Tag Archives: exhaustion

by

…it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled…

What a roller coaster it has been. One day I want to write about one thing, the next day, everything has changed and I want to write a whole different post… So, I wind up writing nothing at all.

I spent three days feeling good. And I mean good. Stiffness was drastically reduced, my back pain was virtually eliminated, my energy level was up and, best of all, I had no headache. For three days, I wasn’t grimacing at my husband’s footsteps or holding my ears while we watched tv. It was bliss, I tell you. Then, a series of unfortunate events: Sunday night, my husband turned on our yet-unused gas fireplace insert (purchased because wood fires make me dizzy and my lungs burn) and the house filled with chemically burny metal paint fumes. I didn’t think much of it ~ it’s a brand new unit, after all ~ until Monday morning when I woke up very dizzy. My husband had gone to SO MUCH trouble to get this fireplace for next to nothing ~ driving out of the city to a clearance sale, standing on the roof, repairing the chimney for days, going into the crawlspace and disappearing into the hearth to run the gas, building/grinding/soldering/I-don’t-know-whating a framework because the insert was much smaller than the opening to our fireplace… So, I was upset and emotional all day. What if the fumes from the fireplace made me dizzy? Oh no, we didn’t think of that! What if the new paint or whatever doesn’t burn off and that smell lasts for ages or the permanent off-gas causes me to get dizzy or makes my eyes burn or makes my chest tight…? Where will I go while he tries to burn off the smell? Should I get a hotel? What if this bloody fireplace causes me to be worse in the long term? The usual fretting. So, we were worried and annoyed and frustrated. Also, I think everything was exacerbated by PMS because, after months of being an emotional zen master, I felt inflamed. I was distraught and enraged. I was guilty that my husband’s fireplace project might be a complete waste. Knowing my sensitivity to scents and chemicals, I was frustrated that we hadn’t taken this into consideration. I was upset that my husband wasn’t more sympathetic to how this might worsen my symptoms (he wasn’t pleased when I asked him not to turn it on again). I was furious that this disease ruins everything. That night, knowing my period was looming and taken aback by the onslaught of my emotion, I started the birth control pill again. I thought, Whoa, PMS is HELL. I need my hormones regulated again. Then, that night, things fell apart. I woke up feeling like someone had turned on a shower over me. Sweat was running down my ribs and dripping onto the bed. I was so confused. At first I thought it was blood… Then I thought maybe my cpap machine was leaking water… I hadn’t had these sort of drenching night sweats in so many months, that I didn’t even recognise the symptom. My sheets were soaked. I got up, pulled off the sheets, changed my pillow, lay down some towels. My cpap mask and headgear were slick with sweat. I had to take it all off to dry it, wash my face. And I was shaking. And scared. Was it from the pill?? Was it from the heightened anger and emotion of the day? Was it from the tart cherry juice I started drinking? Was it from the fireplace somehow? Was it because I have been taking melatonin every night for too long? I checked my blood sugar to rule out hypoglycemia and went back into fitful sleep.

My acupuncturist encouraged me to see it as a good sign. He explained that, in Chinese medicine, as the body gets stronger, you will experience some of the earlier symptoms again. He said, I had been in the Yang Ming stage, where the pathogen was deep inside my body, but, as I try to fight it off, the pathogen is pushed into the Shao Yang ~ the “Lesser Yang”, Which is characterised by the chills and sweats. He said, “Fever means you are winning.” That made me feel better for about two hours until I developed a crushing headache, which hasn’t gone away in five days. And this headache isn’t the normal one ~ it feels more like the narcotic bounce-back headaches I get. So, I start the relentless questioning again: Is it from the acupuncture (it got much worse that night)? Is it from the birth control pill? Is it from the fireplace? Did I overexert myself? Is it from the tart cherry juice, for fuck’s sake?? The hard part is that I am convinced the headache is from the pill and, if you stupidly go online and research it, like every other drug in the world, the horror stories make you want to stop right there and then. So, here I am again… weighing the pros and cons of having a viciously painful, incapacitating period over Christmas or putting up with this headache all day, every day, which is not touched by painkillers and makes me feel as if I am carrying a very dangerous, sleeping 2,000lb crocodile on my head: constant pressure and pain, never making noise or sudden movements… Right now, not being in the throes of period cramps, I choose a period over the headache and I decide I won’t take the pill tonight (imagine what I am doing to my body jumping on and off the pill like this!). However, you know one week from now, when I am curled in a ball, weeping and ~ god forbid ~ the headache hasn’t gone away, I’ll be wanting to put myself back on birth control.

Those few days before the fumey-angry-sweaty-pill day were glorious. I thought I was coming out of the dark ages. I was sleeping better, I hadn’t put IcyHot on my back in ages, I didn’t think about a painkiller for two whole days! I’ve had the surge in energy before but I can’t remember the last time I had had some relief in stiffness and pain. Heaven.

That’s my catch-up. I am just trying to maintain my tenuous grasp on Okay, so we can have a nice Christmas with my sister and her boyfriend.

Speaking of, my sister and brother came over to visit for one day last week (my brother, a pilot, had a layover here) and it was absolutely wonderful. Even though I had tried very hard not to talk too much, gesticulate too much, laugh too much, walk around too much, still, by the end of the night, my internal tremors were vibrating from scalp to toe, my eyes were unfocused, my face was red and muscles stiff… I crawled to bed at 9:15pm and thought, “That day was worth every symptom.” I am so grateful for family, for lightness and conversation and laughter. Once in a while, it is important to put fear away and forget the careful construction of the day… and just live a little.

You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn’t like it.They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster.

by

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.

by

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.

by

Welcome Back… Your dreams were your ticket out.

Welcome back night sweats, crushing headache, terrible spinal pain, and debilitating exhaustion. I didn’t miss you at all, but you decided to return anyway. Oh, and you brought pulled muscle and despair with you. Excellent! I was wondering if they had perhaps gone for a while, but I guess not ~ just a quick one-and-a-half-day jaunt away. Well good, I almost remembered how to laugh. I almost remembered what it’s like to have a normal conversation without grimacing, deep breathing or being distracted by pain. I almost enjoyed the taste of food. I almost got to have a meal with my family without it being a gargantuan effort to drag myself upright, raise my eyes to meet theirs and hear what they were talking about. Almost. But not quite.

by

Wash-out Period… Day 4

For the last 4 days I have only taken my thyroid hormones, fiber, Colace and calcium, my inhaler (why can’t I breathe?!), antihistamine eye drops, nasal spray and birth control pill. I figure these are things I will have to take regularly, so they don’t have to be omitted. A few days ago, I added back in peas in the form of soup and yesterday I had sweet potato chips. Otherwise, my diet is still no-everything. I still haven’t decided whether I will add back in grains, dairy etc. over the next two weeks. I probably will, but it’s hard to undo the strictness of what I’ve been doing the last month, if you know what I mean. When I commit to a diet change to see if it helps, I really commit.

I seem to be having a heightened sensitivity to my tea in the mornings. I used to drink 3 large mugs of black Irish tea, steeped for about 10 minutes each time. I cut that down to 2 a while ago. Then, about a month ago, I cut that down to 1 steeped, 1 not steeped. Now, it seems I can only handle 1 big mug, not steeped at all or my heart threatens to burst out of my chest. I also stopped using my sweetener today in case my body has decided to reject it after all these years. Lyons tea, unsteeped, unsweetened, with soy milk is not tea at all. Another one of my pleasures down the drain. Really, without booze, wine, tea, pasta, bread, popcorn and ice cream, what joy is left in life?

Yesterday was one of my best days in a long, long time. It wasn’t great ~ still not back to the energy I had when I was able to go to the dog park ~ but, I was talking and laughing with my family, allowing myself to be animated. The pulled muscle in my lower back felt much better, so I even walked around the house 4 times: 400 steps. I hit a big brick wall at about 8pm. My muscles filled with lead and I felt like I couldn’t keep my head up. I lay in bed until almost midnight, too tired to sleep. One time my new phone just froze…stopped working…couldn’t be turned on or off. The guy at the store said it was “bricked”. That’s exactly how I feel when I hit a wall. Bricked. Can’t sleep, can’t speak, can hardly move. Just BRICKED.

Last night, I got about 7 hours sleep, which has been typical since I went off of the naltrexone. I didn’t have night sweats (!!!) and this morning, besides extreme stiffness, sore throat, lungs feeling torched and my skin thinking I’m 15 again, I’m doing okay (!!!). I asked my brother, “Why did you drag me out dancing last night in 5-inch heels and make me smoke a whole pack of cigarettes?” It feels worse than that, unfortunately, but it’s nice to pretend that it’s a temporary result of a night on the town.

It’s wonderful to have my Mother here. She does my meditations with me and talks to me when I’m in bed in pain or too tired to do anything but slur. It makes this journey much less lonely.

I’m grateful for the piano music that surrounded me my whole childhood. My Grandmother and Mother both played and now, when I hear it, I am soothed and at peace.