Tag Archives: M.E./C.F.S.

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LDN Day 22…God is music.

I knew I should have posted something last night while I was feeling good… Yes, I dared to say good. I was dizzy and my neck hurt and my nose and eyes were driving me nuts blah blah blah, but, there was this moment at the dog park where I caught myself almost skipping, looking at the sunlight and glimpses of blue sky coming through the trees, humming along to music on my headphones, and SMILING. I felt normal. I felt joy. I felt hope. I thought, for the thousandth time, Maybe things have shifted. Maybe this is the beginning of the end of my affliction. Maybe I’ll be able to get up tomorrow and write, “I’m getting better, I slept well, I have hope for a future and career. Hooray for LDN and supplements and…life!”

Well, I’m not feeling so great this morning, of course. I actually had night sweats last night for the first time in weeks. After 10 hours in bed, my Zeo tells me I got exactly 6 hours sleep. I woke up with a bad headache, my muscles hurt, I’m really grumpy and I am the farthest thing from refreshed, but I have this leftover glow from yesterday. It’s like waking up with a really bad hangover, but knowing that you spent the night drinking with a wonderful guy and can’t wait to do it again.

I pray that this upward trajectory continues. I have to stop therapy because of money concerns and my insurance on massage therapy has run out. The low-dose naltrexone is $60/month (not covered by insurance, of course) and I want to be able to afford it for a while longer. I still haven’t finished the laundry I vowed to complete days ago ~ that will happen today ~ but I tidied the house and made oat bars yesterday (details on my next diet post), so those small things make me feel accomplished.

My husband went to a wedding yesterday without me. It wound up being a huge reunion of his late father’s family. I would have loved to have gone and met everyone. I feel like a ghost, like a figment of his imagination. I spent so many years pouring myself into work and now, when I have the time to pour myself into friends and family, I’m physically unable to participate. Cruel joke. Dear Friends and Family: I am participating from afar. I look at every picture, I read every email, I look at all Facebook posts, I cherish every piece of mail. If I don’t reply enough or call enough or show up enough, please know that YOU are the most important thing to me. You all keep me going, keep me hopeful, keep me grateful and compassionate, and allow me to meditate on what is truly important.

Finally, I am grateful for music. This year, whenever I have found myself lost in some good feeling, inevitably, I have my headphones on…

As the great Kurt Vonnegut said:

If I should ever die, God forbid, let this be my epitaph:
The only proof he needed for the existence of God was music.

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Dark Yin

I have another good doctor. Well, not actually a doctor ~ a master. The acupuncturist has a Master’s Degree in Acupuncture and Oriental Medicine and he was wonderful. As soon as I finished recounting my story, he said, “You have a bug”… which I think I needed to hear. I know I do and, interestingly, this is precisely the first thing my wise-doctor father said when he was here: “You’ve got a bug.”

Even if there was 100% concrete lab proof that I have M.E., most cases begin with a sickness, so must patients probably are infected with a bug. The Good Master acupuncturist said, “I have absolutely no doubt that something has taken up residence in you, but we don’t know if it’s bacterial, viral or parasitic. There are bugs we can find and treat, there are bugs we can find but usually wouldn’t test for, and there are bugs that we don’t have the ability to test for, so we’d never find them. In Chinese medicine, we treat for all bugs rather than looking for the particular culprit which could be hidden deep in the body.” They call the bad stuff that you can’t see or find “Dark Yin” and the problem it has caused with me is called “Gu Syndrome”.

Now, normally my ears slam shut when people talk about Chinese herbs or Oriental medicine. Like I said, I have always been a traditional Western medicine type of lady, but, if I’ve learned nothing else this year, I’ve learned that I don’t know shit. Who am I to say that this or that is dangerous? Who am I to say that this or that will work or not work? None of the doctors I have seen has found anything wrong with me yet and none of them has any advice except sleeping pills and anti-anxiety meds. Who am I to take their tests, opinions and traditions as the only options?

I did tell him No. Way. when it came to taking the Chinese herbs. He asked me to research it and think about it. My husband says, “Of course you should try it!” Those of you dealing with this disease know that doctors give you no answers and you would do anything to get better, so I want to put this information out there for you to consider. I am going to upload a photo of the herbal remedy info sheet the Good Master gave me. Here’s the first line:

“A unique remedy for the important clinical phenomenon of Abdominal Gu Syndrome: difficult and treatment-resistant diseases (such as IBS, chronic fatigue, fibromyalgia) caused by chronic, often undiagnosable parasitic infections…”

Although I’ve gone over the genesis of my illness in my head a million times, our conversation today helped me see it more clearly and feel more hopeful. He said, “Can you pin-point the day you got sick?” And I CAN. That’s why I think the Bad Bug scenario rings true. I was on vacation in Virginia, when, very suddenly, a got diarrhea. Believe it or not, I’d never in 38 years had the traveler’s diarrhea that people talk about. I was not nauseous, I did not vomit, just diarrhea that started suddenly and did not stop for a few days. I couldn’t eat ~ not really because of nausea, I just could not eat. I stared at an egg, willing myself to take a bite and I couldn’t. It scared me, brought me to tears ~ that had never happened, either. I thought everything resolved and then, three months later, I was writing Christmas cards and something started to happen to my body. I thought, Uhoh, I’m getting really sick. I moved to the couch and fell asleep for an hour, then, I woke up and told my husband that something was very wrong and I was worried that I might have to go to the hospital. It was the first cycle of chills and sweats that would continue for 9 months. “Chills and sweats”, of course, is a description that does not do it justice. For a better picture, read my diary excerpt:

https://ldndiary.wordpress.com/2012/08/31/how-my-cfs-me-began-an-excerpt-from-my-diary/

Now I wonder, did the Dark Yin take hold of me in Virginia, make me sick for 3 or 4 days, burrow deep and incubate for another 2.5 months and then start making me very sick? It was cyclical; it seemed like a parasitic life cycle, that’s why malaria fit so well. But my body couldn’t fend it off for whatever reason.

Feel free to not read past here. Below is my own investigative work for my own records. Believe it or not, I have never looked at the timeline.

During this whole time between June and December of last year, I was seeing a sports medicine doctor, a physical therapist and a massage therapist for my recurring, crippling neck injury. I also had to get two crowns over the course of these months, requiring multiple visits to the dentist. Also, when I look at my diary, I worked SO much. Every day was so busy and stressful and hectic. I didn’t take any time off whatsoever when I was sick ~ only for my trips to Ireland and Virginia.

June 17th-27th: In Dublin. I had a swollen tongue on 24th and 25th, took benadryls. I had a chilled/syncope/collapsy/low BP episode on the 26th, but didn’t go to the hospital.

Last week in June: continued to have swollen tongue.

July 11th: Saw Allergist who diagnosed me with autoimmune urticaria and angioedema and told me to take Zyrtec.

July 15th-26th: Acute bronchitis: short of breath, congestion, body aches, cough, mucous, sinus pressure.

July 22nd-24th: My Father’s visit.

August 6th: To Virgina.

August 9th-10th: Sick with diarrhea.

August 11th: Flew home early.

August 17th-21st: Drove to Boise, ID (with husband and dogs) for work.

October 9th-10th: Work retreat.

October 19th: Flu shot.

November 3rd/4th: Pretty sure I was sick with chills and sweats during this time.

November 17th-20th: Pretty sure I was sick with chills and sweats during this time.

November 22nd: Saw endocrinologist to talk about symptoms.

December 15th: Saw PCP to talk about symptoms and get malaria test.

December 20th-22nd: VERY sick.

December 27th: Was told malaria test was positive, but had two subsequent tests that were negative.

December 30th-January 1st, 2012: VERY sick. My mother’s visit.

January 3rd-10th: No appetite, severe chills, heart races, breathless just from standing up. Sweats every night, can’t eat, weak, lost 5 lbs, feel like I’m going to die.

I stuck out work for four more months before I had to leave my job to try to get better. The rest is history. The Dark Yin is still my dark passenger.

 

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LDN Day 20… feel awful.

I feel really crap this morning. I shouldn’t even write, it’ll just be depressing. I was quite excited going to bed. I had done three sun salutations without hurting my body or pulling a muscle and I was thrilled. I was planning on writing this morning that I had made progress! But, no. I woke up this morning after six hours sleep in the process of throwing my neck out. I woke up in one of those full-body tenses: fist and jaw clenched, arms and legs straight and hard and then my neck stretched itself in some weird sideways motion and, when I heard the snap, I was fully awake. I iced it for a half hour without even getting out of bed and now I am using my TENS unit. I’m allergic to NSAIDS and I can’t have opiates, so it’s tylenol and ice for me. Nightmare. I even took an epsom salt bath last night and tried to follow all the sleep rules. It was another terrible night and, this morning, my eyes are extremely swollen. My husband even suggested I have had a reaction to turmeric.

Who knows. I’m so over this. If I had a job, it would be difficult to show up this morning. I can’t turn my neck, I look like I’m having some puffy allergic reaction and I’m so tired, my eyesight is blurry. Really blurry. I have my first acupuncture treatment today. I don’t know if that’s a good thing or a bad thing. I’ll let you know later on.

I’m grateful for mod-cons: bathtubs and kettles and hoovers, beds and electricity and running water… Especially the last one. I’m grateful for clean drinking water, flushing toilets, and hot showers.

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Diet Day 13… Healthy junk food shopping.

I still haven’t started the vitamin A. It took forever to find one to the specifications the doctor wanted and then I had to order it online, so really the supplement program hasn’t even started in earnest and I’ve already broken the bank. Today, at the medical center, the sleep study doctor said the same thing my Dad said, “Stop wasting money on all the supplements” and, damn, they ARE expensive. $160 I spent yesterday to replenish my stock. That can’t last too long with no income.

You know what else is expensive? Food that doesn’t have dairy or wheat or anything that tastes good in it. Another $160 (coincidentally) at the grocery store today. But I was actually kind of proud I made it to the store. I hate grocery shopping. It wipes me out and all the label-reading gets me frustrated and it is SO FREEZING ALWAYS. I must have been feeling particularly vulnerable and deprived because I bought 4 bars of chocolate (all 70% cocoa with no dairy) and 2 tubs of ice cream (dairy-free, sugar-free, gluten-free, fun-free), 2 bags of chips (taro and carrot/ sweet potato, the latter which I can pick around), and 2 bags of gluten-free oats (to make granola and breakfast oat bars). I also bought some frozen fruit for smoothies and some guacamole and ….turkey bacon! I’ve never tried turkey bacon, but anything resembling bacon — even without the eggs and toast — will make me happy. It occurred to me that, since I can have oats, maybe I can have black pudding!! Oh, that would make me so happy (I don’t think most Americans understand this)… But it probably has way too much fat to justify it as a “lean meat”, eh?

It just occurred to me that I pretty much missed the vegetable aisle. Oh well. I’m pretty sick of salads. I’ve fallen into a routine of a smoothie and a bit of granola for breakfast, something salady for lunch and dinner has been fish with veg or chicken broth with veg for a homemade “soup”. My Dad made us bouillabaisse while he was here — from scratch with fresh seafood. It was fantastic! The next night we grilled a whole salmon. But, honestly, I think I’d give a limb — or at least a toe — for a baguette smothered in Brie with a burger dripping fat on the side and some popcorn for dessert.

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LDN Day 19… My visit to the sleep specialists.

Today I had the 4th (allopathic) doctor in a month bemusedly tell me there is no point in taking naltrexone. She shook her head and, with a quizzical look, said, “We don’t prescribe it – no doctor I know prescribes it. It was used in the past to help drug attacks, but I don’t understand what naturopaths are doing with it now. If you’re worried about taking drugs, melatonin is far, far safer than naltrexone.” Of course I know this. I know it’s not FDA approved, I know most doctors don’t prescribe it, I know it is a long- shot, but there are so many amazing stories out there, I felt like I had nothing to lose. Although, it’s true that I really have nothing to report except losing sleep, gaining weight and being constipated. The dizziness, sadness, fatigue, muscle pain, and all the rest of it seems to be the same.

Today was my sleep study consultation at the medical center. Luckily, these people actually seemed to be experts — it was a much better experience than the chronic fatigue circus. Although, it was still like pulling teeth to get information. The woman in the front office made a good point when I bitched to her about how doctors treat patients like they have an IQ of 50. She said that they have so many patients from different cultural backgrounds or with limited English or with limited education that doctors usually do dumb everything down. It was a good point. It’d be nice if they could really quickly read their client and adapt their communication and level of engagement, but I guess they leave that to the savvy bartenders and servers out there (do NOT underestimate what sort of skill is needed to be in the service industry — not only because of the patience, stamina, intelligence, and highly sophisticated organisational skills needed, but mostly because of the fine-tuned social tact and interpersonal communication skills that are necessary. In short, you have to be charming, perceptive, intuitive, smooth, have street smarts and be able to adapt to any situation, as well as all the physical and mathematical stuff. When a nuclear bomb decimates humanity, it’ll be the intelligent restaurant workers that are walking down The Road).

Anyway, today I had my sleep study consultation (by the way, it took me two full hours to fill out the paperwork for the appointment. Managing a health problem is a full-time job. Maybe I should make that my next career: managing the appointments, pills, paperwork, test results, Rx refills etc. for people. Problem is, no one with medical problems and medical bills can afford help…). They want me to definitely do the overnight sleep study because my insomnia is “quite complicated”. I don’t fit into the typical profile for someone that has sleep problems (don’t drink, smoke or do drugs, not overweight, not very old, don’t have any of the typical health problems, don’t have kids, don’t watch tv in the bedroom, don’t even have a job anymore). They gave me advice on how to change my lifestyle:

Don’t exercise or eat within three hours of sleep.
No tv or computer in the bedroom.
If you can’t sleep, get up — whether that’s at night or in the morning.
Don’t nap during the day.
No caffeine or alcohol in the evening.
Don’t read your book in bed.

Most of this is obvious and I already know. But, my problem is, if I go to bed only when I am so exhausted I feel like I must sleep, then I will either be in bed all day/night or I’ll never be in bed. I always feel like I could fall asleep and I always do, but then wake up half an hour later… I can do this cycle for 12 hours. They said the sleep study would measure how often I am in deep sleep, REM etc. and I said, wait, I have a Zeo that tells me that info. Is this as sophisticated as it gets? Thankfully, they said the sleep study would also measure my heart, oxygen levels, whether I have sleep apnea, whether I snore, how much I thrash about and the brain monitoring shows much more than the Zeo. They said, even though it may feel like I wake up 16 times a night, my brain might actually be so active that it is more like hundreds of times a night in terms of sleep quality. Also, if I happen to sleep like a baby when I am in the hospital, it might just be a vicious cycle of my worry about not being able to sleep causing me to not sleep. In which case, they recommend drugs. They couldn’t believe I hadn’t caved and tried sleeping pills during the last 30 years of bad sleep and, especially, the last year of nonexistent sleep.

For the last 6 nights, I have only had 6 hours sleep each night, but it honestly feels like 2. I am so tired! But I am still taking the LDN and sticking with the diet and the supplements. Tonight, I might start taking melatonin again and up the dose to 1mg. The doctor today laughed at me when I said I had been taking 0.5mg. She said, “Do you mean 5mg?” They never start anyone lower than 3mg.

The pulled muscle in my back feels better, so, my goal today is get to the dog park and finish the laundry. And meditate without falling asleep per the doc’s instructions.

Finally, I am grateful for my husband. It’s almost futile to write about it because there are no words to express the depth of my gratitude. I found the kindest, most generous, most patient, most selfless man in the world (or, at least, in MY world ;)). He has literally saved my life more times than I can count and he takes care of me in sickness and in health.