Tag Archives: muscles

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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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LDN Day 24… 9/11

Today was a good and bad day. Bad in that I feel like I am premenstrual even though I don’t get periods. I’ve been very emotional, everything is making me cry and I want to eat nothing but sugar. On the good side, I had lunch with friends, which was sorely needed — I was starting to feel like I was useless in this world. What’s my special purpose?!

I also went for a half hour walk in the cemetery with my first-born son (dog) and it was so peaceful and also sorely needed — every time I cry, even if it’s just a sniffle, he has to wrap his 110lb body around me and nose my face to try to protect me and cheer me up. He needed some calm Momma time.

Then I did three mini-meditations: one while I was using my physical therapy neck-stretcher thing, a traditional sitting meditation, and standing breathwork with stretches. Any stretching that doesn’t pull a muscle is an accomplishment.

The best part is that, after a long talkative lunch and a walk, I feel okay. I only got 6.5 fretful hours sleep last night and I haven’t had a nap today, so I am ecstatic that I’m not completely slurry and jellied on the couch or feeling fluish in bed. Hallelujah. I did just take a tylenol, so that could be helping. Maybe my muscles won’t be diseased tomorrow… Maybe I’ll be mobile and not in too much pain… Maybe.

I am going to take a melatonin tonight (which I didn’t last night). My doctor even confirmed via email that there was no problem taking both LDN and melatonin before bed.

Finally, I’m grateful for the good healthcare workers and emergency responders. Thank you to the dedicated, caring, patient, thorough, communicative, available, informed, and informative NDs, MDs, RNs, DDSs, PAs, PTs, MTs, LMFTs, RDs, and acupuncturists (whatever letters they have after their names!). Thank you to the EMTs and firefighters that have saved my life on the multiple occasions when we have dialed 911 or 999… And those, along with the police and average citizens, that saved–or tried to save–all the injured and dying people on this day 11 years ago.

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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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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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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.