Physical findings & functional limitations: Neurological Disorder, gene variant HLA-DQB1*0602, Narcolepsy, Cataplexy, Sleep paralysis, Interruptive REM, Excessive Daytime Sleepiness, sleep apnea,”insomnia". Cataplexy causes me to fall to the floor when muscles weaken due to emotional triggers or interruptive REM cycles.
Mental acuity limited to EDS causing mental fogginess, poor memory, confusion and lack of concentration or focus. Ruminating thoughts in effort to control loss of focus/memory, or fear of failure. Repeat thoughts aloud to self to keep on target.
Anxiety and panic attacks create shortness of breath, a tingling sensation and an overwhelming sense that the world in closing in on me, leading to feeling sick to the stomach, nervous ticks, counting, twisting hair or scratching, crying. Also become depressed and have low self esteem due to lack of contribution or completion of task, work or activities. I feel ashamed of myself and hide my disorder to avoid judgement & criticism and rejection. Get sharp pain in the eye: residual from Shingles.
When standing, I take comfort in holding onto something or leaning against a wall or furniture because my body aches to sit or lie down.
When walking, I take breaks to catch my breath and to allow my body to stop over heating, retaining water, swelling, or flush/tingling feeling.
When lifting some boxes, I collapsed and fell down the staircase and sprained my ankle. I am very nervous about stairs now.
When bending I need to hold onto something with one hand. Or someone picks it up for me.
I get cramps in my legs and feet fairly often and must stretch them out for relief of pain.
Personal care takes a back seat to my child’s needs. I shower a couple times a week, shampoo once a week and try to brush teeth everyday. I forget to put on deodorant. Often I wear clothes from previous day as it's the easiest & quickest way to get dressed.
Bowel & bladder: I am regularly constipated. I have on occasion wet the bed, or had an accident with diarrhea which may be related to sleep paralysis. A couple times nearly soiled myself in public.
Household maintenance is minimal. I cook enough for caloric intake. Cleaning is minimal. Shopping is done when absolutely necessary as it is overwhelming. Meal planning is on the fly. It's impossible to be organized; filing is too overwhelming.
Seeing/Hearing: Hypnogogic Hallucinations are real to me; I can not distinguish between real life and the “night terror”. I see and hear the dream as though I were awake. i am terrified to go back to sleep and try to stay awake with the lights on to prevent further torment. I have been attacked by these evil hallucinations with the lights on. I pray for relief.
Speaking: Words are said differently than what was planned in my head. I may think “put it in the fridge” but it comes out of my mouth ” throw it in the trash”. Or I can’t speak at all due to loss of muscle control from cataplexy. I can think to say something but my mouth won’t move. It’s similar to complicated migraines. I can’t speak when I have the aura and pain with the headache and I get paralysis on one side of the body.
Concentrating: Focus is limited, poor concentration, thoughts jump or are chaotic, I worry about failing or falling or both.
Sleep: 13-18 hours a day. Usually 11 hours minimum needed. Bed at 9 pm, awake at 8 am. Then nap in the morning and/or later in afternoon. Naps can be up to 2 hours each. If I work a shift more than about 4 hours my body breaks down, flu like aches, sore throat and I become ill with a cold. I worry & stress alarms will fail and I will over sleep.
Breath: Sleep apnea, CPAP would be helpful. Sometimes exhale more than inhale, shortness of breath when panicking.
Driving: I pull over and sleep if I need to, and rest or sleep before I drive anywhere in effort to prevent sleep attacks.
Public transit: I have missed my stop or gotten lost because I fell asleep. I have been so sleepy that I have taken a ride from a stranger not concerned about my welfare. I will lie down on the street if I need to stop, rest or nap.
My physician referred me to the program "Bounce Back” which helped with coping with Narcolepsy and depression and anxiety/panic attacks.
I have also sought chiropractic help for Vertigo and neck pain from sleeping in a chair in the staff room etc.
I have seen a psychiatrist for medication to cope with stress and anxiety, suicidal thoughts. And participated in many groups. I attend weekly 12 steps coda meetings and completed 2 Freedom Session programs and Genesis Process step study as well as a CR 12 step study, Boundaries courses, Divorce care and Betrayed Hearts support groups. I try to cope as best as I can and look for alternatives to medication or drug therapy as I do not want a dependancy or addiction (Ritalin, Modafinil). I use behavioural and cognitive therapies to help alleviate my chronic condition with good sleep hygiene and avoid caffeine.