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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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Yes, We Can.

By all accounts, Barack Obama is the first U.S. president to utter the phrase “chronic fatigue syndrome”. Thank you, America, for reelecting someone that cares.

Last month, the Chronic Fatigue Syndrome Advisory Committee meeting was held. Here are some details:

http://www.prnewswire.com/news-releases/president-obama-takes-interest-in-chronic-fatigue-syndrome-174345221.html

Here is the letter President Obama wrote to Courtney Miller, the woman that requested more funding for research:

http://phoenixrising.me/wp-content/uploads/President-Obama-Letter-on-CFS.pdf

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Meditation as Medication

Meditation, from the day I started practicing, has been the single best thing for my well-being this year. It’s my charging station, my power cord. E., my best friend, said I was like a mobile phone with a crappy battery that needed to be charged all the time. That is exactly it: I’m okay… I’m okay… I’m fading… I’m gone. For months, my meditations were responses to the “gone” stage ~ when I crashed, they were necessary to recharge me. Now, they are built-in to each day ~ they are necessities to stop me from getting to the point that I’m gone. I meditate twice, if not three times, a day. This means going to my little meditation room (originally created to be my yoga room, which I hope to be able to do again one day), lying on my mat (a small folding futon), putting on my eye shades and listening to a CD, YouTube or podcast. I can do my own meditation silently in my head, but I much prefer to listen to someone guiding me. I find it so calming ~ that is, if I can find the right voice. There are some WACKOS on YouTube.

The downside of this is, of course, the cost. The best meditations I have found were on Amazon and, most of the time, they seem to be about $20 for an hour of talking. Meditation Oasis podcasts are free, but they’re all similar and quite short. There is no shortage of 5 to 20 minute meditations out there. Ideally, I’d like to find hour-long, good quality meditations ~ guided imagery or body scans or breath work or hypnosis practices. Lots of the time, I’m hoping to fall asleep. I’ll listen for half an hour and then doze off, but I always wake up when the meditation ends, so longer is better for me. The other downside is repetition ~ I have listened to my five CDs hundreds of times. When you know a meditation by heart, you tend not to pay attention as closely as you once did.

Interestingly, though, each time I do guided imagery, something new always bubbles up in my brain. And it’s always from my past. My therapist says I am a future thinker: the what if thoughts. What if my husband gets sick? What if I can never work again? What if something happens to a loved one abroad and I need to get on a plane? What if I have an allergic reaction to Lyrica? What if I lose health insurance? What if there’s an earthquake? What if I get the flu? What if I can’t get disability? What if we can’t pay our mortgage? What if I’m like this forever? But, I don’t think about/ talk about/ dwell on my past. However, that doesn’t stop it from playing out like little movies in my meditations and I sometimes find myself lying peacefully with tears running from behind my eye shade into my ears.

There is one guided imagery phone app that I listen to which has me walk down ten steps to a landing with two doors. When I open one of the doors, there is always something new behind it. Last week, I opened the door onto a field in Tiglin, Ireland where I went with E. when we were kids. How old were we? 14? 15? I can smell the air and see the trees and remember the feeling of freedom and excitement. It was before health problems and before the real insecurities of teenage years. We were out of the city, alone, responsible. We were giddy, we were growing up.
Another day, I opened the door into a cabin where I stayed with my two brothers. It was a skiing trip, I was a little older. We drank some beers and blared Janis Joplin and sang along to every song. My brother, who is seven years older, said, “I didn’t know you knew Janis” and I felt jubilant ~ as if I was finally an accepted member of the cool kids instead of the annoying, bratty baby sister. I think they laughed at one of my jokes; I remember pure joy.
Another day, the door opened on a stream. I ran down a path and jumped from rock to rock and, when I saw Dash, I realised I was at the creek next to my Dad’s old house. Dash was our dog from when I was five to the age of twenty. We ran along that creek all the time. Dash didn’t have to be on a leash, he would follow me up and down the rocks and, when I sat down in the sun, he would, too. My constant companion, my protector. A few weeks ago, Dash would have turned 238 ~ in dog years.

Whenever those meditations tell me to imagine a time when I felt happy or go to a room where I feel safe and secure, surrounded by those I love, there are always dogs. My imagined room has all the dogs from my whole life, protecting me, playing with me, making me laugh, making me forget all else. My gratitude today goes to Dash, Floppy, Toby, Joxer, Bowie, and Riley. And to mindfulness and meditation, which keep my battery charged and keep me (mostly) in the here and now.

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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.