Tag Archives: sweats

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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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Diet… Day 51. Wash-Out… Day 12.

Last night I drempt that I had been out socialising with friends and I started to crash. I couldn’t get back home, so I was trying to get my husband to find me a hotel room… I had to lie down… I was going to collapse… please help me, it’s dark and wet and where is everyone?… I just need a bed for a few hours… I don’t want to die… And then rats attacked me. They were fat and wet and squeaking and hanging off of me everywhere… I woke up panting while I was being eaten by the rats. I was scared shitless and didn’t know where I was and my sheets were wet from sweat.

I have, however, been feeling a little stronger the last few days. Not strong, but stronger. My headache has eased up enough to be manageable with epsom salt baths, the tens unit and icy hot spray on my neck. The pain and stiffness in my back doesn’t have me in tears and the exhaustion seems to be controlled. Just a normal ME/CFS exhaustion, not a crippling, slurring, crawling-up-the-stairs exhaustion. I have a new symptom driving me batty: constant pins and needles in my right foot for the last 3 days. It moved into my calf last night, but doesn’t seem to be there today. I have had this before in my hands and I have the Raynaud’s issues in my feet, but I can’t remember this maddening constant tingling before.

My days have become very predictable. I am up at around 8:30am, after about 7 to 7.5 hours sleep. I have GREEN tea now and, for breakfast, homemade granola with almond milk and a smoothie (today was pear, pineapple, strawberry smoothie with flax seed, coconut milk and walnuts) while I do some “work” on the computer (pay bills and curse Comcast and Verizon, see how our budget is going, answer emails, apply for disability but get overwhelmed and stop, try to make an Amazon Fresh shopping list because I can’t go grocery shopping and decide it’s too much energy and too expensive, research ME treatments and start to bang my head off the wall, research MRI stories and wish I had the option of Valium, write in my blog etc.). Then I warm up my muscles with a bath or the hot tub, do some stretches and then a meditation, which I always try to turn into a nap. Then lunch (usually a salad or soup or tuna and I’m currently addicted to Terra Chips) and maybe some house chores if I’m able. Maybe some reading or some more computer time. Another meditation (rest before and after activity, always. Resting is considered only lying down with eyes closed, awake, meditating or sleeping, says Dr. Bested). Walk around the house, if I’m able and then the evening with my husband, having dinner (whatever is leftover or whatever he makes because I’m virtually never able to stand for long in the evening without hitting that pain and exhaustion wall), watching a movie ~ whatever I can manage. Another meditation if I’m not going to bed early. Most of the time I’m in bed at 7 or 8pm, reading/researching. Some of the time I can stay upright until 9 or 10pm. I usually don’t turn off the lights until after 11pm.

My sister-in-law sent me a Stretching for Beginners DVD and usually anything anyone buys for me is too advanced because I’m more decrepit than they realised, but this DVD is good! I have done the sitting, standing and lying stretches ~ one on each day that I’m up for it. So far, it has felt good and I’m so proud of me. And I’m ecstatic that I haven’t pulled a muscle doing it. Maybe I’m finally learning. I walked five laps around my house yesterday. I’ve been wearing a pedometer this week and have taken between 1,700 and 2,200 steps each day. I realise this is not a lot — my dog park visits alone were over 2,000 steps — but, those numbers are including 400 to 500 steps walking laps around my house. There are many, many days when I’m not able to do that and my pedometer would say more like 1,000 steps at the end of the day, so I’m happy. I want so desperately to double, triple those steps. I want to go outside and run as hard as I can for as long as I can. On top of everything else I have had to endure, the patience needed to deal with this disease is mind-blowing. Every time I have to go upstairs or downstairs, I think, “What can I take with me?” so I don’t waste any trip. Every movement is about conservation, every day is planned, every physical feeling analysed to ascertain whether it was caused by too much of some activity or emotion. Damn, I shouldn’t have done laundry… I knew I shouldn’t have chopped those vegetables… If only I hadn’t lost my temper… From now on, I must sit down when I dry my hair…

My mood is much better, which is probably why I’m feeling stronger and my symptoms seem a bit more manageable. I think my Mother and brother being here helped give me strength. Plus, I got to Skype with both of my best friends in the last week and that is like a pain killer. Literally ~ people can be pain killers. It’s amazing.

Something else helped nudge me from defeat into fight-mode: I read that there are multiple studies putting the average age of death of ME/CFS patients in the late 50s. That’s about 30 years too early. On the one hand, I’m very grateful that I might have 20 more years to live and, on the other hand, I’m devastated that I might only have 20 more years to live. I’m not emotional over it. It just caused me to think, Alright, time to get over this now because I’m not going to die in my 50s, dammit. Obviously, I’m not just going to “get over it”, but it made the fight come out a little. I can’t just accept that this is permanent because I don’t want to be one of those statistics. So, time to heal. Seriously.

My back is killing me, I have to stop typing now. So, a moment of gratitude: I am grateful every single day that I am not worse off. I am grateful for walking and talking and typing. I am grateful for eating and drinking and showering myself. I am grateful I was never in a motor vehicle accident, never got fungal meningitis from a steroid injection, never got shot or stabbed or beaten up. Some people are much more… oh, ever so much more… oh, muchly much-much more unlucky than you!

It’s a troublesome world. All the people who’re in it
are troubled with troubles almost every minute.
You ought to be thankful, a whole heaping lot,
for the places and people you’re lucky you’re not!

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How My Illness Began … Part 1

[Although I’ve already posted an excerpt from my diary about those months at the beginning of my illness, I wanted to tell the whole story. It will have to be in increments because it is exhausting physically and emotionally to relive those days. But, I don’t want to forget them. Also, I realise that this was the beginning of what stopped my life in its tracks, but perhaps not the beginning of ME, so I’ll eventually have to write a prequel to this Part 1.]

I was sitting at our dining table at the beginning of November 2011, writing Christmas cards when I was hit with a wave of nausea, chills and exhaustion. Whoa, I’ve been at this too long, I thought. My husband was on the couch watching television, so I curled up on the recliner and fell asleep immediately. When I woke up an hour or so later, I knew something was very wrong. I was shuddering with chills, my teeth were chattering, I felt infected or infested.You have to come to bed, something’s wrong and I don’t think I’ll be able to make it back downstairs if I need you, I told my husband. I crawled to bed, he made me a hot water bottle. I was dressed, wrapped in a blanket, under the duvet with a hot water bottle, curled in a ball, shivering ~ practically convulsing ~ with chills. I tried for about half an hour to cover my ears, I thought if I moved my hand out from under the blankets, shifted my position in any way, I might die. I have found that severe chills are as debilitating as severe vertigo and severe pain. I fell asleep for a brief amount of time and, when I woke up again, I was drenched. There was sweat coming out of every pore in my body. And not just beads of sweat ~ rivulets of sweat. My bed was wet, I could have wrung out the sheets. Sweat ran down my legs, down my chest, pooled in my belly button, my back was slick. My ears were wet, my hair was wet, my knees were wet. I was flabbergasted. Never, ever had I experienced anything like this. Such an immediate and systemic response to a pathogen. I could only hope that this would be it and be thankful that the chills and sickness hadn’t lasted days. If the fever had already arrived and broken, then maybe this would be short-lived. I spent the rest of the night plunging in and out of fever dreams, shaking as violently as I had with the chills. In the morning, it subsided. I was spent, exhausted, traumatised, but I thought it was over. I was able to continue work that week. Besides being a little unnerved, weak and tired, I was able to get on with life. However, the chill/sweats cycle happened again a few weeks later… and a few weeks later. I finally went to my doctor. When this is happening, I told her, I feel like I’m dying. I know that sounds melodramatic, but, honestly, when I’m in the grips of it, it feels like there is absolutely no way I could manage going to work that week ~ maybe even month. It feels like I should be hospitalised. I asked her to test me for malaria because that was the only thing I could find in my research that had such debilitating, but cyclical symptoms.

As the end of the year approached, I got worse. I was pushing myself very hard at work, trying to wrap everything up so that I could take vacation days when my Mom visited. The episodes were occurring more frequently and leaving me progressively more sick and weak. I started working some days from home, dragging myself to the computer for 8 hours, over the course of the entire day, crawling into bed periodically when I couldn’t be upright anymore. Two days after Christmas, I was told the malaria test was positive, but they wanted to retest because I hadn’t traveled to a malaria country in over 7 years. My Mother arrived on December 30th. I was doing okay, I picked her up at the airport. That night, as we were sitting at the dining table eating soup, I was hit out of the blue with incredible vertigo. It was like being on a tilt-a-whirl, I gripped the edge of the table and looked at my husband, wide-eyed. Oh shit shit shit, WHAT IS GOING ON? Never, before or after, have I felt the room spinning so violently. I went straight to bed. I don’t really remember the next 5 days. I remembering waking up, hearing my Mother and husband downstairs watching the ball drop in Times Square. I lay in bed, nauseous, dizzy, chilled and sweating. I couldn’t eat, I clung to the walls walking to the bathroom, I just kept thinking, I don’t want to die. In the past, I had had food poisoning that could have killed me, gone into anaphylactic shock that should have killed me, passed out and had vital signs so low the EMTs’ field notes say they couldn’t get a blood pressure reading, but nothing made me feel like I was truly going to die like this did. I wrote goodbye letters to my family. I wrote down all of our passwords and account information for my husband, I wrote instructions for my funeral. I did all this with a pencil, lying on my side, under the covers, sure I didn’t have much time. At some point, in the middle of some night, my husband took me to the hospital to get my blood drawn because parasites are more evident in the middle an episode. But, from the beginning of the chills to the time they actually got around to taking my blood, 6 hours had passed, so I knew it was a wasted trip.
This took me a month to write. Stay tuned for Part 2.
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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.