I do not sleep well. Ever. I have tried a myriad of meditations and medications, yet sleep evades me. It is 2:30 a.m. and infomercials are taking over the airwaves. My knowledge of everything Ginsu knives is overrated. (Pro tip: If you wait until the end they always offer two for the price of one.)
I have learned to navigate life in a constant state of exhaustion. This is not necessarily a good thing, but a necessary evil. I always do the best with what I have, and this is no different.
As a funny aside, I often nod off while writing. I wake up to find a line of zs or 54 additional blank pages. Perhaps I should count words and not sleep? Hey, whatever it takes!
I do have sedating medications that I take in the evening, as well as the option for a prescribed sleep medication. I fall asleep easily, but never sleep past 1 or 2 a.m. While pain accounts for some of my wakefulness, the majority of the time I just cannot sleep. After several unsuccessful attempts, I get up and go downstairs. At this time, I am reluctant to take any sleep aid as my days start early. My golden retriever is wagging her tail, and ready by 5 a.m., so I am, too. There is nothing worse than trying to function in a medication-induced stupor. Hence, I choose to be tired.
I also sleep-eat on medication. Bizarre, I know. Once I broke into a package of Jolly Ranchers. A dangerous thing to eat when you are on the precipice of sleep. Upon waking, I had zero recollection — save for two Jolly Ranchers knotted in my hair. Classy.
I have explored many techniques in vain attempts to find the Sandman. His presence evades me. I have come to understand so many with MS have similar struggles. The ultimate juxtaposition is that I am often so tired. One would conclude I would be able to sleep. Alas, that’s a far-too-simple equation.
Much of MS-related insomnia is associated with secondary symptoms as opposed to the MS itself. While lesions in parts of the brain associated with sleep can definitely play a part, so too can stress, spasticity, numbness, pain, bladder problems, and restless legs (RLS). I wake with deep pain in both thighs, as well as a leaden and painful numbness in my limbs. Additionally, I have lesions in my spine that exacerbate restless legs. I have had severe bouts of RLS that have sometimes lasted three days. Three days and three nights with no sleep.
As with our disease, treating MS-related insomnia is individualized. I rub a gabapentin-ketamine-lidocaine compound cream on my thighs after dinner. This helps mitigate the pain so I can fall asleep. I place my heating pad across them, and the two work well together.
I block time out of my day to just rest and watch TV, play Words with Friends, or read. Sometimes I will nod off, but more often than not I will just enjoy the downtime. I create an environment conducive to my needs.
I have learned the hard way not to keep Jolly Ranchers in the house. If they are missing, I probably will not remember taking them. I’ll check my hair.
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