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My chronic illness journey has spanned over thirteen months, the loss of roughly a million responsibilities and about a dozen different blood tests. Â The worst number for me, however, is the amount of doctors and specialists I have had to seen within this time. Â Iâve honestly lost count, but itâs got to be about 15. Â Some of these people I sought out. Â Some I fought to see. Â One I had to leave behind, because he not only failed to help me get better, he actually made me worse.
I waited until January 2015 to see a doctor about my failing health. Â Iâm stubborn and I donât like going to see doctors. Â I tried to convince myself whatever was going on would just go away if I ignored it for long enough. Â (Spoiler alert: it didnât.) Â So when I finally went to see my PCP I was pretty far gone. Â It hurt to sit, stand, lay down. Â I needed help getting dressed and climbing stairs. Â I needed to bring Matt into every appointment just so that someone with a full brain would remember what was said for later. Â Not only what was said but what was happening in my day to day life. Â My symptoms had become a fuzzy mess in my mind and I had whole periods where I had to fight with my own brain to even get a simple phrase out of my mouth. Â I forgot words often. Â The pain was too bad for me to sleep through, and the fatigue and brain fog wouldnât allow me to do much more than listen to audiobooks. Â All of the blood tests–lyme, thyroid, viral–came back negative.
âDepression,â my doctor diagnosed.
Full disclosure: I have had active, clinical depression since I was 11 years old. Â It is a condition I have felt a lot of shame towards for most of my life. Â For a long time it ruled my life, but I couldnât even admit to myself it was real. Â I did not start regular talk therapy until college. Â I refused to even consider medication until two years ago. Â I have had deep, dark downward spirals that made me nearly impossible to be around.
My doctor knew all of this. Â (Or at least, I had told him all of this.) Â So when he thought my symptoms pointed to depression I felt…confused. Â I went to a therapist weekly. Â I was taking meds. Â I honestly had never felt more control of myself. Â It was a liberating, thrilling feeling. Â I just needed to get healthy so I could enjoy it.
âDepression,â my doctor repeated after I said all of this.
None of my symptoms reflected anything I had ever experienced in my decade and a half of experience with my depression. Â Even at my lowest, at my most damaged, I had never felt like this.
âDepression,â my doctor said again. Â âIt must just be manifesting differently.â
Feeling more confused than ever, I talked to my therapist about it. Â She had been treating me for almost a year at that point, once a week. Â She was very familiar with my condition, with my new symptoms and with my variety of issues.
âYouâre doing better emotionally than I have ever seen you,â she told me. Â âThis isnât how depression works at all.â
So I told my doctor what she had said.
âItâs depression,â he insisted. Â âShe and I will just have to agree to disagree.â
So I went back to my therapist. Â I was exhausted, in pain and trying to figure out how this was all in my head. Â There had been multiple instances where Matt had had to physically carry me up the stairs I was so weak. Â Desperate for something I asked my therapist to think and research, to see if any mental illness could manifest itself this way.
âNot like this,â she said. Â âNot thatâs been recorded in an emotionally stable person like you.â
She offered to talk to my doctor, if he wanted to hear it from her. Â I went back and asked if we could get an MRI (I have a history of MS in my family).
âItâs depression, thereâs no point.â Â He did not want to talk to my therapist.
We had to push and push and push before he would order the MRI. Â It showed I had a healthy, 25 year-old brain.
âSee?â the doctor said. Â âDepression.â
I was in desperate pain, and I was starting to grow depressed. Â Depression is a common side effect of a bedridden, constantly aching person. Â But when I pointed this out my doctor just said my emotional dip proved his thoughts correct.
We began to do our own research. Â I started acupuncture and it helped a lot–suddenly I was back to a more normal brain function, and able to move better. Â My doctor dismissed this. Â We had to talk him into considering alternate ideas. Â When he finally gave me the fibromyalgia pressure point test, he was openly surprised that I was sore in so many of the right spots.
âMaybe you have fibromyalgia,â he hedged. Â âI still think itâs depression.â Â He referred us to a rheumatologist. Â Finally.
This all took months. Â Months of pain, of frustration, of feeling like I must be crazy. Â A professional, a person with so much education, a person who had to know better than we did kept telling me that everything I was experiencing was all in my head. Â When upping my meds made no difference, his opinion did not change. Â When my therapist disagreed, his opinion did not change. Â I felt more insane and unbalanced than I ever have in my life. Â My lived experiences, my daily life, wasnât supposed to be possible. Â According to the expert. Â I had to be crazy.
In his defense, my PCP never used the word âcrazyâ. Â He just told me I was wrong about everything I was experiencing, about my own experiences with depression.
No one else thought it was depression. Â Not a single specialist or expert we visited even brought it up. Â We changed doctors and my new PCP is wonderful. Â But I got a lot worse before I got better. Â This past week my rheumatologist finally officially gave me the fibromyalgia diagnosis. Â Stress is a known trigger for fibromyalgia flares, and this man gave me the worst case of stress I have ever had, at a point where I felt more ill than I ever have.
My experiences are shockingly common. Â Many, many people with fibromyalgia are told by their doctors that everything they are experiencing is all in their head. Â (tup-headed is a great article about it.) Â And then thereâs the reality of living with an invisible illness–I had no idea how to tell people I was sick. Â I didnât look sick, except to people who knew me very very well. Â For over a year I had no formal diagnosis. Â I felt a lot of guilt about feeling too tired, too pained to participate in all of the things I was committed to. Â I had to drop out of teaching adult education, teaching sunday school, helping to lead two workshops and a whole host of other responsibilities. Â I cut back and then ultimately lost my job because supervisors were frustrated that I wasnât getting better. Â Friends I had once seen weekly I did not speak to for months. Â Matt spent all of his free time taking care of me, and I couldnât do chores or cook or help out with anything like I used to. Â I felt a lot of guilt around all of this.
This week is apparently Invisible Illness Awareness Week. Â People with invisible illnesses–be they a mental illness like depression or a physical illness like fibromyalgia–struggle to explain them to others. Â People without invisible illnesses struggle to understand. Â (I feel like I know this better than many because I have lived on both sides.) Â Iâve written some about my own illnesses over time because I think talking about them helps to take away the stigmas attached–that mentally ill people are âcrazyâ, that illnesses you canât see donât exist or arenât that bad. Â I answer any and all questions about my experiences to anyone who asks (and to a few who donât) because for me, openness is important. Â I want to normalize my experiences. Â I hope that, in some small way, doing so might help other people.
I’ve been pretty sick over the past year. Â (You probably already know that.) Â Being nearly bedridden and full of pain for a good chunk of the year ended up meaning watching a lot of movies and television on my phone and laptop to distract myself and pass the time. Â I watched a lot of great things, but after a while the whole thing became pretty depressing. Â The inability to accomplish anything was driving me insane. Â I felt like I was wasting my life and I had no choice.
Enter documentaries. Â I have always enjoyed them and have a long history of seeking them out, but they became my saving grace during a period where I could do very little on my own. Â Watching a documentary made me feel like I wasÂ learning something. Â It made me interested in the world again, motivating me to do lots of extra research and discover new things and new ideas. Â And I discovered some pretty fantastic films.
Below are the top ten documentaries I have watched over 2015. Â A couple I rewatched but most were brand new to me, which was so exciting. Â Most of them are available on various streaming sites. Â I hope that you enjoy them as much as I did.
- Dear Zachary (Netflix): Do not read anything about this film before you watch it. Â The way it unfolds is best if you are in the dark about what’s coming. Â I have seen it maybe three times over the past decade and it remains one of my absolute favorites. Â Fair warning though: you will cry.
- The Imposter (Netflix): This film I have gone out of my way to introduce to people because it is so incredibly put together it doesn’tÂ feel like a documentary. Â It feels like it must be a work of fiction. Â This is another to go into without knowing much. Â It’s insanely good.
- Man on Wire (Amazon Prime): A documentary about Philippe Petite’s tightrope walk between the two towers of the World Trade Center in 1974, I finished the film in awe. Â It is truly beautiful and well worth seeing, particularly if you plan on watchingÂ The Walk, the film based on it starring Joseph Gordon-Levitt later this year. Â (It also won the Oscar the year it came out, 2008.)
- Project NimÂ (HBO Go): Did you know that in the 1970’s scientists all over the country were giving families baby chimps to raise as if they were human? Â ProjectÂ Nim is about the most famous of those chimps and his journey from beloved child to research object to test subject. Â I wouldn’t shut up about this film for weeks after I watched it.
- The Invisible War (Netflix): A film about rape in the U.S. Military and how difficult it is for victims to get anything but more pain out of the system after reporting. Â This is a hard one to watch but so important, especially if you’re a woman considering military service. Â (I’m not, but I found it no less relevant to my life.)
- Chef’s Table and Jiro Dreams of Sushi (Netflix): I’m cheating, putting these together, but they’re both directed by the same guy (David Gelb) and both deal with the same subject: the people who create incredible food and why they do it. Â Jiro is a film about one of the best sushi chefs in the world and what is so unique about him. Â Chef’s Table is a series of six shorter documentaries and is relevant to anyone who eats or creates. Â If you are a creative person you will learn a lot, even if you don’t cook for fun.
- Blackfish (Netflix): If you haven’t seen it, you have to. Â About orcas and captivity’s cruel effect on them. Â Important.
- Into the Abyss (Netflix):Â This is a film by acclaimed documentary director Werner Herzog, and it is both incredibly complex and deeply moving. Â Following a young man on death row in the weeks before his execution the film does not ask whether he is guilty or innocent, but rather what the point of his execution is overall. Â Another one I finished in awe.
- The Jinx (HBO Go): LikeÂ Blackfish, HBO’s docuseriesÂ The Jinx has transcended the traditional documentary viewership into the mainstream and with good reason. Â The six episodes are unbelievably well put together and make for a thrilling binge-watch.
- Capturing the Friedmans: Â Unfortunately this Oscar-nominated documentary is not available for streaming anywhere, but it is nonetheless completely worth checking out of the library. Â I knew nothing about it before I watched (other than the fact that it was directed by Andrew Jarecki, who also madeÂ The Jinx) and it was all the better for it. Â A true crime doc that fascinates at every turn.
I honestly could keep going (I had to cut at least two while making the list) but these are the films I watched over and over again this year so they’re the ones that win. Â (Okay, so I didn’t rewatch The Invisible War, but its quality and power overcame that requirement.) Â Enjoy!
When I was a senior in high school my show chorus director told us that he wanted to go in a different direction for our big concert. âNo black and white,â he said. Â âI want you to dress like you live in SoHo and got dressed in the dark, without a mirror.â I grinned. Â I immediately knew what I was going to wear. Â When I later asked him if he had been thinking of my personal aesthetic, Mr. Morisette admitted that he had been going for that âcoolâ look. Â When I told my fellow alto about the admission I was laughing, but she was frustrated. âIf he had just said âdress like Patsyâ I would have known what he meant!â she complained. Â Iâm not sure she knew what SoHo was. (For the record Iâm pretty sure I wore some sort of mix of patterns to that concert. Â I know I wore my favorite shirt at the time, a tank top Iâd bought in boston that looked like it was covered in ginormous sprinkles.) My fashion sense is the second biggest thing I get asked about on a regular basis. Â The biggest is my cooking, which Iâve already written about somewhat on this blog. Â But Iâve avoided writing about fashion. Â Iâm not sure why. Â Partly because it sort of feels like bragging, like talking about myself too much. Â Partly because it feels so personal. I didnât always love clothes. Â In fact, I used to hate them. Â I felt it was my job as a modern woman (see: 13 year old) to eschew all the artifacts of femininity: skirts, dresses, makeup, clothes with shape. Â If I wear makeup, I thought, itâs because I donât like my own face enough. Â Paying attention to current fashion trends meant I wasnât paying attention to more important things. Â I was a serious adult. Â (Maybe I was 14 at this point.) Â I cared about serious things. But I didnât like myself. Â My too-big, shapeless shirts, my lots and lots of black (I was clearly lying to myself about not paying attention to clothes), the sweats picked out due to their âpracticalityâ…they all were a big, flashing neon sign that said STAY AWAY. Â Only not as pretty. Â Not putting makeup on my face didnât mean I liked it. Â Throwing clothes on my body without caring if they fit didnât mean I was proud of myself. Â I just told myself that was what it meant. I blame a lot of my interest in fashion on my time living in Germany, but really I think that living in Germany happened to happen at the same time that I started growing up. Â And I grew up in a place with a lot of amazing food and a lot of amazing clothes. Â That certainly had an effect. Â But mostly I realized that I didnât like hating myself anymore, and even more I didnât like hating other people. Â You see, I didnât just believe that me putting on makeup meant I hated my face. Â I believed that of everyone who put on makeup, who picked out nice clothes, who cared how they looked. Â I labeled a huge amount of people as vacuous, self-centered and stupid all without knowing them. Â Literally based on their appearance alone. Â That made it pretty difficult to make friends, and it made it difficult to be happy. Â When you are going around judging everyone for their use of mascara you have little self left to appreciate whatâs good. Â Youâre just kind of a miserable person whose eyes hurt from being narrowed at the world all the time. Â
Clothes–and, slowly, makeup–have become a creative outlet for me. Â When Iâve been too burnt out and busy from college to write or create, I could always put together a kick-ass outfit. Â When Iâm too sick to leave the house I can swipe on some wild lipstick. Â I learned that the amount of confidence it takes to go to high school dressed entirely in taupe, or in a shirt covered in what look like sprinkles, makes a person a lot more fun to be around. Â Itâs not something that happens all at once. Â But I feel like I can actually say that it has made me a more creative and even a better person.
Ask anyone whoâs gone clothes shopping with me: Iâm both the worst and the best shopping date. Â The worst because if I actually want to shop for myself I will comb endlessly though all the racks, try everything on, hedge and hem and haw and eventually–after hours of this–leave with maybe two or three pieces. Â The best because I push the poor sucker along with me into trying on things theyâd never consider, encourage them to think about themselves in new contexts and endlessly find new things that they will like in the racks. Â The worst because I almost never say that no, it isnât worth buying, especially at that price.
About a month ago I decided to try and go to church. Â I had not been for many weeks, I missed it, Matt had to go anyway and I was feeling mostly up to it. Â Even so, I waited until the very last minute to make the decision. Â I was feeling apprehensive and a bit nervous the whole ride there. Â I forgot to eat breakfast.
Going to an event like a morning service is difficult for me nowadays for many reasons. Â It involves a lot of talking with wonderful people who I care about, which is great but also tiring. Â I don’t like those people to see how weak or in pain I really am so I push myself without really thinking about it, forcing myself to remain standing for these conversations to prevent them from being awkward. Â It also takes a great deal of focus and concentration to follow along with small talk, something I have in short supply these days and which makes me feel like I’ve gone for a run after it’s gone. Â I don’t get to see these people often, and I want to give them every bit of focus I can muster. Â And when the service starts, I want to focus on that, too. Â I want to stand and sing for the hymns and follow along with the prayers. Â But on this day a month ago I realized pretty quickly that if I was to make it through the service standing up was not going to be an option. Â Halfway through, singing wasn’t an option either, because I couldn’t muster the energy to force the words out. Â I mouthed along because I didn’t want to bring attention to myself. Â But I couldn’t do anything about communion.
When the time came for our aisle to stand and join in, I found I could not get out of my chair on my own. Â Matt half-led, half-carried me up the center aisle and then back. Â I was humiliated. Â I felt like an idiot. Â The whole car ride home I felt like crying. Â Bad enough that I couldn’t stand and sing with everyone else, but I should at least be able to walk on my own!
Matt looked at me like I was crazy. Â (In a nice way.) Â He pointed out how important it was to me to be open about my illness with others. Â Didn’t that also mean allowing them to see what it was really like?
I huffed. Â I puffed. Â I accused him of calling me a hypocrite. Â I was mad that he was probably right. Â I was mad at myself for being so proud about being open, but really only wanting to be openÂ on my terms. Â I want to be open about what’s happening to me in a way that makes me look strong. Â I don’t want to look helpless and weak. Â I want to show off my sense of humor and cleverness. Â I don’t want to clue anyone in on the nights crying or the way I feel I’m slowly losing control over my life–at least, not until I can think of a cute way of putting them into words.
Which brings me to the past three weeks, and the thing I don’t know exactly how to put into words: losing my job. Â Something that is confusing and humiliating and frustrating and infuriating and freeing all at once. Â It’s something that I seem far more comfortable talking about in person than I am writing about it. Â Maybe it’s because I don’t want to burn bridges. Â Maybe it’s because writing it down in a public way makes it real.
I know that I’m not comfortable writing the details. Â But here’s what I can write: About three weeks ago I was given an offer I had to refuse. Â (Okay, okay, that was fun to write.) Â Last week I gave my two weeks’ notice. Â Tomorrow is my last day of work.
If you know me, you know I love my job. Â I love working with the kids, finding just the right book for just the right reader, matching up that desperate parent with the series that will change their child’s life. Â I believe in what I do and I’m really, really good at it. Â And I’m really, really going to miss it.
But I’m also looking forward to what’s next. Â Tentatively, apprehensively. Â For the first time in my life, I’m looking at a time of true rest. Â I’m embarking on what I’m calling my Summer of No Projects. Â This summer I will not be looking for another job. Â I will not be writing a new book. Â I won’t be deliberately cultivating new skills, or training to run a 5k, or painting a room. Â Instead I am going to rest. Â I am going to develop routines and focus on my health. Â I am going to breathe and I am going to see where I am called next.
I am terrified.
I donât think of myself as a particularly funny person. Â I have always enjoyed making people laugh but that has just been a side effect of my love of telling stories. Â Laughter is like any other reaction that informs a storyteller that the listener is engaged. Â I enjoy laughter for the same reason I enjoyed receiving rejection letters back when I was submitting my writing for publication–it meant my work was received, and considered, and an opinion had been formed. Â I guess I just like being heard.
Sickness as a greater idea is in no way humorous. Â It is a moustache-twisting, fairy tale thief of energy, time, money and peace. Â (Now that I think about this, that image is kind of funny.) Â There is no sane person who will sit down and argue that you should laugh about illness. Â If someone tries I highly recommend the punch-them-in-the-face method of argument. Â It is quick, efficient and only barely exceeds the amount of time and energy worth spending on such a person.
I do think, however, that being sick as a day-to-day experience can be side-splitting. Â This is a very foreign idea to those who have not spend a great deal of time around the sick, but it was something I was familiar with long before this past year. Â Iâve had bedridden friends manage to set rabbits loose on recovery centers and draw mustaches on nursesâ framed portraits. Â And I have my own experiences.
I want to tell you three stories of silly sickness. Â It might not be funny to you at all. Â This might be because Iâm just not telling it right, or else because it just isnât very funny. Â But to me this is part of the being sick experience and itâs very funny to me.
The Stubborn Wedding:
Two years ago we were invited to a spectacular wedding. Â One thing about me you have to know is that I positively adore weddings: I love the schmalz, the tears, the music, the food, the dancing, and on and on. Â I love picking out gifts and cards for them. Â I love stressing over what to wear. Â I love cooing over the dresses and the centerpieces. Â I just am a sucker for weddings, and this one was tops. Â It was in a gorgeous manor with great food and spectacular views, lovely personality and great stories. Â We were put up in the nicest bed and breakfast I have ever seen. Â The weather was perfect. Â Only one thing was wrong: I was desperately ill. Â At the time I was dealing with the fallout from having MRSA, the main thing of which was having absolutely no immune system. Â I had a 102 degree fever and white spots on my burning throat.
And darn it if I did not go to–and enjoy–every part of that wedding. Â Swaying slightly, I chatted with newfound family members at the rehearsal dinner bonfire and cried at the ceremony. Â I laughed at the speeches and argued with cousins. Â I even danced! Â And after it all I went back to the bed and breakfast and shook violently from fever in the very fancy jacuzzi.
(This might seem more crazy than funny, but to me it is hilarious. Â I also feel that I must add I was not contagious at all–merely very ill.)
This is the story of the aforementioned MRSA. Â I had some weird blisters on my nose and a slight fever the day of a church retreat and so managed to get into the doctor before heading down. Â He thought it was probably shingles but wasnât sure and so gave some antibiotics and antivirals just in case. Â As youâve probably noticed I tend to be a stubborn fool and so insisted on going to the retreat despite the goings on, over my more sensible husbandâs objections. Â I was feeling ill and feverish by the evening but thought the meds would probably help and felt proud of myself for going to bed early.
Unfortunately I woke up at 6am with my face so swollen my eyes would barely open and my forehead very red and spongy. Â Somewhere in this world is photographic proof that for a weekend in 2013 I looked like a half-Klingon without the need of any prosthetics. Â Had my fever been lower and my condition been less contagious (at the emergency room they pumped me full of steroids and gave me the sort of meds generally reserved for warding off malaria) I would have fit in at any convention anywhere, given my war cry was up to snuff.
The Ball Game:
And now a story from the relative present. Â A few months ago we were visiting my in-laws for the weekend, largely to free my husband up from having to do everything while I just lay there and watched. Â (Basically how things go nowaday.) Â This turned out to not go as planned when I had a terrible weak spell and found myself utterly unable to make it up the stairs to the bedroom on my own, collapsing halfway up.
Now Tucker, my in-lawsâ labradoodle, and I have a very special relationship. Â Since he was a puppy he has wiggled with joy whenever he sees me and to this day gets extra zoomies when Iâm around. Â So when he zoomed up the stairs, squeezing past my collapsed self, then running back down to me I assumed that he was trying to help. Â We all–my husband who had run to assist me, my in-laws who were not far behind–smiled and laughed at his puppy-ish attempts at aid.
But we laughed a lot harder when he ran back up to the top, grabbed a ball and dropped it down the steps to my captive form. Â He wasnât trying to help at all–he was trying to play.
Matt picked me up and carried me the rest of the way up the stairs and into bed, and poor Tucker had to wait until another, better time for catch-and-throw.
Sick is an amazing word. Â It holds so much meaning. Â It can contain anything from a scratchy throat to a deadly, inescapably affliction. Â I have been sick many times in my life. Â So have you. Â Chicken pox, summer colds, flu season, 24-hour stomach bug and that darn vomit monster that just seems to be going around–these are things that most of us try on and then shrug off like itchy sweaters our parents made us model for the cameras, if only to prove to Grandma and Grandpa that we really did receive them. Â We hate them, uncomfortable and ugly as they are, but they are soon enough discarded and forgotten.
For a very long time I viewed illness as something that could be put off until it was convenient, or at least unavoidable. Â In college my modus operandi was to work nonstop until whatever swine-avian-big bird-H1N1-r2d2-superbug overtook me and I lay immobile in my dorm bed, shaking for two or three days until I could force myself up and about to start the whole thing all over again. Â (Once a roommate thought I was actually dead because I actually had not moved for 36 hours, but was too frightened to approach and confirm. Â She called her mother, who was a nurse, and was properly chastened for potentially leaving a dying teenager to, well, die.)
Iâm not very good at being taken care of when Iâm sick. Â The first time my now-husband even tried to turn off the lights in my sickroom I insisted I could do it. Â I could, too. Â For years I made my own tea, secured my own nightquil, choked down my own advil and held back my own hair. Â Or I didnât. Â That was okay, too. Â I could clean up the mess when I was feeling better. Â (I donât know if you know this, but Iâm a little stubborn.) Â It has taken me years to even feel comfortable asking for popsicles when I have white spots on my burning throat, much less an extra blanket when Iâm chilly or a glass of water when Iâm tired.
About six or seven months ago my definition of sick changed. Â Forcibly. Â It started gradually–I was tired more, my brain worked a little more slowly, sleep seemed to come a little harder–and I did not think very much of it at first because I was very busy at the time, the kind of busy where you look at your calendar and realized you have to go forward a few months before you find a free weekend. Â I thought I was reasonably a little stressed. Â I was doing too much. Â Eventually Iâd be able to cut some things out, but Iâd tough it out for the present. Â But it got worse, and not in the normal ways. Â Normal, menial tasks like putting away dishes or cutting shapes out of construction paper (Iâm a childrenâs librarian) required regular breaks for rest. Â I got frustrated by simple ideas and concepts halfway through. Â My normally quick, sharp mind was sluggish and could not keep up with conversations. Â Forget not being able to multitask–I couldnât follow along with most books when I tried to read, or listen to the news on the radio. Â I felt like I was struggling all the time. Â I realized I was sick. Â Stubbornly, two months into my decline, I insisted on still hosting Thanksgiving. Â I stuffed the turkey the way I wanted, I made the gravy, and I had to sit the rest of the time. Â The centerpieces on the table–simple vases full of cranberries and clementines–took me hours and near-tears to figure out. Â My ordinary hawkish attention to detail, my perfectionism that resulted in me enjoying days like this so much (no, really) ended up tearing my exhausted self apart.
And then, all at once it got scary. Â The gradual decline turned into a sudden avalanche into pain so terrible I was crying and unable to sleep. Â My husband had to help me sit up, stand up, get dressed and undressed. Â A few times he had to carry me up the stairs when my legs simply gave out. Â Over the counter meds did nothing at all; I lay as still as I could, whimpering, feeling guilty for keeping Matt up beside me. Â While I had until this point managed to keep going to work fairly regularly through sheer force of will, I had to cut down my hours to two days a week with a day of rest inbetween. Â I quit teaching, a side job I loved, altogether. Â I stopped going to church because I could not handle the energy required on top of the work hours and the doctorâs appointments.
Ah! Â The doctorâs appointments. Â This is already getting long, so Iâll talk about those later. Â Bahahahaha!
Eventually, through many different methods, I slowly sort of improved. Â I say âsort ofâ because…well…yeah, Iâm not âmeâ yet. Â At my worst Matt estimates I was at about 20% brain function, a blithering, breathing corpse who could sort of repeat the things you said back at you. Â Now I hover between 70-80% of where I was before this all started. Â Not as sharp, or quick, or aware as I was before. Â But I can feel shades of me again. Â I wake up and can feel interested in doing, sometimes. Â Occasionally I feel up to putting away dishes, or laundry. Â I actually shifted out my winter clothes for summer ones all by myself, and by my own initiative. Â I had to rest afterwards for a few hours but I did it. Â It felt awesome.
Thatâs the biggest change: the resting. Â I canât plan ahead anymore. Â This new sick is one that runs everything. Â Itâs a bully. Â I have to make all of my decisions at the last minute: can I go to work? Â To the grocery store? Â To your party? Â To your wedding?
âI want to,â I can say. Â âIâll try.â
âWeâll see if I allow it,â the bully snarls.
That sounds overdramatic, but when your body dictates if you can get out of bed in the morning, every morning, itâs hard not to feel separate from it. Â Thatâs one thing Iâm working on: still being a unit, one with myself. Â All zen and shit. Â The other thing Iâm working on is being open: with me, with you, with my doctors, with the future. Â Hence this (very long) post. Â Iâm going to try to keep writing. Â Maybe youâll try to keep reading. Â Iâm not going to edit–that would be impossible for me right now. Â And my writing may come few and far between. Â But itâs important, I think, for folks with invisible illnesses to be open if they feel comfortable being so. Â There is so much stigma out there, and I feel responsible to help end it.
My brain is kind of shutting off now (youâve probably noticed its decline as Iâve gone on), so Iâm going to thank you all for reading this and finish up. Â Thank you. Â Stay tuned.
I’ve been in a cooking rut for about the last six months. Â Partly it is because I was terribly ill, spending an average of a week or so in bed each month and struggling to do much during the times I wasn’t shivering with fever. Â Partly it is because I stopped learning new things about food. Â I abandoned my food blogs, cooking shows and many many cookbooks. Â I just had no energy for them anymore.
Now, I love food. Â I love food more than most people seem to. Â It used to be a source of some embarrassment for me, until I decided that that was dumb and it was far more fun to just love what I love and look at you funny if you criticize me for it.
Enter red curry paste.
So I have a confession to make:
I do not have a television.
Okay, so it’s not a confession if everyone already knows. Â And I’m not too secretive about the fact that I do not own a TV. Â I don’t want one. Â I had one once and gave it away within a few months. Â The only times I ever miss it are when I want to pull out my PS2 to play Kingdom Hearts, and even then I feel foolish for not just going out and buying the right cables to hook my game system up to Matt’s giant flat screen monitor. Â For some reason I’ve never gotten around to doing that.
But all the same, I hateÂ saying those words. Â “Oh, we don’t have a television.” Â It seems impossible to say any variation of the sentence without sounding smarmy, proud, judgmental. Â And I’m really not! Â I don’t own a television because I can’t afford cable, and I see no point in having it gather dust in the closet. Â I still consume plenty of media. Â Thanks to Netflix, Hulu and our local library I am currently following three shows as they air (How I Met Your Mother, Agents of SHIELD and Almost Human)Â and three more that are all finished airing (The X-Files, Breaking Bad and Leverage). Â I listen to NPR pretty much every time we’re in the car, or the kitchen, or relaxing in the evening. Â I watch aÂ lot of movies when I have the time. Â I consume media, and I really enjoy it. Â I also really miss the Food Network. Â If we could afford cable I would probably get it just for that.
And that darn Food Network, which refuses for some reason to even allow its shows to stream on Netflix, is what brings me to gravitate towards a television whenever I am in a hotel. Â I used to fall asleep with the TV on in college a lot and I have fond nostalgic feelings toward it. Â In November I was staying at a hotel three out of four weekends. Â Guess what I did a lot of?
On the evening of Thursday, June 13th I posted these words to my facebook timeline: “The kitten of fear and anxiety has curled up and taken permanent residence in my chest. Â Occasionally it stretches and claws it’s way up my throat.” Â It was a bizarre thing to post, but I was feeling a bizarre kind of fear. Â Most of the time my nerves take the form of violent trembling, light-headedness and rapid breathing I have to fight to slow. Â Not Thursday evening. Â Not the entirety of last week, actually. Â Instead I was unable to sleep, the pain in my chest a distraction only from my nausea. Â I’ve been to the New England UMC Annual Conference almost every year since I was twelve years old but I had never felt like this before.