- Sex: F
- Data Quality: 1 star
- Pain: Some
- Fatigue: Most
- Sleep: Some
- Stiffness: All
- function: None
- external_stress: Some
- Stickman: most
- CFS:24y Dx
- FM:2y Dx
- Female, 40 years
- Frisco, TX
Meaning I am a experienced yoga teacher. Have taught hot yoga for 5 years,over 1500 classes and engaged with more than 10,000 students. I have worked personally with some professional football and hockey players from my area. Had to leave teaching due to illness May '12. Started a blog about my journey www.chronichell.com - please stop by and visit.
I experience moderate to severe fatigue, pain, stiffness and cognitive disorders on an everyday basis. These are always present although severity varies and shows itself through:
Nerve pain/responses, joint inflammation, myoclonic jerking, tremors, slurring, stuttering, confusion, forgetfulness, memory loss, extreme fatigue, poor concentration, reading comprehension, fatigue, weakness.
My diseases/disorders lend me wildly unpredictable regarding abilities. I am unable to plan my days as my symptoms vary each day in severity. I rarely sleep well or am well rested and each morning I awake, I feel as if I have been in a bad car accident or hit by a mac truck. I am severely impaired for the first 30 minutes to hour on arising and have to wait for my blurred vision, neck and hip stiffness, hand numbness and headaches to improve slightly enough to begin to get out of bed. I then work hard to assess my pain level, my cognitive function and my exhaustion - I may have the stamina to shower or not, make my way to the kitchen or not or make it to the tv room or not.
I do not know day to day how my body or mind will work for me and often have to take tremendous strides to get out of bed and follow basic hygiene procedures. Depending on the severity of my fatigue, pain, weakness – readying myself in the morning can take 30 minutes one day, three hours the next.
Walking to the bathroom only steps from the bed can leave me exhausted, I rest. Taking my clothes off evokes both muscular and nerve pain, I rest. I have at times walked into the shower stall and sat on the bench awaiting the water and realize I hadn’t turned it on. I turn on the water and wait for it to heat up, I rest. I work as best as my body will allow me and bathe. I prop my body on walls or sit in middle of floor for support as my arms feel too heavy to wash my hair and my legs too shaky that my knees tend to buckle. These acts alone can drain any and all stamina I have and send me back to bed. I have to rest, nap, sit down, lay down several times throughout the day. I work hard to muster the energy do something I love – water the potted plants, read with my 9 yr old daughter, love my pets. Doing much more than that is a far-fetched dream although I do have days that I can function for 4-5 hours straight once or twice every 2 weeks.
I have pushed through these symptoms for the past 2 years and as severity and frequency increased, I began making crucial mistakes in mine and others safety as well as the welfare of mine and other’s job and everyday living. I loved my work, my students, my days but can no longer carry on.
I began to forget meetings and classes I routinely attended/taught, affecting the wellness, salary and security of others. I have even forgotten/been confused about what day of the week it was and failed to report to work or showed up on wrong days/times.
I make life threatening mistakes while driving and am easily distracted with pain or “tuned out” or confused with signage. I no longer drive due to too many close calls.
I am not able to manage time correctly; many times completely “losing” time and have problems reading/comprehending calendars, writing and language. My working memory is one of my most frustrating symptoms, not only do I forget things but I have problems retaining information. I have to be reminded many times to start, complete or maintain tasks. I will ready myself to task and spend much time just trying to remember what it is I am doing. I completely forget conversations, commitments and processes although I have just made them or have done them many times over. What would take a normal amount of time to complete takes me 2 to 3 times longer due to muscle weakness, spasm, concentration and pain. I have trouble with simple math some days and other days am too drained to express language. I have read sentences, paragraphs 4, 5, 6 times over and failed to retain or comprehend the information.
When talking and teaching, I have had incidents of jumbling words, trouble forming sounds, slurring, completing thoughts and finding words. I have forgotten formulas, sequences, advice that I have repeated 1000s of times over.
The above experiences had me fearful that I had Alzheimer’s, although doctors doubt this at my age.
I often feel off balance and have had to break in the middle of public standing, sit down and gain myself which tends to be alarming to others and embarrassing to me. I lean on walls for support, have to guide myself into chairs with the use of my hands and arms.
The bones in my hands hurt. They throb. My penmanship has changed. Some days a pen feels as if it is too heavy to hold.
I feel as if I look unwell, as if battling flu. My husband describes it as looking at someone in pain. I may look pale, green or red in the face. I walk funny, stopping often. My eyes are red and lids droopy. I move slow and heavy. I sweat easily and may look like I just ran 5 miles. People maneuver around me differently when I am in public. I noticeably appear as if I don’t feel well. I am not a picture of health as I once was or have the strength to maintain decorum.
As someone who ran a business, mentored and helped others, worked with hundreds of people daily, always aware, keen and smart, involved – my decline was painfully noticeable.
My sleep, even with VPAP machine, is restless. Each night is a roll of the dice as I may not enter a deep sleep cycle due to pain, night sweats, numbness or myoclonic jerking. At a rate of 4 out of 7 mornings I wake feeling as if I have been hit by a mac truck or have severe flu. These experiences are common regardless of the amount of sleep I receive – whether I awoke through the night or slept like a baby for 8+ hours, using prescriptions. I have tried sleeping less and more, with medication, without medication, sleep cd’s, complete silence and darkness, meditation, awaken with alarm clock, natural arising, following good sleep hygiene, routine scheduling.
I find it both mentally and physically exhausting to maintain appearances, to actively listen and retain other’s conversations and to speak my thoughts. The sheer amount of energy I need to consume to get dressed, nourish myself and complete other simple tasks is exhausted and I simply don’t have any more to use for social niceties or manners, much less involvement. I do not plan meetings, dates or promise commitments as I have a hard time remembering to make these events/outings/etc. or how my body or mind will work on the given day. This diminishes disappointment, cancellations or waste of other’s time and the stressors associated with not keeping schedule. I sometimes become confused in the moment and I appear completely exhausted and uncomfortable the majority of time and look unwell.
Family has learned to come to my house to celebrate events like birthdays, Mother’s day, etc. as I do not have the strength to get out.
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