Monthly Archives: January 2013

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Warning: I’m Talking About Poop

I’m not going to lie, I’m scared. Again. Still. I don’t know my body anymore and I don’t know what’s around any corner. The thing I try not to talk about is: every single time I have collapsed on the first day of my period, it was triggered by a morning bowel movement. Also, I have come close to passing out and had the paramedics called twice from bowel pressure/ cramping without having my period. See why I don’t like writing about this and now you don’t like reading about it?

So, for months I have had these little bouts of tight chest and heart palpitations. They come on very quickly, very strongly ~ making me gasp for breath ~ and then leave just as quickly. I finally figured out they were triggered somehow by my bowels. Within minutes after a breathing/heart episode, I will have “movement” of some sort down below ~ maybe even just a gurgle ~ that wasn’t even perceptible when my lungs tightened and my heart pitter-patted. I assumed it was some sort of vasovagal reaction and have been ignoring it.

Well, this past week, I have had an uptick in IBS issues. I don’t know why; I’ve changed nothing with my diet or supplements. With the increased gut distress, has come much more prolonged chest symptoms. This morning, I spent hours with my heart skipping and racing and, once again, such a tight chest that I was spooked. I ate salt, drank water, lay on the ground with my feet up, did breathing exercises, canceled my sleep doctor appointment and kept the phone close. I knew my chest would release once my bowel calmed down, but it didn’t help my fear of the future. IBS is not one of the related ME/CFS conditions that I worry about. I worry about the fibromyalgia and chemical sensitivity (especially since the codeine reaction). But, if things don’t calm down, it’ll now be my prime focus. I don’t want to be on beta blockers or any other drugs to “manage” arrhythmias or blood pressure drops.

Lastly, for a week or two, I’ve been dizzy. This is a new symptom, too. The rooms spins when I move my head and when I just move my eyes all the way to the right or left. Again, if it gets any worse, it will be the number one most debilitating symptom. All of these (drug reactions, food reactions, IBS, dizziness) could make life much more difficult than it already is. I feel like I’m standing on a precipice on one foot… with my arms tied behind my back… in gale-force winds… eyes blindfolded, so I can’t see what new evil is coming at me or from where…

Not sure what I’m grateful for today. When I find it, I’ll let you know.

February 1st Addendum:

I think things are better today. I ate like a baby yesterday (apple sauce, cooked carrots, squash etc.), avoided supplements and I hope things will resolve themselves. Maybe it was just magnesium. I’ve been taking 500mg of mag oxide wondering why it wasn’t giving me any gastrointestinal issues… Maybe it just caught up with me after a few months. My doctor’s only two suggestions were anti-spasmodics for the bowel (uh, no) and a tilt-table test to address POTS. Let me repeat: I will do EVERYTHING POSSIBLE to avoid taking a test that induces scary symptoms that I try to avoid every day of my life just so a doctor can confirm that I get dizzy and sometimes my blood pressure and pulse bottom out. I already know that; I don’t need a test. Unless I have to do it for disability. But I haven’t got the nerve/energy up to tackle that yet.

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Codeine Allergy?

I am going to tell the story of what happened to me yesterday so that maybe someone out there won’t feel like they are alone or crazy or dying. I searched the internet on my phone for hours and couldn’t find anything similar to my experience. Doctors don’t believe this sort of sensitivity exists ~ even my doctor who knows me well has looked at me incredulously when I describe how a painkiller affects me. But I would have NEVER guessed that my body has become as sensitive as it has. I knew I could feel the effects of very low doses of drugs, but this takes it to a new scary level.

A few days ago, my headache came back and I took 500mg of acetaminophen. It didn’t really touch it. Yesterday, my headache was bad, but also my neck was in pain. It wasn’t terrible ~ I could have powered through it by just going to bed early ~ but I thought, I haven’t taken painkillers in ages ~ since Christmas, really ~ so a Solpadeine will be quite effective and probably won’t give me a bounceback headache. Solpadeine is 500mg acetaminophen and 8mg codeine. They are like Tylenol 3s, except Tylenol 3s have 30mg of codeine. They are over the counter in Ireland and I’ve taken them on and off my whole life. The dosage on the box is two tabs dissolved in water. I took one. A little while later, I was hit by a freight train. I am not exaggerating. I’ve never taken oxycodone, but it felt like I imagine that must feel. I was high, which was odd because it has never happened with Solpadeine before, but that’s fine. The bad part was my lungs immediately closed up. I was fine one second and I was having a VERY hard time breathing the next. It’s not like you are out of breath or in pain or wheezy or anything, you simply have to work very hard at inflating your lungs and it is terrifying ~ I’m surprised I didn’t go to the ER, but the ER can do two things: give you different drugs to counteract / help the reaction and give you oxygen. I wasn’t going to take any other drug. This happened from ONE SINGLE OTC SOLPADEINE! So, who knows what else my body will react to. I wouldn’t have minded the oxygen, but not enough to spend that kind of money while sitting in a building of flu. I knew, if it got worse, I’d have to go no matter what, but I decided to monitor it.

During my research, I discovered a few things: for pain, people are regularly prescribed up to 120mg codeine. Addicts that use codeine can take three times that amount. I realise I am a small person with a sensitive system and I’m not an addict, but 8mg? Really? If I’d had ANY idea this reaction was possible, I would have dealt with the pain. This wasn’t a little respiratory depression, this was serious. I also learned that the vast majority of patient-described “allergies” to opioids are reactions to the histamine released by the drug and not an actual life-threatening allergy. Why didn’t I know that codeine releases more histamine than other opioids? I don’t know. I should have. It probably would have stopped me from ever taking it again since I try to avoid histamine release in my body if at all possible.

The scary part in the literature is that they describe the non-allergic histamine-produced reaction as itching, flushing, hives etc. and they describe the true-allergy IgE-mediated reaction as “bronchospasm or respiratory distress, laryngeal edema, hypotension, and even acute vascular collapse.” ~ which can be life-threatening. So, that made me nervous since I was only experiencing respiratory distress (a more serious side effect) and a stuffy nose. But, honestly, I could see the ER doctors’ faces when I say, “I can’t breathe from 8mg of codeine and I’m afraid of dying.” Well, you can’t say the latter because you sound like a melodramatic, histrionic lady (who also happens to have that crazy made-up illness Chronic Fatigue Syndrome), but you can’t even tell them you are reacting to such a low dose of something because they’ll scoff and think you’re exaggerating.

So, I stayed put. I didn’t take an antihistamine because I didn’t want to depress my CNS any more and I didn’t take my inhaler because I have no idea if it would help and I didn’t want to get all shaky from the albuterol. I didn’t even take my supplements. I just drank water and waited. About 5 or 6 hours later, it started to ease up and, once my lungs opened again, it underscored just how tight they had been. It was like someone took the pillow off my face and loosened the very tight straps around my rib cage.

Now I wonder: was it a true allergy or a histamine reaction? It matters for the future. It matters if I’m ever in the hospital in dire need of painkillers. No NSAIDS and no morphine derivatives. And please no histamine-releasing anesthesia. What a nightmare.

To top it off, I had drenching, awful night sweats in my sleep afterwards. It was the first time since December 10th, which had been the first time in months before that. This morning, my chest is still tight ~ not quite back to normal yet. My eyes and fingers are swollen. I’m shaking like a leaf. It’s not normal and it’s so frustrating. It makes me nervous to try any drug ever again. Can’t take anything, can’t eat anything, can’t be in the sun, can’t be in the cold, can’t be around smoke, can’t be around noise… What’s next? Get rid of dogs, smells, colours, electricity? This is no way to live. Give me the puking reactions or the drowsiness or the rash or anything besides not being able to breathe. It’s the scariest feeling in the world and to all of you out there suffering lung disorders of one kind or another, I send my sympathy and compassion your way. Remember: As long as you are breathing, there is more right with you than wrong with you.

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Update

My friend asked why she hadn’t heard from Elizabeth in a while, so I thought I’d give a quick update. The good news is, my sleep continues to improve. It is a goddamn miracle. I cannot tell you how poor my sleep has been my whole life and this last year was like someone was intentionally torturing me. I was in bed more than ever, but sleeping less than ever. Unfortunately, I was awake in bed alone, for those of you that might think “in bed but not sleeping” is some euphemism for sex. As you may remember, I have posted sleep graphs from my Zeo that show nights with either huge chucks of “awake” through the night or I wake up over and over again, interrupting the regular, beautiful sleep cycle. The sleep study said my brain woke up 49 times an hour. Maybe, if I got hooked up to all those sensors again, I would still have waking brain activity of which I’m not aware, but I doubt it would be bad. For weeks after my last post about sleep, I was getting about 7 1/2 to 7 3/4 hours a night. The last 5 nights I have slept between 8 and 9 hours each night. But the best part is, the last few nights I have only woken up a few times ~ 2 or 3. My god, that’s bliss. Imagine turning off the light and, 9 1/2 hours later, you’ve had 9 hours sleep. WhawhAAT? This was last night:

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I still don’t know what changed besides drinking tart cherry juice, so, although it has a high sugar content, I will continue to drink it each night with dinner. My real theory, though, is that my sleep is a product of the same thing that has caused me not to write a blog in a while: a quieter mind. When my brain won’t turn off, I want to write everything I think and I never feel peaceful enough to drift into slumber. So, maybe it’s my daily meditation or maybe I’m just tired of the fight, but this is life now and I think I’ve found a tiny bit of quiet. No doctor is going to make a miraculous discovery and this will not be a quick process. I have to rest. Full stop.

Unfortunately, the sleep has not helped my waking symptoms. I’ve actually been feeling worse this past week than I have since December 26th. My pain, achiness and stiffness has increased and my energy has declined. After having virtually no headache for about a week, it came back a few days ago. Wow, does that make a difference in my mood. I can still feel pretty upbeat and functional with all the other symptoms, but the headache decimates me, renders me silent and grimacing. “Decimate” technically means only destroying a tenth of something, right? What would be, say, half of something? Headaches quintimate me? Or septimate me? Would that be destroying 70% of me? Much better.

My Mom told me something that has kept me going lately. In one of the hundreds of articles I sent her, she read that if you are without pain for even one day, there is hope that you can be permanently pain-free. I do not hold out hope for pain-free, but that little gem of information has made me think that there could come a time when there are more pain-free days than crippled-and-crying days.

I’ll leave you all with good news. My period came and went and I didn’t have to take a single painkiller. It wasn’t painless by any means, but it was tolerable. I don’t know why. Maybe it’s the new diet, maybe it’s all the supplements. Also, I am seeing a new doctor this week. The universe sort of conspired to introduce me to him, so I’m heeding the hint and trying one. more. specialist. I’ll let you know how it goes.

Gratitude: For painless days that allow me to laugh and for good nights’ sleep.

irish proverb

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Gone Viral

I’m sneezing, I’m short of breath, my nose won’t stop running, my throat is sore, my muscles ache, I’m exhausted, I have a headache, my temperature is 99.7 degrees, my face is flushed but my feet are numb, I’m pasty, and my husband says I’m “more purpley-eyed” than usual. But I don’t think I have come down with a cold, flu or new virus. Such is the life of someone with ME/CFS. That doesn’t mean I’m not scared of catching something. I don’t have an attitude of “Why would it matter if I caught a cold? I’d just feel the same.” Instead, I’m terrified all day every day of coming down with anything that could pile hellish symptoms on top of hellish symptoms. I’m terrified of how it will feel and what complications I might have (asthma, bronchitis, pneumonia) and whether it will set me way, way back in my recovery. The current media hype doesn’t help. It’s all the news is talking about! Worst flu season in decades. It’s now at epidemic levels. Virulent strains that make you sicker and last longer than the usual flu.

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I think, there’s a flu epidemic every year, relax. But it actually seems true that this season is worst than most. If you read the comments after the NY Times articles, there do seem to be many healthcare workers saying things like, “I’ve been an ER nurse for 27 years and have never seen so many patients so sick with the flu.” There is a silver lining to my current situation: I don’t have to be out in the infectious world. Of course, that doesn’t stop me from worrying. This is the first year I haven’t had a flu shot and this is the first year I have known that recovery doesn’t always happen. I have my own personal form of PTSD. I’ve alluded to it, but it’s not something I’ve wanted to get into in depth in this blog because I guess there is some level of shame attached… I don’t want judgement. I don’t want eye rolling. I don’t want anyone to say relax or don’t worry or it’ll be okay. I don’t want anyone to try to give me advice on how not to have these thoughts. I don’t want anyone to insinuate I have to get over it/ get medicated/ get help. Most of all, I don’t want anyone to think I’m a hypochondriac. Because I’m not at all. Hypochondria is very different from fear of getting sicker. If anything, I have a tendency to ignore symptoms for too long ~ from insomnia to thyroid problems to my neck injury to the more serious stuff. Now I know: recovery doesn’t always happen.

Before New Year’s Day 2012, I never really gave viruses and infectious diseases a second thought. They never concerned me. I felt pretty indestructible, impenetrable, durable… I was able to overcome anything. When my husband was horribly sick with chicken pox, it never occurred to me not to tend to him, not to touch him, not to go to the doctor with him (quick aside: my husband is 12 years older than I and looked particularly haggard after suffering for days with the pox. I was wearing yoga pants, a hoodie and a baseball cap. The doctor turned to me and said, “Would you like to stay in the room with your father?” I looked at my husband. “Is it okay if I stay, Daddy?” I found this hilarious for ages until ME aged me considerably in the past year. Comeuppance).

One of the sickest people I’ve ever encountered was sitting beside me on a plane. I thought he might die from whatever horrible illness had him coughing, spluttering and moaning ~ but it never occurred to me to change seats or even point out to a flight attendant that perhaps he was too sick to fly.

I worked in restaurants my whole life. In the restaurant biz, you only take a sick day if you can get your shift covered. And that’s a difficult thing to do. So, there are always sick employees, there are obviously going to be sick customers, I am handling a lot of cash, I might lick my finger as I count out your change. I am handling your glasses, plates and cutlery and I don’t get a chance to wash my hands as often as I should. We are all stuck indoors together and, for most of my restaurant years, the rooms were filled with cigarette smoke. It never occurred to me to be worried about catching something. If I got a cold, I worked through it. I got bronchitis regularly and would work through it. I was once in the toilet at work sniffing, snuffling, trying to deal with a nasal mucus crisis and one of my coworkers thought I was snorting cocaine. Yeah, right! Nope, just trying to avoid snot falling on my customers while I take their orders.

In college, I remember going to the campus clinic because my chest infection wasn’t going away. The lowest number on the lung capacity chart was for a 4’6″ tall 80-year old woman. My lung capacity was below that. Off the chart in a bad way. I’ll never forget the doctor looking askance and saying emphatically, “You walked across campus just now? You have asthma. You have to take it seriously.” I still don’t believe I have asthma.

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So, I’ve had a lot of colds in my life and had hospital stays for weird things like suspected meningitis, lumber puncture headache and anaphylactic shock, but they never created any sort of ongoing anxiety or trepidation. Even after three or four trips to the ER for vasovagal syncope on the first day of my period, I still didn’t really worry about it. It wasn’t until one episode when my blood pressure and pulse fell very low and stayed very low that I started to get a sense of foreboding when my period was due. I would tell one of my friends at work what to do if I collapsed. If it were the weekend, I would be sure to shower “in case I have to go to the hospital” and I started to be cognizant of what outfit I was wearing for Aunt Flo’s impending visit (ever since the EMTs had to help me on the bathroom floor while I was wearing red underwear with hearts and a 15-year old threadbare tshirt that was literally hanging off the neck band in tatters. It was incredibly comfortable to sleep in, but I’m sure, as they entered the bathroom, they were wondering whether I was on the floor from a physical assault… or perhaps a tiger attack).

I started to get more cautious in 2011. I hadn’t come down with ME/CFS yet, but something was going on. I was having dizzy spells, but I chalked it up to low blood pressure. I was having bad neck problems that were giving me a hard(er) time sleeping. I had a collapsy episode in Ireland that had nothing to do with my period. My tongue swelled up for days, which hadn’t happened in a decade and was not alleviated by antihistamines. I had bronchitis and then a bad diarrheal sickness. I was under constant stress at work and it was taking a heavy toll. I became aware of sick people around me, not wanting to sit beside someone who was coughing, knowing ~ almost subconsciously ~ that my immune system wasn’t quite up for it. But I continued to push myself. Then I got the flu shot and the rest is history.

Which brings me to the point of this post. In those first few weeks of 2012, I developed what I affectionately call my Brain Virus because it happened so quickly and consumed my thoughts so thoroughly (let’s hope I don’t actually ever get a brain virus like the one I saw on Monsters Inside Me last night). I’d been diagnosed with malaria and told that I needed long-term drugs that could be dangerous to a sensitive system… but then they left me in limbo for two weeks while waiting for a second confirmatory blood test to come back. I was so sick and so spooked by my symptoms. I spent those two weeks in abject fear, ruminating about the anti-malarial drugs and thinking, What if it’s NOT malaria? What the hell is wrong with me? During those few weeks, the Brain Virus ran rampant and suddenly I was scared of anything that might make me feel worse. Flu, colds, food poisoning, MRSA, flesh-eating bacteria etc. I didn’t become a germaphobe ~ I didn’t start cleaning obsessively or stop rolling around on the floor with my dogs or anything. In fact, I stopped using antibacterial soaps to try to make my immune system more robust. But my brain was talking a foreign language, sounding warning bells. Mr. Fear was on high alert ~ he was going to protect me, come hell or high water. I imagined him sitting on top of my head with an arsenal of weapons, peering frantically through night-vision glasses and binoculars, whispering warnings in my ear: Watch that cut on your finger that isn’t healing! Wash the outside of that avocado in case the knife carries the E. coli into the center! Hubby is sneezing, don’t kiss him goodnight! Having never thought twice about being in enclosed spaces with people, I started to sit in the far corners during management meetings at work. I watched a mother teach her son how to push the hospital elevator button with his elbow and I thought, why didn’t that ever occur to me?  And then quickly on the heels of that I thought, Jesus, hospitals are where sick people are! I know: duh. But I’d always thought of hospitals as places to make me better, not get me sick. So, I started wearing masks.

It’s not that bad anymore. Mainly because I have done a lot of meditation and worked hard on stopping the circular thoughts. Mr. Fear is an educated and protective friend when he’s not panicked, so I tell him: I hear you, dude, but I’m okay. There is no point in being worried until it actually happens. And even then, worrying won’t help heal me. It’s been almost one and a half years since I was sick with something besides ME/CFS. Maybe it’s because I haven’t been working and haven’t been out much. Or maybe it’s because my immune system is activated and attacking everything that comes near me ~ including me.

Another silver lining in this situation: It has quashed my old fears. My fear of flying has vanished. I am now afraid of breathing the air in a plane, but I’m not afraid of a plane crash at all. I’d welcome the chance to get on a plane. And I’d sleep in a tank of spiders for a month if I could feel unbreakable again.

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