Tag Archives: energy

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…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.

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“39 year old woman, looks like shit and in apparent hell.”

Today I read a post on a CFS forum titled “disappointed reaction from sister-in-law” which had me fired up in a way that is a rarity since I left my job. This woman had told her family she would not be able to attend a baptism on December 23rd and also be able to come over on Christmas Day to participate in all the festivities. Her sister-in-law asked, “Why? Are you sick?” and then, seemingly fed up with the CFS/ME/FM “excuse”, the sister-in-law decided to educate her on what the disease is and why she should be able to attend family functions. Why? Are you sick? My pulse is racing just typing that. It is utterly reprehensible that this disease is called chronic fatigue syndrome and that it is characterized by “post-exertional malaise” and that all medical tests are relatively normal and that we don’t look as sick as we are. It’s such an unbearable injustice to add this insult to injury.

It’s not just friends and family. I have given up talking to doctors after I realise they have zeroed in on my type-A personality or obsessive tendencies or the sleep problems I’ve had my whole life or the fear of getting sicker. It happens every time. I had a visit with a new sleep doctor today and I talked about my night sweats and then about how I’ve always been a light sleeper. I joked (kinda) that, even in sleep, I wanted to be sure I heard an intruder. Her next questions were about sexual abuse and anxiety and I realised I’d said too much. As a patient, you can’t really be 100% honest – because they’re DOCTORS, their job is to see what you don’t. However, I think the majority of the time patients are pretty self-aware. I had to steer her back. No, no, no, these night sweats aren’t from anxiety – they’re from death taking over my insides so all the fluid in my body is squeezed out of my pores over the course of eight hours. You can’t imagine how much fluid there is in a body. And my sleep problems now can’t be equated to my lifelong insomnia and lack of deep sleep – this year, I am tortured, thrashing, contorting in pain, in muscle spasms, constantly waking, never peaceful. Luckily, in the last three or four moths, I’ve gotten a handle on the sickly night sweats – by realising they were caused by over-exertion and took everything down to the “housebound” notch. But, my point was, I realised there wasn’t much point in recounting my story to this new doctor. She wouldn’t be able to shed any new light and, in fact, it was the opposite: it was a long appointment, it was difficult to tell her everything from the beginning, it was disheartening that she didn’t really say anything about my sleep – which is why I was there – and, in the end, she said she was leaving the practice at the end of the week. Wow. More wasted time, wasted energy, wasted money. But I had to go for insurance to cover my cpap machine. That’s the deal. That’s the racket.

I got off track: Why? Are you sick?

I used to say that I thought everyone in the world should work one week in a restaurant. That it should be mandatory in high school or college for each student to put in a minimum of 50 hours, rotating positions so that you have some concept of what it is all about. I usually would declare this after some moron degraded me or tried to pinch my ass or ordered something without looking at me, without saying please or thank you. And I mean ordered it – as in, gave me an order. I was an actor, so I’d smile through it. But really what I was thinking in my head was, you won’t get to me because I’m smarter than you, I make more money than you and I guarantee I’m happier than you. It worked for a long time. Until, one day, there was no amount of money that would have made me give one more performance.

Fast forward ten years and now I think everyone should spend one week in my house. Or the house of anyone with M.E. Actually, I wish we could all spend a week in a thousand different homes in a hundred different countries, expanding our understanding, knowledge and compassion…. But, this is what I know right now: this house, this disease. I wish the doctors and the friends and the employers and that lady’s sister-in-law could all live with this for a week. And I don’t even mean live with M.E. – I just mean live in the house with the person with M.E.

Let me narrate to you how I feel in the morning, the inventory I take of my body, the pain in my bones as I get up and dress. Let me talk to you about my food choices – what will cause me the least distress, what will help the nausea, what will be the least likely to aggravate the IBS, what I can make (or ask my husband to make) with no grains, dairy, gluten, legumes, or eggs. I will show you how I decide whether I have the energy to shower (involves standing up) or do laundry (involves going downstairs and leaning over) or empty the dish washer (reaching down and reaching up multiple times) or walk in the yard (involves boots, coat, cold, taking steps). I will tell you all day, every day how badly my head hurts and how much my hands ache and how broken my back is. You’ll be able to watch me grimace every time a dog barks and close my eyes when I walk into a room that doesn’t have a dimmer switch and massage my neck endlessly, have trouble getting out of my chair, walk like I’m crippled, cover my ears when the ads come on the tv, begging you to mute it. I can explain how every day I weigh the pros and cons of medications: Will this take care of the pain or give me vicious bounce-back headaches? Is it worth taking so much of this knowing the liver problems it can cause? Will I be able to tolerate the nausea, dizziness and insomnia of this long enough to let the good kick in? Will this help me sleep but not give me a hangover? Will this help my muscles enough that it justifies the bowel intolerance? Is this helping enough to justify the $60 price tag? Is this worth trying even though it suppresses my immune system? You’ll see how carefully I go to different areas of the house, how every trip is calculated: never, ever go from one room to another without taking something that needs to go there, too. No wasted movements. You’ll see how I plan phone calls on my calendar: no more than one a day and none on the days that I have doctor appointments. No wasted energy. And you’ll see how often I have to lie down in the dark and how early I go to bed and how quiet I’ve become. It’s very understandable why doctors would think I am depressed – my hair isn’t brushed, make up doesn’t exist in my life anymore, I have no energy for chipperness and no need to form connections by chit chatting. No wasted words.

Worse than doctors seeing the wrong thing, though, is doctors not seeing anything. I read my records from an appointment earlier this year – in the very sick, dark days – the notes said, “39 year old woman, well groomed and in no apparent distress.” All the fight just drained down my body, out of my feet and into the earth. I felt defeated and limp. I get it, this is how they describe their patients… certain terminology is used… But, if I wasn’t in apparent distress, then… Well, then, he needs to come live with me for a week. Maybe I’ll make him dinner and then we’ll walk around the block and have a lengthy, animated discussion …and then he can watch what happens the next day. He’ll be able to see how I curl up in a ball weeping from pain, unable to speak, unable to move, unable to eat. And maybe he’ll think, Distress is too small of a word. In fact, malaise doesn’t really cut it – and neither does fatigue. How about chronic persecution syndrome? How about post-exertional perdition?

Are we sick? Yes. We’d rather not have to plan every hour and foresee every hurdle. We’d rather not isolate ourselves and lose contact with those we love. We’d rather be at every baptism and birthday and Christmas celebration and dinner date. In fact, given the chance, I’d guess that people with ME/CFS as a whole, would be the life of every party. We’d be the ones dancing, singing, eating and drinking until the wee hours of the morning. Wasting as much energy and as many movements and words as possible. 39 year old woman, dressed to kill and apparently having a ball.

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…and I will hug him and pet him and squeeze him…

I don’t think I have the energy to write much because I have big plans today like making a few phone calls and washing my cpap. I’m also determined to do my stretches today, which I haven’t been able to do for ages. I had 19 very bad days. The worst day of all was two days ago. My brother, a pilot, was in town overnight and I wasn’t able to see him. I haven’t seen him since August, 2011 ~ two months before I got sick. I kept thinking, I manage to get to a doctor appointment and talk for 45 minutes, but I’m not able to meet my brother for breakfast? But he has another layover here in two weeks, so I get a second chance.

Then, right after that horrible day, miraculously, yesterday I felt better. Not great, but better. I wish I could adequately describe the difference between a bad-but-not-horrible day and a good-but-not-great day. They are worlds apart. Instead of getting out of a chair like a crippled, arthritic 90 year old, I get up like a typical 39 year old who is in pain. Instead of walking up the stairs to the bathroom delicately, with difficulty, concentrating on each baby step and clutching at the walls, I walk up slowly, heavily, but without much thought. Instead of watching tv as still as a statue, unable to smile, needing to block my ears at loud noises, but having a hard time holding my hands up to my head, I can laugh and operate the remote control. Instead of unhappily eating an apple or drinking an Ensure to pad my stomach for the pills I have to take, I am hungry and look forward to eating a (really boring) meal.

I looked in the mirror yesterday and there was pink in my cheeks, but not in a feverish way. I had been ashen for weeks ~ grey skin, dull yellow eyes ~ and overnight it looked like I had taken a walk outside. It feels like the Monster, who has been crushing you in both hands for weeks on end, had to scratch his nose or something and, with one of his hands not pressing in on you, you are suddenly able to take a breath… to have a conversation without sweating and shaking… you are able to pet your dogs and hug your husband and make granola. And the whole time you are thinking, thank you thank you thank you. That is when I can see a tiny seed of hope. I have to remember in the despairing, dark days of pain, that there will be another day in the future when the Monster has to let go to answer the phone or smoke a cigarette or whatever… and you will be able to move a little easier.

monster

I saw the Good Doctor on Monday and she is adamant that I stay away from dairy, gluten and grains still. I am also back on all the same supplements as before, plus berberine to combat yeast and magnesium to help pain and sleep (note to those that may not know: magnesium glycinate is the form that should not mess with your bowels. Other forms can help you poop or cause diarrhea, depending on how much you take). I’m thrilled. After months of stagnation, I have forward momentum. I told her, “I don’t care what we do, but I have to do something. If you don’t want me back on the supplements yet, I’m going to start the Chinese herbs.” After much research online into ME/CFS experts’ protocols, I was bolstered to see many of the same supplements that the Good Doc has me on (CoQ10, fish oil, acetyl-L-carntine etc.). I started them again on Monday and I wonder if they contributed to the uptick on Thursday. Placebo effect doesn’t really work with this disease in me, as much as I wish it would. It might make me feel a little lighter or more hopeful, but the placebo effect cannot cause the difference between practically bedbound and able to walk and talk. It’s more likely the fact that I slept fairly well Wednesday night ~ 8.5 hours. My plan is to start Cymbalta on Monday or whenever the initial nausea from the supplements wears off… so I can deal with the initial nausea of the Cymbalta. Joy.

Here’s my daily regimen:

 daily pills

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The Finale! Liebster Award Part 3 ~ Answering Questions

I think I will finally have the energy to finish fulfilling the criteria for the Liebster Award by answering Reva’s questions:

What are you proudest of?

This is a hard one. Being proud is so personal. It’s all about you and something you’ve accomplished.  I guess I could be proud of my children ~ if I had any. Or proud of my garden if I had created one. Or proud of how I’ve given back to the community or something, but I haven’t. I am proud that I get up every day and don’t give up. I am proud that I am self-aware and honest in my relationships. I am proud that I have dropped insecurities, achieved forgiveness and notice gratitude each day.

What is your favourite colour?

Red. No, green! Ahhhhh… (that’s me being thrown off the bridge)

What inspires you to blog?

The constant, incessant, noisy, obsessive, clamouring, chattering, clattering thoughts in my brain. I have hundreds of unfinished posts, essays, poems, articles and novels bouncing around up there with not enough energy to tame them, groom them, edit them and write them. Also, I really want to keep my family and friends informed about how I’m doing since I’m not usually up for emails and phone calls.

What three things would you grab if your house was burning down?

Well, my two dogs and my husband, of course.

Can you resist chocolate?

No, it’s actually quite bad. My doctor wanted me to stop eating sugar for my elimination diet and, once she saw my yeast levels, reiterated how important this was. But I didn’t do it. I did give up ice cream (except for Almond Bites) and Cadbury’s and Toberlone and Junior Mints… But I still have chocolate every single day, only now it is the Theo bars with 70% cocao. It’s actually quite amazing how quickly your body can change its cravings.

Where did you spend your favourite holiday?

This is a really hard question. There were so many lovely holidays when I was younger and so many in recent years with my whole family together, but I always think back to a trip to Lanzarote with my husband in 2000. We’d left freezing Ireland in January, had a lovely visit with his family in freezing England, been tourists in freezing Scotland and, the day before flying back to America, we walked past one of those discount package-holiday places and they had some cheap two-week all-inclusive deal to the Canary Islands leaving the next day. What made it so wonderful was, we decided there and then, standing on the street, to go to the sun. We sent messages to our jobs, changed our flights (we were flying stand-by, so no charge) and the next day we were in this completely foreign, beautiful volcanic landscape off the coast of Africa with nothing but winter clothes. The food was crappy and neither of us particularly likes sand, so we spent our days reading books in the sun on the balcony. Relaxing and reading book after book. Playing hilarious bingo each night in the hotel bar. No mobile phones, no responsibilities, no illnesses, no allergies, no pills, no fear.

Finish this sentence: One day I will…

…walk on the beach with my dogs again.
…have the energy to cook.
…sleep well.
…eat bread and cheese again.
…be in one place with all my siblings.
…have the energy to get dressed, put on make up, talk, laugh and socialise.
…not be in pain.

If you could be anyone for a day, who would you be?

A dancer. I’d love to be able to twirl and leap and bend and shimmy with abandon ~ and with no repercussions.

Tea or coffee?

Tea. Lyons with milk and sugar. Or, these days, with soy creamer and stevia.

What is one of your oldest memories?

Putting on Kiss concerts with my brothers when we lived in Illinois in… 1978?

What is your favourite movie?

Oh, I can’t answer that! There are so many!! I love Ridley Scott, David Lynch, Mike Leigh, Scorsese, Tarantino, Coen Brothers, Cameron Crowe, Danny Boyle, Coppola, Kubrik, Almodovar, Hitchcock, Fincher, Wilder, Rob Reiner, John Hughes. I could go on… Because it is almost Christmas, I will give a special shout-out to It’s a Wonderful Life, which I watch every single year, no matter what.