When I was first diagnosed with multiple myeloma in January 2012, my treating oncologist prescribed 100 mg of Dex every day for 10 days, then 5 days off, then repeat. I didnt understand it then but I felt awful. I felt like I was floating when I walked. My heart raced. I often felt dazed. When people spoke to me, I felt like they were speaking through a tunnel. When I selected my myeloma doctor, he cut my Dex dose down dramatically. It helped. Still, Dex made me, at times, a monster. I would drive down the street and if someone appeared to have cut me off, it was all I could do not to chase the driver down and start screaming. The four letter words just flowed from my tongue effortlessly. Arguing with my insurance company over coverage or co-pays were, well, lets just say heated. My poor children. I could be incredibly snarky. I started making them call me Mommy Dearest because I could turn into a raging mean person. And, to make matters worse, my meanness all seemed perfectly reasonable to me. My mom finally called my attention to it. Youre on Dex and maybe you should try to calm down, she said. Wow - she was right. The other side effect of Dex is that I hardly slept. I would be exhausted but instead of sleeping, Id watch TV all night, doze off for a few hours, then wake up and watch some more TV. I was turning into a zombie. I finally gave in and asked for a prescription of Ambien. It was a lifesaver. I needed sleep. It was the only way to recover and heal so my wanting to avoid another medication lost out to my need to get rest. These days, Im on 50 mg of Dex on Fridays only. That means that on Fridays and Saturdays, I am full of energy. I talk a lot. I stay up all night. And Im still a raging monster if I allow the Dex to take over. Not too long ago, another fellow myeloma warrior and I met up with a newly diagnosed patient. We went to lunch and right away, she warned us that she was on Dex. I saw a Dex person from an outsiders perspective. She was upbeat, talkative, and she could talk really super fast. That was me on Dex! Very interesting. We warned her that she needed to get a prescription for Ambien. But Ambien, besides being an amazing drug to help you sleep, makes one do some nutty things and not necessarily remember it. Ive heard stories of people driving and not remembering it (this is very dangerous and thank goodness I havent done that). Or eating and cooking and waking up to signs the next morning. Or, for me, it was sleep shopping. One morning, I woke up to check my emails and had several purchase confirmations. I didnt remember any of it. I purchased bra balls (these heavy duty plastic balls that one can put bras in and wash them with the rest of the laundry) and diamond earrings. Say what? Another night, I sent off a sweet and lovey text message to my boyfriend. Except I accidentally sent it off to my ex husband and didnt see it until the next day. Oops. So I came up with a few strategies for managing the whole Dex-thing.
- Get Ambien. Get sleep. Your body needs it.
- On Dex days, avoid caffeine. Shelf your desire to drink coffee or teas. Instead, opt for water, chamomile herbal teas, and the like.
- Yoga helps. Anything to calm and relax you is a good thing.
- If youre taking Ambien, stay far away from your phone and laptop. Sleep shopping isnt fun and if you accidentally purchase something really big, like a vacation, it can be really expensive.
- When you feel like screaming at people, remember those yoga breathing techniques. Use them often.
- Warn your family and close friends that youre having a Dex day and be warned. They might even call your attention to unreasonable behavior when necessary.
- Hide your car keys!
- Hot baths before bedtime are relaxing. This is good.
- If you really cant sleep, try starting a project youve been putting off forever. Its amazing how fast you can power through things. Dex nights are my favorite time to go closet purging. The only downside is that I often dont remember half of what Ive thrown out until much later.
- Be forgiving of yourself when you fail and learn to laugh at your behavior. After all, this is not an easy journey that we are on and we deserve lots of forgiveness.
about the author
Lizzy Smith was diagnosed with myeloma in 2012 at age 44. Within days, she left her job, ended her marriage, moved, and entered treatment. "To the extent I'm able, I want to prove that despite life's biggest challenges, it is possible to survive and come out stronger than ever," she says.
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