Tag Archives: symptoms

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Message to the doubters (warning: strong language).

I’m happy to be alive today. I’m happy to not be in a hospital today. I’m happy to have the will to pull myself upright after about 24 hours of being horizontal and get this off my chest.

To anyone who thinks myalgic encephalomyelitis doesn’t exist because the TESTS don’t show anything wrong or some asshole somewhere couldn’t figure out what to call the thing that was happening to histrionic overworked ladies who couldn’t handle the pressures of modern society and decided it should be coined chronic fatigue syndrome, which would for evermore stigmatize the patients…. Fuck you.

Until you have what I have and until you go through what I go through, how dare you pass judgement or think you know better. What I have is killing me. It is ruining all quality of life and taking my family down with it. I’m not tired, I’m not in pain, I’m not depressed… I don’t have the words to describe this disease. I can say, with no emotion and complete clarity of mind, that I don’t want to live like this. That I’d rather die. Does that mean that I’m clinically depressed and suicidal? I don’t think so. It simply means that there might come a time in the future when I have to decide that I am either okay living this new way ~ very little moving, very few activities, very little interaction with people, probably not leaving my house much, probably never having a job that isn’t from home with flexible hours ~ and be happy with it, or decide that I can’t do it.

I was once very full of life. I was once energetic to the point of being annoying. I made my living in a very physical career with a dizzying amount of multitasking, responsibility, and challenge. So, how do I accept my new role? I don’t want to accept it if it means constant pain and management of symptoms. That’s not what I’m here for. I don’t know how to get there.

I have 100 symptoms, you’d laugh if I listed them, but, out of all of them, there is one problem that is very distinct, completely life-altering, and only seems to be talked about in the context of myalgic encephalomyelitis. If I have a “good” day and forget that I am sick and must strictly manage my energy and activity levels, I pay for it the next day with what feels like death. This is so real, so dire, so misunderstood.

Yesterday, as the day progressed, I became more and more incapacitated, immobile, had crushing pain and felt completely unstable. I am not exaggerating when I say my body felt like I had been in a terrible car crash. I was in pain from head to toe. Muscles I didn’t know existed were in pain. Internal muscles were in pain. My diaphragm was in pain, making my breathing heavy. I could barely turn my neck. This isn’t normal pain, though. This is inflamed, swollen, tender, red, throbbing pain. As if every muscle is infected. You touch me and I wince; I move and I groan. There were silent tears running down my face all day. My headache couldn’t be touched by over-the-counter pain meds, I continuously felt dizzy and feverish and faint. I checked my blood sugar and my blood pressure. I told my husband, I don’t know what’s going on, but we may have to go to a hospital this time. I hate hospitals, so that’s saying a lot. Every time I stood up, my heart raced. That’s a scary feeling so I google “tachycardia upon standing” and it comes up with “Postural Orthostatic Tachycardia Syndrome” (POTS) and, lo and behold, it is related to and often found in conjunction with chronic fatigue syndrome.

So the pain is fibromyalgia and the dizzines is low blood pressure and hypovolemia and the fainting is vasovagal syncope and the racing heart is POTS… I have reactive hypoglycemia, low blood pressure, autoimmune angioedema, anaphylaxis that nobody could ever find the cause of, asthma, constant sore throat, temperature problems (understatement of the century), no steel-trap brain anymore, IBS issues, hellish sleep problems and sweats….. AND NOBODY CAN GIVE ME A FUCKING DIAGNOSIS? Just based on the blood pressure/volume drops and the syncope that has landed me in the ER, somebody should be looking at an autonomic nervous system problem. Right?? Who does that? Cardiologist? Neurologist? I don’t even know.

But, you know what they’ll tell me? Eat salt, drink water, stand up slowly. I know because I can’t find a single doctor that wants to get to the root cause. And, honestly, I’m way more concerned that my body won’t allow me to go to the doctor and the dog park or else I’ll spend at least a day or two in crushing, indescribable, terrifying, paralysing pain.

Gratitude? I’m grateful that I’m alive and angry right now. The alternatives are no fun.

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Remember to notice the good times.

I would like to mention some good times so nobody thinks the sadness sticks around all the time. Today, I managed to briefly meet friends and go to a very long doctor appointment and still had energy for the dog park. It was sunny and warm and there weren’t very many people there. Once again, I found myself smiling while walking –maybe even strutting— and listening to my music. There’s something liberating about walking in a tank top with the sun shining, a breeze blowing and not being at all cold. At least it’s liberating for someone who spends their life in close contact with either a hot water bottle, hot tub, electric blanket or electric vest (which is made for motorcycle riders, but is wondrous for freezing freaks like I). Speaking of, there was this one day years ago when my husband and I were riding our motorbikes on a hot day through the mountains. I took off my leather jacket and, for the first and only time in my life, I dared to drive fast on the country highway wearing only a tank top (and leather pants and a helmet, duh), with the wind racing over me and the sun beating down on me… My god, I will never forget that feeling. Oddly, today, smiling and strutting slowly in the park, it felt a little bit like that day on the motorbike: a lot slower and safer, but still the freedom, peace, and sun in a tank top.

I thought, “the sun feels like it is physically penetrating my neck and taking away the pain”, so I went with it: I imagined that it truly could. I concentrated on that warmth and willed it to fix me. I pretended it was a known procedure with proven results and I let the sun rays massage my muscle rotten spots (they feel like they must look like rotten spots on an apple) and decided that tomorrow I was going to start winning. I am exhausted, I have a crushing headache as per-usual, and I’m currently going through a fever phase, but, I swear, this illness won’t win. I won’t feel terrible tomorrow and it doesn’t get to make me depressed. I’ll be sad when I feel like crap, I’ll still undoubtedly have a roller coaster of emotions and my commitment will falter, but, I got this. The sun gave it to me.

I am grateful for the sun.
Little darling, it’s going to be a long cold lonely winter.

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LDN Day 26… Kind of want to quit.

I don’t know what to do. It’s almost been a month on low-dose naltrexone. I don’t feel good. I don’t even feel better. I think it might be making me depressed, but it’s hard to tell because just the sheer length of this illness with no answers is enough to make anyone depressed. I have a headache EVERY SINGLE DAY. I wince when the dogs bark, when there’s a loud tv show, when my husband is putting dishes away… everything hurts my head. But that isn’t really out of the norm ~ just more than usual. Is the LDN causing the sleep disorder, depression and headache? How do I know? I kind of want to quit taking the birth control pill (the idea fills me with terror) and the LDN. Then… what? Go down the benzodiazepine and opiate rabbit hole? That scares me more than anything.

I’ve had 6 crappy hours sleep each of the last 3 nights. My muscles hurt so badly. My temperature is a roller coaster ~ 97.2 to 99.7 degrees and back again within an hour. I think I’ll get my thyroid levels checked today just in case, although, they are always fine. I’m meeting my old bosses today and I have no idea what I’m going to say. I guess I just want to know if I’d ever be welcome back in a different position if I kicked this… What if I can never work again? My god, I can barely think about it. Maybe what I should be doing is planning a new career that allows me to work from home. I can work when I can work. Laura Hillenbrand did it. Maybe I should just start writing a book and hope it makes money. Ha.

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LDN Day 23… Do I keep going with the LDN?

Like I said, I debated for a while about whether I would be honest in this blog about just how bad it gets. I’m trying to chronicle the good times, the hopeful times, the funny times, as well as the bad times. And I’m still kind of holding back on the bad times because I’m towing the line between diary and public entertainment. I don’t want to depress or scare the readers that know me, but I also don’t want to misrepresent what this illness does to me.

Last night, I skipped all of the supplements after lunch. I skipped food, too. I just went to bed and felt crappy until about 11pm and then tried to sleep. I did take the LDN. I did some more research online and there are so many people saying, “Stick with it! The side effects go away, it gets better.”

My night was awful. I woke up with what I thought for a split second was paralysis in my left leg. Once I rolled over and the tingling started, I realised it was just total and complete bloodlessness. Then I woke up again with absolutely no blood in both my hands. It was the oddest feeling; I could not move the fingers at all. I sat up and shook them for minutes and went back to sleep. I woke up twice from the crippling headache that had struck around 6pm the previous night. I woke up at 1:30am shaking and trembling so much that I got up and checked my blood sugar (it was fine) and then decided to take 1mg of melatonin. This is a big deal for me. I have a fear of combining drugs ~ even “benign” ones like melatonin. I think I’ve only taken 1mg once in the past and it was split into two doses and I wasn’t taking LDN at the time. I like to be able to “monitor” what drugs do to me, so drugs taken at night are the worst. Well, the rest of the night was like something out of “Jacob’s Ladder”. I want to do the overnight sleep study just so someone can tell me what is going on with me in the night. Every time I woke, I was in a different place in the bed, using a different pillow, in a different position, head tweaked a different direction, jaw clamped down painfully. Every time I woke, I was either too cold or burning so hot that I would take my temperature, unable to believe I wasn’t dangerously feverish (never above 99.7 degrees). I had night sweats again. I had nightmarish, vivid dreams. In all of them I was sick and drugged. I kept going into lucid dreaming, where I consciously knew I was asleep and wanted to wake up, but couldn’t ~ I was too drugged, too sick. It doesn’t help that I’m reading those Girl With the Dragon Tattoo books, so all my dreaming imagery is pretty gruesome. I’ll probably have to put those books away for a while ~ until my subconscious isn’t such a lunatic. I have spent 4 months meditating and relaxing ~ my conscious self doesn’t feel that tortured ~ so is this the id rearing its ugly head at night? Freud, you there?

This morning, I’m okay. I feel like I’ve been put through the wars and I’m eating Tylenol for breakfast, but I’m okay. I only got about 4 or 5 hours sleep and tonight I think I might try the melatonin again. It’s either that or stop taking the low-dose naltrexone. Or start taking it during the day. I don’t really want to do the daytime LDN. I feel like, if I’m gonna do it, I should do it when I’m meant to do it for the best result. And, if I stop taking it… well, it’s like the one-armed bandits in Vegas: maybe this time will be the winner. Maybe this day will be the day the good kicks in.

I really will get to the laundry today.

Today’s Moment of Gratitude: NATURE: for the colours, smells, sizes, variations, animals, majesty, resilience, inspiration, and freedom… even gratitude for the bugs –the ones inside me. Little fuckers.

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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.