Fear Factor

I was reading an article from The Mighty about guilt and chronic illness. You know what I mean…that niggling feeling you have about being sick. No, I’m not going to write about guilt, too (I’ve looked at those thoughts previously, here and here): I’m writing about fear.

Firstly, you need to know a little about my background, so the abridged version:

  • I was 40 before I heard about fibromyalgia.
  • Previously, I had worked in hotels, on cruise ships and in casinos.
  • At 34yo, I started a Bachelor of Laws while working, at the casino, full-time.
  • I was able to ‘practice’ law for one whole month before the debilitating purple wave took over my life – FIBROMYALGIA!

I have just celebrated the 25th anniversary of my 21st birthday (yes, I’m 46 now) and, as my ankle and leg get better, I feel like I have a little more control (understanding?) over my illness.

119-fibro-fogSo, what am I going to do?

I have been sick (and not working) for 72 times longer than I was actually practicing law. I can truly say that I have forgotten more law than most of you will ever know (you know what I mean!) but I am scared $#!%less – anyone else feel the same? How are you dealing with it?

 

Guilty as Charged!

After yesterday’s post Guilt: the Gift that Keeps on Giving, I thought I should try to assuage some of those feelings and point out this article to you:

Seven Strategies for Reducing Guilt

By Bruce Campbell

Guilt is a common reaction to CFS and FM. Some people blame themselves for getting CFS or FM, thinking they might have avoided becoming ill if they had lived differently. Other people feel guilty about no longer contributing as they used to, while others lament that they aren’t the spouse or parent they wanted to be.

If you experience guilt associated with CFS or FM, what can you do to ease the burden it imposes? Here are seven strategies used by people in our program.

Adjust Your Expectations

Guilt is often triggered by perfectionism, holding ourselves to standards that don’t fit our new capabilities. Rather than adjusting our standards to meet our new limits, we may measure our performance against either the person we used to be or the person we had hoped to be. We may say things like “I have to do things perfectly” or “I have to be the best at everything” or “My kids deserve everything from me that other children get.”

You can reduce guilt by adjusting your expectations so that they match your new level of functioning. How do you do that? One place to start is by doing a reality check on your expectations. On the left side of a piece of paper, list all those things you no longer do but think you should do, for example, fix elaborate meals, drive kids to their activities or earn a living. On the right side, write your judgment of whether the expectation is realistic.

 Reframe (Change Self-Talk)

Part of the process of adjustment is changing our internal dialogue or self-talk, so that it supports our efforts to live well with illness rather than generating guilt. One person in our program says that she used to chastise herself for taking a nap. Her self talk was “you are weak and lazy for having to rest.” Now, when she goes to take a nap she tells herself, “I am helping myself to be healthy. I am saving energy to spend time with my husband or to baby sit my grandchildren.”

Similarly, when feeling tired, you can say “This fatigue is not my fault; it came with CFS. So I don’t need to feel guilty about not being able to do everything I used to.” Or: “I didn’t ask for FM, so why should I feel shame when it prevents me from doing things.”

You can change your habitual ways of thinking about yourself to make them more accurate and more friendly. For step-by-step directions, see the article Taming Stressful Thoughts.

When Feeling Guilty, Shift Your Attention

Even if feeling guilty is inevitable, we can control how we respond when feelings of guilt arise. One person in our program said that when she feels guilty, she asks herself, “Is this feeling productive?” In some cases, the answer will be “Yes.” Guilt can draw our attention to ways in which we have failed to live up to our standards and can motivate us to act differently. (See next strategy.)

If the feeling is not productive, however, it may be better to respond to guilt by turning our attention elsewhere. As another person wrote, “It’s better not to go some places in your head, so I’ve learned how to control my own thoughts.” Another said that when she is caught up in feelings of guilt, she tells herself things like ‘this isn’t my fault’ or ‘these feelings will pass as long as I don’t allow myself to act on them’.”

If You’re Wrong, Apologize and Make Amends

Guilt can be helpful if it motivates you to take better care of yourself in the future and to treat those around you with more care. One person said that if she does something to hurt her husband or her children, like lashing out at them verbally, she apologizes.

If being undependable bothers you, you can use guilt over canceling out on commitments as an impetus to be more consistent in pacing. Another person said, “I was so embarrassed by canceling out on people that I promised myself I would do better. That commitment motivated me to be more consistent in pacing and to become a more dependable person.”

Educate Others (Within Limits)

In addition to adjusting your expectations for yourself, others expectations of you will have to change as well. People in our groups have suggested several strategies for doing this. One is to educate people about CFS and FM, emphasizing that they are long-term conditions that impose significant limits and require adjustments of the person who is ill and those around her. One person in our program gave each member of her family a booklet on CFS from the CFIDS Association and asked them to read it as their birthday present to her one year. The process of educating family and friends is usually a gradual one, often taking several years.

Learn Assertiveness

Another strategy for reducing guilt is to be assertive, standing up for yourself by stating what you will and won’t do. A person in our program says that her family now accepts it when she says “I am sorry I can’t do that.” She tells about a family outing she and her husband went on with their adult children. At the end, her husband invited the children over to their house. “In the past,” the woman says, “I would have gone along with it, seething inside at myself for not saying anything and at them for not knowing I couldn’t do it.”

Instead, she told everyone that she needed to rest and she suggested that her husband spend the evening at one of the children’s homes. So that’s what the family did. The woman took a nap at home while the rest of the family went to a daughter’s house to watch a movie.

Practice Relationship Triage

A final strategy is to reevaluate your relationships, practicing what we call relationship triage: making explicit decisions about whom to include in your life, concentrating on the more valuable or necessary relationships and letting others go. You may decide that some people will never understand your condition or accept that you are ill. In some cases, you might choose to end a relationship. For relationships you decide are necessary, you might limit the frequency of contact.

Guilt: the Gift that Keeps on Giving

FCKHaving started FCK (a directory of blogs that educate, support, enlighten, inform, inspire and motivate people about and with Fibromyalgia), I have had the privilege of discovering so many blogs that I may never have seen if not for this project.

One of those blogs is Same Burn…Different Flame. Cathy is about 12 types of awesome, 10 of which she hasn’t quite put her finger on (yet!) It isn’t her goal to change the world or end our nation’s poverty crisis…. but hell, if she could, she would TOTALLY do it.

One of Cathy’s blog posts has resonated with me greatly – here it is:

I’m sorry: An open letter to my loved ones

Dear family and friends,

First and foremost, I’m sorry.  I feel like I’ve let you down in many, many ways.  And there is nothing to say, except, “I’m sorry.”

I can honestly say that I don’t have a handle on what’s happening with me, lately.  At one point in the not-so-distant past, I was lively and energetic.  That girl is…. well, she’s gone now.  And I don’t know where she went.

I feel like I can never get enough sleep.  Never.  I’m exhausted.  During the week, I force myself to get out of bed and carry on with my day.  I get up at 5:30 am, drive to work, work all day (most of the time without a lunch break), drive home and finally take my shoes off at 6:00 pm-ish. I. Am. Exhausted.  I make dinner (which, admittedly, isn’t all that exciting these days), and I collapse on the couch, too exhausted to do anything else.  By the weekend, I lie around the house, unmotivated to do anything but sleep.

And then, there’s the pain.  I don’t know that you would ever understand, unless you have been where I am right now.  Miserable doesn’t even begin to describe it.  Imagine, if you can, the last time you were really sick.  Then, imagine the last time you were really sore.  Like… for me?  It’s like the time I had walking pneumonia, combined with feeling like I had just done a half-marathon.  I dread waking up, because moving in the morning is like trying to break out of an invisible cast.  I’m stiff.  It hurts.  And I don’t know if it’s just a morning thing, or if I’ll be suffering all day.  Once I get going, random things will bother me.  My hips will hurt.  Or my toes will burn.  Or my back will ache.  Or I’ll be itchy.  Or my legs will cramp.  Or I’ll have a headache.

Good God… the headaches.  They’re not to be underestimated.  It could be a dull, constant headache.  Or Satan can be gripping my brain with his red-hot, pokey fingers.  They can last a few hours, or for days.

I get tired of taking medications.  Side effects from them mean that I have to take other things to try to feel better.  For example, the Tramadol makes me itchy.  So I have to take Bendryl to alleviate the itchiness.  But Benedryl makes me sleepy.  So I have to take an energy pill.  The energy pill makes the pain worse (not sure why).  So I have to take Tramadol.  And so it begins, again.

……I carry guilt with me.  All the time.  I feel guilty because I am tired.  I feel guilty because I am lazy.  I feel guilty because I am crabby.  I feel guilty because I am distant.  I feel guilty because I’m weak.  I feel guilty because I’m losing the battle.

I don’t have the answer.  But it isn’t for lack of asking the question.  Please, don’t stop loving me.  Don’t leave.  Don’t close your ears and your heart.  I’m trying.

Maybe, someday, the girl that you used to know will come back.  Until then, just keep loving the girl that I am, now. Hug me.  Tell me that I’ll be okay.  Hold my hand.  Talk with me.  Let me vent.  Help me forgive myself.

With unparalleled love,

me

Feeling the same way? Feeling guilty?

Find the Essence Within

Give yourself a gift this holiday season…find the essence within.

chronic comic 172We, as people, are forever attempting to be someone other than who we authentically are. We read an array of self-help books with the idea of attaining skills enabling us to connect with our true essence. Many of us have read it all before and yet we continue to strive to be that being outside of ourselves. Why would we endeavour to change the essence within when perfection comes from our own uniqueness?

Society, our peers, upbringing, education and the media gently, yet effectively, drive us to believe we are not quite good enough and change is desirable. In actual fact, the opposite rings true.

Our authentic self is never lost, only hidden. Some ideas I have personally discovered in order to rediscover the true essence within myself are:

  • Repeat as often as possible, “I am perfect exactly as I am”.
  • Ask yourself, what did I enjoy as a child? Singing, dancing, writing, public speaking, creating, poetry, carpentry etc.
  • Then reintroduce at least one of these activities into your life. Who knows where it may lead. You may meet new friends or create an innovative business idea from something you actually love doing.
  • Ignore societal views regarding age barriers. Who says you cannot be a famous violinist? Did you know current neuroscience research demonstrates that our brain is plastic and forever changing, growing and learning, irrelevant of age. Dreams are not just for the young (or perfectly healthy)!
  • Say what you think and feel (of course, with a splash of diplomacy). It is not your job to tiptoe around others, making them feel comfortable at the expense of your own needs. Allow yourself to be lazy occasionally. There is too much pressure to be amazingly driven and goal oriented. It is okay to do nothing at times, staring into space thinking, dreaming and being vague – this is the space where connection with your inner voice is sometimes heard. Goals can be considered only once you have heard your inner voice, as there resides your base for building your life.
  • Make choices based on YOUR OWN dreams. For example, many find it desirable to own a home; but, perhaps you would prefer to be a resident of the world and rent in different cities. Maybe you would rather own a business and inject your earnings into a creative idea.
  • Be motivated by your soul, not by guilt. We are easily driven off our path through guilt. Guilt is not a good motivator. Guilt is instilled through various means that create a belief system from which we operate in later years. Let us all tame guilt and be free.

You may note a general theme running through the above ideas. You discover you by allowing yourself the freedom to make choices and decisions only for you. It may appear self-centred to approach life in this manner. The opposite is true. People who genuinely love you will be happy you are treating yourself as your own best friend. Your authentic way of life will encourage others to do the same and this will impact on their circles as well.

Thurman

Reprinted from the December issue of LIVING WELL with FIBROMYALGIA – like it? Subscribe for the next issue HERE

 

GUILTY as charged!

This article was pointed out to me. I thought it might be useful for some of you:

Seven Strategies for Reducing Guilt

By Bruce Campbell

Guilt is a common reaction to CFS and FM. Some people blame themselves for getting CFS or FM, thinking they might have avoided becoming ill if they had lived differently. Other people feel guilty about no longer contributing as they used to, while others lament that they aren’t the spouse or parent they wanted to be.

If you experience guilt associated with CFS or FM, what can you do to ease the burden it imposes? Here are seven strategies used by people in our program.

Adjust Your Expectations

Guilt is often triggered by perfectionism, holding ourselves to standards that don’t fit our new capabilities. Rather than adjusting our standards to meet our new limits, we may measure our performance against either the person we used to be or the person we had hoped to be. We may say things like “I have to do things perfectly” or “I have to be the best at everything” or “My kids deserve everything from me that other children get.”

You can reduce guilt by adjusting your expectations so that they match your new level of functioning. How do you do that? One place to start is by doing a reality check on your expectations. On the left side of a piece of paper, list all those things you no longer do but think you should do, for example, fix elaborate meals, drive kids to their activities or earn a living. On the right side, write your judgment of whether the expectation is realistic.

 Reframe (Change Self-Talk)

Part of the process of adjustment is changing our internal dialogue or self-talk, so that it supports our efforts to live well with illness rather than generating guilt. One person in our program says that she used to chastise herself for taking a nap. Her self talk was “you are weak and lazy for having to rest.” Now, when she goes to take a nap she tells herself, “I am helping myself to be healthy. I am saving energy to spend time with my husband or to baby sit my grandchildren.”

Similarly, when feeling tired, you can say “This fatigue is not my fault; it came with CFS. So I don’t need to feel guilty about not being able to do everything I used to.” Or: “I didn’t ask for FM, so why should I feel shame when it prevents me from doing things.”

You can change your habitual ways of thinking about yourself to make them more accurate and more friendly. For step-by-step directions, see the article Taming Stressful Thoughts.

When Feeling Guilty, Shift Your Attention

Even if feeling guilty is inevitable, we can control how we respond when feelings of guilt arise. One person in our program said that when she feels guilty, she asks herself, “Is this feeling productive?” In some cases, the answer will be “Yes.” Guilt can draw our attention to ways in which we have failed to live up to our standards and can motivate us to act differently. (See next strategy.)

If the feeling is not productive, however, it may be better to respond to guilt by turning our attention elsewhere. As another person wrote, “It’s better not to go some places in your head, so I’ve learned how to control my own thoughts.” Another said that when she is caught up in feelings of guilt, she tells herself things like ‘this isn’t my fault’ or ‘these feelings will pass as long as I don’t allow myself to act on them’.”

If You’re Wrong, Apologize and Make Amends

Guilt can be helpful if it motivates you to take better care of yourself in the future and to treat those around you with more care. One person said that if she does something to hurt her husband or her children, like lashing out at them verbally, she apologizes.

If being undependable bothers you, you can use guilt over canceling out on commitments as an impetus to be more consistent in pacing. Another person said, “I was so embarrassed by canceling out on people that I promised myself I would do better. That commitment motivated me to be more consistent in pacing and to become a more dependable person.”

Educate Others (Within Limits)

In addition to adjusting your expectations for yourself, others expectations of you will have to change as well. People in our groups have suggested several strategies for doing this. One is to educate people about CFS and FM, emphasizing that they are long-term conditions that impose significant limits and require adjustments of the person who is ill and those around her. One person in our program gave each member of her family a booklet on CFS from the CFIDS Association and asked them to read it as their birthday present to her one year. The process of educating family and friends is usually a gradual one, often taking several years.

Learn Assertiveness

Another strategy for reducing guilt is to be assertive, standing up for yourself by stating what you will and won’t do. A person in our program says that her family now accepts it when she says “I am sorry I can’t do that.” She tells about a family outing she and her husband went on with their adult children. At the end, her husband invited the children over to their house. “In the past,” the woman says, “I would have gone along with it, seething inside at myself for not saying anything and at them for not knowing I couldn’t do it.”

Instead, she told everyone that she needed to rest and she suggested that her husband spend the evening at one of the children’s homes. So that’s what the family did. The woman took a nap at home while the rest of the family went to a daughter’s house to watch a movie.

Practice Relationship Triage

A final strategy is to reevaluate your relationships, practicing what we call relationship triage: making explicit decisions about whom to include in your life, concentrating on the more valuable or necessary relationships and letting others go. You may decide that some people will never understand your condition or accept that you are ill. In some cases, you might choose to end a relationship. For relationships you decide are necessary, you might limit the frequency of contact.