Tag Archives: chills

by

January 1st, 2013

2012 was the worst year of my life. I realise that is not a very festive and celebratory way to start a new year’s post, but it’s the truth. Having said that, however, I know that if this past year has been my worst, I have been extremely fortunate and had a very blessed life.

On January 1st 2012, I wrote an eight page-long goodbye letter to my husband which included all the details of our online accounts, passwords, paperwork etc., things with which I have always dealt. It also laid out my thoughts about my funeral and asked him to make sure to use my savings to pay for my family and E. to travel from Ireland, if needed. Really morbid stuff.

Thank you for your love, kindness, caretaking, honesty, patience… You gave me everything I’ve ever wanted in a friend, a partner, a husband. I am so lucky…

I had never experienced anything like what I was going through and I didn’t think I’d come through it. At the time, I had been diagnosed with malaria. Never did it occur to me, if I did survive, that I’d still be sick a year later. Never did it occur to me that I might be sick for years and years to come. I work every minute of every day to get better and that is what I will continue to do. Every day, in so many ways, I try to help myself heal:

I wake up slowly, gather my strength, set my intention for the day. I open my blinds so moisture doesn’t collect on the window panes, I turn on my air purifier so it can work its unseen magic during the day. I wash my mouth guard, cpap mask and machine parts ~ yes, every day. I brush my teeth sitting down. I wash my face, pick off the leftover adhesive (from the tape I put over my mouth at night) and apply a calendula cream that helps my skin heal. I put my dry eye drops in and use my antihistamine nasal spray. I make tea with stevia and soy creamer (no sugar, splenda or dairy allowed anymore) and take my first supplements of the day with filtered water (the top rated (cheap) filter by Consumer Reports). I check the temperature and the humidity in the house. My body has no concept of comfortable anymore. I could be feverish for no reason or freezing in the heat. Or sweating face, but icy toes.

I work on the computer for a bit, sitting in front of a light box. Breakfast is a smoothie with flax, berries, and walnuts or homemade granola with fruit and almond milk. I seem to have completely conquered my hypoglycemia by switching from rice milk to almond milk and adding fiber to my tea. Afternoon beverage is decaf green tea, per the Good Doc’s orders. I do any chores I can manage. I try to meditate three times a day. This is forced rest… or preemptive rest. Regardless of how I feel, at the very least, I lie down twice each day for an hour, usually at 1pm and 6pm. I have a room ~ not my bedroom ~ where I have peace, privacy, a small futon, a wedge pillow, blanket, eye mask, headphones and CDs. These meditations are the only reason I can get through the day. If I don’t recharge, flat on my back with my eyes closed, I will start to deteriorate: get shaky, slow down cognitively, become achy, stiff and develop a headache.

yoga room

In between 2pm and 4pm, if I’m up to it, I do laps around my house with the dogs. I’m currently not up for more than 4 times around ~ about 400 steps. I wear a pedometer all day, every day.  I am diligent about keeping my core temperature up. For those few minutes outside, I put on my heated vest, hat, scarf, gloves, Uggs. I never want to go back to the debilitating chills of this time last year. If I feel I have some strength, I do every little thing possible to “exercise” so my muscles don’t decondition any more. I squeeze the squeeky dog ball in both hands. I slowly and carefully scoop dog poop. I focus as many miles away as possible ~ to the skyline or horizon ~ since I spend so long indoors only looking six feet ahead. I breathe deeply ~ consciously ~ to get my dose of outside air. I notice everything: planes tracing lines in the sky… the sounds of our neighbours… plants, birds, trees that I never paid much attention to before. And I am grateful for every step, always silently thanking the universe for keeping me on my feet, for allowing me to have the health I still have.

last leaf

Even if I can barely move, I try to stretch my muscles as often as possible. I soak in an Epsom salt bath (2 cups) for no more than 30 minutes (I am told any more than that and the badness leeches back into your muscles) and then I do gentle floor stretches, as well as my neck traction. I dry my hair sitting down. My lunches and dinners are predictable, boring and really pretty disgusting after months and months on end. No grains of any kind besides oats, no eggs, dairy, legumes, potatoes, tomatoes or cod. No msg, obviously, and I’m desperately trying to cut down on sugar. I add turmeric to virtually everything I eat. If I had the energy to cook, I would be making the most creative and tasty dishes, but, as it is, I rely on my husband and quick snacks: apples, nuts etc. Basically, I eat enough to take my supplements. I drink two tablespoons of tart cherry juice with dinner every night and usually drink ginger tea last thing before bed. I don’t watch tv later than 9:30pm, I practice good sleep hygiene and I never get to sleep later than 11:30pm.

My year felt like one third survival, one third denial, and one third a carefully constructed balancing act. A tightrope walk with no end in sight and any time you fall off, you don’t go back to the beginning ~ you go back much further than where you started. So, you don’t know how far the rope goes in front of you or behind you. Now: Turn that tightrope so it’s vertical. You aren’t walking forward, you’re clinging on with your hands, trying to climb upwards into the clouds… an abyss below you. Just one hand over the other. Don’t look up, don’t look down. This moment, this breath.

Holding onto a rope

2012 Wrap Up:

January: Saw endocrinologist; Mom visited.
February: Saw infectious disease doctor; started seeing a therapist; started meditating.
March: Saw rheumatologist, saw allergist, saw gastroenterologist; started low fat diet; changed birth control pills; eliminated pain killers.
April: Saw naturopath; started gluten-free and dairy-free diet; my friends’ sweet baby A. was born ~ the highlight of this year.
May: Saw second infectious disease doctor; Mom visited; stopped working and left career.
June: Saw optometrist; got CT scan.
July: By best friend E. visited; my sister got a new puppy (my new nephew); dear friend of the family’s, M.B., died.
August: Started seeing the Good Doctor; saw chronic fatigue “specialist”; started automimmune elimination diet.
September: Started acupuncture; saw sports medicine doctor; had sleep study done; Dad visited; became housebound.
October: Got brain and cervical spine MRI, Mom visited; brother T. visited.
November: Saw obgyn; started using cpap.
December: Brother A. visited; sister and J. visited for Christmas; dear old friend, D.H., died far too young.

This was my year. I know there is a big world out there with a lot bigger things going on, but this was my year. Doctors, tests, symptoms, setbacks, births, deaths, revelations about myself, revelations about our bodies, grief, joy, fear and more grief. And I know: it could have been much, much worse. What I see when I look at this is: my brothers, sister, mother, father and best friends all came to visit me. They journeyed across the city, country or world to my house to support me. In doing so, they healed me. I am very lucky. I am very blessed. With this kind of support, I can be the rock again. I will feel like I can weather any storm again. Maybe that’s what the new year will bring. I will notice everything, consider anything, expect something, but fear nothing. Welcome, 2013. You’re going to look very different from last year.

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

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.
by

Appointments, tests, symptoms

I’m still dizzy. I’ve been dizzy for about 5 or 6 days now. Just unbalanced — things look odd, the world feels like it is slowly drifting to one side. This is different from the acute vertigo attack I had last year at the beginning of this illness and this is different than the “white-out” I’ve experienced my whole life when I stand up because I have low blood pressure. Last night, I woke up with stabbing pains in my stomach. I stayed awake for two hours, deep breathing. I don’t know if it was gas or what. I don’t care — I just want to track it. Other than that, my symptoms are: horrible headache, terrible back spams (mostly lower), my hands ache, neck pain, low-grade fever (99.7 when I took my temperature yesterday), and gritty eyes. But these are more like stone eyes or boulder eyes. Both eyes have what I used to call styes, but, upon deeper Internet exploration, may be something else… They’re not red or inflamed, they are small blisters on the inside lids. My top lip is swollen with some underground cystic acne nastiness. It looks like I was punched in the mouth. I look great, wish I could go out and socialize. But, seriously, I just miss feeling pretty. I miss getting dressed at all, let alone dressed UP. I miss not being in slippers.. a great pair of boots, a belt, jewelry … I miss brushing my hair and putting on mascara. I miss I miss I miss…

My thyroid hormone test results were fine. My liver and cholesterol panels looked fine. My bloodwork looked fine.

My first appointment of the week was acupuncture. He concentrated on harmonizing my shao yang symptoms which, according to Chinese medicine, are the alternating chills and fever I get daily.That night, after acupuncture, my daily headache became excruciating. It woke me up multiple times in the night. I thought it might have increased in severity from the acupuncture, which could have been true, but after the lingering brain cramps this morning, I actually think it might be from the Norco. I realise this is nuts seeing as I only took a quarter, but I can’t take Vicodin because of the headaches they give me and they’re the same ingredients.

I had my follow up with the Good Doctor on Tuesday. She said I seemed very tired and beat down. She thought it wasn’t a bad idea to take a holiday from the supplements if I felt overwhelmed and thought they might be contributing to the headache. But, she said I had to give my brain a holiday, too ~ stop worrying, planning, researching. Easier said than done. She didn’t want me to go off of the supplement and the birth control pill at the same time, which is fine because it’s not possible to go off the pill until I have a decent pain killer option. She had not received the results from the stool sample even though it’s been three weeks. She said once again, I never have these sort of troubles with labs! Stay tuned for the scathing essay I will write one day about medical mistakes. She said narcotics can absolutely give you a headache when you take them and give you a headache when they wear off. All in all, it was a pretty wasted trip. I think she took one look at my face and decided to concentrate on consoling me. Although, she did say she thought I should consider a brain MRI since my headaches are increasing in severity and waking me up at night. I think this disease is an autoimmune problem and/or a deep-seated pathogen that is causing neurological problems on top of all the others. I don’t think I have something that will show up on an MRI.

I also had a therapy appointment that day, too, and, since my chauffeur was also my spouse, I invited him into the session. It was good — for no other reason than they got to meet each other. I cried the whole time, explaining my guilt that he was doing so much and my grief that our lives had disappeared and my regret that we never did X/Y/Z before I got sick. Interestingly and to my relief, my therapist said that everything she has heard from me in the last few weeks is depressive thinking and is brand new. She said this whole year I have had anxiety over my sickness, leaving my career, what the future holds etc. — but that I had been a “trooper”. The depression of the last month is new and situational. I needed to hear that. It helps me say, get your shit together, girl, this isn’t you! When you are consumed by grief, it’s hard to remember what normal feels like. Even normal in sickness.

Today, I talked with an advocate for the M.E. Network with whom my aunt put me in touch (even my extended family has rallied to help me — I am very blessed). She is a nurse and had M.E. and recovered. She is adamantly against psychiatric drugs and she gave me her reasons. I agree with her and it was good to hear a healthcare worker not pushing the meds and talking about how compromised things have become because of pharmaceutical companies and their drug-pushing reps. However, getting a good pain killer and possibly an anti-anxiety or anti-depressant was my next course of action and now I feel hopeless again. Part of me just thought, if I give in and dope myself up, life would feel better even if it wasn’t better. She cautioned that M.E./C.F.S. patients’ brains are already compromised by the disease, so psychiatric drugs can make things much worse. I feel like I’m back to square one. Truly, my Rx is rest, short walks, baths, meditation and time…. while feeling like I’m dying for who knows how long? People have gone through worse. People are going through worse.

I’m grateful I’m not going through worse. This took me three days to write.

by

let’s just take it slow in this home on ice

I’ve been cold my whole life and I I’ve never made any great effort to help my situation. Even now, at the age of 39, I have to remind myself that there are options and I’m a big girl – I can buy thicker socks and not keep wearing the ones I got from the dollar store 15 years ago. Like the aforementioned heated vest for the motorbike that my husband bought me. I told him I was going to return it — I probably wouldn’t wear it often enough to justify the cost. I not only wore it every day during the winter, I wore it in the summer, I wore it to the dog park, I wore it going out to eat, I wore it in the house, watching tv. I never, ever would have thought of purchasing something like that. I like thin, tight material, tshirts, layering. I’m short, so never wanted to bulk myself up. There’s a photo somewhere of me skiing as a teenager. I am wearing black jeans and a pretty light-weight jacket. I basically look like I could have been walking down the street in, say, the autumn. All the other we-ski-every-year types are wearing the puffy snow pants and fancy hats and goggles. I went to college in Wisconsin, but can’t remember wearing any shoes other than Vans and Adidas. No snow boots? Seriously? If I weren’t sick, always had warm feet, had endless money and didn’t have a skeleton to worry about, I would wear very high heels every day. I love being 5’5″. I love strutting and sashaying.

My best friend and I used to get dressed for school under the covers while still in bed. We’d dash across the room to grab any article of clothing that wasn’t within reach and dive back under the duvet, artfully swapping our sleepwear for our school clothes while lying down. There was never enough hot water in anyone’s house in Ireland for multiple people to bathe and you certainly wouldn’t luxuriate under a scalding shower for 15 minutes to get your core temperature up. We were both diagnosed with Raynaud’s, too. My Mother used to say “Che gelida manina!” whenever she took my hand. To this day, I relate cold hands with jellyfish because my childhood brain latched on to the “geli-” part.

I’ll never forget going to Edinburgh with my husband in the infancy of our relationship. I never made an effort to get good socks or invest in warm, practical boots or a proper winter coat or hat or gloves… I dressed the same way in winter and summer, I just took off a few layers. Walking around Edinburgh castle, my toes were bloodless greyish-white blocks of ice. We stopped every so often so he could put my feet under his shirt on his stomach, rubbing them gently in the hopes that they wouldn’t fall off. It was useless. Nothing can really bring back the blood except hot water. And then the blood pools in my feet until they’re hot and swollen and fit to explode.

A few years ago, I bought Uggs, not caring anymore that I’m 5 feet tall and they have no heel. I started wearing wooly tights under my jeans, remembering that’s what we used to do when we were kids. Then I bought a hat with fuzzy ear flaps because, if Frances McDormand could pull it off, so could I.

20120926-223428.jpg
And last week, I got my first heated blanket. Well, heated mattress pad. I only turn the heat on on one side so I can move to different areas of the bed depending on whether I am in fever or chill mode. My Mother has always had an electric blanket, I’m not sure why it took me so long to decide to get one. For Christmas, I want one of these:

20120926-151816.jpg

I am grateful for hot water and my bath tub.

Title Credit