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Life As I Never Intended

You run down the street. I wonder how…
because my feet move so slowly now.

Illness stripping so much from me.
Life as I never intended.
When you look at me what do you see?
Do you understand my dreams so upended?

More likely you see a lay-a-bed
doing nothing useful or eventful
because the words to me you said
were so hurtful and judgmental.

Even if illness never traveled your life,
doesn’t mean you shouldn’t discern
the incredible pain and strife
that through my life has burned.

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A Few Square Feet of Bed

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I live in a few square feet of bed
my companion the thoughts in my head.
Loneliness like you can’t imagine.
Guilt my biggest challenge.

Illness has taken over my life.
Making me less than a wife.
I can no longer do laundry, clean or cook.
Due to cognitive difficulties
I can’t read a book.

I never expected my life to look this way.
Or that sleeping is how I would spend my days.
Nobody gets this illness it seems,
but in my dreams…

I wake up one day to a cure,
and everything is changed for sure.
I have energy and I’m not in pain.
I’m sleeping normally and I feel sane!

The sun peeps from behind the clouds.
And I want to shout out loud…
I feel good, I feel good, I feel good,
but before I could…

the dream ends and once again I find
myself trapped in this sick body of mine.
This body that is energy-less and in such pain.
This body with a cognitively challenged brain.

This body I hate/love.
This body I push/shove.
This body I’ve loved and adored.
This body I’ve cared nothing for.

All these mixed feelings are so confusing
some of my thoughts so self-abusing.
Body loathing does not help.
The better experience is love of self.

Loving self despite the handicap.
Doing so though developing a map
to traverse the terrain of the disease
with the most available of ease.

Meditate through my days.
Ask God to show me the way.
Take a nap when in doubt.
Don’t be afraid to reach a hand out.

Yes, I live in a few square feet of bed.
I live my days where I lay my head.
Am I happy about it? No, I’m not.
But right now it is the only life I’ve got.

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Setting and Defending Your Boundaries

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This may not be a popular post, but please hear me out and know that I am right there with you.  I struggle daily with setting boundaries and defending those boundaries.  We all want someone to just “get” what we are going through and “understand” us when we set our limits.  I wish it were that easy!

What I hear over and over (and experience, at times, myself) is that my spouse, friend, mother (insert noun that applies) doesn’t understand my illness or doesn’t believe I am really ill.  The frustration really kicks in when you expect this person or these people to “approve” of your need to rest or to not do something that they are wanting you to do.

We let other people keep us imprisoned in a tighter illness “cage” than it has to be because we are too afraid to set boundaries or tell them that we can’t do something when we know we can’t.   If they argue, if they don’t believe us or if they disagree, then we feel we have to make a choice about whether to justify our non-doing or do what they want us to do.  Doing usually seems easier in the moment.  However, in the long run you pay the price.

Set Your Boundaries and Stand Firm

I want to propose that, at the end of the day, you are one-hundred percent responsible for you.  It is no one else’s business to decide your limits and if they don’t see your limits the way you see them, that is kind of too bad and their problem.  They are not inside your body and they are not living what you are living.  God forbid they one day might be chronically ill themselves and then they would understand, but until that happens you just have to take personal responsibility and defend your boundaries.   As scary as it is and hard as it is and as against the grain as it goes, you just have to say I. Can’t. Do. That.  And stand firm.

I’m not saying that I have it all figured out and that it doesn’t bother me to set limits and stand up for those limits; it does.  I realize that it is something that I am going to have to get over or I am going stay sicker than I have to stay for the remainder of my life because I am constantly overruling my own innate sense of when I should rest.  If I don’t enforce my boundaries, I will be doomed to continue apologizing for myself because I am always going to be sick and will always be letting people down due to having to go to bed and recover from my overdoing.

Are You Your Own Worst Offender?

I am not discounting that I am my own worst offender, either.  I often place too many expectations on myself and crash and burn as I struggle to meet those expectations.  The fact is that we can’t really teach other people how to treat us until we learn to treat ourselves better, which includes honoring our own boundaries with ourself.

I think an interesting exercise would be to pretend one day, all day long, that you have cancer.   How would you treat your body knowing that any chance you had of living versus dying is in conserving your energy and resources so that your body could have a chance to heal?  How would you be around other people if you knew you had a “legitimate” disease such as cancer?  How would you feel?  How would you behave?  How would others treat you?  How would you expect others to treat you?  And, how would you treat yourself?

Your Illness IS Legitimate!

Just because you don’t have cancer and you have chronic pain, chronic fatigue syndrome, fibromyalgia, migraines or whatever illness instead, it doesn’t matter.  Whatever you have is a legitimate illness!  Your body deserves your consideration.  And, obviously, you deserve understanding and consideration from those around you, but it has to start with you.

You see, when we expect other people to understand our reality from their reality, it doesn’t usually work out well.  It can be like we are on totally different planes of existence.  I know that I didn’t even fully understand my own reality when I first became ill.  I kept thinking that I could push myself much further than I actually could.  So, if it takes us a while to believe our own limitations when we become ill, how can we expect others to understand when they haven’t lived in a chronically ill body?

They can’t understand it!  In fact, I don’t know if you have done this, but I have done this in the year and a half since I have had chronic fatigue syndrome and have been unable to do most physical activity: I watch people do the simplest of things and am amazed.  I do this when I watch TV.  An actor is running down the street and my brain just can’t quite grasp how they can do that.  It is because I have been in this reality of chronic fatigue syndrome for a year and a half and I have forgotten my previous reality.  If I’ve forgotten my own reality from when I was able to do more, then how can I expect some other person to understand my reality as a sick person from their reality of health?

It is Empowering to Take Responsibility for Yourself

The bitter pill to swallow is also the most empowering thing we can do which is take total responsibility for ourselves, set our limits, set our boundaries and don’t let anyone make us feel guilty.  How long can you continue to drag your body through activities that it can’t physically do right now because you don’t want someone to be upset at you for setting your limits?

We can pass out the spoon theory to every person that we meet and in the end we stay totally frustrated because they still aren’t getting it.  In the meantime, we just keep on overdoing because we are waiting for them to give us permission to take care of ourselves the way we know we need to.  The spoon theory might help someone understand for a nanosecond, but then they slip back into their reality where they truly can’t comprehend because they haven’t lived what you are living.

You wouldn’t let someone break into your house while you just sit back on the sofa and watch them take all of your stuff because you are scared to offend them.  So, don’t let someone break into your body and take all of your energy while you are busy people pleasing because you don’t want to make waves.

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How to Exercise with Chronic Pain

It is almost across-the-board true that exercise has a positive impact on chronic pain.  The trick is in starting low and going slow versus rushing headlong into a full workout that serves to flare your symptoms.

Your chronic pain condition will determine your exercise choice..

The source of your chronic pain will, to some extent, decide the exercise that is best for you.  Many people think that they can’t exercise with back pain.  This is categorically untrue.  We even start people on exercise the day after back surgery,” says Maria Mepham, a physical therapist at the Cleveland Clinic.  Examples of appropriate exercise for back pain would be yoga or exercises in water (swimming, water aerobics).  The same would be true for joint pain, such as knee or hip pain.

The following text is written about fibromyalgia and chronic fatigue syndrome, but can also apply to other chronic pain conditions.  It is a way to start slowly and monitor yourself so that you don’t overdo or increase your exercise intensity or length too quickly.

Most of us with fibromyalgia and/or ME/CFS (chronic fatigue syndrome) have been unable to maintain a regular exercise program. The problem is that with fibromyalgia, lack of exercise can increase our pain levels while too much exercise or exercise done incorrectly can also increase our pain and fatigue.

In the case of chronic fatigue syndrome or ME, as the body becomes deconditioned, the CFS worsens and as the CFS gets worse, it becomes more difficult to exercise leading to further deconditioning. The autonomic nervous system that is already not functioning well in ME/CFS becomes even more problematic with lack of tone in the legs and lower body. This lack of tone allows blood to pool and upon standing the blood does not get pumped back up to the brain efficiently. This can cause dizziness and faintness immediately upon standing, but can also cause problems as long as 15-20 minutes later. Exercise strengthens the lower legs and abdomen and doesn’t allow as much “space” for blood to pool and therefore prevents some of the dizziness and weakness that we may experience.

Start gently and build up slowly.

For an exercise plan to work, it must be approached gently, slowly and with planning to ensure that you do not overdo. “Pushing through the pain” is a totally bad idea. This is a time that you want to treat your body with a great deal of care and respect.

Exercise labs have sophisticated ways of calculating just how much exercise you can tolerate in the case of ME/CFS. However, most of us don’t have access to these labs, so we have to begin with a bit of experimentation and a lot of caution.

Choose the aerobic activity that you wish to use for your exercise. If you choose an activity that doesn’t require too much planning, equipment or special dressing, you might be more likely to exercise consistently. It can be frustrating to have to get dressed, hire a sitter, drive to the gym, do five minutes of exercise and then turn around and go home. In the beginning you are most likely not going to be doing more than a few minutes of exercise at time.

For myself, I chose jogging in place. This requires no special clothing, it doesn’t matter what the weather is outside and I can fit it into my day whenever it is most convenient. You could also march in place if your joints don’t allow for jogging. Or maybe you have an exercise bike you wish to ride or an elliptical machine.

The first thing to do is warm up.

The first thing you will want to do is to warm up. One of the best warm ups is in Chapter Nine of Dr. Ginevra Liptan’s book, “Figuring Out Fibromyalgia.” It involves some gentle range of motion and stretching exercises.

Once warmed up, I began my first “jog” with a stopwatch and I jogged in place until I really felt like I should stop. I was a bit winded, a little dizzy and had pushed myself a little too far. For the first “jog,” that was my intent. This first exercise round was 3 minutes and 300 steps. (I counted my steps because I didn’t want to be dependent on using a stopwatch each time I exercised). That was Step One. I should note that I have Fibromyalgia and Chronic Fatigue Syndrome and can tolerate very little exercise.

Step Two was to back off of that amount of exercise to a more tolerable amount. I chose to go down to 200 steps (which is about 1 1/2 minutes).

Step Three is to go flat. This means to lay down and do nothing or (only if you are able) do very gentle floor exercises such as leg lifts for a period of at least five minutes. In this time the autonomic nervous system resets itself and the body recovers from the exercise.

Step Four is to do another exercise round. This subsequent exercise round can be done immediately after your five minute rest or later in the day. It doesn’t matter how long you rest as long as it is at least five minutes.

Monitor to make sure you aren’t overdoing.

Now, you need a way to make sure that you are not doing too much exercise. For this, you will be checking your morning resting heart rate (RHR). This is a trick I remember from my pre-illness days as a way to make sure I was not overtraining when I was running 10Ks. Each morning before you get out of bed, check your pulse for 60 seconds. Record this number. You will want to get a baseline by checking your pulse for a few mornings before you begin exercising. Then, once you are exercising, on any morning that your pulse is more than a few beats, say 5%, more than normal, you need to take a day or two of rest. This can also alert you to the fact that you are overdoing in general with your daily activities and maybe need to slow down a bit.

Begin your exercise program with two to three rounds of exercise a day, spacing your exercise days about three days apart. Stay at this level for 6-12 weeks before you increase. After this, you can increase to exercising more rounds a day and maybe increase the amount of time you exercise each round by a small amount. According to Dr. Liptan, it works best with Fibromyalgia to exercise every three days. I think this might be a good rule for ME/CFS also. Always stay at the new level for 6-12 weeks before increasing again.

Maintain abdominal tone.

In addition to aerobic exercise, it is important to keep core (abdominal) muscles toned and this can be done with yoga or pilates. You want to keep the same exercise philosophy of doing a small amount of exercise, maybe one or two poses, and then resting. A good way to do this is to get a gentle yoga or pilates exercise video (for mat) and take all day to complete the exercise session on the video by doing a bit resting and then doing a bit more.

Don’t forget strength building exercises.

On a separate day, you can work on strength building using light weights such as 1-pound dumbbells, tomato cans or resistance bands to do various arm exercises. The same can be done for your legs using light ankle weights to do leg lifts.  For both your arms and legs, do a few repetitions until you begin to feel your muscle burn and then rest for a few minutes. Then do another set.  Don’t do weight exercises any more often than every other day because your muscles need time to heal and repair in between.

According to Dr. Nancy Klimas, an expert in treating ME/CFS, you want to be eating at least 60 grams of protein a day.  The immune systems of chronic fatigue syndrome patients are requiring a great deal of protein. Fibromyalgia patients also do best on a higher protein diet.

If you have a relapse in your illness, do things that you can do from bed to stay flexible and come back to your exercise program when you are back on your feet. Dr. Klimas says that exercise is tremendously immune modifying and that you can get twenty percent of your immune function back from exercising. It also buffers you against stressful times.

So, to recap:

  • Begin by checking your morning resting heart rate (RHR) for a few days to get a baseline.
  • Step One – Exercise to your limit the first time.
  • Step Two – Back off the amount of exercise you do in Step One to a tolerable amount.
  • Step Three – Go flat for at least five minutes to recover from exercising.
  • Step Four – Do another round of exercise when you are ready.
  • Keep checking your morning RHR and if it increases more than about 5% then you are doing too much and need to take a day or two of rest.

Related videos by Dr. Nancy Klimas:

Part 1 – http://vimeo.com/26783830
Part 2 – http://vimeo.com/27073084
Part 3 – http://vimeo.com/27191660

http://www.cfsknowledgecenter.com/ea6.php

Update:

Since I originally wrote this post I purchased a heart rate monitor.  Just a simple watch (no need for a chest strap) and realized that the jogging in place I was doing was exceeding the heart rate limit that Dr. Nancy Klimas believes ME/CFS patients need to stay below.

It is calculated like this:

220 – (your age) x 65% = maximum heart rate during exercise

For me this calculates to 111 beats per minute.  Since I was exceeding this by quite a bit with my “jogs,” I have changed to now marching in place for my exercise.  I swing my arms and raise my knees fairly high.  I am coming in right at the correct maximum heart rate for me.

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Is H.A.L.T. Contributing to Your Pain?

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I came across the acronym H.A.L.T. watching a show about a chemically addicted character.  H.A.L.T. stands for Hungry, Angry, Lonely and Tired.  Each one of these emotional or physical conditions can leave an addict vulnerable for relapse.

I began to think about these conditions in relation to chronic pain and realized that, if not remedied, they also would leave a chronic pain patient vulnerable for increased pain levels.

Hungry describes a condition of needing or wanting food.  When you have a chronic pain condition, it is critical that you keep your blood sugar levels stable.  Small, frequent meals balanced with the appropriate amount of protein and complex carbohydrates is what you should aim for.  But hunger can also include emotional hunger: hunger for attention, for love, for understanding, for companionship.  Do you have people in your life that you can depend on when you need them?  Do you have a support system?  If you are feeling hungry, can you figure out whether to reach for nutritional food or whether you need to phone a caring friend?

The second condition, anger, signifies your emotions are out of control.  Is there a situation that is upsetting you?  What do you need to deal with?  Anger is not a bad emotion even though it has gotten a bad rep.  There are plenty of healthy ways to express anger such as exercise, screaming into a pillow, even working through it with EFT or Tapping.  Perhaps you need to tell someone that you are angry.  Another option is to write your thoughts out and then burn the letter.

Next is lonely.  Being lonely is like emotional hunger.  What can you do to reach out?  Is depression a problem?  Can you join a support group?  Maybe you need professional counseling to look at the underlying causes of your loneliness.

The final H.A.L.T. acronym condition is tired.  When you are out of energy then pain has a real chance to get a foothold.  Are you trying to do too much?  Are you overwhelmed?  Could a nap help?  Are you getting proper rest each night?  Maybe you could take a break and do some breathing or meditating.

Next time your pain spikes, ask yourself to H.A.L.T.  Then take the steps to find out if you are Hungry, Angry, Lonely or Tired and do what you can to remedy the situation.  It might be all you need to bring your pain levels back down

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Learning How to Care for Myself

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What happens after you ditch the guilt and conquer the grief? It is time to start caring for yourself. And that is exactly what I am doing.

I had a long talk with my amazing health coach, Tami Stackelhouse, today about this very subject. We discussed:

  • planning my week
  • scheduling in rest periods
  • scheduling in rest days
  • finding ways to cut down the number of trips I am making up/down the stairs each day
  • building more fun into my days – it is time to start living

I am so not a planner. I live entirely in the moment and don’t think beyond right now. This is good and bad. I don’t fret about yesterday or tomorrow. But I also don’t do a very good job of planning my week and I end up with back-to-back appointments, which only serves to crash me. My new commitment is to take a breath, look at my calendar and think through what makes the most sense when I am scheduling appointments.

I am scheduling rest times in the morning and afternoon on my calendar. Actually blocking it out as an appointment. If someone asks me to do something during one of those rest times, my answer is, “I’m sorry, but I have an appointment at that time.” They don’t need to know that appointment is with my pillow. ☺

Scheduling in rest days is something I have done in the past and then I somehow forgot and went back to working everyday. Going back to rest days on Tues, Thurs, Sat and Sun and work days on Mon, Wed and Fri. I will still keep my rest periods during my work days. That is important.

I just purchased a Fitbit. It is telling me how many steps I am taking, calories I am burning, floors I am climbing, etc. Well, I am out of control. I am walking an enormous number of steps and climbing way to many floors for being housebound and mainly bedridden. This is going to take some real planning because our bedroom/master bath is on the top floor (by itself) of a three story house. To do anything takes going down at least one level. I am going to have to think what I need to bring upstairs with me in the morning so that I can try to make fewer trips.

Now that I have done all of the healing work, it is time to have fun! I no longer have guilt and so there is nothing stopping me from knitting, playing my violin, watching TV, reading, playing games on my iPad, daydreaming, listening to music, etc. Being sick is a hard work. I don’t have to apologize for having fun hobbies to enjoy when I have enough energy.

What can you do to take better care of yourself?

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Unknown-1The IOM (Institute of Medicine) convened and with much deliberation came up with a new name and new definition for what has already been called by so many names — Yuppie Flu, CFIDS, CFS, Chronic Fatigue Syndrome, ME, myalgic encephalomyelitis, etc. The new name is SEID: Systemic Exertion Intolerance Disease.

Do I think this is the perfect name? Not really. Do I think it is a horrible name? No. It has some good points. Systemic means body-wide. This says to me that exertion causes body-wide symptoms. Note that it is now called a disease, not a disorder.

Dr. Ian Lipkin was just interviewed on Dr. Oz’ Show and he stressed that the disease is an infectious process and they are searching for biomarkers so that they can test. With this they will finally have proof. We seem to be on the cusp of some breakthroughs. With the new name and definition, we are getting a lot of much needed press for our illness. This can only help our cause and possibly bring in research dollars and interest.

The definition was not bad (in my humble opinion). To qualify for a diagnosis of SEID, you have to meet the following criteria.

The proposed diagnostic criteria for ME/CFS diagnosis requires that the patient have the following three symptoms:

  • A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest, and
  • Post-exertional malaise,* and
  • Unrefreshing sleep*

At least one of the two following manifestations is also required:

  • Cognitive impairment* or
  • Orthostatic intolerance

The IOM panel stressed that doctors should not wait 6 months to begin treatment. That they should take this disease seriously. That this disease is not in our heads, that exercise is not the answer and that we are no longer to be shoved aside.

In my opinion, we ought to take this new name and definition and all of the media attention it is bringing with it and RUN WITH IT! We are never going to find a name and definition that everyone agrees with. I don’t think this is perfect. I just don’t want to waste more time going back to the drawing board. I am ready to move forward.

You can read the full report, the key facts, download the Clinician’s Guide, etc. here.

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Ditching Guilt Makes Way for Grief

Who knew that removing the layer of guilt that had been sitting on my shoulders, like some kind of bolder from hell, would make room for grief to move in? I always thought it strange that I never really mourned the loss of my health. I told myself this was because I had basically been sick my entire life and knew no difference. However, Presently I realize that is bullshit.

I now have waves of grief pouring over me. I feel like crying, screaming, throwing things and curling up in a ball and hiding from the world — all at once. It is confusing. It is scary. It is pure grief.

It hurts to know my life is confined to a few square feet of bed. I miss my friends and family while knowing that I don’t have the ability to communicate with them without making myself much more ill. I hope they understand. I know they all don’t. I am sorry for that. I miss the outside world. I miss driving. I miss eating out. I miss the freedom of going where I want, when I want. I am tired of doctors.

I know the grief will pass. I have to ride it out. Feel it. Allow myself to cry, mourn, be angry, hurt and experience all of the emotions that come up. I can’t hide from this if I want to heal from it and move past it. I have no intention of spending years in grief the way I did in guilt. Absolutely no intention.

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Ditching the Guilt

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I am officially finished with guilt over my illness. I have spent years feeling like I need to apologize, make up for, or do some kind of penance for the fact that I happened to become ill. Like I somehow brought this on myself or asked for it in some way. I didn’t.

The common saying by my doctor, health coach, husband and those that love me is that my job is to get well. I have not believed this before now. My job was to have a job like any functioning person in society. That was how I continued to see it. All this did was keep me pushing past my limits and continually crashing me so that I wasn’t even able to function up to my “sick” best.

I now understand. My job is to get well. I may or may not ever get there. However, it is better than my job is to stay sick. I cannot hold down gainful employment. That is just an unfortunate fact. It is time I believe that those who love me understand that and don’t blame or judge me.

What do I do with my days? I spend time taking care of myself by:

  • meditating
  • gentle movement
  • eating regularly and healthfully
  • napping
  • taking my supplements on a schedule
  • soaking in an Epsom bath
  • journaling
  • play Lumosity to try to keep my brain supple

And then I:

  • knit
  • read, if my brain allows… watch TV if it doesn’t
  • visit my goats
  • pet my dogs
  • gaze out my window
  • play on Facebook
  • play games on my iPad

I refuse to feel guilty about the second list as long as I take care of myself first by attending to the first list.

Yes, I am chronically ill and I may never get well. There is a lot of judgment about that out there in the world. Luckily I have people around me that love and support me. It is time that I love and support myself and ditch the guilt. It is a waste of time and energy.

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Childhood trauma isn’t something you just get over as you grow up. Pediatrician Nadine Burke Harris explains that the repeated stress of abuse, neglect and parents struggling with mental health or substance abuse issues has real, tangible effects on the development of the brain. This unfolds across a lifetime, to the point where those who’ve experienced high levels of trauma are at triple the risk for heart disease and lung cancer. An impassioned plea for pediatric medicine to confront the prevention and treatment of trauma, head-on.

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