what/where/how

The purpose of this blog is to inform friends and family regarding my being sick and the treatments I am pursuing. Hopefully it will also be of use to others with the condition. Since I have a limited amount of energy and since I find the topic difficult and sometimes awkward to discuss with others, I thought this would be a good way to get the ball rolling.

So, what do I have? I have Chronic Fatigue Syndrome, also known as CFIDS (Chronic Fatigue Immune Deficiency Syndrome) or CFS/ME (Myalgic Encephalomyelitis). Many with this condition prefer the term ME because it is more scientific and better gets across the seriousness, whereas CFS can be interpreted as meaning just not getting enough rest. It is much more than being chronically 'tired'. I have a dysfunctional immune and endocrine systems, sleep impairment, food allergies, extreme hypoglycemia, orthostatic intolerance, post-exertional malaise, chemical sensitivity, and on and on. The cause is unknown and there is no known cure or even effective treatment. The best that can be done at this time is to treat individual symptoms as well as possible. (For more details on what constitutes CFS/ME, please see here)

How does it impact my life? In almost every way. I work from home because I cannot do a full-time job. I have tried, and I have been miserable with it. When I first moved to Tucson after college I was only working about 25 - 30 a week at the tutoring center. Even this was very difficult for me, and I would often come home exhausted.

The food allergies and hypoglycemia are another problem, and particularly difficult to work around. Eating anything with refined ingredients or preservatives generally makes me feel ill. For this reason I eat almost exclusively food that I prepare myself or have meals from restaurants where I know exactly what is in them (Chipotle, for example). The cause of these food allergies is unclear. It could because my disrupted immune system identifies all but the most carefully selected foods as 'foreign invaders'. Most food these days has a lot of additives that are not naturally-occurring. Last time I indulged at the movie theater and got some candy and popcorn I was terribly sick for days and could barely function.

I had a food allergy test run a few months ago and several foods that I long suspected were problematic for me indeed showed up as being so: corn, dairy (particularly milk, whey, and yogurt). Other foods that registered for "high" reaction class include sesame, asparagus, and cranberries. Corn is by far the most difficult to avoid since nearly all processed foods in the U.S. contain high fructose corn syrup (HFCS). I should point out that the type of food allergy I have is called IgG, which means delayed-onset reaction. I don't immediately swell up as is probably the more classical example. Rather, I feel poorly several minutes or hours later.

Another test my doctor had run last winter was a neurotransmitter profile and thyroid panel. My thyroid results were normal, which is good, but my levels of several important neurotransmitters are out of whack. Epinephrine (aka adrenaline), serotonin, and glutamate were all quite low. I do not know the function of glutamate but serotonin is important in mood regulation/depression and also for reaching deep sleep. I already take Zoloft (a selective serotonin reuptake inhibitor), so my naturally-produced level of serotonin must be very low. The low level of epinephrine is not a surprise as most with CFS/ME have low levels of both that and the stress-response hormone cortisol. The result of this is I cannot react properly to stress when needed as these chemicals are already depleted in my body.

Post-exertional malaise means I feel worse after exercise or other (heavy) physical activity. Whereas most feel invigorated after exercise, I generally feel much worse. The level of discomfort depends very much on how far I push myself. The harder I push, the worse I feel later. So the only exercise I do now are low-output cardio such as walking, biking, or swimming. I must always be careful not to overdo, or "crash" later.

The last thing I will discuss in this post is orthostatic intolerance (OI), which simply means difficulty being upright. I have not had this specifically tested for but I am quite sure it is a problem. I have long had low blood pressure and many with OI experience a further blood pressure drop when standing (this is known as Neurally Mediated Hypotension or NMH). For example, I have trouble standing in line for more than a few minutes at a time. The blood pools in my limbs and I start to feel light-headed and uncomfortable. Consequently I arrange my schedule to shop at off-peak hours, I avoid the mall, and I generally don't plan to do more than a couple errands at once. It also means activities like visiting a museum (lots of standing around) are not fun, although not because I am uninterested.

Despite the myriad of difficulties, there is hope and progress. In the past year I have slept better with the help of melatonin (3 mg nightly). The skin irritations that I have had for years on my fingers and on my eyelids have mostly gone away. My allergies are a bit better, and I've learned some recipes. You do save a lot of money cooking at home, too.

So that is all for my first post. To my family and friends to whom it may sometimes seem I am ignoring or forgetting about, please know I am not. Simply, I am sick and must make taking care of myself the top priority. Also if you have any questions about what I have discussed here please do ask!