It's all in the Core

Illness...such a broad term. It can mean so many things and can take on many different forms. It can constitute multiple experiences and sometimes it can be very hard to find the words to even explain what it is that one lives with. Each type of illness has its own pathway but many illnesses meet in a point of intersection--the person's core.

The core? What is the core? Physiologically speaking, the core is in the center of the person's body, around the abdomen and stomach. There are many exercise programs that focus on strengthening the core in order to provide stability to the rest of the body. The core can also be a metaphor for one's self-esteem, and in ancient eastern philosophy is the site of the solar plexus chakra, the place of power and inner strength. 

No matter what illness one lives with, at some point, the illness will interfere with one's core to some degree. Imagine living with chronic pain. One curls into a ball or fetal position frequently in effort to curtail the pain. The stomach and abdomen hidden from the world, closed off from possibilities, and physically weakened. Consider a person who takes so much medication that his/her stomach is in constant pain from the inability to digest such heavy substances. This person holds his/her belly and curses the knife-jabbing sensations s/he experiences. Other people may be so weak because of their illness or the treatment of their illness that exercise has become a vague memory.  Their stomach muscles may feel tired, fragile, or even non-existent.

One may wonder, "What's the big deal? It is just another body part." It can be easy to forget how intertwined bodily experiences are with sense of self. We are not separate body and mind but rather a whole person. It does not feel good to be hidden from the world; to be curled into a fetal position and in pain. This physically closed off posture may mirror an internal feeling of being distant from the external world; a metaphoric representation of feeling alone and perhaps misunderstood. It is a physical manifestation of self-protectiveness rather than fiery risk taking stance of confidence. One may want to open up (physically and psychologically) but fears the physical pain that s/he may experience in the stomach/abdomen, and/or the pain of being not understood or dismissed by others. It can at times feel safer to stay in bed with hand covering and hiding the stomach.

Self-protection is not necessarily a "bad" thing. With a comfortable balance there can be room for self-protection, and potential for openess, confidence, power, growth--a strong core. Nothing is black and white. One can learn to develop a keen awareness of self; an ability to know when it is safe to come out of the fetal position and take a small risk versus needing to stay tucken into oneself. This moment when it will feel possible to open up will be different for each individual. It is a process of learning to really know yourself well--it's all in the core. Listen to your gut. Take yourself seriously. Take your time to hear yourself and start off small. Good luck and be well.

Why is Everything so Annoying?

Ever wake up angry about silly little things or really anxious about aspects of your environment that are unpredictable or uncontrollable? It can drive you crazy. Why is it suddenly so frustrating that your boss eats a smelly sandwich everyday during a board meeting? Is this really something to feel such intense anger about? Is your extreme anxiety about whether or not you will be having drinks with friends tonight actually warranted? What is going on?

Did you ever notice that anger and anxiety about everyday things intensify when you are not feeling well? Have you also noticed that the less you talk about the feelings of unpredictability, uncontrollability, and fear that come with your symptoms or your illness, the more you experience anger and anxiety regarding other things in your life? Sure your boss may be annoying or certain things friends do may irritate you, but why are the feelings so intense? What is occurring is what psychologists call displacement. Displacement is a common defense mechanism where broadly speaking unwanted emotions stemming from anxiety producing situations are put onto more benign situations. So one with a chronic illness may be feeling extremely angry that after months of remission incapacitating symptoms have returned.  Acknowledging this may cause too much anxiety for the person and therefore the person may become extremely angry at something his or her spouse does instead.  Although there may be some real annoyance at the spouse, the anger is really not about the spouse. The underlying anger is actually about the experience of living with the illness.

Sometimes people come to an understanding of what their feelings are actually about but oftentimes they usually need help from others who point it out to them. After all if it was something easy for the person to acknowledge s/he wouldn't need the defense in the first place. Talking about the emotions that follow living with a chronic physical illness can be a very difficult thing to do. However, the benefits do outweigh the costs. Think about it. What will it be like if all the anger, anxiety, sadness, and other emotions stemming from living with an illness get displaced onto various relationships in one's environment? It can cause some serious problems with people's support networks, jobs, and home life. People who live with chronic illness do not need any additional stress; they need positive and functional relationships. Talking with loved ones about the emotions that living with a chronic physical illness bring up can actually make relationships with loved ones even more fulfilling and intimate. One doesn't have to feel alone with his or her emotions.

There are times when people in your life may have a hard time understanding your experience of living with a chronic physical illness. That does not mean your feelings are invalid or that you are being "dramatic." It just means that for whatever reason the person you are talking to is incapable of understanding you at a given moment(s). This does not mean you need to revert back to avoiding talking about your anger, anxiety, fear of uncontrollability, or unpredictability, it just means that you need to find somebody else to talk to. Support groups and psychologists are places where your feelings will be heard. You will see...the more you talk about the core source of your emotions the less you'll be feeling like if your boss eats a smelly sandwich at the board meeting you might need to punch him. Let it out. You do not have to be alone.

Limitations...

People who live with chronic physical illness are no strangers to the word "limitations." Although all human beings, including those who do not live with chronic physical illness have limitations, the limitations are usually not acknowledged or experienced as a reality until one has reason to do so. Just like with the reality of death, most people do not want to think about the reality of human limitations, but this is something that people who live with chronic physical illness cannot avoid. In fact, many people with chronic physical illness may be completely tired of hearing about their limitations. It seems as if just when it seems that the concept of limitations has been discussed to no end, a new angle on the topic of limitations arises.

Living with a chronic physical illness can be a constant process of adjustment. One may think that he or she has come to accept the life changes that come with living with a particular illness, shoving the reality of limitations into the background, until suddenly a new adjustment is necessary, exposing the reality of one's limitations all over again. For example, imagine being diagnosed with a chronic illness which requires one to alter his or her work schedule. One may feel the need to resist these necessary changes until he or she realizes the need for an adjustment and accepts the alterations necessary. At this point this person may feel good about his or her life situation and may experience his or her limitations as something that has been dealt with and now put aside. But what happens when after a year or two that same person's symptoms change or worsen? This person's current system of dealing with his or her limitations may no longer function as needed, making the person's limitations something that again needs to be addressed.

It is not easy for anyone, chronic illness or not, to accept that humans are not capable of doing everything. People who live with chronic physical illness inevitably have to learn to accept this reality through a fluid process. Learning to live with human limitations is not something that happens after a one time adjustment or event. Rather it requires an ability to be able to accept a constant evolution in how one's limitations impacts his or her life and in how one will cope with these changes. This is not an easy thing to do and can follow with an enormous amount of frustration, anger, sadness, and even depression. It takes incredible strength to just acknowledge and accept that another adjustment in necessary, and to then get to working on it. One does not have to go through this process of coping with limitations alone.

See the limitation, accept, adjust...but you do not need to do it by yourself! Express your needs to others (e.g. your employer, partner, family, or friends). Ask for help with the adjustment. Speak up...you are not annoying, a burden, or a nag. Your needs matter. Talk to a professional. You do not have to get through this transitions alone.

What Perspective are you Viewing it From?

Happy 2012!!! Welcome to a new cycle, a new year, and a new opportunity to let go of the past and prepare for change. Whether 2011 was great, good, ok, not so great, or simply very difficult and tough, there is something common in everyone's 2011--it has passed. Everything passes and there is always something to look forward to, even if what is coming may be more challenging than what has come to pass. For people living with chronic physical illness, 2011 may have been a time of adjustment, of pain, of suffering, or of remission. What will 2012 bring? There is no way to really know. The only thing that can be controlled in the immediate present is how one copes in the moment--what perspective one takes.

Perspective! Why would perspective be an important factor? How can perspective or perception of the past, present, and future impact one's health? Lets take two hypothetical scenarios. In one case, a person who lives with physical illness had a very difficult 2011. This person experiences the immediate present as no different from the past or the future and expects 2012 to be just as hard. Another person who also had a tiring 2011, believes that 2012 will be much better. Some may assume that the second scenario is the healthier of the two; however, these two scenarios are not so different from each other. Both of these people are basing their expectations of the future on their past experiences (i.e. the past was bad therefore the future will be as well or the past was bad so the future must be better). However, there is really no way to know, unless time is a prognostic factor in one's particular illness.

In both of the above scenarios, the people living with the chronic illness are depending on change in something external (e.g. the illness symptoms will be better or a new medication will help),as if they themselves are passive. Sometimes when a trauma occurs, such as being diagnosed with a chronic illness, people can feel passive or helpless, as if there is no control over one's life, and as if things just happen to them. Considering the role of perception and perspective, taking an active and internal approach influences one's focus to one of the present. Questions that arise are, "how will I cope with my uncomfortable symptoms right now?" or "I feel great, what will I do right now?" This perception allows one to accept the past as something that occurred and view the future as something that will be dealt with when it comes, and most importantly experience the now as a moment for active choices to be made. "How can I feel the best about myself right now and what decisions that I make right now will impact my health for the best in the long run? Right now I choose to eat a healthy diet. I feel great about myself for doing something nice for myself right now." There is no need to focus on your ability to maintain the healthy behavior in the future, since if you focus on maintaining the behavior in the moment it is much easier to do it and you will see that you can. Just this moment! Just for now! Say it over and over again.

2012 will bring with it many uncontrollable events; however, how one deals with those events is controllable. Deal with each struggle or even each joy as it comes. You do not have to worry about how you will cope forever, but rather stay with the how you will cope right now. Happy 2012!

Self-Doubt: An Affliction that Grows...Unless you Stop It!

Doubt...everyone has experienced doubt at some point in his or her life. One may doubt the existence of god, one may have doubted the loyalty of a friend, or the likelihood of a promotion. People also experience self-doubt at various times throughout their lives. Self-doubt is not a foreign concept to most; however, self-doubt can take on a more powerful and frequently present role in the lives of people who live with chronic physical illness, and can trigger old and long forgotten insecurities from the past.

Imagine what it could be like. A person may have felt confident in their abilities to perform the duties of his or her profession competently, as he or she has for a great number of years. Suddenly there are these physical symptoms that may make it difficult to complete tasks that were like second nature in the past. It is not unreasonable when one then starts to question, "can I accomplish my life goals" or in the immediate future, "will I be able to get through work, chores, or family obligations today?"

Self-doubt is a tricky and slippery affliction. It can spread quickly from one aspect of a person's life to others. For example if a person's physical symptoms have made it necessary to alter one's work routine, that person may quickly start to wonder, "well if I can no longer perform in this area of my life in the manner that I used to, maybe I wont be able to do X anymore either." An "I can't" mentality can sprout, sprinkling seeds of self-doubt throughout one's mind. The challenge is to attempt to persevere even in the face of self-doubt. Yes, one may be feeling doubtful of certain abilities, but that does not have to stop one from trying. Think about where the self-doubt comes from. Perhaps a job or an activity had to be altered to meet some new needs but how does that suddenly become generalized to all tasks in life? Is it possible to wonder whether or not these generalized feelings of self-doubt are unresolved insecurities from the past, triggered by some new alterations in life? Maybe some of the present feelings of self-doubt are familiar. The "I cant" may be coming from the very real challenges that are presently being faced due to living with a chronic illness, but it may also be activating experiences from childhood or adolescence where self-doubt was prominent. It may not even be a specific memory but a familiar feeling, a similar reaction in the body.

When experiencing self-doubt--the affliction that has the power to grow and grow, it is important to make time to sit down and reflect on where the doubt is coming from. At the same time one should engage in action--trying out the doubted ability. It will be surprising to experience how much one is actually capable of even when his or her mind believes the opposite. If you can no longer do things in the same way that you used to, it is important to try not be discouraged . Some things will change but others will not...do not generalize the outcome of some things to mean the outcome of all.

Self-doubt has the power to grow but it does not have to be an affliction that grows if you do not allow it to. Challenge yourself! Will you sit back and allow the weeds of the "I can't" mentality suffocate you with self-doubt; or will you deeply reflect on where this doubt is coming from, accept the changes that have had to be made in your life, and challenge yourself to achieve as many of your goals possible?

Acceptance

My hair is falling out. Acceptance. My body hurts. Acceptance. My joints are swollen. Acceptance. My heart is beating so fast. Acceptance. What are these things on my skin? Acceptance. I am so exhausted. Acceptance. What has happened to me? Acceptance. What has happened to my body? Acceptance. Who am I? Acceptance.

It is really important to check with one's doctor when strange, uncomfortable, or painful symptoms of a chronic illness surface. Sometimes the doctor can help! Other times there is nothing to be done but accept. What a task! People who live with chronic physical illness may at times wonder if they are the same people they were prior to being diagnosed. It is easy to believe that because the body changes the person changes too. This is not true. You are you.

Change is an inevitable part of being human and unfortunately change is not always pleasant. Think about all the things that have changed around you even in just the last year. Even when your body changes, you are still you...although you may feel differently than you did before you had your illness. You may at times be angrier, depressed, or more emotional. These are feelings and your feelings may have changed too as your body changed. Feelings do not equal you. Accept. Accept your feelings, accept the changes that you have no control over and try to find that love for yourself--the self that is still there; the YOU!

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?