Drastic Times Call for Drastic Measures

Winters are a stressful time at our house. 

Co-caregivers need to have fun a few kisses
Pain: Give me my husband back

Richard, (aka, my husband and @kreisler), has increased back pain due to many factors: the cold weather, the extra activities from the holidays, the increased stress due to the holidays and, of course, the denial that the pain has increased. Not to mention not remembering this happens Every. Single. Year.

For my part, my job is extra stressful from November through January.  Year-end projects are a nightmare and ever since getting appendicitis a few Januarys ago, my co-workers and I joke that I lose body parts during year-end.  Add in the stress of the extra activities (yes, I know, I bring on a lot myself with my wild ideas about holiday decorating), and, of course, the denial that the pain my husband feels has increased.  Not to mention not remembering this happens Every. Single. Year.

This year, we have the additional responsibility (which, yes, is stressful) of caring for Robert in our home. We haven’t yet experienced a full year of Robert living with us so we’re still working through routines, helping with his ADLs (activities of daily living), keeping him well so he’s not in the hospital or dealing with his hospitalizations (three since he moved in).

Oh, yeah.

I also flunked my stress test which meant having to do another, more intense stress test which really stressed me out.

Richard’s pain keeps him up at night and going months without a decent night sleep is stressful on everyone. He has tried sleeping pills which are not working; he has tried meditation which doesn’t make him calm or sleepy; he has tried staying up all day without napping but that only makes him crankier because he still can’t sleep at night. His doctor is going to have him do another sleep study but who knows when that will be scheduled.

Even though I can generally sleep through anything, his restlessness and periods of wakefulness throughout the night is starting to wear me out.  It is taking a greater toll on Richard, of course, but we both need him to get some sleep.

I wake up every morning knowing he is in pain (him bending over in pain and moving extra slow are a couple of clues).  I wake up knowing that he barely got any sleep yet I persist in asking, “How did you sleep?”

Either I am an optimist or a glutton for punishment but I have no idea why I ask this other than I just want to hear that he slept well – for once!

I want Richard to sleep.  I want his pain under control – after all, we went through a horrible ordeal in September due to something that is supposed to keep his pain under control.

It isn’t and I demand a refund!  (Insert stomping feet and screaming tantrum here.)

Okay, it’s not that easy but shouldn’t something that can possibly put his life at risk be more effective? We’re afraid to stop using the intrathecal pain pump (I say “we” because we’re in this together) because of the exponential pain he feels without it.

Yet, he uses it and still has extreme pain. And stress. And lack of sleep. All causing more pain.

It is a terrible, terrible cycle – one which I can’t seem to change but am wracking my brain for ideas.

Today, I took drastic step #1: I got a massage and a facial to deal with my own stress level.

Today, I also talked with Richard and told him I was taking a drastic step to see if it would help his sleep.  Because if he gets some sleep, his pain will eventually lessen which will lessen the stress we’re under because of this awful pain.

Drastic step #2:  Tonight, I am taking my pillows (and the dogs) to the room down the hall so that Richard has the best shot possible at getting some sleep.

It’s a drastic measure and not a permanent one but I do hope to hear a different answer to my question, “How did you sleep?” (See above re glutton for punishment.)

The answer won’t be different after one night.  It might not even be different after several nights.  But we need to try anything at this point.

The pain needs to get under control.

I’d love to hear what you’ve done when you’ve come to the end of your rope.  What have been your drastic measures?

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13 Comments on "Drastic Times Call for Drastic Measures"

Profile photo of Gail Kroll
Jan 13, 2014

Dear Trish? I know I may be way off board here? But is it possible that Richard has Sleep Apnea or has that been already ruled out? I have it. It’s not fun. But with proper equipment one can SOMETIMES get some sleep. Has that been the sleep test he has taken? God bless dear heart! I can only think of you all and wish for the best! Gail

Jan 13, 2014

Gail, thanks for your input. I did in fact have sleep apnea and Trish was getting ready to move rooms permanently and the CPAP machine just was not working. I finally went in and had the surgery where they opened the back of my mouth allowing the area that blocked and causes the sleep apnea to be ineffective, this also required the removal of part of the back of my tongue. I know it sounds extreme but I went from snoring like the 4:10 train going through Sacramento and waking our daughter four rooms away to not snoring at all and not needing the CPAP machine. As mentioned, the doctor is setting me up for a sleep study just to check and see how I’m doing. Regarding not remembering that my pain increases going into winter, I do it also increases during the change back into the warmer months (catch 22) I get hit coming and going.

Trish thinks I get up at night just to get up and that it’s something I control. I get up for several reasons, the lasix pills make me use the restroom almost every 1-1/2 hrs., laying on my back with my legs propped up (due to edema) puts extra strain and in my case “PAIN” on my back and the pain wakes me and at time I need to stretch, which if it’s takes awhile I will go into my office and finally my 5th and 6th loves (after family and mom) our dogs love to be right up against Trish at night and Taz stretches during the night and paws me right in my pump, face, male areas, etc and of course I wake up. I have a FidBid which is a glorified pedometer which also tracks sleep. Five days ago it was showing that I was up (out of bed) 4-6 times a night and restless 11 times, now it’s showing I’m up 12 times and restless 18-23 times and I don’t know why. I also would be interested in knowing you extreme, end of your rope decisions as well as your, I can’t sleep, I did xyz and it worked?

Thank you for reading and I look forward to any responses we receive.

Profile photo of Denise
Jan 13, 2014

Hi–I hope sleep came for both of you last night.

It strikes me that Richard keeps track of all that’s going wrong–how much pain he has, how many times he gets up at night, how little sleep he gets. What if he tracked what’s going well? Rather than constantly monitoring how much pain he has, what if he tracks how often he laughs, how often he smiles (or something else that’s positive)?

I used to have an psychiatrist and physical therapist (Elizabeth Lombardo) join me for monthly podcasts. We often spoke of how to manage chronic pain. She shared an interesting perspective: That much of our physical pain (including pain from injuries and disease) has ties to our emotional pain. She found that when clients resolved their emotional pain, their physical pain became much more manageable. Perhaps a therapist could help find ways to minimize the pain.

Profile photo of Denise
Jan 13, 2014

Hi–One more suggestion: If the dogs sleeping in the same bed with you guys disturbs Richard, could the dogs sleep in their own beds?

Profile photo of darciejane
Jan 13, 2014

Separate sleeping quarters, yes…..this should at the very least help Trish, which should help Richard too (less worry over her to compound his own issues). For Richard, soft music or maybe a favorite movie that you’ve seen many times, so you don’t even have to watch it, just listen with eyes closed.

I don’t have chronic severe pain, but I have some mild pain and I’m a lousy sleeper. I do try to keep the room in blackness even if listening to a movie.

Hope you both find ways to cope and deal with this.