Survivors of TBI and chronic illness rarely are out in public when symptoms are exacerbated. However, simply because the unpredictability of these symptoms it can still happen, but chance is low. They naturally avoid what makes them feel worse because every day is a balancing act to feel one’s best and just get through life.
For many, their entire bodies are giving them unreliable messages. People they once trusted lack understanding and education and walk away or the survivor avoids others for the same reason. These people become experts in compensating. They are the best resources to educate others.
TBI and chronic illness survivors are reliable
Survivors are always blamed for every minor infarction within a family and elsewhere. They are vulnerable and easy targets for others yet are the most supportive and holistic people in the world. They are aware, and more astute then ever before in their lifetime! Their situation brings them expert knowledge that should never be dismissed.
It’s first hand education, not old research from small fragments of many people. Albeit, research is important. These people learn to cope on many levels. Life is comprehensive with so many phases, and in this population everyone can learn from their experiences.
Every experience is different, as every brain injury is distinct and every life problem is discrete as we are simply unique individuals yet society lumps people in categories. These people are NOT complainers, they are EDUCATORS with or without certificates or degrees.
Fatigueoexhaustion (term coined by this author) is specific to TBI but may be more common then professionals believe in many chronic illnesses. With this level of exhaustion one cannot function at all without rest and sleep. Even at that, functioning is still limited.
Any interruption in the sleep or rest cycle limits one’s ability to function at all in any given day. Frequently, this causes an inability to be productive even with the simplest or smallest tasks. This is holds true with interruptions of concentration. When the energy is used the only recovery is by undisturbed rest and sleep. Sleep and rest is often a number one problem with most health problems. It’s the time the body heals and recovers. If you don’t get it, you don’t recover.
The question is “when will one have a good day?” It’s a vicious cycle albeit an unpredictable cycle. It is the belief that there are many good days on the horizon that gives one HOPE. One good day offers hope and yet disappointment, as a false sense of euphoria. You simply enjoy one day at a time and look ahead to better days.
Many learn compensatory strategies with time, and function at a higher level then expected because their own ability to adapt. Most of all they make excellent decisions albeit delayed. Trusting one who truly understands health problems often is another’s best resource.
Unfortunately, all too many (probably millions) don’t have innate ability to adapt and change, or simply the support of others, or even no resources and struggle far more than imaginable sometimes giving up! It’s for those reasons other survivors are trying to help to ease some struggling.
Cognitive skills improve
Poor judgement and decision-making improves with practice. They think through every aspect of problem solving because of their unreliable messages and signals their bodies and brains submit. TBI survivors are always under a microscope because others believe they are “wrong” or “unreliable”.
If others listen to what they communicate you might find them denying what they hear. The reality is that TBI survivors have clearer memories than many believe as they would become too confused if they didn’t tell the truth.
Rarely, will they be found in lies because they couldn’t keep fiction from nonfiction straight. In reality, they have enough to deal with to keep matters straight that they don’t get involved in nonsense by choice. It’s unfortunate that because of their vulnerability they easily fall prey to manipulation.
People that have endured health issues or have dealt with them on a personal level of friends and family are often the most caring, compassionate, trustworthy, and honest people in the world.
Remembering that confabulation is a form of filling in gaps of loss memory and is automatic and not under conscious control. The same holds true when incorrect words or names are used not and many other areas.
However, early after injuries and illness confabulation is perceived by others as lies. It’s not their problem, but the lack of education and understanding about injuries and illness by those who perceive things to be untruthful. In the end, it does reflect right back to the survivor … it’s always one’s problem and they are to blame! These survivors go through life taking the blame when others can’t take responsibility for their actions.
Perception and Deception
It’s a simple fact majority of friends and family do not research, do not become educated, do not become advocates, and are only temporarily supportive at the first onset of injury or illness. Their “happy” lives continue on in a sense of denial “you are the problem”.
So, if you feel very alone in this process of struggling to regain your life your perceptual abilities are not deceiving you. Don’t question your own perceptions.
Your perceptions are based upon your entire life experiences, not just the beginning of a life-altering change. Deception by others is a likely scenario, and not your perceptions being deceitful. Ask yourself if it is perception or deception?
Constantly working on answers and keeping healthy
TBI and chronic illness survivors spend a great deal of time struggling to find answers to improve. They are constantly working on ways to keep healthy, regain strength, and improve cognition. These survivors are unraveling the mysteries of brains, but are professionals listening?
Survivors provide details of daily lives, precise symptoms, and spend every day trying to figure out what works and what doesn’t. It is the HARDEST JOB ON EARTH! Ask any TBI survivor and each one will tell they would rather be working when life was structured and predictable.
There is no predictable moment or day with TBI. There are triggers, but reactions remain unpredictable! Everyone would love to have those predictable days return.
Research does prove that TBI can lead to Dementia, but it does NOT have to be that way … Fight back every day and retrain the brain from the start of injury! Let’s prove this to be a myth instead of a fact!
Dementia and other progressive cognitive disorders
Unfortunately those who live with dementia and Alzheimer’s develop a gradual (continued in Part 2)
- Long-Term Cognitive Impairment is Very Common Following Critical Illness (medindia.net)
- Study: Later retirement may help prevent dementia (bigstory.ap.org)
- Many patients suffer long-term cognitive impairment after critical illness (medicalnewstoday.com)
- Pediatric TBI: Will it Affect Your Child Later in Life? (scienceworldreport.com)
- The Invisible Brain Injury Project Surpasses $100,000 in Donations (virtual-strategy.com)
- U.S. Veterans Administration Fails to Provide Effective Treatment to Over 200,000 Veterans Suffering with Traumatic Brain Injury (prweb.com)
- Coping with Chronic Illness: Specialist Toby Dauber on Becoming Stronger and Living a Fulfilling Life (prweb.com)
- Environmental enrichment for traumatic brain injury patients may reduce shrinkage in brain (sciencedaily.com)
- A silent epidemic: Minor traumatic brain injury (sciencedaily.com)
- Beyond the stigmas of brain injury (brokenbrilliant.wordpress.com)
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