In which my ME/CFS gets out of hand, and I try a new approach (long post)

I had a huge setback in my ME/CFS about a month ago, and I am currently bed-bound, with bad orthostatic intolerance. For a week or two, I wasn’t sure if the setback would be a brief one, but now it’s clear that this is a monster crash, one in which it takes me months and months and months of careful pacing to get free of my bed. I am one of those people who rely almost entirely on pacing, rather than medications, supplements, or other treatments, to manage my illness. But I’ve decided to change my approach, because the gradual recovery of function that I get from pacing alone is excruciatingly slow.

Two of the main things I am changing are addressing orthostatic intolerance (see below) and trying to incorporate a careful “exercise” approach (see below again).

But I also contacted my doctor for recommendations, and based on her thoughts, I have started a couple of meds and some supplements:

  • daily baths with Epsom salts, for magnesium (seems to help with pain, and may have other benefits)
  • vitamin B12 sublingually (1000 mg per day) (my doc wouldn’t give me injectable, but studies are pretty favorable about this alternative)
  • Famvir 500 mg daily (antiviral suggested by my doc)
  • Deplin 7.5 mg daily (prescription folate)
  • Immunopro, one scoop daily (special whey protein)
  • vitamin D3 2000 mg daily
  • increased water and salt intake

And here are some things I am planning to start soon:

  • 4″ head-up tilt for my bed (sometimes called Inclined Bed Therapy) (I’ll explain this too)
  • compression stockings (ditto)
  • low dose naltrexone (I’m waiting to hear from my doc on this one)

Another possibility, but one I’m holding off on for a while:

  • florinef and potassium (to expand blood volume)

I am also considering “mitochondrial cocktail” supplements and methylation-block supplements (a la Rich van K). But I don’t want to start too too many things all at once.

It finally dawned on me, after 8 years with this wretched illness, that a huge part of my disability is orthostatic intolerance (OI), which means that being upright, or even sitting up, is extremely hard on me. For all these years, whether I’m bedbound, housebound, or somewhat mobile, I’ve had to keep close track of how much time I spend sitting up, standing, and walking. Sitting with my legs under me–as in bed–is much more sustainable than sitting in a chair with legs down. And sitting in a chair is much more sustainable than standing or walking. My self-management has always involved frequent horizontal rest breaks. The verticality effect seems to me to be at least as important as the exertion effect (carrying things, moving quickly, etc.).

I don’t know why I didn’t focus on this sooner. POTS (postural orthostatic tachycardia syndrome), a subtype of OI, has many of the same symptoms as ME/CFS (including poor exercise tolerance), and recent studies suggest that the majority of people with ME/CFS also have POTS. (POTS is diagnosed by testing how your heart rate responds to being upright; if it goes up dramatically as you stand for a while, you have POTS.) In fact, it’s possible that many people who’ve been told they have ME/CFS actually have POTS alone instead. POTS is another poorly understood condition that’s finally emerging into the light of medical recognition, but it carries much more legitimacy with most doctors than ME/CFS, and is also a bit more treatable. Some folks are finding their ME/CFS easier to manage if they first address their orthostatic intolerance.

There are various drug treatments for POTS, and I might start trying those this spring. But there are also some simpler, safer treatments that help some folks, and I’m planning to try all of these:

  • increase salt intake and fluid
  • use medical-grade compression garments (I’m starting with stockings; a few folks have had great luck with anti-gravity suits used by astronauts and pilots; there are also “abdominal binders,” which I might try eventually)
  • tilt your bed’s head up by 4-6 inches (there is good evidence that this increases blood volume, which helps decrease OI) (I’m going to take this slowly, because I spend so much time flat in bed that I fear making myself worse by tilting up full-time; I’m going to tilt a daybed up first, and gradually spend more time there, until I’m sure I can safely tilt up my regular bed.)
  • exercise core muscles (well, this is a trick with severe ME/CFS; but I’m already experimenting with brief squeezing of core muscles a few times a day)
  • exercise in a reclining position (yoga, leg lifts, perhaps brief recumbent bicycling)

I have been following Nancy Klimas’s recent work on exercise in ME/CFS. She and others are finding that patients have very low anaerobic thresholds, and that they have very bad reactions to exercising above their thresholds (which can be tracked through heart rate monitoring). I don’t entirely understand the science, but her recommendation is to exercise for very brief spells, with lots of rest interspersed with the activity, and always keeping your heart rate below your threshold. For most of us, that threshold would be somewhere between 90 and 105 beats per minute (unlike healthy folks, whose thresholds are much higher). The exercise might help with the illness, but should at least help prevent deconditioning (unless you overdo, of course).

I have taken to wearing a heart-rate monitor around the clock, and one thing that’s clear is that I can’t stay below my threshold all the time, because just walking to the bathroom puts my HR at 120. If I fill the teakettle at the sink, my HR shoots up to 136. On the other hand, I can lie on the floor doing a few slow leg lifts, and my HR stays below 90. Obviously, I shouldn’t be filling the teakettle!

My experience tells me that I can in fact get away with very brief activity above my threshold–like walking to the bathroom. But I am now keeping close track of how I’m responding to different activities and making sure that I make these forays past my threshold very brief (sitting on the bathroom floor if necessary until my heart rate settles down).

On the other hand, discovering that I can do leg lifts without raising my heart rate much has emboldened me to do my own experiment in “graded exercise” (this is NOT Simon Wesseley’s GET, however–don’t get me started on that!). Even though I can only tolerate sitting up in bed for about 15 minutes at a time right now, and even though I am not leaving the 2nd floor of my house these days, I am getting down on the floor twice a day (hoping to increase to more times), doing a very very slow exercise routine that takes almost half an hour, but only includes a few minutes of any sort of exertion.

If you are curious, here is the routine, which I do twice during the day: I do 5 slow leg lifts on one side (lying on back, one knee bent, lift other leg straight from ground until knees are side by side). I rest flat for a minute or so. Then 5 lifts on the other side. Rest. Do a set of Kegels (pelvic floor muscles). Rest. Then 4 mini-crunches (crunching abdominals and squeezing glutes). Rest. Then another set of leg lifts both sides. Rest. Leg lifts one more time. Rest. Stand up and do 10 toe lifts (rise onto tiptoes). The resting takes far more time than the exercises.

Now, if you are bedbound and reading this, you should be aware that I am just recently crashed, so my muscles are not as deconditioned as they would be if I had been bedbound and not exercising for a long time. This amount of exercise might be completely inappropriate for someone who has been in bed for a long time or who is not stable (still spiraling down).

My plan is to first do what I’m doing for a week and see how I fare. If all is well, I will add a third session (spaced out from the others by a few hours). Then I will add another session (this starts to take a LOT of time!). I think that I am more likely to be able to handle more sessions of exercise, well spaced apart, than a greater intensity of exercise. If this all goes well, I am planning to add incrementally to the routine itself. And, as the weather improves, I hope to add a tiny bit of walking to my day.

Of course, with all the changes I am making, I won’t really have any idea what is helping and what is not. But right now, I don’t feel that I have the luxury of treating myself as an experimental subject. I am going to try everything that appears to me to hold some promise without having significant drawbacks (like many medications). I will be keeping records, and I will post my progress.

Wish me fortitude and luck!

 

Voices

I am about a week into my work with The Artist’s Way, and already I am noticing a small shift. A daily exercise in the first week, one which sounded rather silly to me at first, is to choose an “affirmation” (either from a provided list or one of your own) to encourage you in your creative journey. The affirmation is a statement of fact, for example, “I am willing to learn to let myself create.” The instructions are to write this affirmation 10 times, and meanwhile to notice and jot down the objections that arise in your head. These are called “blurts.” Then you think about how these voices came to be in your head: a fearful or critical parent? a sadistic teacher? a stodgy schooling? And then you answer the blurts from a loving, courageous, positive place.

The first three days of my blurts were truly vicious. “Who do you think you are? Some sort of artist? What hubris!” “What could you possibly have to contribute?” “You are not creative, but a stodgy, analytical thinker.” The voices were many, a chorus of nay-sayers: both of my parents, an old therapist, a cruel teacher, my conservative high school, a society with skewed values. I have to say that my parents’ fearful, condemning voices were dominant in this chorus.

But today, when I wrote my affirmation (“Through the use of a few simple tools, my creativity will flourish”), the voices were pretty quiet, much less angry and attacking, and less personal. In fact, today is when I realized for the first time in all my years that my academically excellent private high school actually denigrated creative efforts, unless they were already of very high quality, and even then, only within a narrow range: classical music, painting, conventional poetry or fiction, high-brow theater. My own artistic impulses lie more in the direction of craft: costume-making, pottery, quilting. And  my more high-brow pursuits at that time (writing, particularly poetry, and drawing) were too undeveloped in high school to be taken seriously or encouraged.

Now I understand why all the committed artistic sorts were so terribly disaffected in high school. What they had to contribute and what they wanted to pursue were not valued at all in that environment. It’s tragic actually. I can’t help but think that this experience is very very common, although my posh prep school may have been particularly damaging in this way.

I didn’t realize this until today in part because I was not a committed artistic sort (my home life had ruled that out), and I was a successful student in all the ways that were valued.

I don’t want to say that I don’t value those more academic successes, but I did another Artist’s Way exercise today that was eye-opening. It’s a great little exercise: come up with five alternate lives (pursuits or identities) that you can imagine for yourself and jot them down. None of mine had much at all to do with my academic background. Modern dancer. Costume maker for theater. Bass player in a blues band. Elementary math teacher and developer of curriculum. Poet and potter. (The math interest would have been encouraged by my high school, but the focus on elementary education would have turned the praise to disdain.)

“Who do you think you are?” Well, apparently, not who I was raised to be.

Beginning

This blog is a journey through a wilderness, the wilderness of living with a life-changing illness, in which all the rules of life are changed. There are no straight roads here, no signposts, none of the comforts of predictability nor of the familiar and the ordinary. The way forward is unclear: sometimes it is completely blocked and there is nothing to do but sit and wait; sometimes it seems smooth and that is when it is most treacherous. There are sudden and frightening descents, deep deep chasms, slow upward climbs, and the occasional resting place.

The irony of this journey–a journey through the disease known as ME/CFS–is that, although it is arduous and frightening and requires great discipline, it often takes the form of patiently lying still in bed for weeks or months at at time, and at best allows brief, closely measured forays into gentle activity. So, what looks like indolence and perhaps even luxury to hard-working, clock-beating friends and family members is, from within, an experience of excruciating deprivation and restraint. It is a lesson in loss, from which life must be wrested.

This blog is also a journey out of a wilderness, another kind of wilderness. In my life with ME/CFS, over the course of years, I became lost to myself. As I learned to navigate the physical challenges of the illness with surer footing, I nonetheless lost my ability to look to the future or to hope for anything. Faced with the daily knowledge that I could become bed-bound again at any moment, and that my only protection was the avoidance of much of life, with its constant enticements, I descended into a numb place increasingly filled with addictive, self-destructive behaviors. I cut myself off from old friends, old pleasures, old dreams. I became the illness.

I am on a journey back to my self. The disease of ME/CFS will probably always be a harsh reality in my life, and I know I will sometimes feel overwhelmed with its difficulties and uncertainties, but now I understand that I can travel through this wilderness and yet not be lost to myself.

This blog–and my journey–is guided in part by a book that many others have used before to find themselves, The Artist’s Way, by Julia Cameron. The Artist’s Way is based on years of Cameron’s experience of teaching artists to find their voice, overcome their blocks, and express themselves fully and freely in their art. The book leads the reader through a program of self-discovery, with daily and weekly  exercises. In this blog, while I share my experience of life with ME/CFS, I will also recount my journey along The Artist’s Way as I travel with eyes wide-open through the wilderness that is life.