Tag Archives: sleep

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Tipping the Earth off its Axis

I’ve regressed again. For almost two weeks after the Worst Headache, I felt stronger and had more energy. My pedometer showed this many steps over the days:

1,500
1,800
2,000
2,050
2,300
2,450
2,900
2,950

And then…

2,450
2,300
2,200
1,400
1,200

That last one was yesterday. I didn’t do my stretches for the first time in ages. I haven’t walked laps of the house in the last two days. I’m hurting. I’m still having a hellish time with the CPAP. Not only at night when I have problems for all the previously-mentioned reasons, but during the day I’m dealing with IBS issues from the air that I swallow. They call it aerophagia and I’ve got it bad. Within minutes of putting the mask on my face, I have pains in my stomach from the trapped air and then, the next day, I have pains in my lower abdomen as it slowly, slowly moves downward.

I’m sleeping 6 or 7 sporadic hours and I can’t adequately articulate the stiffness in my body. Everything is inflamed: muscles, throat, lungs tight, eyes swollen alarmingly… A week ago, I said to my husband: “Maybe it’s gone…” It’s quite pathetic that I still think that way ~ that a few better days equal recovery. Yesterday, I couldn’t stop crying ~ not from my current state or the loss of my former life, but from the fear that I will get worse. There are so many people with ME that are so much more disabled than I am and I am terrified every minute of every day that I haven’t seen the worst of this. As I start to go backwards, I think, What if I keep sliding? What happens if I’m unable to take a shower or get to the bathroom or sit up or talk? What if I have to go to the hospital and I contract MRSA or sepsis? I know it sounds like I need anti-anxiety medication ~ and I probably do ~ but I refuse. Meds create more concerns for me. Is it a coincidence that I started to feel better during my wash-out period?

I realise that fear is debilitating and can create a self-fulfilling prophecy, so I work very hard moment-by-moment to be mindfully in the here and now. I truly do. It is my new career: You are alive. If you are breathing, there is more right with you than wrong with you. You will be okay, no matter what. You have support. I meditate into the fear and breathe out of it. I tell Mr. Fear that I understand his concern, but that he needs to take a seat and be quiet now because I have everything under control. But it is fucking hard. I’m not sure I DO have it under control. I think, actually, this disease is in control. When I feel this way… as symptoms intensify… I want to start screaming. I want to scream my fear as loud as I can. I want to wail and bite and punch and kick. If I unleashed it, I feel my fear could fill the whole world, ricochet off of mountains, travel up rivers, raze cities to the ground, create tsunamis and tectonic shifts and tip the earth off its axis.

I read somewhere that worrying is like praying for things you don’t want to happen. Yesterday, my massage therapist said, “Just keep saying: I am strong. I can do anything. I’ll get better.” So… deep breath. It’ll be slow, but I will get stronger, I will get better. I’ve just never been a very patient person.

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An update for everyone…

I am still feeling stronger than I was a month and a half ago, but still so much worse than two and a half months ago. My energy level is holding steady. I’m able to walk 2,000 – 3,000 steps and have about 12 usable hours each day. I’m able to do house chores, work on the computer, watch TV and read. I’ve walked seven laps of our house the last two days and been able to play a little bit with the dogs. The last time I got hit by stronger pain and fatigue was when I cooked a meal that had me standing in the kitchen for an hour, chopping veg etc. That took its toll.

My pain level has also been steady since the Worst Headache. My muscles ache, my joints are stiff, my neck is always in pain, my head always hurts to some degree, but, in the last two weeks, I have not been immobilised, I’ve not been reduced to tears of helplessness. However, I do keep resorting to Solpadeine (acetaminophen/codeine). Not a lot ~ a quarter to a half of a dose to take the edge off ~ but, I’m aware that the longer chronic pain goes untreated by long-term pharmaceutical therapy (ie: drugs that change brain chemistry, like antidepressants or anticonvulsants), the harder it is to get on top of the problem. So, I have to stop the Solpadeine and start experimenting with long-term solutions.

My sleep is still poor. “Unhygienic”, as the doctors like to say. Sleep hygiene is very important! I have switched to the “nasal pillows” with the CPAP. It’s the mask that shoots straight up your nostrils as opposed to covering your nose or covering your nose AND mouth. It has a much lower profile, fewer parts, more minimal headgear, so it makes sleeping on my side much, much easier. But, if/when you open your mouth, a hollowing wind pours out. The air going up your nose comes straight out your mouth rather than going down your throat. You can feel your uvula flapping and it makes you kind of choke. I keep waiting for a colony of bats to fly out of my mouth… or a high-speed freight train. It’s like Charlize Theron sucking the soul out of those girls in that awful Huntsmen film… Or, even better, the dude in The Green Mile sucking the bad stuff out of me!! Anyway, with the nasal pillows, I have been taping my mouth closed with athletic tape. Yes, it’s true. It worked wonderfully for the first few hours, but, what you don’t know is, when you put tape over your mouth and go to sleep, you DROOL. A lot. Or maybe it’s the humidified water coming through the nose and condensing at the lips… Either way, it wakes you up and, when you pull the tape off, on top of hurting your delicate facial skin, you dribble and your mouth is all wet. Gross. They have chinstraps to keep your mouth closed, but, honestly, I can’t take one more strap around my head. Someone suggested I wear swimming goggles to stop my eyes from being dry and burny in the morning, so imagine this: Zeo headband, mouth guard, swimming goggles, CPAP mask, chinstrap, and tape over my mouth… Really?

Physically, my eyes are swollen and bloodshot (I think it is actually the pressurised air drying my eyes from behind ~ from inside ~ because there is no leak on my mask blowing up into my eyes), inside my nose is raw, ears are plugged and my throat is sore. All from the CPAP. Other than that, I’m having IBS issues again. I think it is because of the iron supplement and also because I have been adding back foods I haven’t had in months. Which brings me to my diet…

I am in the middle of a very long elimination diet. It’s been ten weeks since I eliminated all legumes, grains (except oats), dairy, starchy veg, fatty meat (kinda), eggs and tomatoes. And I’ve been gluten-free for seven months. So far, I have “challenged” myself with dairy, eggs, rice, tomatoes and sweet potatoes. I think rice, tomatoes and sweet potatoes are okay, but I am going to continue to eliminate dairy and eggs. After eating dairy, I became extremely exhausted ~ that indescribable inability to move or speak… So, I am going to re-challenge dairy and eggs down the road. Corn is next to be added in (oh dear lord, I can’t wait for popcorn) and then beans…

I’m back to acupuncture and using the light box, but still haven’t started Lyrica and I’m still waiting on supplements (besides iron and vitamin D and B). After talking to Z, my best friend here in Seattle, my goal is to be able to celebrate a teeny, tiny Thanksgiving. We spend every year at Z and her husband’s house and now they have a new baby. I was going to tell them that I’m not doing holidays this year, but she said, “What if we brought the mountain to Mohammad? We could come to your house and only stay as long as you’re up for it. Maybe an hour, maybe the whole afternoon and early evening…” I’m scared because I know I will want to put a bunch of effort into it ~ cook, clean the house, interact, talk, laugh, play games etc. ~ but, if I can hold myself back and relax and just think of it as a visit as opposed to THANKSGIVING, I should be okay. It made me want to cry that she would want to keep the holiday spark aglow and cart the whole family to our house. Good friends stick by you, even in housebound sickness.

I became sick exactly one year ago this week. I left work exactly six months ago last Friday. I will never stop trying to get better, I will never stop looking for my next career, I will never be okay or content with this new life, but I think maybe I’ve reached acceptance. And, for that, I am grateful. Emotionally, I’m calm. I have a lot of fear, but I’m not depressed, anxious or despairing. This is it. One day at a time.

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And like that ~ poof ~ it’s gone.

Horrible sleep with the CPAP machine. No deep sleep, awake constantly. Woke for good at 7:30am (new clock-back time) and couldn’t get out of bed for 3 hours. Very unlike me. Just so sore, so tired, so swollen, can’t move my neck, eyes look like I ate MSG for dinner. First things I did this morning were spray IcyHot on my back, put an ice pack on my neck and take a Solpadeine. Yesterday, I took 2900 steps ~ way more than ever before ~ but, I think I would have been okay if I had had a decent night’s sleep. Fingers crossed that I can work through this stiffness and be okay this evening.

The greatest trick the Devil ever pulled was convincing the world he didn’t exist. I will be grateful that my eyes were opened. I will believe there is a reason. I will be thankful that I no longer abuse my body with constant stress and pressure. And that I now know the importance ~ no, the absolute necessity ~ of taking steps towards making my body, mind and environment healthier. This invisible disease is my hell and I know it exists.

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I know why the caged horse jiggles.

I’m kind of excited.

I tried the CPAP machine again the other night and took it off after a few hours of it driving me bananas. I thought it was hopeless, but, I read up on people’s experiences a bit more and it seems everyone has a difficult time adapting and the best advice is to go in with a positive attiutude… So, I tried again. This time with a smile. It was still a nightmare. Mine is a body that needs to move in the night. I’m in a lot of pain when I stay in one position, so I toss and turn quite a bit. EVERY time I moved, the mask sprung a leak and I had to come awake to adjust it. It doesn’t fit the bridge of my nose, so I have a band aid and a wad of toilet paper holding in the air at the top of the mask. The band aid fell off three times and I kept getting up and getting progressively bigger, stronger ones. I felt like I woke up 100 times when my mouth dropped open and the air filled my cheeks and made them flutter like a skydiver. I woke up a few times with pains in my belly from trapped gas and air… HOWEVER, look at my Zeo graph from last night:

If you’ll recall, my graphs have a tendency to look like this one ~ the top line being “W” for “Wake”:

So, I’m kind of excited. Maybe I was awake a lot between 11pm and 3am (as you can see, the first picture only spans 2am to 10am and I turned out the light at around 11pm) and I woke up briefly when I moved in the night, but not enough to count on the graph… And maybe, just maybe, the CPAP stopped the constant waking from the apnea that I’m usually not consciously aware of, but which affects me throughout my waking life…

In the last few weeks, I finally got some abnormal tests, which shouldn’t make me happy, but it DOES. I have sleep apnea ~ I was waking up 49 times an hour! ~ I have low zinc and iron, I have no good bacteria in my gut (thank god no one put me on antibiotics; that could be pretty dangerous). There are some natural interventions that might actually make me feel much better.

This morning, my eyes are blood shot and my neck is killing me and my back is very stiff from trying not to move in the night, but I’m hopeful. I’ve also felt stronger in the last week since my big headache went away (I still have a daily headache, but it is my normal, manageable one). It’s interesting ~ I’m in the same physical pain, I’m being hit by the same ol’ exhaustion, but I’ve been able to keep up with my stretches without injury (I’m being very careful to take a hot shower or bath before stretching so my muscles are warm)… I’ve been able to eat rather than feeling too fluish to be bothered… I’ve been able to watch a movie and laugh… Each of the last 4 days I’ve taken over 2,000 steps. By comparison, when I had my headache it was more like 500 and, in the weeks before the headache, it was 1,000-1,500. I’ve been jiggling my legs again. I know that sounds weird, but I was always a jiggler while sitting or watching TV ~ my feet would be moving ceaselessly or my knee would be bobbing up and down. It always distracted my husband. I was the girl in the movie theatre that was making your seat shake from down the row. That movement totally went away with the exhaustion. I sit, bricked, like a lump of concrete, no interaction, barely able to turn my head or answer a question. Lately, I’ve noticed the jiggles return. I told my acupuncturist that I felt like a racehorse in the cage before they go down the track. Like I want to sprint but I’m caged and antsy. I know why the caged horse jiggles.

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CPAP HELL.

To those of you out there that use a CPAP machine successfully, I applaud you. So far, my experience has been a little slice of hell.

I picked up the machine and was fitted for the mask last Friday. She gave me a “nasal pillows” mask, which fits into your nostrils, but does not cover your mouth. She didn’t ask me if I had allergies or nose issues and I had done zero research, so, I had no idea what to expect. For the rest of Friday night and all day Saturday, there was pain and pressure in my sinuses behind my cheekbones and under my eyebrows. My nasal cavities swelled up to the point that I couldn’t breathe through my nose. It felt like someone had stuck a hose blowing pressurized air up my nose ~ oh, because SOMEONE HAD STUCK A HOSE BLOWING PRESSURIZED AIR UP MY NOSE! Godawful. That got me doing research. I can look forward to sinus infections, upper respiratory infections, dry throat, swollen and sore nasal cavaties, bloating, burping, farting, sores and indents on my nose and cheeks, stiff neck from the S&M-type headgear, the inability to move in my sleep, having to purchase gallons of distilled water every week, dry eyes from the air vent, constant waking from the noise of the machine, 20 minutes of intensive cleaning every day to lower the chances of infection, and a HUGE BILL that never goes away because you have to replace all the components every couple months.

But, both my GP and the Good Doctor were incredibly excited that the sleep study found something that might help my plight, so I’m trying to remain positive. After doing tireless research for 4 days, I went back on Monday afternoon and got a different mask that covers my nose and mouth, thinking that would do the trick if my nose was stuffy. My husband bought me a basin, sponges, dish soap, and distilled water. I washed everything carefully. I read all 3 user manuals. And, last night, I descended into CPAP hell. The headgear pulled my hair and, in order for there not to be leaks under the mask, it had to be so tight around my neck at the base of my skull that it felt like the Pulp Fiction ball gag or some sort of medieval torture device.

I fiddled with the mask until 1am, taking it on and off, smooshing it left and right, up and down, tighter and looser. It doesn’t matter that it is a full fask mask, you still can’t breathe through your mouth because your cheeks fill up with air and flutter. Then I fiddled with the hose for another half an hour: off the side of the bed, under my pillow, under the covers, over my shoulder. I fiddled with the machine for another half an hour: humidity up, humidity down, hose warmer on and off, exhalation easier and harder, ramp up, no ramp up… And then I tried to sleep to no avail. I was hyper-conscious of the sounds, of not moving, of causing a leak, of the position of my neck… The machine kept revving. I don’t think it’s meant to do that. It would be a continuous soft pressure and then REV into higher pressure, but only for a second. Every time it did that, I came awake again, plus I had a bad pain in my stomach, my guess is due to swallowing air. At 3am, I pulled the thing off. But, the damage was already done to my precarious brain. It was like I had watched a horror movie and drank a quadruple espresso right before bed. I never quite went to sleep, I had fitful dreams about failing at tasks and dying from illness.

Today, after three really good days, I feel terrible. I’m shaky and I can’t breathe well and my neck is tweaked and my head is killing me. I may try again tonight, but I’m scared now. Literally, scared. The night before last, I had the number one best night sleep of the year. 9.5 hours and only a few times waking up. I was on the upswing. My symptoms are incredibly compounded by poor sleep, so I’m not very eager to try again and have another tortured experience.

My Dad warned me about this. He suggested a dental device that helps sleep apnea. I already wear a mouth guard, so that might be an easier transition. I shall call my dentist tomorrow.

Father knows best.