Pain's Life? No My Life!

Doctors can objectively measure blood pressure, heart rate, change in the number of antibodies or cells, and many other indicators of health and illness. How can pain be measured? Health professionals can ask people how much they hurt on a scale of 1 to 10 and monitor subjective changes in pain, or they can simply ask one to describe how he or she feels, but pain cannot be objectively rated. Sometimes when a person is in extreme pain, physical changes can occur, such as changes in heart rate; however, the level of pain that may lead to bodily changes in one person can be higher or lower than the level that will result in the same changes in another person. We all have different levels of pain tolerance.

Pain is a complicated phenomena; the experience varying from person to person and influenced by sociocultural norms, gender, age, mood, levels of stress, and one's ability to cope with the pain, as well as other factors. All people at some time in their lives experience pain, but many people who live with chronic physical illness have to manage pain much more often than those who do not. Having to manage pain on a daily, weekly, or even monthly basis can be frustrating, exhausting, and can take a huge toll on one's psychological well being. It is easy to feel depressed and defeated, and to sometimes become preoccupied with the pain as if it has taken over your life. Is it possible for you to take over the pain and to control your life?

When many moments are spent wondering when the pain will stop, little time remains for living and enjoying. Shifting focus from the pain to something interesting and pleasurable enough to make you want to be thankful for your life...even for a life with suffering is more than possible. Buddhist monk Pema Chodron writes, "If we're willing to give up hope that insecurity and pain can be exterminated, then we can have the courage to relax with the groundlessness of our situation" (Chodron, 2005, p. 46). Surprisingly, if one stops thinking about when the pain will end and allows space for thinking about something else, the pain will end for that time. This is how meditation works. People can train their mind to focus on whatever they want it to focus on, while relaxing in the experience that they are in in the moment--even a painful one. This is one of the reasons why pain tolerance varies from person to person. And if someone is paying attention to something that he or she enjoys it will likely affect his or her mood, and in effect mood also influences pain levels. When a person is happy at a given moment, he or she is likely to experience less pain than if the same person is unhappy in that same situation. It is a chain reaction.

All that said, this is not an easy process. Although it is difficult to measure pain objectively, physical pain is real and it hurts. It takes a lot of courage and strength to stand up to pain, and this process itself can be painful. Pain can be very powerful but do not forget that you are even more powerful. This is one of the reasons why pain tolerance varies between different people...because people can control the pain. You choose how to spend your time--your life. It is your life, not the pain's!

Reference:
Chodron, P. (2005). When things fall apart: Heart advice for difficult times. Boston: Shambala.

Memories Lost, Moments Gained

What was the name of the place that I visited at least half a dozen times? You know, what's his name...the guy...its on the tip of my tongue. I think his name was Mark, no Mario, no Martin...yes Martin. What I ate for lunch yesterday....I don't know.

Some chronic illnesses, such as Multiple Sclerosis, are associated with various types of memory impairments or loss. Some illnesses may make it hard for people to retrieve stored information, and other illnesses, such as Alzheimer's Disease, may make it difficult to retain newly learned information as well. Depending on the specific chronic illness that a person is living with, the reasons why some people with chronic illnesses may experience memory impairments are not always clearly understood. Forgetting well-rehearsed information or not being able to remember things that you may have just learned can be extremely frustrating, regardless of the source of the memory problems.

It is easy to become upset or even depressed about not being able to recall things that you would have easily been able to in the past. It can feel like you are losing aspects of your life or your self, and it can even be experienced as chaotic at times. Sometimes one may even become so preoccupied with making sure to remember an event that an entire moment, lasting from minutes, sometimes hours or even days, is spent focusing on not losing anymore memories. It makes sense; it is understandable...memories are retained but are any new memories and experiences gained?

Letting go of the fear of forgetting is one of the biggest challenges for people living with chronic illnesses associated with memory loss. It is sad when significant aspects of one's life disappear--temporarily or permanently. However, new experiences are always being made in the moment and you do not want to miss out on them. For example, right now you may be sitting with your beautiful baby niece and maybe you cannot recall what she did the last time you saw her, but you are seeing her now and she is looking at you and smiling. Experience. Life does not end with memory loss, but rather present moments are acknowledged as impermanent, making them potentially appreciated and cherished more than they ever were before.

Today may be forgotten but for today have fun, and since tomorrow you may not remember the happiness of today, recreate joy tomorrow by doing something you really love. You do not need a memory to know what makes you feel good, you just know it, and memory for doing things (like riding a bike) almost never disappear. When a memory is lost, focus on what you can gain...it makes the littlest moment matter. Perhaps every minute of every day would not be so important if you were not so worried about forgetting them. You could just sit, close your eyes and remember all the happy times that you have had. Well if you cannot remember them, then just get up and do what feels good. As for all that practical information that you wish you could remember...write it down. Yes that stuff is important but it makes no difference where it is stored (i.e. brain or blackberry). The present matters. What are you doing right now (besides reading this)? Are you worrying about memories lost or are you gaining a moment?

Sun-kissed

Oh no...summertime! The sun is hot and burning. It is the season for the beach and sun-bathing. It is the time of the year when most people are really excited. Why would anyone say "oh no?" Well, have you ever met anyone who has been diagnosed with lupus?

Lupus is an autoimmune disease that for unknown reasons causes one's immune system to attack the body's own organs. Any of the body's organs may be affected but most often the joints and skin. According to the Lupus Foundation of America, one half to three fourths of people with lupus have adverse reactions to the sun, which may result in an itchy rash, lesions or sores, and which can aggravate other lupus symptoms, such as joint inflammation and fatigue. This adverse reaction, or photosensitivity as it is called, follows from a complex process where the UV rays, primarily UVB rays activates a particular cellular reaction.

Time to gear up to go outside. Here we go: start with at least SPF 70 on your face and entire body. Don't forget to get the areas between your fingers and your feet. Grab that large sombrero-like hat, and find that loose-fitting long-sleeved shirt that you are praying you will not sweat through. You think I am joking? Nope. This is what people who live with lupus have to deal with when the sun is high and mighty, unless they are feeling risky on a certain day, and trust me there are many people who might be feeling risky. And even sometimes one may take all the precautionary steps and they get home at night and--oh darn there is that itching and burning red rashy thing on the little part of my wrist that I did not cover, or maybe even on parts of the body that were covered. Yes this is more than annoying and sometimes the frustration is enough to make one say, "hey I love the feeling of the sun on me and I am going to tan in the middle of the day" or maybe even less extreme, "oh so I forgot to spread the sunscreen on today, no big deal." Sometimes people may just want to forget that they have to deal with this annoying chronic illness and want to enjoy the sun like everyone else.

Initially when one is diagnosed with a chronic illness there is an element of denial. Eventually, most people who have been living with the illness for a while come to accept the changes that have come with the disease. However it is not always so black and white; even people coping with a chronic illness for years may fluctuate between denying the adjustments that their illness requires of them and accepting that they can live a high quality life despite having to deal with a chronic illness. As for lupus, think about it...who should really be sitting in the sun without sunscreen or even with sunscreen if it is midday. We all know about skin cancer and even early age wrinkles. Avoiding direct sunlight does not mean you can never enjoy the sun or the outdoors, but rather you can experience them and well. Options: you can sit and tan at noon for 2 hours and risk a week's worth of suffering or you can cover up, wear a hat, and sit in the sun in the late afternoon and know that the odds of any negative reactions are really low. You can take in all the beautiful surroundings, like the trees or the ocean or the people walking by, and you can feel alive as you observe all the life around you. And if you have lupus, you probably know that sometimes you are still more likely to get tanned faster than everyone else.

You don't need a sun burn, a sun rash, or a sun scar, just get a quick sun-kiss. Allow the sun to kiss your skin and then run away leaving it begging for more. Maybe if the sun is nice and kind to you, you will come back another day and let it kiss you once more. And just like people will treat you the way you allow them to treat you, so will the sun, so protect yourself. At most you will be left with a tiny red mark on your skin; a sign that you were smooching for a little too long. You just have to see this all in a different light... and not U.V.

Thank You Followers

I have recently noticed a few new followers and want to thank you for your interest in my posts. I appreciate all of my followers and welcome any of your thoughts or comments, or anything related that you would like to share. I hope my posts continue to interest you and feel free to contact me if you have any suggestions for topics you would like to see me write about. Thanks again!

Misunderstood

There can be a lot of people in the lives of those who live with chronic illness and yet oftentimes people with chronic illness can feel very lonely. Before being diagnosed with chronic illness many have very active social lives, many friends, and make frequent plans or activities. Sometimes the ability to manage this aspect of one’s life changes drastically when one’s health is compromised. There may be new experiences that a person living with a chronic illness might need to deal with, such as extreme fatigue and pain, frequent doctors’ visits, tedious exercise or dietary regimens, or lots and lots of rest and quiet time. These new and usually unwanted pieces of one’s life take up a lot of space, a lot of a person’s free time, and sometimes their not-so-free time as well. There are moments when someone’s loved ones may not understand the necessary adjustments that have been made and could be offended, feel abandoned, neglected, or dismissed.

At times it can be hard for the person living with the illness to explain to their loved ones why they have been spending less time with them. For example, having to describe to many different people the adjustments made in his or her life as a result of the illness may be a reminder of the illness, that the person may not necessarily want to be reminded of in a given moment or larger time period. Imagine saying over and over “it is not that I don’t want to come out tonight but I am really exhausted and in a lot of pain.” The person suffering from the exhaustion and pain probably feels really bad that they can’t go out and may even feel guilty for not being able to do so, and repeating that over and over to their loved ones could be frustrating. Sometimes people living with a chronic illness may become so tired of repeating the necessity for the adjustments in their life to others that they may just retreat and no longer offer any explanations to others, in hopes that after a certain point it is just understood that their lives have had to drastically change. However, providing information to loved ones about why major changes in one’s social life have occurred does not always mean that loved ones will understand. Regardless of which of the above scenarios is played out, people living with chronic illness can at times feel lonely and misunderstood when their loved ones react to their adjustments with disappointment, hurt, and anger. The life changes that have been made, which certainly affect the person with the illness’ social life are never made to disrupt one’s relationships, but rather are made to help the person with the chronic illness maintain a good quality of life, as much health as possible, and happiness. This may seem selfish, but the alternative may be worse—exhaustion, deterioration of health, and maybe even resentment towards the loved ones who may desire more than it is possible for you to give at a particular time.

To ask one’s loved ones to learn to understand what it is like to live with a chronic illness is a huge undertaking. It is a struggle because the loved ones are not experiencing what the person with the illness is—they can only try their best to know what it is like. Some loved ones will be better at it than others, and some loved ones may not be able to adjust to the adjustments that the person with the illness has had to make, which has affected his or her relationships. All that can be done is communication. Nobody wants to be misunderstood. If you feel ready to try to explain to your loved ones what it is like to be living with your illness and why it has affected your relationships, then it is best to do so. You won’t feel so lonely if your loved ones can understand. If they do not then you accept it, know that the changes that you have made in your life are misunderstood, and hope that at some point they can accept you. More importantly you must accept the changes in your life that have now become part of you.

Lifestyle Changes are Not Transient Phenomena

Oftentimes folks living with a chronic physical illness are forced to make multiple lifestyle changes in order maintain a certain quality of life. For example, some people living with chronic illness experience excessive fatigue and pain, and require extra rest and sleep. Others, because of certain symptoms such as inflammation, or vitamin, hormonal or enzyme imbalances, may have to change their diet. Most of the time, people living with chronic physical illness, benefit greatly from a decrease in their daily levels of stress, and in particular chronic stress. Therefore, sometimes it may be necessary to lessen one’s work hours or take on fewer responsibilities. Although these lifestyle changes, as well as others, do not cure a given illness, they can significantly improve one’s quality of life and occasionally even decrease the frequency of uncomfortable symptoms. Everyone is affected in different ways and it is important for each person to try various things and find what works.

It can be easy for people experiencing the effects of the illness from an outside perspective, such as a person’s family members, spouse, friends, or coworkers to overlook the importance of maintaining these lifestyle changes. Sometimes after seeing a significant improvement in a loved one’s health, some people may want to believe that the illnesses that their loved ones have been coping with are gone. There may be expectations for the person living with the illness to return to his or her previous manner of living. For example, someone may have increased their hours of sleep, decreased some work hours, and incorporated a light exercise regimen or meditation into their weekly schedule. Following these changes, this person may have more energy, less pain, and his or her activity level may resemble his or her level of activity prior to the illness. This person, in addition to his or her loved ones, may be so overjoyed with feeling well that these lifestyle changes may be easily forgotten. Sometimes when people feel better they might want to “take advantage of the time” and try to do a lot of what could not be done when they were not feeling well. Despite the pull for one to use his or her energy to engage in as much as possible, it is important to remember the experience of feeling better came because of one’s choice to take better care of him or herself.

Lifestyle changes are not a one shot deal. Sometimes they are cyclical; when people make them and then feel better, drop them and then feel worse, and pick them up and try them again. However, lifestyle changes are most effective when they are no longer lifestyle changes but rather become lifestyle…period. Even though lifestyle changes can at times remind the person with the illness and their loved ones, of the illness itself, they can also be reminders of control over the illness, active coping, and well-being. What is your lifestyle?

The Fear, the Feared, or the Fearless

Ancient Chinese Shambala philosophy teaches the path of fearless existence—warriorship. Shambala does not promote aggressive war, but rather describes warriorship as not being afraid of being who you are. Part of facing and not running away from who you are is tolerating being the you, who at times may be experienced as not having a sense of security. We all want security: security of shelter, security of relationships, or security of health. What happens when security is not experienced? People become afraid. People fear that things will fall apart and people scramble to change the situation that they are in, until things feel secure once again.

This fear arises when people run away from the internal stability of who they are. Sometimes people forget that being who they are is enough or fear that it will not be enough, and they latch onto external things for security, such as a house and relationships, and even our physical bodies. It is a radical thing to even say that we do not need our physical health. It can be a devastating experience to lose one’s physical health and to live with suffering. However, it is not true that losing your physical health means losing who you are—your self. Who you are is always there. Do not be afraid to be just that. Even if you are living with a chronic physical illness, your core being, your self, is still enough…even if at times it can feel like you are losing your mind.

There is the fear; your experience of being afraid, which can hold you back from contentment and peace or when acknowledged can thrust you into a position of warriorship. There is the feared; not sufficiently satisfying yourself or your loved ones, disappointing, suffering, pain, dying. There is the fearless! The fearless acknowledge their fear and go beyond it.

Chogyam Trungpa (1984) describes a Shambala warrior as someone who is soft and hard at the same time like a wooden cup covered with layers and layers of lacquer. If the cup is dropped the lacquer may crack but the wooden base remains. Our bodies may crack, our minds may crack, but our inner core is solid…if we are not afraid to accept that. How will you use your fear?

Trungpa, C. (1984). Shambala: The sacred path of the warrior. Shambala Publications Inc.: Boston.

Let Go Let Love

People who are in happy relationships enjoy doing things for their romantic partners. Sometimes things as simple as doing the laundry, making a delicious meal, or surprising one with a favorite movie can put a great smile on a partner's face. However, it is important to remember that in healthy relationships, partners do not love each other only for what they do for each other, but rather they love each other because of the people that they are. Yes, what one does is a part of who one is but people are so much more than a list of their actions.

It can be easy to get caught up in what others do for us and what we are "expected" to do for them.What happens when a relationship gets stripped of "do and does" and who one is--their values, beliefs, history, being--simply remains? Sometimes people who live with chronic physical illness get to experience what happens in romantic relationships when they at times cannot "do" for their partners what they are used to "doing" for them. Two people may have interacted with each other for many years in a routine way. For example, both wake up in the morning, one makes breakfast and the other makes the bed, both go to work, and one then prepares dinner, while the other does the laundry. Or take an example not based on chores but rather leisurely activities--every Saturday one partner goes to support the other at a sports event or a musical performance. Having a chronic physical illness can disturb whatever the individual pattern of interacting is for a given couple. Suddenly one partner may have to lay in bed all day, unable to participate in daily tasks or not being well enough to venture out to the weekly sports event. This disruption in the person's sense of agency and alteration of their role within the partnership can evoke many uncomfortable feelings. Some people may feel a sense of disappointment in themselves for not being able to engage in their daily tasks, leaving double the amount of work for their partners. Others may feel guilty for not being able to participate in fun activities with their partners. Some may feel frightened that their partner will stop loving them because their lives have been greatly altered. There is an infinite amount of feelings a person may experience with respects to their relationship with their partner after having to change their daily routines due to chronic illness--these just scratch the surface.

So what happens? Some people living with chronic physical illness find out that maybe the relationship that they are in is not the right one for them. These people may discover that their function as a "doer for" is what has been loved, rather than all of who they are. Sometimes these people may also initially blame themselves for not satisfying their partners enough to keep them around. Hopefully they eventually learn that it is NOT their fault. Nobody wants a chronic illness and nobody wants to feel unable to do things for themselves or their loves ones. In other instances, people experience being loved in a way that they never knew could exist. These people are told that it does not matter whether or not they can do the things they used to do or go to the places that they used to go. They are told that all that matters is that they are alive and that they are with their loved ones. These people see that even though at times it can be frustrating for their partners to take on more responsibility, overall their partners can take pleasure in caring for them. It is easy to forget that caring for a loved one can grant people a sense of satisfaction and happiness that far surpasses the happiness that comes from receiving.

It is important to never belittle the frustration and pain that comes from having to adjust to living with chronic physical illness. It is also important to remember that if you have a chronic illness it is not your fault. Let your loved ones care for you. If you are in a relationship where your partner makes you feel bad about what you are dealing with everyday, then maybe its time to rethink that relationship. You deserve to be loved and cared for, and you will realize that for someone who truly loves you, allowing him or her to care for you is the biggest thing that you can do for them.

Existential Concerns and the Emergence of Wisdom in Young Adults Living with Chronic Illness

Typically people in their early adult years do not think about the health consequences of activities such as flying in an airplane, lying on a beach, having sex, or running on a treadmill. Young adults who live with chronic physical illnesses, however, do. For example, flying in an airplane becomes a risky endeavor for people with illnesses that cause proneness to blood clots. Young people living with lupus need to stay out of the sun, making an enjoyable activity such as lying on a beach an ordeal involving sunscreen, hats, and lots of shade in order to prevent inflammation, rashes, and fatigue. Having sex, for people who have certain chronic physical illnesses can cause fear of spreading the illness or concern of becoming pregnant, which may pose an entire host of health complications. For people who have rheumatic illnesses, running on a treadmill can cause inflammation of the knees or ankles, and severe pain. Whereas it is not until older adulthood that people begin to think about the fragility of the human body and of life, young people who live with chronic physical illness are in a position where thinking about these existential topics may become a regular act.

For many young people living with chronic physical illnesses, a swollen knuckle can set off a series of thoughts. “What if my illness gets worse; what if this is a sign that there is something else wrong; why is my body failing me; why is this happening to me; I am too young to have these symptoms; will I live for just as long as if I didn’t have my illness?” The experience of coming face to face with mortality and with the imperfections of the human body at a young age may at first seem terrifying. Oftentimes people may want to push these thoughts away because they may be too overwhelming or depressing. Other times people may feel that there is no point in thinking about these things if there is nothing that can be done to change them. There are also occasions when people accept the reality that human life is not eternal and that life in the moment is extremely meaningful, and it is embraced in a way that it has never been before. When this occurs, there can be peace.

In his theory of psychosocial development, developmental psychologist and psychoanalyst Erik Erikson described how people pass through a series of stages throughout the lifespan. In each stage the person must negotiate between demands made by others in their environment, society, and their own innate needs, and successful resolution of a stage follows with the attainment of a “virtue.” According to Erikson’s theory, people in their 20’s and early 30’s are usually in a stage where their primary concerns are intimacy versus isolation. The very last stage of this psychosocial theory is integrity versus despair. During this stage people either come to terms with death and make meaning of their life or they are left with a sense of despair. With integrity comes the virtue of wisdom—an ordered understanding of life and relationships. People usually experience this stage when they are over the age of 65.; however, it is possible for young adults who live with chronic illness to achieve “integrity” and “wisdom” at a much younger age than anticipated by Erikson’s theory of psychosocial development. Yes, according to Erikson, if an early stage is not successfully resolved it will impact the resolution of later stages and therefore jumping to the last stage before having time to tackle the earlier ones may pose some problems…but that is for another discussion. The point is that even though daily activities which may pose health consequences for young people living with chronic illness can terrify and depress, and which you would never wish upon anyone, can at times also allow for the emergence of a sense of meaning-making, peace, wisdom, and acceptance far beyond one’s biological years.

Chronic Illness and Attachment

Imagine—you are living with a chronic physical illness or condition for a year or two and you are doing relatively well. You take medication daily, your physical health is stable, and you have never been hospitalized. You read about support groups and ways that you can maintain a good quality of life by eating right and exercising. You never really forget that you have a condition, but after a while you feel that your life can be normal and that everything is going to be ok. You experience months of symptom-free living, you feel good and strong, and you are proud of your healthy lifestyle.

It is possible to imagine how anyone having the experience just described would feel confident in the future of his or her health and secure in the relationships with his or her self, with loved ones, and with the surrounding environment. Somehow it is easy to overlook how the progress of others living with the same illness affects the sense of security and identity just described. It does.

Now imagine that this secure and confident person hears about another individual who has the same chronic illness, and who unexpectedly ends up in the hospital with complications. This person admitted to the hospital was also someone who was doing “relatively well,” who was also stable on medication, and who was maintaining a healthy quality of life. How does hearing this news affect the person who is still functioning quite well despite having a chronic condition? Some could say this person may feel lucky that they are not in the hospital. Others may worry about their comrade. Many may experience fear; a rattling of the security previously felt and a plunge into a chaotic unpredictability. This unknown does not only alter the confidence in one’s health but may also destabilize a previously secure way of relating to one self and others. Attachment theory can help shed light on what occurs when one’s sense of security is threatened.

Attachment theory describes how emotional bonds to others are formed in early childhood between a child and his or her parent. Broadly speaking, when a parent is dependable, consistent, and responsive to a child’s physical and emotional needs, a sense of security develops in the child. Children with secure attachments will be upset when a parent leaves but experience enough confidence in their emotional bonds with their parent that they feel confident that the parent will return, and therefore are able to relax and explore their surrounding environment until they are reunited with the parent. Children whose parent is persistently emotionally unavailable, emotionally overinvolved, rejecting, neglectful, or abusive are likely to develop insecure attachments. These children will either have no interest in a relationship with their parent, or will excessively cling to their parent and become extremely distressed in their parent’s absence. Following these insecurities, these children may feel less comfortable exploring their surrounding environment and new relationships. It is postulated that the attachments formed in early childhood usually persist in later life, so that a child with a secure attachment style grows into an adult with a secure attachment style.

You may be wondering what this has to do with chronic physical illness. Imagine—a person living with chronic physical illness, who has felt secure in his or her relationships for the majority of life, is suddenly hit with the unpredictability brick. At first you wonder, “will I die, will my friends abandon me, will I disappoint others?” After some time you experience a period of fairly good health and your foundation of security in relationships allows you to maintain trust in the strength of your relational bonds. Then one day this person finds out that someone with the same condition becomes very sick and is hospitalized. There is an earthquake. The secure attachment style starts to crack. This person starts to wonder, “what if this happens to me” and “anyone could go at any time, I could go at any time.” The previously secure emotional bonds begin to feel more tenuous and fluid. The sense of stability and consistency, originally provided by a parent during childhood becomes threatened. Maybe some react by isolating themselves, or others may fluctuate between clinging to their loved ones out of fear of losing them and becoming very angry with their loved ones for not always being able to be perfectly present. A person who once had a secure attachment style may appear as someone with an insecure attachment style. Trauma—trauma shakes up one’s sense of security in self and in others—the trauma of living with chronic illness and witnessing what happens to others with the same illness, is no exception.

Does one ever really lose their secure base or is it temporarily challenged in the face of trauma? Perhaps people with a secure attachment style who are diagnosed with a chronic illness cope better and maintain healthy relationships with more ease than people with fundamentally insecure attachments. Can the original attachment style really change or does the person living with a chronic illness at times struggle with so much that their underlying security is temporarily forgotten and with time once again remembered? I would think that the attachments formed early on with one’s parents are the most powerful bonds experienced in life and that a secure emotional relationship with the parent will remain and carry a person living with chronic illness through difficult times. On the other hand, I do believe in the possibility of change through new relationships, such as the change that occurs in psychotherapy when previously insecure styles can evolve into more secure ones. That is the positive spin, but if that can occur it could be possible to conceive of the opposite occurring as well—secure to insecure. Maybe in the end it does not really matter whether or not the attachment style really changes, but rather the importance lies in understanding the experience of what occurs to one’s world and one’s sense of security in relationships with self and others when living with a chronic illness.