Life Lost

The loss of life isn't anything to be taken lightly, whether it's naturally or by actions of one's self or others. I've shared before in previous posts how chronic illness warps our minds and perception, even in the realms of death. I was reminded of these effects when I heard about Mindy McCready's suicide last week and listening to the negative outlash toward her decision, I felt defensive of her. She endured a lot of pain and difficulty during her life, she was in a spiral of despair and although I cannot speak for her motives, I am not first led to believe her decision was of a selfish nature as many label anyone who has suicidal ideations, attempts or completion.

One thing I've learned during my journey with chronic illness and my time with friends of similar circumstances, is that we really can't judge what others are going through. This is primarily campaigned when discussing invisible illness but it's also in regards how life affects one's mental health, especially when chronic illness is involved. One of my best friends committed suicide, the pain of his chronic health issues became too unbearable for him. Although I deeply grieved for him, I couldn't be angry with him for his decision. I understood his decision too well, I too experienced health misery so great in my life that in a spiral of depression and pain, I longed for nothing more than peaceful death and for several years was suicidal myself. It is this personal understanding that I'm in favor of euthanasia, if solely of the individual's decision without manipulation or exploitation. I am not of the mindset that we are only given things in life that we are able to handle, there are experiences that way too heavy on the body and the psyche that are unthinkable and far too damaging. Those who are able to survive such experiences, I applaud them. However for me, there are several events that I would rather seek that eternal peace than to endure such experiences. Each person is different and so is each experience - but we can all empathize with the turmoil, the despair that another feels if only we try. Instead of blaming someone for their decisions or their desired intentions, let us be there for them and help them through the darkness the best we can.

I do not say such things to cast gloom on the hearts of others, but merely to remind us of empathy for the suffering others experience and to bring insight on their decisions. There are many examples of individuals who commit suicide as a manipulative exploit, to hurt others and for their own selfish gains. But there are many who are simply so hurt themselves or threatened with heavy pain - physical or psychological - that the only peace the individual is able to see is within death.
We need to support one another and any individual with suicidal ideations or plans most often are receptive to support, if only asked about what they're experiencing. Sometimes we miss the signs of how deeply hurt someone is, how close they are to the edge. We cannot blame ourselves if we miss those signs, but we can arm ourselves so that we may be better prepared.
Please visit Suicide Awareness Voiced of Education for information on suicide, warning signs, and ways to help and support someone experiencing such deep turmoil and perhaps together, we can bring more back from the edge.

Mere Exhaustion

Exhaustion; physical, emotional and mental exhaustion must be a mandatory symptom of chronic illness that we just seem to not be able to forgo no matter how hard we try. Sometimes exhaustion is inescapable, but we can combat it.

Physical exhaustion from the symptoms of chronic illness can leave us at times with very little energy, that even voicing words is too much. As a child, my parents began to understand my hand signs as a communication of my needs as talking simply took too much out of me. But that's not the only source of exhaustion that we've become oh so accustomed to in our daily lives.

Besides symptoms of the chronic illness, associated issues may arise that further complicate how we feel physically. For example, anemia and low B-12 is a common occurrence for individuals with ileostomies due to poor absorption of nutrients. Other electrolytes may also be out of balance that may affect energy levels.

I would be able to be so much more productive if after a day of work I didn't feel completely exhausted of all energies. I seem to have the most energy in mid morning to early afternoon - 9 am to 1 pm. But my energy begins to wane as the day draws on. I'm currently at my most healthy state since childhood, so it's not even only physical exhaustion that overcomes me but it's also emotional and mental. Part of it is because of my job, it by itself is mentally and emotionally draining. But it's also more than that. The stress of chronic illness can't escape any realm of our lives or our beings. Even when we physically feel well, the stress remains and will affect our emotional and mental selves in some fashion, even when we are coping appropriately as well. It's just a lot to bear.

Recharging ourselves as much as we can is a necessity. Taking a break to do something enjoyable or relaxing, meditation, taking a brief nap, talking with others to share daily stresses, volunteering, physical activity and similar actions help to recharge us and shed the stresses of the day so that we may focus elsewhere.

Depression is very draining on the psyche as it continually spirals down as long as the vicious cycle between thoughts, behaviors, and emotions remains constant and change is held at bay. It's depression's nature to lead us into a withdrawn state, so emotionally exhausted that we're almost incapable of reaching out to others, to maintaining communication. Merely speaking is too much energy.

This cycle must be broken though for us to push through and reclaim our lives. Such a simple, yet intensely difficult task of just changing our thoughts, behaviors or our emotions will make the difference to allow for a gradual climb out of the darkness. Anti-depressants, specifically in combination with counseling, are helpful in combating depression and this combination is most effective for despiraling the despair. Additional support resources such as support groups, patient hot lines, summer camps, activity groups are examples of some of many resources available. There are resources specific to illnesses as well as for care giving, mental health, and general.

Arming ourselves with a holistic approach to address each realm we are best suited for the chronic illness of exhaustion that accompanies all chronic illnesses. Keeping our energy levels at a manageable level will help us to keep our other symptoms in better check and will help us to cope with our daily struggles.

Secrets

Living with chronic illness and secrets seem to go hand in hand. Not everyone needs to know our business and for survival and personal protection, it's in our best interest not to be sharing our life history with just anyone. I don't believe it's healthy to be willing to share anything and everything with anyone. It opens you up for any kind of unnecessary hurt that could easily be prevented with discretion and judgment.

It's off putting when someone unprovoked dumps their medical history on others. It makes you stop and wonder what that person's end game is, what's their ulterior motive. It's just in bad taste. It's fine to share with others but we need to be careful what we share and with whom. My policy is that I only share what's relevant with those I trust and that's going to vary from person to person.

My husband is the only one I've dated that knows absolutely every single detail about my health, I'm as open with him as I am with my parents. I'm very open with my parents as they guided me through all my health issues and are able to relate to my issues and needs. Some past boyfriends new some about my health, some more than others but even the former boyfriend who I had plans with to marry, didn't know every detail. One must be careful even with persons thought to be trustworthy, sometimes that perception is merely a facade.

I'll freely discuss any aspect of my health with others in the health circles for support, education and bonding. One of my friends within those circles knows the most out of everyone I'm involved with in the health circles. I'm not avoiding giving details to anyone else, it just hasn't necessarily been relevant for discussion and of course not everyone is as easy to share problems with to commiserate with one another.

Another area though that requires discretion is the work field. There are so many employers who will use any excuse for getting rid of an employee, even if it absolutely has no bearing on one's work performance. Many employers, once unhappy with an employee, will begin to devise a strategy to be able to end the employee's employment with the company. Whether it's gradually increasing workload, adding new responsibilities and duties to build a case for reprimanding an employee to inevitably forcing a decision from the employee - quit or be fired. Not only that but other coworkers can be just as devious. My point is, even people you think you can trust, you can't necessarily trust and you don't want to allow others to use information you've volunteered against you one day.

It can very trying though at times to bite your tongue and not share with another person. I work in the medical field and although I don't have the same medical diagnoses as the patients I work with, I can personally relate with symptoms my patients report. Fatigue, stomach issues, diet considerations, medications, weakness, pain, fear and anxiety, PTSD, etc. They're all symptoms and issues that are typical among any group of persons with any chronic illness. Each illness will have their own symptoms and issues, but there tends to be a base set that each group can relate to. It is this commonality that makes it hard for me not to share my own experiences with patients. It's very frustrating and even insulting (although it's not the person's intention or even understanding) when someone tells you that you have no idea what's like to be sick, to have been in the hospital, to experience xyz, simply because you happen to look healthy. It makes me want to scream sometimes. I don't like to make assumptions about others because of just that. A person can look like anything, that doesn't mean there's nothing else going on - physically, emotionally, mentally, financially, etc.  You just don't know. I'm not going to compare my experiences to anyone else's, but I've been through my share of personal hell - I don't need to compare horror stories with someone else to feel better about my own or diminish others. I do like my experiences to be acknowledged though for what they are - that you aren't the only one with a history. But again, it isn't appropriate for me to share my history with my patients, especially not in any detail.

No matter how many secrets we keep, there's always someone who has similar, if not the same, secrets. And the saving hope is that we each find that person or at least a person or two that we can share all those secrets without fear. Because although not everyone needs to know our secrets, it's also not healthy to keep them all to ourselves without sharing with someone. What are some of your secrets?

Near Miss

I've addressed some of the ways chronic illness and near death can play havoc on our perception, fear of loss, and even our humor of individuals in Death Warp and in Warped, Skewed, Jacked Up...Whatever. A close friend and I frequently share health experiences with one another and share a common warped sense of humor and views on life and death. We both tend to be death oriented due to the altering effects of health and PTSD on the mind. I've noticed this is common among others in our health circles, it's a mix of coping with the tragic and reshaped perception of life and what once and should be, and all the near misses of death.

It's those near misses that we tend to become fixated on and that ultimately is what alters our perceptions; whether it's a near miss of someone physically dying and returning to life, experiencing and out of body experience, realizing death was drawing near, or simply surviving the unexpected. Each person's experiences are different, they can be incredibly peaceful or can be so terrifying that we either fear the moment of death or we long for the moment to be completed.

As a child I survived the unexpected more than once and was left with scars upon my soul and psyche so deep that I emerged with intense rage and hatred. However, during the year of high school when my health rapidly declined I was aware of death quickly approaching unless something dramatically changed with my health. I was so sensitive to this awareness that I said my goodbyes to my parents in case I wouldn't later have the chance. My doctor later told me that she never knew if I would live from week to week during that period. I had never experienced such a peacefulness and calmness as the time spent telling my parents goodbye. I've never had an out of body experience and I've never physically died, but in that moment I knew that death was a greater peace than anyone can imagine. Since that moment, I have longed for very little other than to experience such grand peace once again. The combination between this longing for eternal peace and my own drive for perfectionism, I am compelled to complete preparation for life events, including my own funeral.

Since high school my funeral has been planned out to the details of the itinerary, even the music to be played and letters to be given to specific loved ones, I have an Advanced Directive and a Last Will and Testament, and although I haven't purchased my tombstone I do have one picked out with what I would like engraved upon the stone. I have left detailed instructions for whomever I outlive in regards to my possessions, my funeral, and my legacy for any children my husband and I may have. Frequently I have compulsive thoughts leaving me wondering what it would be like to drive or fall off a bridge, drive or run into oncoming traffic, drive into a tree, etc. This is similar behavior to my close friend, who finds himself writing his own obituary to pass the time and considering those who have already passed on as being "lucky".

Few people can understand or even grasp why we are so death oriented, even my own husband frequently asks me "what is wrong with you" and "why are you obsessed with death". He simply can't relate on that level with me. Fortunately, there are many individuals with the health circles who are able to relate due to their own similar experiences. It is within these close ranks that we may find comfort and temporary peace together during our time toiling this earth as we wait for our eternal peace.

Painful Distrust

The betrayal of someone once trusted with your life is so significant it often is emotionally and mentally scarring. In Medical Angels and Demons, I shared experiences of blessings and torture with various medical providers I've had throughout my life. The betrayal of trust I suffered by providers at the children's hospital I attended as a child continues to haunt me to this day.

I am extremely suspicious of other medical providers until I am convinced that the provider is competent and has my best interests as a patient at heart. I am filled with regret, pain and rage when recalling experiences with these past providers and my trust with other providers has been tainted. My life would be completely different if I had a competent surgeon, if my care hadn't been allowed to be primarily directed by those 3 residents, if the emergency room team had been thorough and attentive. Had the surgeon listened to my parent's concerns my ostomy wouldn't have been placed on the wrong side allowing for my intestine to wrap around itself and other organs, if the emergency room team hadn't sent me home with the simple diagnosis of being a whiny child then the extent of dead intestine could have been prevented, if those residents hadn't been charged primarily with my care rather than the surgeon, perhaps more testing and treatments would have been completed for better, more directed care and treatment. The pain inflicted and level of distrust between these past providers is so great that it is deeply ingrained in association of the hospital and its affiliates as well. I would never be able to work for this hospital unless absolutely required to in order for survival. I would never be able to bring myself to taking any child of mine to the same hospital, even though it is a children's hospital that is supposed to be great with children and advanced in the care and treatment of children.

Never estimate the stupidity of this hospital or the individuals who work there.
A few months ago I suddenly realized that I should be aware of who the residents are that were assigned to me as a child so that I may prevent unknowingly becoming associated with them.
I can't even trust the hospital's medical records department to provide copies of, guess what, medical records. In my quest to uncover the residents' names, my requests for medical records from the children's hospital has been refused twice. The first time I was told that the request was illegible, even though the medical records staff could read my name, phone and address well enough to call and mail me a refusal. When questioned about the illegibility, I was then told that I must not have completed all the required information. My second request has yet to receive any communication whatsoever, even though the records department advises that records will be provided within 5-7 business days. I've resolved myself that I will be forced to go through my doctor's office and dig through my old charts in order to find the information. I would have done this originally but I thought it would just be easier to go through the hospital's medical records directly. How I was wrong. It'll be easier to sift through my multiple, overflowing charts at my doctor's office myself than to have anything sent to me from the hospital's medical records department.
I also think poorly of the hospital and its affiliates for charging individuals money to visit admitted patients, attend doctor appointments, or for patients to park at the hospital while receiving care. Yep, you read that right. I understand a hospital not wanting non patients or hospital visitors parking in the hospital parking lots, but there are other ways to deter illegitimate parkers.

This month I plan to start delving through the old records at my doctor's office to uncover the truth of the identities of those residents and protect myself from potential future harm for those individuals. I hope that those residents are now competent practicing doctors, but I would never be able to bring myself to trust them again with my health and life.
Sometimes we must make extra effort in order to protect ourselves and help calm our neurosis developed during chronic illness and medical traumas. This is a survival tactic and with such efforts, we are more apt to survive.