. I requested the lowest dose possible, but I was advised to allow myself to use what I needed to benefit me.

I have taken one of these pills every night since they were prescribed, and on one occasion, with great hesitation, two pills. Some nights the medication is more effective than others. I was concerned I might feel hung over in the mornings, but my quality of sleep has improved greatly and I wake up feeling as refreshed as a chronically fatigued person can feel.

I realize I run the risk of becoming addicted to these pills, but this point in my life, does that really matter? So I am doing something I never thought I would do: relying on medication to help me sleep. And I’m trying to tell you without feeling embarrassed about it. If you were in my shoes, I know I wouldn’t judge you. Why am I always so much harder on myself? Maybe it’s time to give that up.

The pills are not a panacea, however. My sleep is still poor some nights, and even after a good sleep, I’m still fatigued, especially if I’m anemic. After a great sleep on the weekend, I needed a nap by 11 a.m. Countering the insomnia has not eliminated the fatigue; it has simply eased it until my next red-blood-cell transfusion.

I am scheduled for two units of little reds tomorrow. I envision an excellent sleep Tuesday night, and a perky day, or maybe even a week or two following. And my pharmaceutically improved sleep can only help. Now, if I could just take those little pills without shame….

 

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Choosing your words, and your verb tenses, carefully

As I move into my palliative reality, I’ve had several discussions with others on whether a sudden death is preferable to one that is expected. What are your thoughts?

Although my timeline may have changed recently, forcing me into fast forward, J. and I have had (the gift of?) time to plan for my impending death. We have been systematically sorting out some of the logistics of my departure. Why, just yesterday, I sold J. my car for one dollar, since I doubt I’ll need a vehicle up there. Then I promptly spent my unexpected windfall on wine gums.

When someone dies unexpectedly, loved ones may not have a chance to tell the person how they felt. There may be unresolved issues amongst the survivors, complicating their grief. Imagine a teenager who commits suicide after a fight with a parent, or an estranged brother who learns his sister has died suddenly, preempting any chance at reconciliation.

Well, there need be none of those unresolved issues with me, folks. Throughout my life, I have tried to make amends with others I’ve felt I have wronged. I’ve always tried to be honest with people, perhaps to a fault, but I’ve never intended to be mean. If I have crossed into meanness with you, and not addressed my behaviour at the time, I am truly sorry.

I have also tried to let those I am close to know how deeply I value them through my actions and my words. If I don’t get to all of you before I die, I’ll trust you have sensed my love and gratitude for our relationship. I have been truly blessed with a richness of friendship and love.

If you haven’t yet, take some time to tell your loved one what the relationship has meant to you. Forgive me for wanting to guide you through this process but I have had some experience with this lately.

If your beloved is dying, consider addressing only the good, and leaving out the bad and the ugly. If that person said or did anything to hurt you many years ago, don’t raise it now. You’ve had ages to address that wrong and chosen not to. I can attest that dying people are frankly not up to the confrontation; they’ve got other things, like hospices and graveyards, on their minds. I realize this may seem unfair, but I’d urge you to stick with the positives in those final exchanges.

When you choose your honest words with me, maybe you too could consider whether they will be hurtful. Now’s the perfect time to consider biting your tongue until it bleeds. Feel free to discuss your longstanding grudge against me with someone else, however. Perhaps therapy might help you resolve your ongoing resentment. Let me provide the name of an excellent psychologist while I still can.

Finally, if you want to tell me what I’ve meant to you, consider your verb tenses wisely. I’d prefer your addressing me in the present tense since I’m not dead yet. If you tell me that you loved me, I’ll wonder when you stopped, for example. Once I’ve died, past tense is fair game if my name arises. For now, I’m still here, and I can still hear you. Thanks.

Basset hound with ears, with quote "Just so you know, if you want to talk, I'm all ears."

What [inappropriate thing] would Annie have said?

Not long ago, my fourth blogaversary and 600th post passed without fanfare. I can’t believe I missed an opportunity to laud my accomplishments; I must have been distracted by other matters. I’ve told you all many times how grateful I am for your keeping in touch through my blog. Your reading has spared me recounting difficult news, especially of late, to each of you individually. I plan to keep you in the loop of my life by writing for as long as I can.

Lately I’ve been thinking about how my life is going to end soon, and how the story I’ve been telling over these four years will end with it. In my blog, I will continue to share my difficulty accepting my prognosis, the end-of-life decisions I have made, and other honest details of my decline. I imagine you may regret my oversharing, but you’ve kindly hung in there with me.

It saddens me that you will know the end of my story, but I won’t know the end of yours. I want to be there to see how your life turns out, but I won’t be. I think of all my beloved nieces and nephews who are nearing or already settling into adulthood, and I will miss watching their lives flourish. If they get married or have children or grow in other ways, I will not be there as witness. I’d like to think I’ll be cheering from above, but will they be able to hear me?

And if any of you experience hardship, I won’t be there to offer comfort, as you have done for me and J. so magnificently through my illness. I won’t be able to lend an attentive ear or drop off a lasagna or just be there, to do what good friends do. I’ll be leaving you high and dry.

When I was helping a client through grief, I’d often try to bring the person they’d lost into the room with us. No Ouija boards or empty chairs; we’d simply talk about the person. I might ask, “What would your (now-deceased) loved one say about your current breakup/job struggle/pregnancy?” Some clients thought I was crazy, but others took comfort in imagining how their beloved might have supported them through their struggle. Conjuring up that person’s voice when they were stuck helped them move forward.

And so I wonder, could I be that voice of love and support in your ear after I’m gone? If you are feeling low or alone or upset, could you imagine how I might comfort you? You know I’d want to be there, and I’d be overjoyed knowing I might help you muddle through, even after I am gone.

I realize that trying to enlist my help after I’ve died may backfire altogether. There’s the risk you may conjure up Loose-Lips Annie, who has blurted out countless inappropriate statements over her lifetime that she wishes she could retract. Hopefully not, though. I’ll try my hardest to contain my overly blunt persona, even from the great beyond. That is, unless I think you could really use a swift kick in the pants. Then all bets are off.

Basset hound on bed comforting person in hospice

I was hoping to skip the anger stage altogether

In and out character Anger raging mad, fire coming out of his head

I’ve written before about the many stages of grief. I’m a pro at denial, and encourage you to rely on it liberally when death is staring you in the face. I’ve acknowledged sadness, albeit reluctantly. Bargaining is my favourite. “If I don’t eat any more Big Macs, may I live an extra month?” I’ve even had moments of acceptance, and the calm that they bring, but they are fleeting.

I haven’t forgotten anger, but I’d planned to skip it altogether. Being angry seems such a waste of my limited time. It’s not a place I want to linger. I’ve had angry moments, but I’ve moved through them and tucked them away.

Then I received the good-bye letter from our professional college, of which I’ve been a member in good standing for 24 years. A few months back, I had informed the college that I would not be renewing my membership when it came due at the end of March. I had a brief exchange with an administrator who confirmed that she would ensure my request was forwarded. The process was actually easy, if heart wrenching.

The letter I received this week confirmed my withdrawal from the psychology register. It couldn’t have possibly been more impersonal. Since it’s not very long, I’ll reproduce it for you.

Dear Dr. Doe:

Re:    Removal from Psychologist Register by Request

(Hang on to your seats. It gets really personal from here.)

In accordance with Section 43(5) of the Health Profession Act, the College has accepted your request to remove your name from the register, thereby canceling your registration as a Psychologist in the province effective April 1, 2018.

We wish you all the best in your future endeavors.

Sincerely,

Dr. Registrar

For some reason, this letter made me screaming mad. I’ve been composing my bitter response all week. Please allow me to share it with you.

Dear Dr. Registrar:

Let’s ignore the fact that the Act you are referring to regulates many professions, and is in fact called the Health Professions Act. I thought you might have known this, but, oh well. Thanks for the bold-faced Psychologist, in case I’d forgotten my professional designation. I may be dying, but thus far I’m cognitively intact.

I’m wondering, though, are there people whose requests to leave the register you do not accept? And under what conditions are such requests denied? Considering this, I’m so grateful you’re letting me go to greener pastures, literally.

Your closing sentiment wishing me all the best at my future endeavors was the cream cheese icing on the carrot cake. I imagine your administrator did not inform you that I am ending my registration due to ill health. As such, my future endeavors involve trying to stay alive. I hope to be the best dying person I can be, but I don’t necessarily consider this an “endeavor”. You may want to consider that not all former registrants go on to bigger and better things.

Sincerely,

Dr. Annie Doe

I realize my anger is much more about dying than the form letter I received, and that’s why I’d never forward my response. But let me blame Dr. Registrar for a few more days, okay? I’m sure my denial will kick back in soon.

Saddy makes an appearance

Sadness doll crying

I have to be honest with you: last week’s posts were one big error of omission. I neglected to tell you how much time I was hanging out with Saddy. I realize I’ve been such a downer lately, and I didn’t want to drag you down with me. Also, I needed a bit of time to sort out how I was feeling before I shared it with y’all.

I’m afraid that if I don’t tell you about my down days, you’ll end up with a false impression of my coping skills. For years, I’ve looked around me and thought everyone dealing with cancer is functioning so much better than I am. All I could see were survivors who returned to work, or kept travelling afar, or simply lived a fuller life than mine despite the hindrances of their illness. I felt like a failure in comparison.

I realize now that we all have our tough days, and that we don’t tend to share those on Instagram. My life is no picnic right now, and some days all I can see is death looming. I am trying to live every day to its fullest, but last week I failed. I was obsessed with loss and dying. Don’t let my lighthearted posts suggest otherwise.

It started last Monday, when I received a call from a potential new client. At this point, it would be irresponsible of me to be anyone’s therapist. My health is unstable, my availability is unpredictable, and my mind is elsewhere. That, and my psychology registration officially ends this weekend. The office is closed, forever. I returned this lovely woman’s call, told her my practice was closing, and sent her on to someone else. Then I hung up the phone and I cried. At another time in my life, I could have helped her, but not now.

That day, and the rest of the week, I was completely overwhelmed with sadness. The long day at the cancer centre, and the troubling news from the doctor, didn’t help. I’ve been stewing about whether I’m going to survive the year the doctor initially predicted, and what my quality of life will be like if I do.

Cancer is crummy and dying is hard, and maybe I should stop trying to make light of what I’m going through. I don’t know if I’m trying to protect you or me from my reality, but it’s not working. Sometimes the upset and the fear and the depression take over.

But I can’t stay in any dark place indefinitely, because I’d be wasting whatever time I do have left. That’s where my wonderful support system steps in. I continue to receive frequent supportive texts and emails. Jelly and I enjoyed two wonderful PALS visits, where I could focus on bringing others joy. On Friday, I came home to a gorgeous hand-sewn dog quilt at my doorstep, my long-distance friend’s way of hugging me from afar. Saturday I loved every minute of my danish baking class, and we enjoyed a play with friends on Sunday.

Death may be looming, but I am reminded that I must not stop living yet. I’ve told Saddy she has the week off. Sometimes even the closest friends need a break from one another.

Saddy on couch with dog quilt

What happens when illness interferes with real life?

I’m bummed out. I admit it. I had a lovely day planned: tea with a friend I have not seen in ages followed by a PALS visit at the seniors’ residence. Jelly was especially pumped about the potential for couch time with the seniors.

Then I got a call from the lovely nurse practitioner at the cancer centre. I had had routine blood work done yesterday. Stephanie informed me I’d gone from kinda anemic to mucho anemic. I needed two units of blood pronto, i.e., the next day.

Looking back on the last few weeks, I am not surprised by this news. I’ve not been not functioning well, as I’m sure J. could confirm. I’ve had an increasing number of bad, i.e., utterly exhausted, days. On Monday, I was napping by 11 a.m.

I didn’t take well to illness interfering with my real life for the day. As the medical needs associated with my illness are escalating, I am more often cancelling my best laid plans with short notice.

With a chronic progressive illness, little parts of me are being chipped away over time. First there was my livelihood and the joy of helping others. Then all the evening social outings that fell well past my bedtime. Lately, even yoga is a stretch. (Ha ha.) And dog walks are fewer and farther between. Having the energy to cook or bake is often too much these days. Unfortunately, this list may only get longer in the coming months.

But some activities I will maintain if they kill me. Yesterday I contacted my PALS team lead and told her I would be bailing on our visit today. And then I wrote the lovely ladies at the PALS office, the ones who initially welcomed my volunteering despite my precarious medical status, informing them of my situation and asking if I could continue participating despite my unreliability of late.

I was overwhelmed by the responses I received. It may be heartwrenching to tell people that I’m dying, but it’s all the moreso to receive such warm and supportive responses. The sadness at the news, the compassion and caring and kindness in response, and the openness to my doing what I can with PALS until I cannot possibly participate any longer…I was deeply comforted by their words.

I will do what I can to maintain a life outside my illness, knowing that sometimes medical needs will have to take precedence. It won’t be easy, and I’ll resent days like today when my real life is interfered with, but I’ll deal with it. Not with grace, mind you. I did say I was bummed.

Ironically, after waiting 5 hours at the cancer centre today, I learned that, because of my complicated body, my transfusion would have to wait until tomorrow. Had I foreseen this turn of events, both Jelly and I could have had our planned visits. Jelly missed her couch time for nothing.

Tomorrow morning, after yoga, I will head to the hospital for a dose of IV iron followed by the two units of whole blood awaiting me. Hopefully, these interventions will help vanquish those 11 a.m. naps, at least for a little while. Jelly and I have a PALS visit this Sunday. Couches and cuddles await.

Variation on a blind date: Session #1 with a new psychologist

woman and man on date, woman looks bored while man is talking excitedly

I’m sure you’re all dying to know how my first meeting with the psychologist went last week. Rather than reveal the details of our conversation (boundaries, my friends), I’ll tell you how it felt to talk to her. I arrived there hopeful, knowing this woman’s training is with palliative types like me. Despite her expertise, the session felt off from the outset.

I was thinking afterward about how going to a first session with a psychologist is a lot like a blind date. Someone sets you up thinking you’ll hit it off. You set a first date and hope for the best. Sometimes it’s a match made in heaven, but other times you’re sorely disappointed. After that first date, or even five minutes into it, you ask yourself, “How could Ms. Matchmaker possibly think I’d like that person?” You have nothing in common, your world views are diametrically opposed, and you know you’ll never get that hour back.

Unfortunately, I’d liken my first session to a bad date. Although I don’t know how the psychologist felt about our time together, I imagine she questioned our future together as well. She made a few observations and interpretations that were so far fetched that I must have worn my disillusionment on my face, despite my efforts not to. I lost all hope when the psychologist suggested an intervention more commonly used with preschoolers or those on the autistic spectrum. As far as I know, I am neither. The conversation felt stilted, and I kept talking simply to try to salvage our time together. Sadly, our connection did not improve over time.

I do not blame the psychologist for the bad date; it takes two to tango. I know I am a difficult client. I am quick to judge, I expect an immediate and easy connection, and I want a sense that the therapist has the potential to understand me better than I understand myself. My hopes were quickly and profoundly dashed.

Then came that awkward moment: should we set a second date? Despite the obvious disconnection, the psychologist asked me whether I wanted to rebook. I hesitated a bit too long. I didn’t want to hurt her by suggesting maybe we should see other people. Instead, I took her card and fled, leaving the door open both literally and figuratively.

I am ashamed of myself for wimping out. Had I asked the psychologist how she’d feel if I dated one of her colleagues instead, I’m sure she would have facilitated an alternate referral. She’s a grown up, and she should respect her clients’ needs. I’ve had many clients over the years who haven’t taken to me. I know that if I take issue with their discontent, that’s my problem.

I may seek a private psychologist to talk to rather than contacting this psychologist for a referral to one of her colleagues. Call me a baby, but I’ve had more than my share of awkward conversations these past few weeks. I need a bit of time to get back on the dating horse. I know, time is the one thing I don’t have. Must you really remind me?

Dying comes with unexpected perks

You know how much I love to look on the bright side. If I look hard enough, I can always find a silver lining. Take dying for example: it may seem like a real downer, but it comes with a variety of side benefits.

The day Dr. Blood Lite gave me The News, he suggested hooking me up with the palliative team, even though I might not need the team yet. (Palliative? Who me?) Not one to turn down such a generous offer, of course I said yes. Little did I know that the following day, I’d get a call from someone on the Pain and Symptom Management team, which is quite the euphemism. I had no idea who she was until she explained, “We’re also known as the Palliative Care Team.” Why is the Palliative Team afraid of using its real name?

We set an appointment for the following week, when I’d be at the cancer centre anyhow. J. and I met briefly with a palliative nurse practitioner and learned more about her team’s services. We agreed that I didn’t need the team’s support currently, but would welcome their involvement as my condition progressed. I may be palliative, but I’m not approaching the pearly gates yet.

The other service at my fingertips is a real live psychologist. No sooner did I admit it might help me to talk to someone than I received a call, and scheduled a session within a week. This Friday, I will be hoping to connect well with the psychologist assigned to patients just like me.

You may be wondering why I’d see a psychologist now. No therapist can prevent my impending death, so what’s the point? In the past, clients have often shared similar sentiments with me. “Why talk about my ex-spouse/dead parent/severely disabled child since there’s nothing you can do to change my situation?” All the more reason to talk, I say.

Yes, there’s nothing this psychologist can do to prevent my death, but maybe I’d still benefit from talking about my grief. I’ve had a very tough few weeks, as expected. Imagine having to tell your family that your death is looming. Then imagine having to tell your friends, and your dog. (Jelly is taking the news especially hard.) Imagine knowing you are going to abandon your beloved spouse, who has cared for you selflessly through your illness. Imagine knowing you can’t do anything to ease others’ pain because you have caused it. Sure, I feel helpless and hopeless and despairing some days.

Maybe I’d feel a bit better if I could talk about these issues with a therapist.  Maybe I wouldn’t feel so down, or so scared, if I weren’t trying to manage my feelings on my own. God knows I could use more sleep; fatigue and insomnia are horrendous bedfellows. I may know how to help others through their grief, but I can’t be my own grief therapist. This psychologist has been known to need a psychologist on occasion. Like now.

I expect other potential support services for dying people will reveal themselves over time. It will be a comfort to know what’s available, and I’ll be open to anything that might help. So will J. I believe we deserve all the support we can get.

Quote: Grief is like the ocean. It comes in waves, ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.

Preparing for the end of my life: the bucket-less lists

If you’ve followed my blog for a while, you know that I abhor bucket lists. Once everything on the list is completed, either you have to add items or die. That’s why all the aspirations I’ve had in my life have never hung out in a bucket.

I am not without lists, however, and all the moreso since I received my bad news. First, there’s the list of things I probably won’t need to do over the next year. I can’t see myself needing any new clothes, and I probably have enough toiletries stockpiled to see me through. Think of all the time I can devote to other activities I find more pleasurable, like napping.

Then there’s the list of tasks hanging over me, ones I’d prefer not to do, and my long-neglected filing is only the tip of this iceberg. I have to notify the college that I’m not renewing my psychology registration this year. Tears may be shed, but the time is right. Then I have to cancel my library holds so piles of books aren’t waiting for me unclaimed after I die. I must get my taxes in order and be up to date on my paperwork so J. is not left with a mess after I die. I will make her a list of all I can’t do before I die, like cancelling my supplementary health care. I’m sure she’ll appreciate my organizational skills after I’m gone.

This leads us to the good list, that of things I really want to do before I die. Travel out of the country is not an option, as you know, but I fulfilled my wildest dream during our recent trip to Israel. Following my leukemia diagnosis, I’d never have thought I’d be stable enough to go so far.

Since travel is out, I need to think of other possibilities closer to home. So far everything I’ve come up with is food focussed. (I am no more surprised than you are.) Maybe one night we’ll go crazy and order in pizza or Chinese food. Maybe we’ll go out for lunch or dinner to a hot new restaurant in town like normal people. The possibilities are endless.

My food ventures will not be limited to restaurants, however. There are so many meals I want to make before I die, so many baked goods to perfect. Time is running short.

I’ve always been a lazy baker. My repertoire is limited to cookies, squares, and muffins, with the odd cake thrown in. I leave the finicky items for people who know what they’re doing.

I was perusing advanced baking classes in town because it’s never too late to acquire a new skill. Lo and behold, I came across an offering in which we’ll learn to bake danishes, croissants, and brioches. I’ll be attending knowing I’ll never bake these items again; I simply want to reach the pinnacle of baking once in my life. These days, that is reason enough for me.

I’m told I’ll arrive home with mounds (note I didn’t say “bucketfuls”) of freshly baked wares. Feel free to drop by for a treat later that day. I’ll be napping after all that hard work, so please leave me one cheese danish. Thanks.

Picture of two baked cheese danishes

Living while I’m dying

That last post was not easy to write. I don’t like having bad news, nor sharing it. Who wants to read a story with such a sad ending? It turns out many people do. Thankfully, only a few of those people LIKED my post.

The reality of my health challenges has not yet hit. I may have suspected bad news was coming, yet that suspicion didn’t temper my surprise. Shock is a common response to learning of a terminal illness. Grief is funny that way. I’ve worried about dying for as long as I’ve been sick, but having to face my own demise head on? That’s another matter altogether.

Now that I have the results of my biopsy, I feel unexpected periods of calm, as if I’m walking around in a fog. Every so often my panic erupts, but I shove it away quickly. Thank goodness for my defences, which help me from falling to pieces at times like this.

I even feel some relief at the news, as weird as that sounds. I don’t want to die, of course, but the threat of death hanging over me for so many years has been wearying. I’ve spent 18 years containing my anxiety about a situation I have no control over. If only I could sustain this relief.

How can my emotions be so chaotic? I think it’s because my body doesn’t feel any different today than it felt yesterday. I know that my health is declining–my biopsy results confirmed that–but my body has not registered these changes. I’m not in hospital, and I’m still able to go about my day. How do I accept that my life may be ending when I don’t feel all that sick?

When I am faced with a crisis, I often get stuck. I can help other people manage their stresses–that’s what a psychologist does–because the solution is always easier to see from the outside. But I’m on the inside this time, and I can’t seem to find my way out. Not worrying about dying is far easier said than done.

I was telling a friend how distressed I’ve been, and she wisely reminded me that focussing on death while I’m still physically well is a waste of precious time. She suggested I might as well keep living for as long as I can. J. has been saying the same for years whenever my anxiety about my health has escalated. My life overfloweth with very wise people. I should listen to them more often.

This afternoon, I had the perfect opportunity to stop feeling sorry for myself while Jelly and I attended a PALS visit at the university. The stressed students needed comforting. Jelly’s howls echoed through the hallways as we approached the visiting room. Once we arrived, Jelly kissed and cuddled dog-loving students for 90 minutes, in between naps. For those 90 minutes, I put my worries aside and remembered that I’m not dead yet.

If you catch me moping over the next while, please tell me to snap out of it. Sometimes an outsider’s wise perspective is all I need.

Several hands petting Jelly as she lays on the floor, head raised