Sleeping Through Life

My Day Today:

• 11:30 am: woke up & ate breakfast
• 12:00 pm - 2:00 pm: watched TV with husband (too tired to do anything else)
• 2:00 pm: took a nap
• 5:30 pm: woke up & ate dinner
• Evening: work on blog, balance checkbook, hang out at home with husband

Today was not an unusual day for me. In fact, this is a normal schedule for a Saturday or Sunday.

During weekdays I have to force my body to stay up all day because I work full time. Though I try to avoid caffeine as a general rule, I will drink coffee or soda if I need added assistance in staying awake and staying functional. The result is that I feel like I'm a walking zombie by the end of the day. The funny thing is that I tend to have a smile throughout the workday because I enjoy what I do. At the same time, however, the smile hides how I feel physically.

By the time I get home from work I don't have the energy to do anything other than sit around and watch TV or read. Sometimes even reading is too difficult. Trying to have a conversation with anyone including my husband can be too exhausting to attempt. Phone calls are definitely out of the question. Pushing myself so hard all the time takes a toll. It is not unusual for me to have a sore throat.

When the weekend rolls around, my body is in full rebellion mode. It is angry with me for not allowing it to sleep all it wanted during the week. I cave in to its demands and let it control my weekend. There are many weekends that I don't leave the house because I've pretty much slept through it. My husband will usually do the shopping and any other errands that need to be done. Only my husband sees my daily struggle. It is the weekend version of myself that my family, friends, and colleagues do not see.

This is my double life.

Because weekends are for sleeping, my husband and I do not often go out. We don't go to museums or for walks in the park; we don't play sports or go to the gym together. Most of the time we stay in and watch TV or movies (Netflix is a great invention) because that's all I have the energy for. We rarely get together with friends or family.

I am sleeping through life.

Why am I such a big advocate for research about CFS/CFIDS? I need a cure. Fast. I've already missed out on too much.

Medications & Treatments

I have been prescribed and tried countless medications and treatments over the years. They are too numerous for me to remember, so I am just listing what I am currently taking or doing.

I want to emphasize that these are medications and treatments that work for me. Every person is unique and may or may not find success using the same therapies.

Current Medications & Treatments
The following items have been prescribed or recommended (in the case of OTC items) by my doctors:

Allergies

• Zyrtec (antihistamine)
• Flonase (corticosteroid nose spray for allergic rhinitis)
• Immunotherapy (allergy shots)
• Sinus Rinse (nasal wash)

Anemia, Iron Deficiency (Update July 2009: my iron levels are no longer an issue; I no longer take Tandem every day...)

• Tandem (prescription iron)

Asthma

• Advair 250/50 (inhaled steroid)
• Albuterol (bronchodilator, emergency inhaler)

CFIDS/CFS (Update July 2009: I've started a new treatment plan in addition to what is already listed here...see below for the link)

• Intravenous Glutathione
• Glyceron Plus injections
• Oral ATP supplements

Depression

• Zoloft 12.5-25 mg

Eczema

• Topical steroids

General Health

• Multivitamin
• Fish oil

Insomnia

• Melatonin 5 mg
• Benadryl (only if I'm really desperate)

Irritable Bowel Syndrome & Lactose Intolerance

• Lactase supplements
• Fiber supplements
• Probiotics

Migraines/Headaches

• OTC Tylenol & Advil at the same time (i.e., one of each)

Polycystic Ovarian Syndrome

• Yaz (birth control)

Vitamin D Deficiency

• 1000 IU Vitamin D

Other Lifestyle Changes

I honestly don't know how effective some of these things are in improving my health. I figure even if they aren't helping me, they are certainly not hurting me.

• Chlorine filter for shower
• Non-toxic, "green" detergents and cleaning products (for example, we make our own glass and window cleaner with water, vinegar, and dish soap)
• Anti-mite laundry additive
• Mattresses and pillows covered in anti-mite protective covering
• HEPA vacuum cleaner
• HEPA filters for heating/cooling system
• Organic foods when possible
• Preservative-free and other natural foods when possible
• "Green" maid service twice a month (This item is a greater financial sacrifice than all the other changes; however, I believe it is worth it for the sake of my health and marriage. Physically, it is difficult to do much house cleaning. In terms of my marriage, it is not fair for my husband to have to do all the cleaning all the time.)

Notable Medications & Treatments I've Tried but No Longer Use

• Elidel (for eczema) - did not help much
• Acupuncture (for eczema) - did not like all the poking
• Singulair (for asthma & allergies) - did not notice any difference with or without it
• Ambien CR (for insomnia) - did not like side effects
• Combination Glutathione/ATP injections - too painful
• Multiple migraine medications - I no longer have many migraines (I don't know why), so when I do have them I take OTC medications

Note Added July 2009: I have started a new treatment protocol. See Starting a New Treatment Plan. I have added the treatment on top of what I was already taking.

My CFIDS/CFS Symptoms...

...That Resulted in my CFIDS Diagnosis

I was diagnosed with CFIDS in 2005; however, many of my symptoms began in the early 2000's and possibly earlier. The symptoms listed below are in addition to the ones that accompany the conditions/illness I listed in my Health Timeline post:

• incapacitating fatigue only made worse by exercise/physical activity
• sleeping 16-20 hours per day
• too ill to work full time
• frequent sore throats
• frequent low-grade fevers
• swollen lymph nodes in neck and armpits
• weakened immune system (I would catch countless viral and bacterial infections)
• mental fog (feeling like all my thought processes were slower)
• impaired memory, difficulty concentrating
• sensitivity to light and sound
• sensitivity to temperature (I am often too hot and sweating or too cold and shivering)
• random bouts of dizziness
• random bouts of nausea (not necessarily related to the dizziness)
• random bouts of muscle twitching
• low Natural Killer Cell levels (assessed through blood tests)
• low ATP levels (assessed through blood tests by measuring cyclic AMP levels )
• low glutatione levels (assessed through blood tests)

...Today

Today some of my CFIDS symptoms have improved thanks to some unconventional treatment prescribed by my current doctor (the same one that diagnosed me). I'll discuss my medications/treatments in a future post.

My immune system has improved quite a bit. My NK cell levels had reached near-normal levels at the time of my last NK cell blood test a couple years ago (my insurance company, Aetna, will no longer cover tests for NK cells). The number of bacterial and viral infections I get every year has decreased significantly. My chronic sore throats and low-grade fevers are not so chronic. My lymph nodes do not bother me nearly as often. My quality of life has greatly improved now that my immune system is not quite as insane.

Though fatigue still controls much of my life, it has eased up a bit since I was first diagnosed in 2005. My ATP and glutathione levels have improved somewhat, but their levels remain below normal...which probably explains the continued fatigue.

Despite the improvements, I still grapple with the following symptoms (in addition to all my other symptoms that accompany the chronic illnesses/conditions mentioned in my Health Timeline post):

• constant fatigue only made worse by exercise/physical activity (the fatigue can become incapacitating)
• sleep 12-14 hours per night on weekends and days I don't have to go to work
• mental fog (feeling like all my thought processes are slower)
• impaired memory, difficulty concentrating
• sensitivity to temperature (I am often too hot and sweating or too cold and shivering)
• sensitivity to light and sound
• sexual dysfunction
• random bouts of dizziness
• random bouts of nausea (not necessarily related to the dizziness)
• random bouts of muscle twitching
• low ATP levels (assessed through blood tests by measuring cyclic AMP levels )
• low glutatione levels (assessed through blood tests)

Health Timeline

Please Note: The information below may be out of date by the time you read this post. Additionally, some of the ages are rough estimations.

Following is a rough timeline of my major medical diagnoses given by general practitioners, internists, and specialists (including ENT, pulmonary specialist, allergist, dermatologist, OB/GYN, GI). I have undergone countless blood tests and throat cultures and have had CT and MRI scans, two colonoscopies, allergy and asthma tests, and numerous other tests and procedures that resulted in my diagnoses. I say all this to emphasize that I have not self-diagnosed any of my conditions.

I have listed approximate ages to the best of my memory. I have included every diagnosis I can remember, even ones I find somewhat embarrassing, for any future or current health care practitioners, fellow patients, and any others who might be interested. I have not included details about symptoms because it would cause this posting to be too long.

Childhood: diagnosed with thalassemia minor, developed chronic strep throat infections and allergies

18: had laser tonsillectomy that partially removed tonsils; diagnosed with gastroesophageal reflux disease (also called GERD or acid reflux)

19: diagnosed with asthma

20: diagnosed with non-specific colitis (treated for ulcerative colitis) and hemorrhoids

21: diagnosed with mononucleosis

22: diagnosed with scabies, developed eczema as a result

23: had recurrence of colitis, experienced frightening side-effects to mesalamine (hair loss, tremors, vertigo, balance problems, numbness in toes); suffered from influenza and 101+ degree fever

24: diagnosed with polycystic ovarian syndrome; suffered from influenza and 101+ degree fever

24-25: developed chronic strep throat infections, had complete surgical tonsillectomy followed by complications (throat would not heal, unable to swallow) and visit to Emergency Room

26: officially diagnosed with Chronic Fatigue and Immune Dysfunction Syndrome; developed allergy (rash) to quinolone class of antibiotics

28: diagnosed with mild sleep apnea; developed migraines

30: had recurrence of severe hemorrhoids; developed iron deficiency anemia; developed vitamin D deficiency; new GI doctor concluded I no longer have non-specific colitis but do have lactose intolerance and irritable bowel syndrome (Update July 2009: my iron levels are no longer an issue.)

Additional Illnesses: I have had colds, respiratory infections, and additional throat infections that I did not list because they were too numerous to list. Sometime along the way, I developed allergic contact dermatitis to all types of earrings, as well as the glue of band-aids. I have suffered on and off from mild to moderate depression. I have had chronic vaginal yeast infections over the years, in addition to recurrent athlete's foot. I suffer from bouts of insomnia, having difficulty falling asleep. I have experienced tinnitus (ringing in ears) and had numerous canker sores as well as one or two painful outbreaks of cold sores.

Comments: It is clear that several of my illness/conditions can (and often do) cause fatigue. Iron deficiency, for example, is something I have been tested for numerous times, but I only recently developed it. Based on my overall health history, as well as symptoms and test results I have not listed on this posting, my main diagnosis is CFIDS. I'll discuss my symptoms and test results in a future post.

Illnesses I Don't Have: (I'm listing these because people sometimes ask if I've been tested or screened for these): thyroid disease, lyme disease, multiple sclerosis, diabetes, celiac disease, narcolepsy, HIV/AIDS, lupus and a myriad of other autoimmune diseases. I also do not suffer from major depressive disorder or hypochondriasis.

My First Blog Post

I live a double life. By day I work full-time at a great job and appear young and healthy. By night I am someone who suffers from chronic illness, has trouble walking up a flight of stairs, and is usually too tired to do anything other than watch TV and go to bed. I know I am one of the "lucky" ones with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) because I am able to work...though I haven't always been this functional.

I have been sick with CFIDS (also called Chronic Fatigue Syndrome) for my entire adult life. My health started to deteriorate slowly when I was 18 and got much worse from 22 to 24. When I was at my sickest, at ages 24 to 26, I was pretty much housebound. I slept 16 to 20 hours a day and could not hold a full time job. I had constant sore throats and low-grade fevers, caught everyone's cold/flu/bacterial infections regularly, was exhausted all the time and felt even worse after exercising, and just could not live a normal life. I'll talk about all my symptoms and health problems in greater detail in future posts.

Now that I am better off (though far from being completely well) I do what I can to be an advocate for all the CFS patients who are still too sick to leave their homes. For the past few years I have participated in the CFIDS Association's Lobby Days, which involved traveling to Capitol Hill in Washington, DC to meet with senators and congressmen and/or their health liaisons.

In April 2009 my husband and I traveled to the Centers for Disease Control and Prevention (CDC) in Atlanta, GA to give public testimony and comment on the CDC's 5-year strategic research plan proposal. Most recently (this week, in fact), I traveled to Washington, DC to speak at the CFS Advisory Committee's meeting at the Department of Health and Human Services (DHHS).

I've included my (slightly edited) comments from yesterday's meeting below (each person was given a maximum of five minutes to speak):

Thank you for having me.

My name is Alyson, and I flew in to be here. I am also happy to have my parents and cousin here to support me.

I am a CFS advocate and patient, and I do what I can to give a face and voice to the many CFS patients who are too ill to leave their homes. I'm 30 years old and have had CFS for my entire adult life; though I've only been officially diagnosed since 2005 because it took more than four years and four doctors to finally get diagnosed.

My original plan for today was to come and sit in on the entire advisory committee meeting, but my plans were foiled by my disease. This morning I woke up, ate breakfast, then took a five hour nap. My disease is a great frustration. This weekend my husband and I celebrated our fourth anniversary at Disneyland. The ONLY reason I survived the weekend is because my husband pushed me around in a wheelchair. I'm not going to explain how this disease has affected my marriage or quality of life right now because it will take more than five minutes.

I am here today to give you a sense of urgency. Not enough progress has been made in the education of physicians and other health care workers. The doctors I went to before finding my current one were skeptical at best and completely dismissive at worst when I proposed the possibility of my having CFS.

More needs to be done more quickly on all fronts -- educating health care professionals and the public, research on the disease including diagnosis and treatment. I've already lost my 20's; I don't want to lose my 30's. Please use your power and influence to help us move forward.

Thank you.

I'm too tired to write anything more, but I plan to write again soon (probably tomorrow)! Thanks for reading.