Sleep is never enough: The truth about living with chronic illness
Four out of seven days a week I spend the day in my house; the other three days are spent at doctor appointments and taking care of things like grocery shopping that I put off until we’ve had enough rice and beans and we’re out of che-chemaith (tortillas). Rice and beans are not the same without the tasty, soft, thin che-chemaith made by the hands of my O’Otham (people).
Every morning, the first thing I do is pain inventory of my body: knees, ankles, wrists and hands, elbows, forearms, shoulders, neck, back and brain. Everyday my strongest and most vicious opponent is my mind. I take effexor XR, an extended-release serotonin and norepinephrine reuptake inhibitor (“SNRI”), to calm the river of emotions that can overflow at any given moment and spill out over the invisible protective barrier I’ve built around myself the past two decades. I also take adderall XR, extended-release amphetamine and dextroamphetamine mixed salts, which tones down the static sound in my brain and alleviates the itch I always involuntarily scratch – daydreaming and hyperfocusing to the point I lose all track of time and space, leaving my body continuously dehydrated and starved. If I miss a dose of effexor, which I do often, by nightfall the moment I close my eyes and attempt to sleep, the feeling of electric bolts zap my brain; even prayer to ask the Creator for calm and telling myself what’s about to happen isn’t real doesn’t stop the hallucinations from taking over. Nightmares follow filled with four worlds, each its own supernatural realm of mostly evil forces. The most terrifying part of it all isn’t the nightmares but that I don’t know if I’m asleep or awake.
When I’ve mentioned the lack of sleep to others, it’s always assumed that I choose to stay up all hours of the night and perhaps I need to establish a night time routine because it’s just that easy. I keep quiet about the many chronic and mostly incurable factors that contribute to my lack of sleep: degenerative spine disease of the lumbar spine– I have a number of back conditions including severe facet arthropathy (arthritis in the facet joints) that degenerates the joints that become larger, compressing the spinal canal resulting in spinal stenosis which produces leg pain and symptoms of sciatica and as the facet joints degenerate they also allow too much space for the spine to bend forward which causes degenerative spondylolisthesis, one vertebrae slipping forward over another; a severe case of restless legs syndrome, a neurological disorder – the uncontrollable and overwhelming need to move your legs and body due to sensations like pulling and throbbing while at rest, especially at night while trying to sleep which in severe cases occurs more than twice a week (daily for me); complex post-traumatic stress disorder, also known as developmental trauma disorder and characterized by attachment disorder – for most of my life I have spent most nights wide awake and awoke terrified, experiencing emotional flashbacks of childhood and reoccurring trauma that keeps the (lack of) sleep cycle going, to say the very least; predominately inattentive type ADHD, a neurobehavioral disorder – side effects from ADHD medication and also as part of the disorder, cause sleep problems and I have an extremely difficult time being attentive to detail and learning, organizing, processing and retaining information which contributes to my depression and anxiety; major depressive disorder and general anxiety disorder, mental disorders – sleep problems can cause depression and anxiety, and depression and anxiety can cause sleep problems of which I experience the latter including sleep onset insomnia, sleep maintenance insomnia, unrefreshing sleep and excessive daytime sleepiness; fibromyalgia, recognized as a functional somatic syndrome, neurological disorder, and a musculoskeletal and connective tissue disorder – symptoms include fatigue, widespread pain, cognitive impairment (“fibro fog”), sleep problems, pins and needles or tingling sensations, nerve pain, irritable bowels, depression and anxiety to name a few; and last, but not least, rheumatoid arthritis, an autoimmune disease – pain, stiffness and swelling of the joints, most often affecting the wrists and small joints of the hand, and can cause inflammation that affect organs as well as loss of energy and appetite.
Every day my sons wake me up by pulling at my extremities – one pulls at my feet and the other at my hands. This helps with the pain and joint stiffness. A lot of the time, I roll over to the other side of the bed and onto one of the small humans I care for. Usually it’s my six year old son Nehemiah, fast asleep wrapped in my Pendleton blanket. His soft bristly dark brown curly hair, bushy eyebrows and long eyelashes remind me of a Thompson, particularly of my late father.
My nine year old son Havani is most always the first person awake, either being responsible for himself and brother making breakfast, dressing and readying his book bag, or still in his TMNT underwear, leaning his petite frame on the kitchen table, sketching the next edition of his superhero comics. He too reminds me of my late father. I’m in bed until the last possible minute to take my sons to school. That’s maybe 50% of the time as it’s not possible to ignore two little boys with ADHD (Havani also with fatigue, muscle and joint pain), nor is it possible to ignore that I’m experiencing brain fog and, depending on the amount of hours slept (typically two hours), it’s definitely a possibility I’m hallucinating. I’m usually on the couch, curled up and trying to get myself together to help my sons ready for school. This task is like herding cats. I’d say the average full-on fight and tantrum rate is at 90%. We manage to get everyone together in one piece, me with my cup of coffee of course, and out of the house, arriving at school five-to or five-past eight o’clock. So my day begins.
Once I return from dropping off my sons at school, I notice the sleep deprivation and the pain that settles into every crevice of my body. This is how it happens; this is how I forget to take the effexor. This is also how I gauge whether or not to take adderall. Am I sleep deprived to the point adderall does nothing for me and I end up falling asleep no matter what? Or, am I going to accomplish anything today that requires my full attention? Or, were the hours of sleep sufficient enough and I can skip the adderall because this thing I must do doesn’t require as much attention? The psychiatrist hasn’t believed up to this point that I’m in need of a higher dosage so I must ration out the medication, picking and choosing which days are a priority for attention and a double dosage. Restless legs syndrome (“RLS”) is on the top of my list of Things That Contribute To Sleep Disturbance. The constant kicking of my legs literally every second, slamming them into my bed and the uncomfortable and painful sensations that at times extend into my arms and rarely my entire body prevents me from sleeping more than a few hours a night. Effexor and adderall are currently the only medications I’m on. I used to be on: ripinirole, a dopamine agonist for treatment of Parkinson’s disease and RLS; gabapentin, an anti-seizure medication for treatment of neuropathic pain, epilepsy, RLS and off-label for fibromyalgia (“fibro”); amitriptyline, a tricyclic antidepressant for treatment of depression, neuropathic pain, fibro, migraine prevention and insomnia; and methotrexate and plaquenil, disease-modifying anti-rheumatic drugs for treatment of rheumatoid arthritis (“RA”), lupus and childhood arthritis. The first prescription drug I quit was amitriptyline, followed by RLS and fibro drugs, then shortly after, the RA drugs. A combination of side effects was too much for me to handle; I figured I’d rather experience symptoms of my illnesses than the side effects of excessive sleepiness, nausea, dizziness, and weight gain, not to mention the weirdness, all of which lead to more depression and anxiety, the most debilitating disorders of them all.
Depression, anxiety, ADHD and complex PTSD symptoms show up at any time. Any public outing or grocery shopping trip can turn into a state of restlessness, irritability, sensory overload, and triggering of emotional flashbacks. My mental disorders have severely impaired my physical, behavioral, social and cognitive abilities. Overtime, I have learned to live with my disorders, even embracing the isolation they have extended to me. I have learned myself and gave a nod to the debilitating nature of mental illness, in a way surrendering to it because I know the days I’ll spend indoors will (sometimes) be spent on working through my trauma, resting and recuperating so I can make it to a doctor appointment and attend to my children in an effective manner. The days I feel I’m productive are spent reading on trauma, yoga therapy and trauma, complex CPTSD, dialectical behavior therapy, mental health, public health, Indigenous stuff, motherhood, comics, museums and other important interests. I try to practice yoga as often as I can throughout the day as it helps me to be mindful, to breathe and stretch my body in poses beneficial to my muscles, joints and especially my back. I also make time to be creative, working on my atMissSemee website, blog and weekly publication, all encompassing of my talents in writing, culture, and advocacy for health, specifically mental health.
Living in isolation can be detrimental to my mental health, I’m aware of this. But I’m also an empath and introvert. When I am comfortable leaving the house and in comfortable and safe spaces, I can be a really great communicator and socialize easily. Once I leave these spaces, however, I’m exhausted of people and places and more than likely won’t engage with another person for weeks or months outside of my sons and mother whom I share a household. I believe being an empath and my spirituality as an Akimel Otham is directly tied together, more in a general sense than specificities. Empaths seem to know things beyond being intuitive, in a spiritual sense which is deeply rooted within me as an Indigenous person connected to all beings, especially the land. My dreams are typically profound, very detailed and reside within spiritual planes I’m sure exist, invisible to most. Health problems like lower back pain and chronic pain are a result of empaths being ungrounded as well as taking on the energies of others – something I truly believe, along with childhood and reoccurring trauma, has contributed to my chronic illnesses. As an empath and being neurodivergent, I am aware and at times unaware of people’s feelings and energies, often taking on these energies; in many instances I did not know how to process what was happening to me in very intense situations so I would project people’s feeling back to them without knowing what I’m saying and where or who it came from. I see it as verbally vomiting negative energies and forces.
Not everything is negative, not every person, place or thing is triggering, and not every day is full of pain and nightmares. I do sleep “well” maybe once or twice a week. Some days I feel like I simply exist, while others I’m elated to be alive to experience even the smallest joys of life as an Akimel Otham, as a mother and daughter, as a single tiny element within this vast universe. I’m often asked: how do you do it? I’m assuming it to mean, how do I function and live as a mentally and chronically ill Indigenous single mother? I do it by following my own mental wellness plan that includes mental wellness for my sons and I (in-home therapy and mentors), classes and training for myself in parenting, mental health and suicide prevention, and cultural connection to our O’otham him:dag (people’s way of life). And of course, I take lots of naps.
Se’mana Thompson is a mother of two sons and a native of the Gila River Indian Community. She is a blogger as well as a mental health advocate, seeking to preserve the cultural continuity for communities of color. Read more on her site, atMissSemee.