As I approach the one-year anniversary of contracting the fateful virus that ignited myalgic encephalomyelitis (commonly called chronic fatigue syndrome), emotions have been rolling through me and over me. I have not written much about ME/CFS over the last year. I think I always felt that it was a temporary guest and that soon I would wake up and my life would have returned to “normal.” I guess I must now admit that isn’t happening. So, this will begin a series of blog posts about what it is like living with this illness that has totally changed the landscape of my life in so many ways.

It is hard to believe that a year ago this time I was feeling pretty good. I had a decent amount of energy, was on few medications and was treating my illness (mainly the osteoarthritis was active; the fibromyalgia and lupus were fairly well controlled) with naturopathy. Each morning I would be up by 3 – 4 AM (my favorite time of day) to work on my novels and meditate. After breakfast, we (my husband, two dogs and myself) would hike our very steep 13-acre property where hubby has carved out trails just for that purpose. I would then spend my days working on my novels some more, running my support group or playing on the internet before I went into the kitchen for a couple of hours to prepare dinner. Cooking being my stress reliever and joy.

That all changed on February 21st when I caught a random virus from someone we were visiting at the time. Hubby caught the same virus. He got over it. I didn’t. It ignited a firestorm of symptoms in me that just continued to worsen. It began as any virus with flu-like aches, chills and fever. And then it continued. My list of symptoms now include swollen lymph glands, constant sore throat, earaches, chronic daily headache, vertigo, multiple chemical sensitivities, sensitivity to light, sound and smells, crushing fatigue/exhaustion and post-exertional malaise, constant fevers, body aches, chills, digestive troubles, cognitive difficulties and brain fog. I feel like I am forgetting some symptoms, but you get the picture.

I will discuss more about all of this and what the last year has been like in future posts. For now, I wanted to address the emotional troubles I am having with the one-year anniversary approaching of when I contracted this illness.

I have been ill for most of my life and so have had one-year anniversaries of illnesses before. I don’t remember ever thinking anything about them. And I wasn’t thinking about this one. At least I didn’t think I was. I just was becoming more and more depressed. This is not an emotion that I let go unexplored after having spent too many years of my life in depression. I never want to revisit that time, so I was not/am not letting this depression stick around. Therefore I took a long hard look at what could be the problem. I had been sick for a year, so surely it couldn’t be that, could it? But there wasn’t anything else that was upsetting me.

It took some internal exploration before I realized that the depression was driven by fear. The fear was coming from the fact that my condition just continued to worsen and worsen. I wasn’t concerned so much about that per se. Sure, it is upsetting. I did recently have to begin using a wheelchair when faced with walking long distances. Also, I just obtained a handicapped placard for my car to use if I really need it. I no longer can drive due to the vertigo and exhaustion, but sometimes my hubby might need to park close in and walk with me instead of dropping me at the door and going to park as is our usual practice. But that wasn’t the source of my fear.

No, the fear is coming from the fact that I run the local support group for fibromyalgia and chronic fatigue syndrome and I am afraid that I might become too ill to even continue to do that. I am afraid that as I continue to worsen, worsen and worsen that I won’t even have the brain power let alone the physical ability to run the group and that would break my heart. I have spent my life in careers that I “fell” into and that didn’t mean that much to me. They were a paycheck. I didn’t hate them and I enjoyed the people I worked with, but there was no passion for what I did. Then two years ago I took over running the group from the founder who was moving out of state. And, after 40+ years of living, I had found my passion. Now two years later that passion is being threatened by a random virus I caught on a trip. Thus my fear that is spiraling into depression.

I am working with my doctors and health coach to better plan my days so that I can get more rest and therefore not spend so much time in such pure exhaustion that I can’t function (called a “crash” in ME/CFS terms). This is helping me find ways to keep running my group on my limited energy stores. The fear/depression cycle is draining my energy. Just understanding what is going on emotionally helps a lot. If I can relax that fear a bit and allow the depression to ease, I will have access to more energy. My wonderful hubby has offered to help all he can with running the group and I have an amazing co-leader that has my back. Finding the positives helps!

So, this is an anniversary that I probably won’t be celebrating by eating cake and blowing little bugle horns. However, it is one I maybe also don’t have to mourn quite so much as I was. I can maybe work on letting it be just another day. Another day in which I have found my passion. That is something to celebrate!

This world is just not user friendly for those of us with ME/CFS. I am sure the same can be said for many different illnesses or handicaps, but I can only speak about the one I live with.

I went for my first physical therapy appointment last Friday to rehab my messed-up neck and cervical spine. I walked into the office and was immediately hit by the receptionist’s perfume, followed by the bright fluorescent lights and then the music playing. Already reeling and dizzy, I was handed several pages of forms to complete that to me were much too complex. I wished they had mailed them so that I could have done them at home where it was quiet, not so brightly lit and just less sensory stimuli in general. However, like a good little girl, I went to work trying to “do my best.”

Finally I was down to one final form that I just couldn’t grok. I told the receptionist it would have to wait until I had spoken to the physical therapist.

The physical therapist soon came to get me and he was also wearing cologne. He took me to an exam room with another bright fluorescent light. Luckily this one he was able to extinguish and turn on something dimmer. He then took me through a battery of tests for range of motion, reflexes, etc. Once finished, he explained my condition to me and what we could do about it.

He performed some therapeutic maneuvers that were painful and had me do three gentle stretching-type exercises. He stated that he needed to see me twice a week for four weeks and didn’t seem to understand when I said this wouldn’t work. As I was leaving, his assistant chased me down with the form I hadn’t completed and had me finish filling it out.

Dizzy and exhausted, I clung to my husband as he led me to the car for the roller-coaster ride home.

At home I had a phone appointment that ended up lasting an hour and a half. When this was over I was done for the next 48 hours. Yep, the old push and crash that I have almost made an art form! Because I forced my way through for a few hours on Friday, I spent the entire weekend unable to function. Not a good trade-off.

Because the world is not going to change to accommodate those of us with ME/CFS, it is up to us to anticipate these obstacles so that we can prevent as many of them as possible.

From now on…

• I will ask all new medical offices to mail me any forms so that I can complete them before my first appointment.
• While it might be embarrassing, I will wear my sunglasses inside any office that has bright fluorescent lights.
• I intend to purchase earplugs that I can use for times that loud music is playing or any other noise is disturbing me.
• I have written an explanatory sheet about ME/CFS that I intend to give to my PT and will take with me to new appointments or meetings if I think I might need to educate whomever I am seeing.
• I will remember that it is my body and my decision, so if I need to set a limit of one appointment a week, then that is what I will do.
• I know better than to be on the phone for more than 30-45 minutes at a time and so “shame on me” for not speaking up and saying that I needed to continue the call on another day when I was more rested.

I don’t know that I can do anything about the perfume and cologne; however, if I can mitigate all the other factors, then maybe I can better tolerate that assault on my senses.

No, the world is not user-friendly for those of us with ME/CFS, but we must remember that we have the power to plan ahead and do things that make our own lives easier!

Does the “Pain Scale” confuse and even scare you a bit as it does me?  When I am asked by a doctor what my pain number is I freeze up.  I feel like I am in grade school taking a test and am in fear of failing.  I stammer out a number and then think, “Was that too high?  Too low?  Did I say the right thing?”  It is crazy-making!

Recently I have been tracking my pain hourly on my “Healing Companion Journal,” which really has me thinking about what the numbers on the scale mean.  I actually feel like I am doing something wrong marking the higher numbers (anything above a 4), like the pain police are going to call me out as inflating my answer even if I am in a lot of pain.  So, I set about trying to make some real sense out of the scale.

What I found was that it really is all over the map depending on the author of the scale.  I think you have to choose one that feels most comfortable to you and then stick with it.  That way your numbers will have relevancy to each other from day to day.

Here are some of the scales I encountered in my search…

This one with its sad faces could be good for children, but I found it of little help with my daily fibromyalgia and osteoarthritis pain.

At first I thought this “What Is Your Weather?” scale was going to be a good one, but once I really read through it, I realized that I would be a “Snowed-In 10” almost every day.

This one was better, but still not quite there, plus I realized that I didn’t know the true definition of the word “moderate.”  I consulted the dictionary.  Moderate:  “kept or keeping within reasonable or proper limits; not extreme, excessive, or intense: a moderate price.” I had mistakenly been calling my much higher pain moderate because I hadn’t researched the definition.

I found another one that I was unable to link to.  However, it was the one that in conjunction with these above finally provided the answer for me.  The pain scale that I am now using is:

0-1 No or very little pain

2-3 Mild pain

3-4 Discomforting

5-6 Distressing

7-8 Severe

8-9 Intense or very severe

10 Worst pain imaginable

I eliminated the word “moderate” and used “discomforting” instead.  It is defined as: “something that disturbs or deprives of ease.”  To me this signifies when tasks or life is becoming uneasy due to my pain level.

Distressing is actually where I am much of the time with my osteoarthritis.  Distressing is defined as: “great pain, anxiety, or sorrow; acute physical or mental suffering; affliction; trouble.”

I now feel like I have a pain scale that I can work with the genuinely reflects my true level of pain or discomfort.  Maybe next time the doctor asks me what my pain number is, I will be able to state it with confidence.  Or maybe I will just show them my “Healing Companion Journal” so they can see for themselves!

Update: A friend pointed out another pain scale that is really excellent.  You can find it here.  Be sure and scroll down to get the full explanation for the numbers.  Once I spend more time with it, I might have to expand my scale a bit with some more explanation.  So stay tuned!

Last night I read a question in an email by Jennifer Louden that really struck me. “In what way have I been living in the shadows in 2011?” Basically, what have I been hiding or afraid to expose about myself?

My first thought was, “Nothing.” Yeah, right. So, I thought harder. And what I quickly had to admit was that I have been hiding a pretty significant fact…how sick I really am. Yep, I talk a lot about having fibromyalgia and chronic fatigue syndrome, but when it comes right down to it, when I am around people or even on the phone, I act like I am doing much better than I truly am. Then I pay like hell when I am behind closed doors with just my hubby and my dogs.

I think some amount of “bucking up” when you are around people is normal and we all do it. However, I know that I probably go the extra mile. Why? I don’t think I feel safe letting others see how ill I really am. I am afraid they wouldn’t like me if they saw the “real” me. If they knew the truth.

Illness has been with me my entire life. I have some symptoms of my current illnesses going all the way back to grade school. I also have memories going back that far of being called a hypochondriac. I grokked by junior high school that my life was easier if I just hid my symptoms. And that is what I did. Unless it was serious enough to scare me into saying something to my parents, I just kept it to myself.

The second half of the question was this, ”How might my life change if I came out into the light in 2012?  What strengths could I discover and share if I gave up hiding my weaknesses?

I can think of a number of ways that my life would improve if I stopped pretending to feel better than I do.

• It would help me stop the push/crash pattern I have been living with.

• It would allow me to admit when I am tired and ask for help instead of soldiering through.

• I think when we hide any one part of ourselves, we also hide other parts without intending too. I could be more authentically me if I stopped hiding how ill I am.

• It might allow others around me to admit how they are really feeling and that they too need to stop and rest.

Mostly I have been thinking that I am doing a real disservice to everyone who has chronic pain and illness and especially fibromyalgia and chronic fatigue syndrome by saying I have these illnesses but then acting like I am more highly functioning than I really am.

Last year, when I developed chronic fatigue syndrome in addition to the fibromyalgia I had had for years, I did admit to the support group I lead that I couldn’t do all that I had been doing. They were incredibly understanding and encouraging. But my lifelong “programming” kicked in and I promptly went back to doing and overdoing during the group meetings just as I always had.

I need to be more congruent with what I say and do or I am not being fair to myself or to anyone else who has these illnesses. Therefore, in 2012 I am going to do my best to be more honest about how I am really feeling and not try to cover the extent of my pain and fatigue when I am face to face with someone or talking on the telephone. This won’t be easy, I know. I do think the benefits of making the change will be well worth it.

Most of us with FMS and/or ME/CFS 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.

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. 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 required no special dressing, 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 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.

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.

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.

On a separate day, you can work on strength building using light weight 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 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.

This is the monitor that I purchased, but do your homework.  I am not saying it is the best one for you.  It does have the added benefit of having a pedometer also.

Over a year ago, I read an article by Martha Beck in Oprah Magazine where she mentioned Intentional Resting. At the time I was intrigued so I visited the website of Dan Howard, the creator of Intentional Resting. However, I just couldn’t seem to grok the lesson and while I have thought about exploring it more from time to time since, I have always dismissed the thought thinking I didn’t have time.

In the intervening year plus, since I first learned of Intentional Resting, I have continued to become more ill, most notably with myalgic encephalomyelitis (chronic fatigue syndrome). This has added extra stress to my life and even though I am resting (sleeping) more, I am even more fatigued. I am not sure what brought Intentional Resting back into my awareness, but thank goodness something did and this time, I paid attention. This time I watched all the videos on Dan Howard’s website and listened to many of the audios. This time I truly got it. And, it is an amazing yet amazingly simple process.

Dan says that Intentional Resting creates homeostasis (balance) in the body. He says that the level any person is rested is the level they can be present for anything or anyone. When you are resting for yourself, you are choosing a new way of being and you are loving yourself. He says that resting, loving and presence are all the same thing.

One thing he invites you to do is to close your eyes and say the word “relax.” See how that feels? Now, close your eyes and say the word “rest.” Better, huh? Relaxing is still efforting. We tell people to, “just relax.” It has emotion or angst around it that “rest” doesn’t have.

It is not news that we are in deep need of rest in this world. We have 24-hour news, we are connected round-the-clock. Our cell phones are almost never (or never) turned off and we too often burn the candle at both ends. Intentional Resting allows us to ground ourselves and slow down a bit. Dan says, “Intentional Resting is moving forward in the world in a state of rest instead of adrenaline.”

So, how do you practice Intentional Resting? It is really quite easy:

• Simply find a spot in your body that is aching or tired and say, “I am resting for (name the spot) now.”
• You can also rest for your adrenals, your FMS/ME/CFS, your immune system or whatever it feels in your body needs to be rested for. It is all about bringing homeostasis, love, peace and presence to the body part or situation.
• More advanced, you can rest for other people, for groups, for upcoming presentations…the possibilities are endless.

Intentional Resting will be one of the first tools I reach for now no matter if I am dealing with pain, fatigue, insomnia or an emotional issue. Why not? It is FREE and just takes a few moments to “rest.”

Simplicity. Compassion. Joy.

These are the three words that I am living by now. These three words comfort me.

Simplicity as in minimalism. Not just in possessions though, but minimizing all areas of life. I always had my hands in too many pots. Too many interests. Too many things I was trying to do. It was born out of searching for who I was. Looking outside of myself for answers. Reading too many books. Listening to too many gurus. Now, I am learning to slow down and listen to the “still small voice” inside. And to God.

When I think of compassion, I think of compassion not only for others, but for myself. I don’t think you can have one without the other. I try hard not to judge others any longer, but to think instead that I have not walked in their shoes. I was brought up in a very judgmental family and it has taken a long time to silence that critical voice that tends to look at others too harshly. But until I have lived their life, I can’t judge. Or, at least I shouldn’t.

Joy is learning to find the joy in each present moment. Even in and amongst the pain and fatigue is mixed the joy of a sunrise or my dog curling up next to my leg. The joy of my husband offering to rub pain cream on my back or to carry my purse to relieve just a bit more burden from my aching shoulders. The joy of a warm blanket wrapped around me or an ice-pack on my neck. The joy of being alive and on this planet for one more minute.

I was talking to my therapist the other day about how the illness; the chronic fatigue and the pain, had been a blessing in that it had slowed me down. That by making it impossible for me to do much more than lie in bed hour after hour, day after day, week after week, the illness and pain had made me finally stop all of my frantic busyness. All of my crazy searching for who I am… for someone “out there” to tell me what I truly can only find within myself. The crazy searching arose out of my childhood and not ever being validated as a person. My therapist asked me to distill down to one thought what I felt was the message I was given in childhood by my parents. After a few moments of silence, I said, “You are nothing more than a marionette that we animate.” That is the “truth” I felt was drilled into me. That is what I have “known” in my core most of my life. I have truly believed that I am nothing more than a marionette desperately searching for someone to pull my strings so that I can come alive and dance. Otherwise I am just crumpled cloth on the stage floor.

I realize now that I no longer feel this way. I now feel like a whole and capable person fully able to “be” without needing someone else to tell me what to do. I can search inside myself for answers. I can stop my crazy, frantic looking out there and calmly turn inward. When I turn inward, I hear my three words; simplicity, compassion and joy, and I know who I am and why I am here. There is such peace knowing that. Such amazing peace.

My Fibromyalgia pain has been fairly well controlled for quite some time. I have days or times that are worse than others, but for the most part, it isn’t too bad. I have had neck and back pain with daily headaches; however, for many, many years. That pain has become increasingly worse. It is now time to get serious about managing it.

Sunday I go for an MRI. I already know that I have degeneration in my spine, the questions are why is the pain becoming so much worse, why are the headaches becoming more migrainous and why are my fingertips feeling numb?

In the meantime, I was not managing my pain medications appropriately and was in a position of constantly chasing the pain and never really getting much relief. I felt I was holding onto life by my fingernails. I was constantly on edge, everything overwhelmed me and the days became focused around pain and not much else since thinking or concentration was not a possibility.

After talking to my naturopath about taking my pain medication first thing in the morning and at regular intervals thereafter, that is what I did today. What an amazing difference! I always wake in pain, but I rolled out of bed and took my medication and by the time I finished my cup of coffee, it was kicking in. Previously, I had been waiting as late into the morning as I could stand to before I took my first dose. Then I spent the remainder of the day trying to catch the pain yet never could.

Today, life felt completely different. I was not on edge or overwhelmed. I felt calm and at peace. Things that would have been panicking me the day before were of no consequence emotionally today. It was like a cooling balm to my body and my psyche. In fact, I was so amazed and pleased at how much better I felt that I phoned my husband to share the good news. That is when the pain ratcheted back up because…

Right after I told my husband my good news, he told me what he was doing. I will not go into the vivid details, but he had been watching an extremely negative and upsetting news story. As he relayed this story to me, I could feel my pain beginning to build…and build…and build. By the time I hung up the phone, I was in a near panic to control the pain.

I tried to breathe deeply and calm myself. I attempted to meditate. I lay flat on my back, on the heating pad, and closed my eyes. Nothing was even starting to relieve the pain. In the end, I had to take pain medication and a muscle relaxer over an hour earlier than I should have needed to. I was able to finally manage my pain again, but the day was never as peaceful and calm as it was pre-news story.

What I learned from this was what a powerful effect our emotions have on our bodies. For me, my early warning sign that something is not a good vibration for me is pain and illness. Turns out that my husband realized his anxiety level after getting involved in the news story went up which was his early warning sign that he should have changed the channel because what followed was rumination and upset that interrupted his day.

It seems that in this age of twenty-four hour news, internet and constant bombardment by the negatives in the world, that we have to take responsibility for ourselves and not allow ourselves to be exposed to the things that only serve to upset us and make us feel bad. Especially if it is a news story that we can do absolutely nothing to change. Why watch it and allow it to negatively effect our emotions and our health?

So, my new pain management protocol is to stay ahead of the pain with my medications, but also to be aware of my environment and to protect myself, if need be, from events that will only serve to exacerbate my pain. I have to be able and willing to stop someone in the midst of their negativity and kindly, but firmly, let them know that I am not interested in going down that path. I must be vigilant about what I read and watch on TV or the internet and lean towards the positives that feed me and not the negatives that harm me. This will not only help me manage my pain, but my mood. It is a win-win.

I have been ill my entire life.  No kidding.  Seizures as a small child, pleurisy in grade school, IBS in junior high, severe allergies, hypoglycemia, chronic daily headaches, etc.  When I was about eighteen years old I was diagnosed with lupus and then fibromyalgia followed about fifteen years later accompanied by severe insomnia, muscle pain, night sweats and fatigue.  I have suffered from depression and bipolar disorder for most of my life and I have widespread osteoarthritis.  Yet through it all, I would have called myself a highly functioning sick person.  I kept on trucking.  I had bad days, I was in pain, I took medication, sometimes lots of medication, but mostly I kept moving, smiling and life went on.

Then… February of this year (2011) I caught a virus.  We were out of town visiting family and I began getting sick on the flight home.  By the time we landed I knew I was really coming down with the same bug that family we had been visiting had.  It was a bummer, but it happens.  A few days of yuck and I would be better.  Or not…

It is now almost November and I am not only not better, but I am much worse in many ways.  The virus went through all the phases of congestion, earaches, sinus pain, sore throat and fever.  Only these things stuck around.  Through three VERY long rounds of antibiotics, each one stronger than the one before, the symptoms just persisted.  My glands became swollen.  I had horrible night sweats.  Later came the migraine headaches and constant vertigo and the fatigue so crushing that walking to the bathroom became a chore.

I have been to every doctor imaginable…primary care, rheumatologist, endocrinologist, fibromyalgia specialist, naturopath and the consensus is finally the dreaded chronic fatigue syndrome, CFS, ME, myalgic encephalomyelitis.  It goes by many names, which according to the CDC is defined as “Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness.”

It is the worst illness I have had to date without a doubt.  Many days I lay in bed and stare at the ceiling unable to even stand the movement or sound of the television.  Sometimes I can’t even read a book.  Brain fog is so thick that I can’t form sentences or do favorite things like cook a meal.  I can sleep 12 hours a night and not feel rested.  I haven’t driven in weeks because my vertigo is so bad that it isn’t safe and it tires me too much anyway.  I rarely leave the house except for doctors appointments because the lights, sounds and movement of the “outside” world are assaulting to my senses and too exhausting to me.

All of that said in explanation, I have to admit that I have been laying down and taking this.  I have been afraid, lonely, feeling old, feeble and debilitated.  I have projected into the future and pictured myself withering away in bed while the world spins in wonder around me and without me.

NOT ANYMORE!  One of the features of this illness has been a plethora of migraines.  Last night I conducted a webinar for my group, The Portland Fibromyalgia-ME/CFS Group, from the comfort of my bed – in my pajamas.  I paid for this two-hour webinar with a migraine in the middle of the night.  Well, it was ONE MIGRAINE TOO MANY and it just PISSED ME OFF!  I couldn’t even run a little webinar from bed?  Plus, I had help.  My co-leader did a chunk of the work so that I didn’t have to.  And STILL I got a migraine.

I woke this morning with my head still hurting but my fighting spirit finally firmly back in place.  I don’t know how, but I WILL kick CFS butt!!  This illness will NOT win.  I will not lay quietly in bed while the world spins in wonder around me and without me.  I absolutely plan to be a part of that wonder.

So, CFS, ME, chronic fatigue syndrome…whatever you want to call yourself…I may not be able to get rid of you, but I will learn how to work with you and have a full and happy life.  So bring it…GAME ON!

Often times when we are chronically ill and in pain our ego-self takes a beating.  Our world may be skinnied-down to the four walls of our house, or even our bedroom.  If we can get out, our energy might be consumed running errands and doing the grocery shopping with none left for social get-togethers with friends or outings with the family.

Sometimes it is difficult to find self-acceptance when we feel we “should” be doing more, we “should” be a better friend/spouse/parent, or we “shouldn’t” allow our illness to define who we are.

Maybe we even layer on a few oughts and musts.  We ought to get eight hours of sleep.  We ought to exercise like our doctors have told us to.  We must lose the extra weight we have gained.  We must not turn our friend’s invitation for lunch down yet again.

This should-ing on ourselves can know no bounds until we remember that we are already good enough.  There is nothing more we must do.

The antidote for being dictated to by the ego, by the should-ing, is self-acceptance.  Self-acceptance is about realizing that you are whole, perfect and lovable just the way you are.  You have nothing to prove.  Self-acceptance means that you don’t need to change yourself.  Instead, you have an open invitation to get to know yourself — the real you, the Essential you.  Yes, even the sick you.

In “Man’s Search for Meaning,” Victor Frankl said, “My definition of success is total self-acceptance.”

That is what we are after…total self-acceptance.  However, we can start small and build our anti-should-ing muscles with each time we choose to accept ourselves over judging ourselves.

A journaling exercise for learning more self-acceptance could be to write down ten ways that you “should” on yourself.  Read back over your list and think about whether it is really true that you should do this.  As Byron Katie would say, can you absolutely know that it is true that you should, ought to or must do these ten things?