Tag Archives: sleep

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What’s gone wrong in your system?

I got the results of my sleep study test yesterday. I spend about 15% of my night in deep and REM sleep and these should be around 20%. Also, I have a form of sleep apnea. There are three different kinds (I can’t remember the names): the most severe kind is when you stop breathing for a full ten seconds or more ~ I don’t have this. The second kind is when your throat relaxes to the point that you are not getting enough air, but it is a partial restriction ~ not full apnea. And the last kind is when this throat closing causes your brain to wake up to rectify the situation. I have the latter two. He said my brain is waking up an average of 49 times an hour. This has me in an aroused, wake state a lot, obviously, and it also causes my sleep cycles to be interrupted, so, even if 15% of my sleep is deep, it’s broken up throughout the night, which isn’t as restorative. So, I get to use a CPAP (Continuous Positive Airway Pressure) machine! Seriously, I’m going to sleep with the Zeo headband, a mouth guard and a face mask? Wtf? That’s a pretty sight. But, please god, let it help me feel marginally better.

He also said, “Have you had your ferritin level checked?” “Yes, two months ago. It’s in your computer.” He looked it up: “Oh, it’s low. You should be on a supplement ~ that’ll help you feel less fatigued.”

Now, let me tell you how much this pisses me off. The crappy chronic fatigue clinic ordered this test along with zinc (which is also low). The results came back two months ago and nobody called to tell me what it meant. My regular GP saw the result of the ferritin, also, and didn’t tell me to do anything about it. Mine is low and I don’t have a period. If I had a period, it would be far lower, the sleep doctor said. So, I could have had TWO MONTHS OF SUPPLEMENTS UNDER MY BELT BY NOW IF SOMEONE HAD JUST REVIEWED THE RESULTS AND CALLED ME. I am raging mad! This has happened at every single step along the way this year. Nobody communicates with the patient. Actually, the front desk people do ~ schedulers etc. ~ they’ve been pretty good. And maybe one or two nurses. But is there a doctor out there that says, “I am testing you for X, Y, Z and, when I get the results, I will call you and explain them. I don’t think you have A, B, C and this is why:…”?? How dare they! I don’t know why the ferritin has me all riled up. It’s just that he put me on a heavy-duty supplement (ferrous gluconate 648mg/day), so obviously I need it and it might make a difference. Actually, the reason I’m so annoyed is this has happened so often and can have more serious consequences. I won’t get into the details, but my husband had a test that the doctor said was negative, but we have access to our results online, so, I looked at the results and googled the test and did the math and said, “uuummm, I think this is positive, not negative.” He emailed the doctor and, sure enough: “Oh, yes, sorry, it is positive. We need to treat you for that.” Say what?! I know they’re only human and I know they’re very busy and I know the whole healthcare system is a mess and maybe the doctors are just as frustrated as we are, but what if we didn’t have access to our records? I never would have found the mistake. And that’s just one of countless mistakes. Please, everyone, be your own best advocates. Call for your test results, request copies of every test you get done, review them yourself and point out anything that looks odd. And, pay attention to any result that is in the low or high range of “normal”! Normal has never been normal for me. My TSH was in the low range of normal for years as two giant goiters grew and strangled my thyroid until it wasn’t working anymore. My ferritin was technically in the “normal” range, but the doctor said it was too low. Et cetera, et cetera, blah blah blah.

Ok, on to other stuff. WordPress shows me what internet searches led people to my blog. Yesterday, 6 out of 14 searches were for MRI info, so it makes me really happy that I expended the energy to write my tips. I hope it helped someone out there.

My wash-out period ended on Tuesday, but I haven’t added anything back in because I felt like such shite, I didn’t think I’d be able to distinguish my disease symptoms from any symptoms new foods caused. Maybe I will add rice today. The Good Doctor says we are looking for “stark sensitivities, so worsening of mood, fatigue, energy, pain.” This is really hard. I was feeling pretty good last week and then, without warning, I was a mess. If I had added rice in that day, would I think rice had caused it?

I’m back to using the light box and I’m starting acupuncture again next week. I’m going to try all the supplements again, as well as melatonin, Lyrica, and the Chinese herbs. I just don’t know in what order… I guess I have to add all the eliminated foods back in before I start anything else to gauge my reactions… This is so tedious and time-consuming. I used to love Thanksgiving and Christmas and now I don’t get to celebrate at all. I can’t eat most of the food, I have no energy to do special preparations and, even if I did, there’s no point in planning something when the activity and/or socialising will just cause me to crash. Wow, this life sucks.

On a lighter note, have I mentioned how grateful I am for my husband? He drives me to my appointments, takes the dogs to the park, fixes our roof, landscapes the garden, hoovers, cooks dinner, sprays IcyHot on my back and, above all, keeps a positive attitude.

Good times gone, and you missed them
What’s gone wrong in your system?
Things they bounce like a Spalding
What’d you think, did you miss your calling?

It’s so free, this kind of feeling
It’s like life, it’s so appealing
When you’ve got so much to say
It’s called gratitude, and that’s right

Good times gone, but you feed it
Hate’s grown strong, you feel you need it
Just one thing, do you know you?
What you think that the world owes you?

What’s gonna set you free?
Look inside and you’ll see:
When you’ve got so much to say
It’s called gratitude, and that’s right

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Diet… Day 51. Wash-Out… Day 12.

Last night I drempt that I had been out socialising with friends and I started to crash. I couldn’t get back home, so I was trying to get my husband to find me a hotel room… I had to lie down… I was going to collapse… please help me, it’s dark and wet and where is everyone?… I just need a bed for a few hours… I don’t want to die… And then rats attacked me. They were fat and wet and squeaking and hanging off of me everywhere… I woke up panting while I was being eaten by the rats. I was scared shitless and didn’t know where I was and my sheets were wet from sweat.

I have, however, been feeling a little stronger the last few days. Not strong, but stronger. My headache has eased up enough to be manageable with epsom salt baths, the tens unit and icy hot spray on my neck. The pain and stiffness in my back doesn’t have me in tears and the exhaustion seems to be controlled. Just a normal ME/CFS exhaustion, not a crippling, slurring, crawling-up-the-stairs exhaustion. I have a new symptom driving me batty: constant pins and needles in my right foot for the last 3 days. It moved into my calf last night, but doesn’t seem to be there today. I have had this before in my hands and I have the Raynaud’s issues in my feet, but I can’t remember this maddening constant tingling before.

My days have become very predictable. I am up at around 8:30am, after about 7 to 7.5 hours sleep. I have GREEN tea now and, for breakfast, homemade granola with almond milk and a smoothie (today was pear, pineapple, strawberry smoothie with flax seed, coconut milk and walnuts) while I do some “work” on the computer (pay bills and curse Comcast and Verizon, see how our budget is going, answer emails, apply for disability but get overwhelmed and stop, try to make an Amazon Fresh shopping list because I can’t go grocery shopping and decide it’s too much energy and too expensive, research ME treatments and start to bang my head off the wall, research MRI stories and wish I had the option of Valium, write in my blog etc.). Then I warm up my muscles with a bath or the hot tub, do some stretches and then a meditation, which I always try to turn into a nap. Then lunch (usually a salad or soup or tuna and I’m currently addicted to Terra Chips) and maybe some house chores if I’m able. Maybe some reading or some more computer time. Another meditation (rest before and after activity, always. Resting is considered only lying down with eyes closed, awake, meditating or sleeping, says Dr. Bested). Walk around the house, if I’m able and then the evening with my husband, having dinner (whatever is leftover or whatever he makes because I’m virtually never able to stand for long in the evening without hitting that pain and exhaustion wall), watching a movie ~ whatever I can manage. Another meditation if I’m not going to bed early. Most of the time I’m in bed at 7 or 8pm, reading/researching. Some of the time I can stay upright until 9 or 10pm. I usually don’t turn off the lights until after 11pm.

My sister-in-law sent me a Stretching for Beginners DVD and usually anything anyone buys for me is too advanced because I’m more decrepit than they realised, but this DVD is good! I have done the sitting, standing and lying stretches ~ one on each day that I’m up for it. So far, it has felt good and I’m so proud of me. And I’m ecstatic that I haven’t pulled a muscle doing it. Maybe I’m finally learning. I walked five laps around my house yesterday. I’ve been wearing a pedometer this week and have taken between 1,700 and 2,200 steps each day. I realise this is not a lot — my dog park visits alone were over 2,000 steps — but, those numbers are including 400 to 500 steps walking laps around my house. There are many, many days when I’m not able to do that and my pedometer would say more like 1,000 steps at the end of the day, so I’m happy. I want so desperately to double, triple those steps. I want to go outside and run as hard as I can for as long as I can. On top of everything else I have had to endure, the patience needed to deal with this disease is mind-blowing. Every time I have to go upstairs or downstairs, I think, “What can I take with me?” so I don’t waste any trip. Every movement is about conservation, every day is planned, every physical feeling analysed to ascertain whether it was caused by too much of some activity or emotion. Damn, I shouldn’t have done laundry… I knew I shouldn’t have chopped those vegetables… If only I hadn’t lost my temper… From now on, I must sit down when I dry my hair…

My mood is much better, which is probably why I’m feeling stronger and my symptoms seem a bit more manageable. I think my Mother and brother being here helped give me strength. Plus, I got to Skype with both of my best friends in the last week and that is like a pain killer. Literally ~ people can be pain killers. It’s amazing.

Something else helped nudge me from defeat into fight-mode: I read that there are multiple studies putting the average age of death of ME/CFS patients in the late 50s. That’s about 30 years too early. On the one hand, I’m very grateful that I might have 20 more years to live and, on the other hand, I’m devastated that I might only have 20 more years to live. I’m not emotional over it. It just caused me to think, Alright, time to get over this now because I’m not going to die in my 50s, dammit. Obviously, I’m not just going to “get over it”, but it made the fight come out a little. I can’t just accept that this is permanent because I don’t want to be one of those statistics. So, time to heal. Seriously.

My back is killing me, I have to stop typing now. So, a moment of gratitude: I am grateful every single day that I am not worse off. I am grateful for walking and talking and typing. I am grateful for eating and drinking and showering myself. I am grateful I was never in a motor vehicle accident, never got fungal meningitis from a steroid injection, never got shot or stabbed or beaten up. Some people are much more… oh, ever so much more… oh, muchly much-much more unlucky than you!

It’s a troublesome world. All the people who’re in it
are troubled with troubles almost every minute.
You ought to be thankful, a whole heaping lot,
for the places and people you’re lucky you’re not!

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My Overnight Sleep Study in the Hospital.

Check-in for the overnight sleep study was at 7:30pm. It was downtown in what looks like an office building across from the hospital. My husband drove me there and, when we arrived, the lobby was filled with overweight men. One of them was coughing, so you better believe I put my surgical mask on in the elevator. My husband doesn’t even blink an eye at this behavior. But, you know what? The last time I was getting my blood drawn and I explained to the phlebotomist that I didn’t have a cold, I just didn’t like being in the main public hospital because if I got sicker it wouldn’t bode well, she said, “That’s good! Protect yourself! You should!” And there are people out there who will think I have a cold and be grateful. I, for one, would be very grateful if someone were wearing a mask on a plane. The sickest person I’ve ever come in contact with in my life was sitting next to me on a plane. At the time I wasn’t paranoid, so I didn’t say anything, which I can’t believe. Somebody must have, though, because the air hostess (what are they called now?) tried talking to him — to help him or get him off the plane or something. I have no recollection what happened in the end, actually. Did I sit next to him the whole journey? Shudder.

Anyway, the check-in at the sleep clinic involved filling out the 4 EXACT SAME PAGES of forms as I had at the sleep clinic consultation. I will never understand why they do this to patients. Finally, about a month ago, I got savvy and created a google doc with all my allergies, over-the-counter meds, prescription meds, the reasons I take them, the dosages, when I started, when I stopped etc… So, I just print it out and take it to every appointment. To fill all that in on their forms might literally take hours. Plus, it would be very tiny writing. The room was like a hotel room: flat screen tv, shower, toilet, sink, bed… and 65 degrees. That’s like a walk-in. Okay, a broken walk-in, but that’s very cold for me. The tech told me to get into my pajamas and she would be back to take me to the electrode-placing room. This room was even colder. I sat in my little shorts and top shivering as she spent a full hour placing electrodes all over my scalp, chest and legs. She also put tight belts around me chest and waist. The whole time she was explaining things in her thick Russian accent. I was in Moscow in the 80s, I said. I traded my jeans for cigarettes and badges. Her eyes grew wide, Oh, when it was still the Soviet Union? But, these were beautiful badges and cigarette packs. In fact, I think I have the latter somewhere in a box with my Kiss (the band) bubblegum cards. If I can find them, I’ll post a picture. 24-year old cigarettes!When she was done, I looked like this:

I put another blanket on the bed, cranked up the heat in the room and lay down to read. I brought a suitcase; I came prepared. I brought Gatorade and snacks and pain-killers. I brought a bowl and oatmeal, a mug and teabags. But, really, there is no time for anything. By the time she’s done with you, it’s 9:30pm and she is going to be waking me up before 6am. That’s lovely ~ let’s take a bunch of sleep-deprived people and wake them at the crack of a sparrow’s fart (as my husband says). Even if I had asked the tech to heat me up some water for tea so I could warm up (the hospital paperwork said there was a microwave in the room, so I thought I’d be able to do it myself), I wouldn’t have been able to drink it comfortably because I had wires attached to my chin and things up my nose and even raising your arm is an ordeal. Once you are hooked up, nothing comes on or off and you can’t go to the toilet without waving your hand and calling out (because the tech is watching you all night on infrared cameras).She took my blood pressure which was 109/64 (quite high for me — thank you, chicken broth dinner) and ran me through a series of sensor tests (“point and flex your left foot, make a snoring sound, breathe through your nose only” etc.). They have sleep number beds which I thought was great ~ I always wondered what they were like. Holy shit do they suck. Do not fall for the infomercials! I lay there for an hour and a half trying to get comfortable and fall asleep. I listened to my sleep meditation 4 times in a row. I pressed the “softer” button on the mattress remote control about ten times. For those of you with fibromyalgia or any chronic pain, this is a woeful experience. Every wire, every electrode, every inch of the belts hurt my muscles. Plus, I’m on the thin side, so my bones felt like I was lying on concrete. I was like princess and the pea only the peas were jagged rocks. They want you to stay on your back, if possible, but, after the tenth time waking up in pain along my spine, I rolled to my side, not caring what wires I compromised (don’t worry, if a sensor falls off, the tech is alerted and comes in to replace it). I woke up at some stage and waved my hand and got her to disconnect me so I could go to the loo. I woke up at another stage and pushed the mattress “softer” button about 50 more times. I woke up at another stage and drank some water ~ very dry rooms. The one thing I forgot was my throat spray which would have helped with the tickle. I did have a lozenge in my purse on the other side of the room, but I wasn’t going to call the tech in for that. Hint to anyone doing a sleep study: put anything you think you might want by the bed before the tech hooks you up! I woke up again sweltering, had to push the covers off, take my knee-high wool socks off (Raynaud’s, remember), but no drenching night sweats, thank god. I woke up about 5 times with my neck tweaked to bits. The pillows are HORRIBLE. Why didn’t I tell them I had to bring my own pillow because of my neck injury?? (another hint) And then, at 5:55am, she woke me, ran me through the tests again and took my BP (80/51 ~ oof, I’ve never seen it that low unless I’m in a faint. Is it always that low in the morning?). With the lights on, this is what I found my face had been on, the pillow case slipped off:

Am I in jail? How many drooling, sweaty fat men have slept on that rag of a pillow, I ask you? Ew.

I assume most people shower because the goop they put in your hair is very thick and does not come off without hot water and shampoo, but I just wrapped a scarf around my head and went down to meet my husband. Half an hour later, I was in my own bed, with the electric blanket on, vertebrae cushioned, neck supported, more thankful than I have ever been in my life for a good mattress (Bragada is the brand, worth every penny) and a foam neck pillow (free with the Bragada!).

I don’t get the sleep results for 2 weeks. I guarantee the doctor tells me to take a sleeping pill.

Today, I am having a hard time breathing. My heart and lungs seem to be spasming, so I am going to spend the whole weekend trying to rest and praying praying praying that I don’t fall into a deep, dark crash tonight or tomorrow. Please let me get through that clinic visit without becoming bed-bound, weeping with pain and exhaustion. I’m just now slightly starting to feel less depressed, I need this triumph. I need to do one thing without my body punishing me.

Family and friends: I could have made this post half the length and then answered some of your emails, so I apologise… I’ll try to reply to you all tomorrow and not post on the blog.

Gratitude today is for our bed ~ the first big purchase for our new home in 2006. I had slept on a futon and my brother’s couches (in my 20s, I crashed with him in 3 different apartments) for 6 years before buying my first grown-up (cheap) mattress for my first grown-up apartment when I finally decided to stop being a nomad. Never underestimate the power of a decent mattress. I’m going back to mine right now. And I still have the goop in my hair.

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Sometimes I need a revelation.

There are different levels of terrible when it comes to my nights. The best case scenarios are the nights when I just sleep badly, kind of like I have my whole life: I wake up easily, I don’t sleep very many hours, I’m tossy turny…

Then there are the nights that are like those described here: nightmares, pain, what feels like mental torture… Those are godawful, of course, but it’s because my body and my brain are doing horrific things, as opposed to feeling like I am infected with a deadly bug. The infected-by-a-deadly-bug nights ~ the ones I call my “malarial episodes” ~ those are the worst, the most indescribable. Those were the nights I thought might kill me, that went on for 6 months, which I described in my diary excerpt here. They made me feel like I was close to death all night and then clawing my way back to life throughout the day, only to have to do it all over again.

In between those last two, are nights like last night. A mini-malaria. When you add drenching sweats to my night, it changes everything. ANY version of insomnia/cramps/nightmares/thrashing etc. is better than that coupled with the sweats. The night sweats I get are sickly. I’m not just sweating, I am shaking and my head feels swollen with red-hot infection. There is sweat behind my ears and behind my knees and running down my chest and dripping down my back and pooling in the low points of my face. I wake up trembling, cold, and scared. Last night, it didn’t last as long as the earlier days ~ I wasn’t incapacitated by cold bone-chills first and it wasn’t as scary ~ that’s why it gets a category all its own.

But, I had a revelation last night. Here’s what I want you to know about my night sweats: they have absolutely no bearing on how hot or cold the room is, whether I’m wearing clothes or not, and whether I’m covered with a duvet and blankets or just a sheet. I tested those options within the first few months of my sickness. We turned the heater on or left the windows cracked. We bought dust mite covers for the mattresses and pillows and duvet. We bought a new allergy-helping duvet and pillow and sheet, an air purifier, a humidity-checker device, we kicked the dogs off the bed and made sure to lift the blinds and air out the room so condensation and mold couldn’t grow ~ but not before 10am, so external allergens wouldn’t be at their highest levels. Blah blah blah.

The important fact was that I had never, ever in my life experienced night sweats until that night that I had gotten sick while writing Christmas cards. I got a very high fever in my teens ~ my mother could tell you if I was drenched in sweat, but I don’t remember it. As a child I remember sleeping on some hay (don’t know where I was), but I always remembered that night because I woke up hotter than I’d ever felt in my life. I was worried that the hay might start to smolder. That was the hottest I had felt while sleeping until this year. And I always joked that I don’t sweat. “I can sit in a sauna and not sweat”, I’d say, so this was a very abnormal thing to happen and it came on very suddenly.

Over the months, I had theories about the sweats and I was positive I was right every time. The doctors ruled out cancer and peri-menopause and all the typically things that cause unexplained sweats. At first I thought I was having a reaction to fatty and/or spicy food. I had one of the worst malarial-type episodes after eating a habenero enchilada and another time after eating fried chicken and macaroni and cheese and another time after a Christmas party at a steak house. I was sure I was right. I stopped eating dairy, gluten, high-fat foods. I wasn’t right. Then I was positive it was the birth control pill. I had been on it continuously for a year and it was Yaz ~ a pill that has had some pretty serious side effects with people (as an aside, my body felt great on it). So, I quit taking the pill for two months and nothing changed. However, when I took my opiate painkiller during my period, my sweats were much worse, so I decided they were caused by the painkiller. I went back on the birth control pill and stopped taking the painkiller. I was wrong. The sweats didn’t stop and I’ve been in pain ever since. Then I 100% believed it was my bowels. I knew, with no doubt, that the sweats happened when I was having bowel pressure of some kind in the night. But, through the last month of IBS awfulness from the new diet and supplements, I had no night sweats. And there was quite a bit of constipation pressure, let me tell you. So, I thought it must be anxiety. I must be having panic attacks in the night. The sweats stopped for the most part when I left work, so I thought this proved it. They came back for a few days when my best friend was coming to visit from Ireland, so I thought that doubly-proved it. However, there have been key times when it didn’t happen ~ when I was a big ball of fear and worry and I didn’t have the sweats. And there have been times when I’m feeling pretty good and positive and they did happen.

Which brings me to last night and my revelation. I’m not sure why it took me this long to see it. The sweats happen when I overexert myself. Evil, evil M.E. I left the house at noon yesterday and I didn’t get back until 6pm, which never happens ~ I’m usually far too careful. And I threw the ball for my dog at the park and I was thinking, “watch out with this activity, girl”, but I wanted to push myself a little and see what would happen. Today, my throwing arm is killing me and my back and my neck… it all hurts and aches. My headache will. not. go. away. But the sweats came, too. And I just realised I didn’t meditate yesterday. I don’t think I have missed meditation more than once or twice in 4 months.

So, not only does overdoing it cause the extreme muscle pain and aches the next day and make me couched, but it causes the sweats? I have to look back through my notes and see if this theory holds up. It is understandable that the sweats didn’t stop until after I left my job because my job was the overexertion. Then, I got a handle on what I could do or not do and the sweats subsided. So, I guess, I just can’t push myself? Then how do I know my limits? How do I get better? This morning, it hurts to move my eyes. Literally. It feels like I strained the muscles that hold my eyeballs and, when I chew, it is painful in my temples. Oh, and my chest is tight this morning and it hasn’t been in weeks. I just said to my husband yesterday: the only good change is no tight chest this month.

My sports medicine doctor, with whom I met to discuss my muscles, wants me to try Lyrica and Ambien. I don’t know anymore. I just don’t know.

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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.