Tag Archives: sleep

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LDN Day 17… CFS / ME is still in charge.

Ugh. I have zero energy. Every night these last few days with my Dad visiting, I have turned into a brain-dead, drooling zombie around 8 or 9pm… To the point that I can’t carry on a conversation, I can’t focus. Brain fog is a perfect description. I take so much longer to form my thoughts that people try to finish my sentences for me. And I am too tired to try… My sister asks, “what’s the plan for tomorrow?” and I literally have difficulty understanding her question, let alone coming up with a plan. I hit a wall of fog.

My sleep streak ended. Either 6 or 7 hours the last four nights, which isn’t necessarily that bad except the nights are so difficult with pain, sweats, chills, cramps — and I WILL NOT GET BETTER without 8+ hours/ night. See the Zeo graph below — constantly awake. Between 10pm and 2am, I dipped into sleep six times for no longer than ten minutes each time.

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Yesterday, I was very dizzy in the morning. The night before, I had been a bit scared, thinking I really overdid it, regardless of my careful intentions. I was in bed, chilled to the bone, so so so cold. And felt like I had the flu, of course. The next morning, like I said, I was dizzy for hours, but felt better after a walk with my Dad.

Today, I am immobile. I pulled a muscle in my back yesterday picking up a pot of water (god forbid I try to clean the kitchen!) and that, coupled with the hangover from socialising, has left me practically bed-bound. I woke up with a wicked headache, extreme pain from the top of my left skull, down the left side of my neck, down the pulled muscle on the left side of my back and into my hip. My throat has been sore all day, eyes puffy, runny nose. Ugh. I feel awful. I visited calmly with my family for two days and I’m paying for it. Barely have the energy to type. Definitely don’t want to call anyone. It probably won’t be much better tomorrow. I need unlimited massages for free… I need unlimited funds for weekly massages. For all of you out there dealing with muscle hell, massage therapy is a godsend. It doesn’t make it worse — I know it feels like someone pressing on your back would make you shriek, but, the next day, things are so much better.

This is an evil disease with no answers, no experts, constant pain, limited mobility, constant searching, limited hope.

Almost forgot again: I am grateful for my dogs that always get a smile out of me and, no matter how bad my day is, they make it better.

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March, 2012: 4 months sick. An excerpt from my diary.

Muscles pumped full of lead. No, heavier: Plutonium. Filled with liquid hot metal until they might burst. Heavier than anyone can imagine, aching, about to strain, buckle, seize up with the slightest movement. Ready to sprain with the slightest stretch, no tone, no strength. Climbing stairs is climbing Mount Everest.

Slurred words, room spinning, head aching, chest tightening, heart leaping, entire body shaking, vibrating. Internal tremors making me feel unstable.

Chills. Bone-chills. Shivering, unable to talk, nose going to shrivel and fall off, can’t breathe, freezing feet going to shatter into pieces, ice water running up and down my spine, head fogged over with frost, scalp taut, ears infected with cold, ice water spine, ice water spine.

Then, fever heat. Body on fire. Feet going to explode from the pooled blood, eyes burning, brain swollen. Spine and neck blistered with white-hot embers, waiting for bed to burst into flames. And the sweats come. Sweat running down my chest, pooling in my belly button. Sweat behind my knees, my lower back, above my top lip, in rivulets down the sides of my nose, my hair and the base of my skull drenched.

And I’m shaking, reaching for water. I don’t want to die. My palms are sweating and my throat is sore and I’m so thirsty, but can barely drink. I have to go to the toilet, but don’t think I can make it. I have crawled to the bathroom with concrete blocks tied to my arms and legs, while someone is spinning the room around me and zapping me with electrical current and blowing a dense fog ~ more like a smoke ~ into my ears and up my nose and down my throat, so I can’t breathe and I can’t think. It feels like what I imagine encephalitis must feel like. Meningitis. Botulism. Typhoid. Consumption. It feels malarial, paralytic, neurotoxic.

I just keep thinking, I don’t want to die.

Two hours ago, I was chatting on the phone to my mother. I was throwing a ball for my dogs. Without warning, I have to go to bed. It’s like a huge finger is pressing down on me and all I can do is go to the ground. If I try to get up, the whole hand holds me down. Huge hands holding me down so that every movement takes more energy and effort than it ever should or ever has before.

I watch someone run up stairs on tv and my eyes tear up with desire and jealousy. All I want is to be able to stand for a while, laugh without noticing because it’s not a rare occurrence, talk with friends without my throat turning into sandpaper and my back seizing up and having to go straight to bed from the exertion. All I want is to sleep. Sleep deeply. Without nightmares. And sit without pain, walk without breathlessness, feel light again, like those hands aren’t holding me down, like I could skip or twirl. All I want is strength, stamina, health. To live life without the fear of repercussions.

To live life. To not die.

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LDN Day 13… Sleep & Sun might cure everything.

Maybe the low-dose naltrexone has helped a little… I’m still very hesitant to say that with certainty because I don’t feel much different except my nights are better and that helps everything. The good news is, I slept over 8 hours last night with no night sweats. I have never, ever had such a string of good nights. Please, universe, help me to keep this going. The only downside is my thrashing about and crazy dreams and the number of times I wake up. I feel very achy this morning, very tired, headachy and swollen. I want to feel refreshed. Does that actually happen? Do people really wake up feeling refreshed? Who?? I want to know what their job is, what their home life is like, how rich they are, how many kids they have,  how old they are… I just don’t believe it. But, if I keep up my routine, maybe one day I can let you all know that it is possible to get out of bed not in pain, not stiff, not dizzy and swollen and achy. Maybe one day I will write that book. For now, my rules are: read a book before bed ~ not an ipad, make the room very, very dark, make sure the room isn’t too cold, kick the husband out if he snores, wash the sheets weekly, and don’t do anything that might disrupt anything in the night. Everything that can cause night sweats and loss of sleep, will. That’s why I’ve been taking Miralax in the morning when I’m sure most people take it at night (by the way, it hasn’t worked yet). The less my body is doing at night, the better I sleep and the less likely I’ll have the sickly sweats. That goes for my brain, my stomach, my bowels ~ everything needs calm and quiet.

When my drenching night sweats started out of the blue last November, the first thing the doctors told me was to stop all medication. I thought it was interesting and maybe this will help someone out there. I stopped taking hydrocodone/acetaminophen for my neck, I stopped taking liquid calcium/magnesium at night, I stopped the birth control pill for almost two months, I even stopped eating gluten. Now, none of these things worked for me, but it might work for someone else. My endocrinologist said, it doesn’t matter how long you have been taking a medication, it can turn on your body at any time and it should be the first thing you eliminate if you have an odd new symptom.

I didn’t do much yesterday. I made it to the dog park and tried to make myself walk faster than usual, so that could be why I’m feeling more achy today. I think it’s time to try some light muscle exercises. I’m scared of the repercussions, but I can’t go on atrophying this way. I’m thinking, some soup-can-arm-curls are in order. If I can’t eat my pea soup/ veg soup/ cream of anything soup, I might as well use them as weights.

We’ll see. My Dad comes for a visit this weekend and I may just decide to leave well enough alone today. Don’t rock the boat. Save your energy, don’t try anything new. I do have to wash the dogs today and I have a lunch date with a friend and, if I have the energy, I’d love to get to the dog park, too. So… we’ll see.

I meant to start signing off with something I’m grateful for ~ my version of a gratitude journal, to keep things in perspective. Today, I am grateful for sun. Every day that there is sun, I feel better. I’m very scared of the impending winter. But, my therapist says I must stop the future thinking, so, for now, thank you, Sun!

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LDN Day 12… Let’s talk about drugs, baby.

Last night I spent 10 hours in bed and got 7 1/2 hours of sleep. Not bad. My Zeo says I woke up 8 times in the night, which I hardly noticed – it was so much better than my usual 15 or 16 times. This is the longest stretch of over-7-hours-of-sleep-nights I’ve had in as long as I can remember. Ever? And I feel stronger. Is it the low-dose naltrexone? I am still skeptical. I started keeping my thyroid medication next to my bed, so when I wake at 6 or 7 or 8am, I take it and then tell myself I can go back to sleep for an hour. It has really helped. I have to take my thyroid hormones on an empty stomach and wait an hour before eating or taking other supplements, so it has always been the thing that gets me out of bed (when I’m not working).

Yesterday, was uneventful symptom-wise, which is wonderful. I did a bunch of housework and then relaxed. I was tired, but not exhausted. I had muscle aches, but nothing severe. My main concerns were: the painful tingling in my left thumb, my itchy, clogged ears, my neck pain, my mood, and my body’s complete lack of effective thermoregulation. That is nothing, believe me. There have been so many months when I would say, my main concern is not dying, so this is great. And I don’t want to jinx it by getting too excited. I still have ridiculous constipation and the breakout on my chest, but I’m sure these are transient problems that will go away once my body gets used to the diet change and pills.

Speaking of pills, I may as well give you the run-down on the prescription medications I have on top of the supplements. Bear in mind, most people with CFS / ME — or any of the other afflictions that cause muscle pain/ cramping, IBS issues, sleep issues, mood disorders etc. — are on many, many more drugs than I am. I have been told by multiple doctors to try steroids, anti-anxiety meds, anti-depressants, stronger pain killers, sleeping pills, muscle relaxers, anti-spasmodics, anti-convulsants… It goes on and on. I keep refusing. Not only do I have a sensitive system that seems to react to everything on the planet, I also have an addictive personality that cowers at the thought of any sort of withdrawal symptoms.

I take T3 and T4 for my thyroid, which doesn’t function anymore after I had radiation treatment to kill two toxic multinodular goiters a few years ago. I have an albuterol inhaler. I use prescription antihistamine eye drops and nasal spray every day because the optometrist said allergies were causing my gritty eyes and the ENT doc said allergies are causing my bothersome ears. I never had either of these symptoms before this year and I don’t really know if the Rxs are helping, but I keep using them. I have a prescription for an epipen (I’ve been in the emergency room five times for idiopathic anaphylaxis). I take a birth control pill continuously for my severe dysmenorrhea, which has landed me in the emergency room five OTHER times from vasovagal syncope. They call it fainting, I call it flatlining. Awful, terrifying experiences. I don’t need to be on the pill for birth control — it’s only so I don’t get a period and risk the collapse. I’ve had two periods in two years — when I was switching pill brands. Other than that, I take the low-dose naltrexone, of course, I use “Traumaplant” on my neck, curtesy of my Czech bff, and I always carry diphenhydramine and acetaminophen.

One of these days, I will post my back story (not a story about my back, but my history) and tell you about the doctors I’ve seen, the tests I’ve had done, and the horrors of what CFS / ME can be. But not yet… not yet.

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LDN Day 11… Thoughts on long-term illness.

Well, the Miralax didn’t work (called Movicol, I believe, in Ireland and the UK), so I took it again this morning. I’m pretty sure the constipation has nothing to do with the low-dose naltrexone. I think it’s from the radical change in my diet and all the supplement pills.

The good news is that yesterday was okay even after the activity of the day before. There were two bad spells: in the afternoon I was feeling very low, very lonely, very sorry for myself. Being home alone is very isolating when you feel like you can’t physically accomplish all the things you wished you could not work in order to do. Did that sentence make sense? I spent years wishing for an extended period of time off of work! I would do yoga and paint our rooms and read 100 books I’ve been meaning to read. I would have movie marathons all day, I would meet friends for lunch, learn to cook, learn Spanish, hike in the beautiful mountains with the dogs… I had to leave my job in May due to this evil illness and I haven’t done any of those things. I haven’t turned on the tv once during the day. I tried gentle yoga a few times before I realised the degree of my muscle atrophy and managed to injure myself repeatedly. I have met people for lunch a few times, but have always been laid up the next day, useless. I’m not sure where the days go, honestly. I used to work an average of 50 hours a week: during the slow months, 45 hours/week, during the busy months, I’ve worked 70+. Now, I am on the computer in the morning for a bit, I do laundry, I tidy up, I meditate, I try to get to the dog park and then it’s the evening. I don’t even talk to anyone on the phone because I don’t really want to talk about me and I don’t want them to ask. Yeah, yeah, same old, same old, how are YOU? The problem is, I don’t want them not to ask, either, because then I feel like I’ve been left to die. I know that’s morbid. It’s just interesting what I’m learning about myself through all of this.

The best I’ve felt in the past nine months was when my best friend came to visit from Ireland. She was a distraction and a counselor. She was full of energy and positivity. We talked about my situation, but so many other things, too. I guess I feel better when I’m not left alone with this spectre and I’m able to talk about different tactics going forward ~ in an analytical way, almost, as if it is obvious I am going to conquer this, I just have to find the right weapon. I expend a lot of energy trying not to lose hope and not be depressed and, yes, not be suicidal, so it’s nice to know that there are friends and family who understand, are sympathetic, but know that things will get better. Or pretend to. The first time I met the Good Doctor, she said, “Let me hold on to hope for you for a while. I know you will get better, so, if you lose all hope, just know that I am holding onto it for you.”

Anyway, yesterday there were two bad spells: the low, lonely moment in the afternoon and the flu in the evening. For about two hours, I was convinced once again that I was catching a cold: sore throat, headache, muscle aches, ear and nose issues. But nothing has changed this morning. I was in bed from 10pm to 10am, up repeatedly, crazy dreams, waking with my hands gripping the sheets in fists, jaw clamped down painfully… BUT, I managed to get 8 hours sleep during those 12 hours. That’s fantastic, I just have to learn to do that in less time.