Another good day for me! And more sun for the boys to soak up. 🙂
Category Archives: My story
Fish or Get Out of the Boat
I’m not up for writing, honestly, but I want to track a few things from the last few weeks. The Monday before last I had a follow up with the Good Doctor after 9 weeks. Let me just tell you, I love this doctor. I wish she were an expert in M.E., but she is the closest ally I have in this fight and I feel so confident in her hands. At least that was my feeling leaving her office. Now, looking back, I can’t remember much of what we talked about or decided. I told her I was a different person than I was the last time I saw her (New Year’s Eve). I want to remember that because I feel like hell today and I need to know that there has been progress. On New Year’s Eve I was just starting to feel better after the very low low of December. On Christmas Eve, while the men were in the kitchen, I told my sister that if things didn’t change, I couldn’t imagine going on. I was in such extreme pain and stiffness, that it was difficult to go through the motions of life, let alone find joy in the moments. As I’ve mentioned before, the muscle and back pain were horrid, but the headaches, coupled with the EXTREME noise and light sensitivity, were the main culprits. Well, cut to this last appointment with the Good Doctor and I have had over two months with hardly any headaches and much less pain, overall. What changed? I don’t know. Here are my theories:
December 1st: started Berberine
December 4th: started drinking only filtered water
December 11th: started drinking tart cherry juice concentrate every night
December 17th: stopped the birth control pill
Late December: stopped taking pain killers
January 5th: started vitamin B2 and selenium
January 6th: started cooking (once in a while) with coconut oil
I started feeling a little better on December 26th, but pain continued to lift through January. Sleep was better, too. I have been putting my faith in the tart cherry juice, but, honestly, I think it has more to do with eliminating the pill and pain killers.
Unfortunately, my sleep started to go downhill again and continues to decline. I fall asleep without any problem, I stay in bed 10 to 12 hours, sometimes I don’t remember waking up at all (although, most nights I remember 12 to 15 awakenings), but I hardly ever have proper, calm sleep cycles. I I feel like I am going insane. I was so thrilled the last few weeks that, although my nights were tortured, my days were staying okay. Until this past weekend. Today, I am so tired. I ache all over. I am back to moving like the Tin Man. I don’t recognise myself in the mirror. I think, for the first time in my life, I look older than I am.
The Good Doc’s plan for me is to try valerian for sleep and then move on to Chinese herbs and/or an antidepressant. She is the only doctor I’ve ever seen that uses psychotropic drugs as a last resort. She said, “Cymbalta is great for depression, but you’re not depressed.” I’m not. I’m not sad or hopeless. My mood is actually pretty good (as long as the bad pain stays away). She said, “It can help with sleep, but can cause insomnia, too, and it has a host of side effects that might set you back. So, let’s eliminate all other options first.” Love.
She also said I can try adding legumes back into my diet. I’m going to wait until after my period to eliminate any confounding variables caused from PMS… but, I might not even add them back at all. I have been on this diet for so long, I feel like I should keep it consistent while I try the Chinese herbs and sleep drug.
That Monday I also saw the sleep clinic tech to get a new cpap mask. It’s the most impressively designed mask that I’ve come across yet (Respironics Wisp), but it makes no difference, I’m still awake hundreds of times each night (literally hundreds ~ the sleep study showed I was waking up 48 times an hour). Last Friday, I went to see the rheumatologist I saw a year ago (literally ~ the doc pointed out I was there on the same date in 2012). The first thing he said was, “Why are you here? Chronic fatigue syndrome is an infectious disease.” My brain was so fried, I honestly couldn’t come up with any reason why I was there. I couldn’t for the life of me think what a rheumatologist does. I had gone to acupuncture beforehand and the Master had done a session that was meant to make me very tired so I could sleep well that night. It didn’t help me sleep that night, but it certainly caused me to be half-comatose in the hours after the appointment ~ I was slurring my words driving from acupuncture to the hospital and, after melting for an hour in the waiting room, I was far from the articulate, cogent, well-informed patient I pride myself on being… And the rheumy was a fast talker ~ a New York native, I think, based on the accent ~ and I was the last appointment of the week, so all-in-all, it wasn’t going the way I had planned. I think I said something like, “I’m not sleeping and I think it’s the fibromyalgia-type constant awakenings and I wanted to talk to someone who knew something about this.” He told me about the sleep study that Dr. Moldofsky conducted many years ago (I’ve now heard about this study from every single doctor I’ve talked with about sleep. It must be on every medical school exam) and then he said, “Try amitriptyline. You have to try something. I have patients that would rather limp in pain their whole lives than have knee or hip surgery. That’s fine, but you narrow the horizons of your life.” I know that is exactly how I would be: limping is a certainty; surgery is an unknown and full of risks. The doctor said, “As my father used to say, [for days I’ve been trying to remember the adage he used: fish or get out of the boat, catch something or reel it in, cast or go ashore… something like this].” I replied, “My Dad would probably say, shit or get off the pot.” And that was the end of our appointment.
So, the week’s round-up: After three nights, valerian is making no difference and I’m seriously considering turning to amitriptyline or cymbalta. My period is four days late. My skin is like braille. I’m swollen, tired and achy. BUT, for a few weeks there, I thought I was definitely making progress and that has given me much renewed hope for the future. I can do this. I shall overcome. Plus, every day without a headache is a good day. Pure gratitude!
Ghosts in the Machine
Yesterday, my acupuncturist said, “This session should make you very relaxed and tired and you should sleep very well.” That prediction actually seemed to be true until 5am when the ghost in my room pulled and released the window blind and woke me up like a flash-bang detonated next to my head. I had been sound asleep, dreaming about Janis Joplin of all people. It’s one of those spring-loaded, black-out blinds and the sound of its uncontrolled retraction ricocheted off of every surface in the room and bounced around my cranium like a high-speed destructive bowling ball. After figuring out where I was and who I was and what had happened, I regained control of my fight-or-flight panting and was able to release my fingernails and toenails from their death-grip in the ceiling plaster. I lay down, trying to go back to sleep, but I knew that sun would come streaming in soon and I wake up from the glow of an alarm clock, so I had to make a move.
I stepped onto the chest below the window (climbing Mount Everest) and reached up in the dark to try to get a grip of the end of the blind, but it had wound itself too tightly to get my fingers behind an edge. Then I realised I was standing in my bedroom window naked and, if someone happened to be out there in the garden or my neighbour happened to have insomnia and was gazing out her window, they were getting an eye-full. I stepped down off the chest, put on my robe and climbed back up (Mount Everest again). After fiddling with the blind from every angle, I knew I wouldn’t make it budge without some sort of pliers to grip the end. I was also still shaking from the adrenaline and sweating from the exertion of standing up out of bed, climbing, reaching above my head… So, I gave up and went searching for my eye shades. Of course, they were in none of the usual places. I went into my meditation room and found my dusty back-up pair, knowing all these lights on and this rummaging was waking me up more and more. And worse: the dogs downstairs would think it was morning and, once they’re up, I’m screwed. That’s a combined total of 170lbs of hunger.
Back in bed, I lay trying to sleep for about an hour and, just when I was drifting off, the Rascally Robin started pecking at the window in our living room. I keep hoping it’ll stop and I keep forgetting to do something about it during the day, but EVERY MORNING AT AROUND 6AM this robin starts attacking his reflection in our window. I realise this wouldn’t wake up 90% of you ~ it’s a window on a different floor, for god’s sake ~ and I tried so hard to talk myself into believing it was just the soothing clickclack of a branch in the wind, but it didn’t work: I would start to drift off and it would wake me up every few minutes. Over and over. Torture. SO, I got up and closed my bedroom door. I know, this seems like an obvious remedy ~ something I should always be doing ~ but a closed door in our house is like a dog whistle. I could lie in bed all day with the door open and neither dog would have any interest in coming in, but, close that door and they are behind it scratching, whining and pacing back and forth, sure they are missing out on some awesome adventure.
Sure enough, as soon as I closed the door, got back in bed, put my eye shades on and settled down ~ just long enough for me to do all those things ~ there was a scratch on the door. And then a whine. I got up, let my dog in, let him on the bed, told him to shut up and then we both lay down and listened to the Rascally Robin pecking on the window downstairs. When it got a little louder, my dog started to get interested. He started doing that “aa-FUH” thing that dogs do ~ that half-bark puffing air through their lips. So, I started looking for the earplugs that my husband had gotten me ages ago. Up out of bed, rummage rummage, back in bed. The little packet only had one earplug in it. Not joking. Up out of bed, rummage rummage, got second packet, back in bed, insert earplugs. Now, picture this: cpap mask, medical tape over my mouth, my Zeo headband, earplugs and eye mask. Seriously?
The thing they don’t tell you about earplugs is, if you lie on your side in half-sleep and feel something burrowing into your ear, you wake up. Because that could be spiders or earwigs or ticks, oh my! The other thing they don’t tell you is, earplugs HURT. They make your ears ache. They make your head ache. Especially if you have the wee-est ears in the world, like I do. If I were watching, say, Led Zeppelin play a concert, I might not notice the ache. Or, at least, it would certainly be worth it. But, lying in the lightening room, feeling exhausted and traumatized, it began to feel like someone had filled my eardrums with ever-expanding putty. And, although I couldn’t hear the robin anymore, I was suddenly enveloped in my OWN noise. My bed was a sensory deprivation chamber. My gurgling stomach sounded as if it were amplified through a long pipe into my brain. My heart was like the drug smuggling airport scene in Midnight Express. The hum of the cpap and my metronomical breathing were like Dave in the spacesuit trying to change to manual controls, while Hal sings, “Daisy, Daaiseeeey…”
Just as I convinced myself this was soothing, womb-like and I could deal with the earplug pressure, my 105lb Rhodesian ridgeback jumped off the bed, went downstairs and rang the bell hanging on the front door ~ his signal to go out. And then he rang it again. And again. I knew, however, this was a call for breakfast. He didn’t need to go out. The cheeky bugger was trying to get me downstairs to feed him. I ripped the tape off my mouth and yelled, “GO TO BED!” It worked for about half an hour and then I heard my husband getting ready for work. I called it quits at 8:30am.
I did not embellish any of this and, although, I’m really trying to make it into a comedy, it devastated me. After all these weeks of horrible sleep, to be roused permanently from such a nice slumber after 5 hours, feels so unfair. When I came downstairs, my husband told me he was getting up at 6:30am tomorrow morning (a Sunday) because of the clocks going forward. I burst into tears.
I’ll try valerian for a week or two, but, if it doesn’t help, I’m moving on to brain chemical-altering, heavy-duty drugs. End of story. I thought I could will my sleep better, but this is beyond my abilities. I hope I haven’t caused permanent damage.
New Beginnings
68 weeks sick.
45 weeks gluten-free.
40 weeks unemployed.
26 weeks on autoimmune diet + supplements.
23 weeks housebound.
This is my update.
For those of you just joining us, six months ago, my doctor put me on a anti-inflammatory diet that is supposedly good for autoimmune conditions.
These are the rules:
- No gluten (that is, no pasta, no muffins, no pizza)
- No grains (that is, no gluten-free bread or baked products, no rice, no popcorn, no tortillas)
- No dairy (that is, no yogurt, no ice cream, no cheese)
- No legumes (that is, no peanut butter, no hummus, no beans)
- No nightshades (that is, no red pasta sauce, no mashed spuds, no hot sauce)
- No sugar (yeah, right)
- Only lean meats and fish
I have been horrifically strict (as in, I won’t eat soup with corn starch in it or the soy yogurts made with rice starch). However, I have allowed myself oats (must have granola for breakfast) and, although I’ll stay away from, say, foie gras, I am eating beef. A lot. Sugar, also, is difficult. I’ve cut down drastically, but I still eat dark chocolate every day and sweeten my granola with honey.
I feel no different from this diet. Besides the fact that I have no joy in food anymore. In my other life, I would have had fun researching recipes and learning to cook with new and interesting ingredients, but I don’t have the energy. I couldn’t stand in the kitchen long enough to cook a meal. So we rely on a lot of salads, stews, roast chicken with veg etc. And I eat more nuts than anyone on the planet and buckets of fruit. Ick.
The other day my husband had a long chat with one of his old friends. Afterwards, he said, “I caught him up on how you are doing.” I scoffed: “So, you told him nothing’s changed?” He said, “Well, no… you’re worse.”
It took me back a bit… Yes, of course I am worse. I can’t do half what I could last summer ~ no dog park, no grocery shopping, no lunches with friends. I am only driving myself to places that are very close, I never have more than one phone conversation a day, I can’t walk as well as I could six months ago ~ my body has degenerated from so little movement. I’m in MUCH more pain ~ my spine, hips and muscles. The fibromyalgia-type pain only started in earnest after I left my job. I look worse. The lack of sun and fresh air have taken a toll on me. My sleep problems and emotional turmoil have aged me.
BUT, although I’m worse, I’m better, too. My sickly, shaky, evil nightly sweats are gone (except for the odd night) and that completely changes my life. I will never be able to adequately put into words what those malarial nights were like. Sleeping with the enemy. Also, my “nightly flu” has gotten better ~ the sudden increase in chills, aches, sore throat at around 6pm. There were so many evenings I would say, Okay, this time I’m really coming down with something. I still have those symptoms, but they are muted. The headaches eased up. Did you watch Mind The Abyss? After watching it, my husband said, “When the headaches came on…the man’s head held in his hands… that’s what struck me the most.” The severity of my headaches and the accompanying noise and light sensitivity altered my life more than perhaps any other symptom. The constant chills are gone… The ice in my bones, shallow breathing, tense muscles, uncontrollable shivers… This time last year, I COULD. NOT. GET. WARM. I rarely progress to the point of “bricked” anymore: where I hit a wall and I am grey, ashen, can’t move, can’t speak, weeping in a ball on the couch. My sleep is still a major concern ~ constant waking and endless adjusting from pain ~ but I get 8+ hours a night and that is a huge step forward. And, finally, my outlook is better. Don’t get me wrong, I mourn A LOT and feel alone and desperately sad (mostly when my symptoms increase), but, I laugh now and there is a semblance of acceptance. There was a point in time when I couldn’t smile. I tried, but they just weren’t there. It wasn’t depression, it was from pain. Pain sucks smiles away. And I had the knowledge that below the pain was the flu and below that was exhaustion and fear and a life I wouldn’t recognise.
I’m trying to forget about 70% of what I know about ME/CFS and follow my heart. So, yesterday, I threw the ball for the dogs and scooped the poop in the yard. Afterwards, I had a much harder time moving, but I thought, “Maybe it’s not a CRASH. Maybe it’s just because your muscles aren’t used to it. Maybe you’ll be okay. Tomorrow is a new beginning.” You never know what someone is going to say that will stick in your brain and help you through the days. My friend Z. suggested I think of new beginnings. Obviously this makes sense in the grand scheme of this new alien life. It’ll never be what it was and I have to eventually look at it as a new beginning and stop fighting it… But, I’m not quite there yet. I’m not ready to embrace this mortal coil as a new, permanent realty. However, every day can hold hope as a new beginning. Every hour. It’s kept me going through a bad week. After this bath, maybe I’ll feel better, maybe a new beginning. After this meditation, a new beginning. This moment, a new beginning.
Today I am grateful for all that is better and new hope for the future.
Jinx
I jinxed myself, as usual. As soon as I finished the last post, the vice on my head started to tighten… And tighten… Tighter than it has been in many weeks. It’s a doozy. So, I took a shower – in case an EMT has to see me – ate something – to soften the absorption – and I’m about to take a whopping 325mg of acetaminophen. DUH duh dduuuuuhhhhh….. Think good thoughts for me, everyone.




