Living with CFS/ME/SEID – Journaling

A new tweep asked me some really great questions today about living with CFS/ME/SEID and it reminded me that I’ve been meaning to write a blogpost on this topic for a really long time. The worst thing about having a chronic, disabling illness like CFS/ME/SEID is that because there is so little data on it, and it’s not even taught in most medical schools, doctors rarely are very good resources for us spoonies once we’ve been diagnosed. So each of us is forced to figure out a way to live with this new reality. Today I’m going to write about the most important tool for me: journaling.

When you are living with a disabling illness, it’s kind of annoying to add work to your day but journaling ended up being the best tool I had for many reasons. First, it provided data for me to go over symptoms and the efficacy of interventions with my doctor (rather than me relying on my memory which, because of cog fog, wasn’t always super reliable). Second, it gave me hard evidence in my disability case of just how impaired my functionality was. Third, it helped me to really figure out how to avoid crashes. One of the defining characteristics of CFS/ME/SEID is called post-exertional fatigue which basically means that the recovery time for an activity is out of proportion to the expected or healthy cost of said activity. I call it a crash. So if I were to go into town and go shopping for a few hours, that’s a very energy intensive thing to do and it might take me a few days to recover from that. And the recovery time is brutal because during a crash you are functioning at a below sick-normal level. Think of having CFS/ME/SEID as being physically bankrupt. When you’re poor, everything costs money. Existence is expensive. Sleep? You’re paying rent for someplace to do that. Eat? You have to pay for the food. Same thing with CFS/ME/SEID except the cost is in something we’ve taken to calling spoons (for this post The Spoon Theory). So if you are living paycheck to paycheck and it takes a couple of days for your paycheck to clear but you have rent/utilities due & no food, sometimes you gamble & write a check, hoping to float it. Sometimes it works out in your favor, sometimes all the checks come in at once and you pay crazy overdraft fees that put you behind for weeks or even months. Well, same thing with being chronically ill. The cost of brushing your teeth, washing your hair, eating – all stuff that “normal” people take for granted – is measured in a very limited number of spoons. So you know when your family wants you to come to do a Thanksgiving dinner, it’s very hard for them to wrap their head around what they are asking of you because whereas they may feel the consequences of Thanksgiving for a day (in terms of energy expended, not calories eaten), you may feel the consequences for several days or even weeks. The holiday season with its weeks of activities between Thanksgiving and New Year’s usually took me months to recover from. And during that several month period I was at subpar functionality FOR ME. So my daily functional norm is half or even a third of what my pre-illness daily functional norm was (and even at my healthiest I was always at 80% of my friends’ functionality). But my crash functional norm is EVEN LOWER THAN THAT. Which is not even livable. Not to mention that because of my poor immune system, I would usually get some sort of infection during my crash (because, of course) that most people shake off in a week at most but for me it would drag on for several weeks. But enough about the experience and more about how the journal helped me to take control of my life. After a couple of years of being at the mercy of my crashes, I bought a page a day calendar and every day I noted the following things:

  1. Functional Capacity Measurement Any time I did anything involving standing up, sitting up in an unsupported position (rather than relying on cushions & pillows to prop me up) or moving my body, I used an egg timer & I timed out how long it took me (and also, how long I could do it for). At my worst, it was really tough for me to stand for 5 m. And the maximum I could move or stand in a day was about 2 minutes. This takes into account: preparing meals, sitting upright to eat said meals, brushing my teeth, washing my hair, even going to the bathroom. This gave me real data on how much I *could* move in a day. It was a GIANT pain in the ass to track this but I have to say that it really helped me to convince my doctors that my situation was serious.
  2. Level of Disability Measurement I created a scale of 1-10 by which I could rate a day by how disabled I felt on that day. I wrote values for each number in the front of my calendar and at the end of each day I would assess my day based on the criteria I’d established. So for me a 1 would be my very worst days when I could not get out of bed, where I was crawling to the toilet, where even holding myself upright on the toilet was so challenging because of my muscle weakness that I considered adult diapers. A 10 was my peak functionality. So that would be the times in my life when I was healthy and I could work full-time, keep up with my errands & chores AND have a social life without having crashes.
  3. Symptoms All of them. Before I would go to see a doctor, I’d look back through my journal and write a list of talking points from most to least important based on instance & severity of symptoms. I learned the hard way that it’s really important to talk to your doctor about as many of the things as possible because first of all your symptom may actually lead to a diagnosis of something that can be fixed. Secondly, it goes into your medical record which is *really* important if you ever have to deal with a disability case. So, yeah, can’t keep your food down? Talk about it. Never-ending Diarrhea? Talk about it. Blood in your stool? You get the picture. In the first couple of years of my illness, I collected diagnoses like some people collect stamps. Every couple of months there’d be a new thing. It wasn’t until my doctors were satisfied that these diagnoses were not responsible for my disability (because I was not responding to treatment by returning to normal function) that they finally, reluctantly, diagnosed me with CFS. This process took years and would have been much shorter had someone told me, on day one, just to journal the f*ck out of everything.
  4. What I ate/what I did You know how everyone seems to believe that diet and exercise will cure you? Well my life is an example of how that is simply not true. Once I realized that I had a chronic, not a temporary, disability, I started trying to address it with so-called “lifestyle factors” (aka diet & exercise). I would try a new diet for a minimum of 3 months and journal symptoms. I tried them all, in a wide variety of combinations. Macrobiotic, vegan, macrobiotic vegan, vegetarian, gluten-free, paleo/ketogenic, raw organic… These are just *some* of the diets I tried. Now granted diet & exercise ARE a factor in my quality of life and the way I learned which things seemed to be most impactful was by journaling what I was eating and comparing it to my symptoms over a several weeks long period. It’s not a perfect or scientific system, because of course a causal relationship cannot be established and sometimes you think, say, gluten is your problem because you felt better at a time when you were doing gluten-free when actually it was just a coincidence, but still in the 7 years I’ve been sick I’ve found which lifestyle habits seem to be the most impactful for me (the for me part is important, and is the reason why this blog is called Your Results May Vary – just because something works for me, doesn’t me it will for you and vice versa). Nothing is set in stone, either, because on a day to day, month to month basis things can change and I have to adjust to those changes so that the habits that work great today may not work this time next year.

So there you have it. I know it seems like a lot of work but I’m really glad I did it because I am much more empowered as a result of all the work. I almost never have problems with doctors not taking me seriously now which was something that happened ALL THE TIME for the first 3-4 years of my illness. I don’t journal to the same extent anymore because I’ve finally figured out how to manage my spoons in such a way that I prevent or at least minimize crashes but journaling is what got me to this place of empowerment and balance in living with chronic illness. I hope this is helpful to you guys. Please let me know in the comments what strategies have worked for you!


Your Results May Vary – One Year On

It’s been about a year since my first post on this blog. I thought it would be a good time to reflect on the journey I’ve been on this past year.

When I wrote my first blog post a year ago, I’d just started physical therapy. At that time I was really hoping that physical therapy would help me to recapture some functional capacity. I was limited to a maximum of 3-4 hours of activity per day. The rest of the time I had to be laying down either on my bed or on the couch and I was in quite a bit of pain. I rather optimistically hoped I’d be able to return to work by the end of the year. But when I was hitting the six month mark with physical therapy, I realized that an increase of functional capacity had not been a realistic goal for me. Don’t get me wrong, I’d seen huge improvements due to physical therapy. I was physically much stronger so doing basic functional tasks like brushing my teeth, taking a shower, changing my sheets or taking out the trash became MUCH easier to perform. I was able to sit upright rather than needing to lie down all the time. I also noticed improvement in my mood and in the quality of my sleep. But the improved functioning came at a cost – increased physical activity meant increased pain. Between the pain and the realization that my disability was most likely going to permanent a huge depression came over me as the weather turned and the days became shorter in October. I began to question whether life was worth living if I was only living it in this limited way. It’s been several years since I’ve seen most of my friends face to face. I’m housebound, so it’s difficult for me to make new in real life friends. Dating seems impossible. And then there’s the guilt, the feeling that I am this enormous financial burden on my parents. None of these things felt good to me. It felt like I was in mourning for my life. Between my cognitive symptoms and my physical symptoms, I was experiencing a debilitation that most people don’t expect to experience until they are elderly. The years stretched out before me and I didn’t really know what there was to live for. I’m unmarried, physically unable to care for children or work. I experience a cognitive impairment that makes tasks that used to come easily to me, such as reading and writing, more challenging. It was very far from the life I was expecting to live. When I realized that my depression had become serious and life-endangering, I reached out. To my parents, my friends, my neighbors, my online community, to my medical provider. And everyone really stepped up to the plate. My neighbor took me to see my primary (because I’m in Medicare, my primary is a physician’s assistant rather than a doctor) and stayed with me until my parents arrived. My parents dropped everything to drive six hours north to be with me (and came to visit me every few weeks during the winter to keep me company). I was surrounded with love and support from my friends. Still, it was a difficult time. I had to learn how to accept living life as a disabled person and that wasn’t necessarily an easy thing to do. I had to find a way to live a meaningful life within not only physical limitations but also with constant discomfort in some form or another.

In order to come to terms with my new reality, my “new” life as a disabled person (although I have been disabled now for six years, it was only this past year that I’ve accepted that this status is most likely permanent), I’ve had to restructure my ideas of what constituted a meaningful life. For example, the biggest thing I’ve missed the last few years was having a social life. Being able to interact with people. But luckily we live in an internet age. In the last year, I’ve grown dependent on social media and they have provided me with a daily source of interaction. I have made new friends on Twitter across all walks of life with whom I’ve been able to have Skype conversations – which have replaced one-on-one interactions such as meals together or coffee dates. Because such a wide variety of people interact on Twitter, I’ve made friends all over the world, many of whom are disabled like me. My interactions with these people have provided stimulating, intelligent conversation that has expanded my horizons, my vocabulary and my understanding of the world I live in. There is a diversity on Twitter that I’ve never encountered in real life, I find the richness of my interactions fascinating and thought-provoking. I’ve even been able to meet a couple of my tweeps due to my participation in this year’s AWP conference in Seattle.

Learning to live life in acceptance has led to a new serenity and patience in my relationships with my family and friends. I’ve learned to stop fighting against “what is” whether it’s my disability, my geographic location (hundreds of miles away from my friends and family), or personality characteristics of my parents, I’ve learned to let go of my frustration with “what is” and simply accept it and that has led to a deepening of my relationships, a greater sense of centeredness and peace, and a greater sense of what’s possible in the world, and a curiosity about what I will get to experience. Just because my life is limited doesn’t mean it can’t be stimulating, interesting, or surprising. I have a new hope and excitement about what’s ahead for me, and a belief that some of what’s to come is going to be amazing.


How I got sick (or, events leading up to my disability)

I’ve been resisting writing this blog post for a really long time. I mean…. years. It’s been years. I think I wanted to have a sense of my illness as a narrative but real life isn’t like that. It doesn’t have clearly defined beginnings, middles, endings. We assign a narrative to our life because it’s just something that humans do, we’ll talk about “the end of an era” when referring to a relationship or a job but if we’re honest with ourselves, the beginnings and endings are assigned or superimposed – they’re never really that clearly defined. There are always a few loose strands that don’t fit neatly into the narrative we’re trying to convince ourselves is the truth.

In writing about my disability, there is no real obvious beginning for me. Do I begin with the fact that my mom was malnourished through most of her childhood because of the devastation visited on the Philippines by World War 2? Do I talk about the childhood illness that left my Dad deaf in one ear and statistically unlikely to father even one child? Do I talk about the fact that I was born prematurely? That I had childhood asthma which meant lots of scary emergency room visits and a handful of near death experiences? Perhaps it was my cripplingly painful menstrual periods, the result of my having endometriosis (although this was not diagnosed until after I was disabled). Any one of these things may be a contributing factor to my current disability. We don’t know enough about ME* to know how or why it starts. It could be one of the above or all of the above. It could be something I haven’t even discussed in this blog because I don’t know about it. We just don’t know. So I’ll just start with when I started to feel not quite right.

In the summer of 2000, I moved to New York City. I’d been saving my money for a while to move out there. I decided I no longer wanted to work in the entertainment industry and I wanted a fresh start. A friend had taken a job managing a summer resort so he offered me his place rent free for the summer. It was the perfect set up for me. Not having to pay rent or buy furniture meant I had more time to look for the right job and the right living situation, one I could afford based on my salary. Unfortunately, it didn’t work out that way. The day before I was set to leave for New York, my friend called me. He’d fallen in love with a woman (who he later married & is still married to) and he couldn’t bear to be separated from her for the summer. He told me I could stay at his place as long as was necessary to find a place of my own. But when I arrived at his apartment, I knew it wouldn’t work. It was a tiny studio – great for a single person or a newly in love couple but not so much for a couple and their single friend. The next day I found a gorgeous apartment in Park Slope. The rent for my bedroom was more than double what I’d paid in L.A., and the deposit ate a huge chunk of my savings but it was worth it to longer be sleeping on my friend’s floor. Because of my expensive rent, I didn’t think I could afford to take the entry level positions that were offered me so I ultimately took a job waiting tables. I knew I could easily make the money I needed for my rent if the restaurant was successful. Unfortunately, the restaurant was brand new and I made almost nothing while I worked there. (On my best night, I made $400 in tips but after tip-sharing, I took home only $80 of it). I was working 7 days a week and was barely able to cover my groceries with the little I was taking home in tips. I was hemorrhaging money fast. And then I got sick. Because I couldn’t afford to take time off, I worked despite my illness. I would run into the kitchen to cough up thick green phlegm before serving my customers their food. (I’m sure I got a lot of people sick. Sorry about that. That’s what happens when you work in the restaurant business – there are no paid sick days for most restaurant workers.) Finally, my roommate, who had been a pre-med student, insisted that I go to the emergency room. When I went in, they wanted to admit me to the hospital right away. I had pneumonia, and my lung capacity test results were so poor they were justifiably worried that I would have an asthma attack and die. But I couldn’t afford a hospital bill – I had no insurance. So instead I asked them to load me up on steroids and antibiotics and let me go home. The ER doc and I made a deal. I would stay in the ER on an IV drip of steroids  and antibiotics  and take nebulizer breath treatments. They would test my lung capacity every hour. If it did not hit a certain number by the end of his shift, they would admit me. If it did, they’d send me home with antibiotics and steroids. At the end of the shift, I barely hit the desired peak flow (lung capacity) number and was sent home. I then spent a week in bed literally unable to move. Just shuffling to the bathroom was an exhausting endeavor. The restaurant called to threaten me – I would be fired if I didn’t come back in. I was too sick to care. When I got a bit better, a friend of my cousin found me a job waiting tables at one of the hottest bars in Greenwich Village. I met with the manager and she offered me a job right away. She assured me that I would easily make enough money to pay my bills. The problem was, I was completely and utterly flattened by my illness and waiting tables is a high energy job. I just didn’t know if I had it in me. I was running out of money and I couldn’t afford to stay in New York and not work while I rehabilitated. I opted to leave New York and move back in with my parents in L.A.

When I got to LA, the plan was to rest completely and then go back to work when I felt ready. I rested completely but after three months, I still wasn’t able to return to work full time. I started working with a doctor to figure out what was wrong with me. She did all the typical tests. They were all inconclusive. In the end, she gave up on trying to find something wrong with me, concluding: “you just have to accept that you have a dog of a body”. Meanwhile, all of this weird stuff was happening to me. I started to have problems with gum infections. My dentist told me that it was the kind of problem they saw in patients going through chemo, or AIDS patients, any patients whose immune system was under serious pressure. One time I went hiking with my boyfriend & a friend and I fainted at the top of the hill. Because I was unable to hold my head upright without passing out again, I had to be carried down the hill by paramedics. I spent the day in the hospital getting IV bag after IV bag of saline solution. My blood pressure, it turns out, was dangerously low. I suffered a vicious herpes infection and was sicker with it than I’ve ever been in my life. The sores in my throat made me feel as though I were swallowing razor blades whenever I ate anything. I had a high fever, and an achy, miserable feeling. My ob/gyn told me that I could have had the virus for years and that I probably only experienced this attack because of poor immune system function. Another explanation was that my boyfriend was a carrier. Either way I was miserably sick and sick for longer than I’d ever been before. Despite these red flags that my immune system wasn’t functioning properly, none of my doctors could find a reason for my body’s inability to thrive. So I tried to carry on with my life. I moved in with my boyfriend and started temping. With temping, I could decline jobs if I didn’t feel good, or I could call in sick and have another temp finish an assignment.  This ended up being a relatively productive period for me. Even though I never felt like I had recovered completely from my pneumonia, I was able to work and volunteer with my boyfriend’s theatre company. I wrote an adaptation of a play and started working on a novel, I even did some volunteer work with 826 LA and a feral cat organization. I felt as if I’d finally figured out how to live with my diminished functional capacity.  I was hopeful that I might make a complete recovery with time. Because neither of us were working steadily enough to pay rent on our little Silverlake duplex, my boyfriend & I were forced to move into a cheaper rented condo with a roommate. The condo was in a bad neighborhood downtown (next to a park which was notorious for its drug dealings) – it had been an investment buy for our landlord, who bought it dirt cheap, apparently. Despite the neighborhood, the condo had been nicely upgraded by our landlord and seemed like an ideal place for us to live until we could afford a nicer neighborhood. After we moved in, the homeowners association decided to upgrade the piping in the building. A contractor came into our unit and knocked holes in all the walls containing pipes. But then the contractors never came back to finish the work. The HOA and the contractor went into a lengthy lawsuit during which time we hit rainy season. There’s a good chance that even if we didn’t have mold in our wall cavities before the walls were knocked down, we certainly developed them after the rains came.  In any event, my fragile equilibrium was destroyed & I started to struggle with work & my other projects. I made adjustments to address my diminished functional capacity. I stopped volunteering & working with the theatre company. I stopped writing. I stopped going out with friends. I took a job with flexible hours so I could go home early or go in late or take a day off work if I wasn’t feeling well. As long as my work was getting done, no one cared how many hours I worked. I could even work from home some days. However, my boyfriend’s car had been repossessed so in reality, I still didn’t have that much flexibility in my schedule – I had to carpool with my boyfriend, which meant observing his office hours. And since my boyfriend was always working at the theatre at night, I ended up feeling like a prisoner in my own apartment. I had no car to go anywhere, I couldn’t walk anywhere because the neighborhood was so bad, the only times I got to go out was when a friend came to pick me up but since most of my friends were involved in the same theater company as my boyfriend, I ended up spending a lot of time alone. The truth was, I didn’t feel well enough to go out anyway. I was always exhausted.

It was a bad situation for my boyfriend and myself and ultimately we broke up. My parents had just retired and moved to Idaho so I had to find a new place to live very quickly. I found a cute little apartment in West Hollywood and moved in. Unfortunately, I was unaware of the fact that my new apartment had mold and I began getting sick again. This time, I developed acute chronic sinusitis. Which basically means that I couldn’t breathe through my nose because my nasal passages had swollen completely shut and that mucus poured out of my nose like water from a tap. It was disgusting and annoying and uncomfortable, but I was still able to do my job with it. By this time, my quality of life was a bit better because I’d successfully started my own public relations business and was making significantly better money than I ever had before, but I couldn’t enjoy it because literally all that extra money was going to doctors and various non-traditional practitioners in my quest to solve my health problems. Due to my history of asthma-related hospitalizations, I could only afford catastrophic insurance so every doctor’s visit, every CT scan, was paid for out of my pocket money. I finally had my apartment tested for mold and was able to break my lease when the result came back. I moved again to a place that thankfully did not have mold. My fragile health returned to stable but with lowered functional capacity. I began to realize that staying in Los Angeles wasn’t going to be sustainable for me in the long term, even with the flexible hours of my new business. I had no quality of life. All my money went to paying medical bills and buying the best quality food (when you’re ill but have no diagnosis, then your only option is to focus on your lifestyle habits and hope that it’s enough to restore your good health). I used all my spoons to work and take care of myself and I barely had any energy leftover to interact with my friends. I’d exhausted every opportunity for a diagnosis. Despite visiting doctors, medical specialists, acupuncturists, herbalists, naturopaths and nutritionists, I was unable to find anyone who could give me a diagnosis or help me improve my quality of life or functional capacity. I couldn’t move back in with my parents because they lived in an extremely rural area, three hours from the nearest city. There were no jobs in their community. Most of my parents’ neighbors were either retired, or had a primary residence in Boise and used their New Meadows home as a vacation home. The nearest town didn’t have much more than a county hospital and a handful of restaurants. The nearest movie theater was over two hours away. There was no way I could make a living or have a life there. So I decided to move to Portland, which was eight hours away from my parents and had a rich culture of ad agencies, marketing and public relations firms. Portland was close enough to my parents that we could drive to visit one another, it was a city with rich cultural opportunities and it was much less expensive to live there than in L.A. I packed up all my stuff and drove up to Idaho. The plan was to spend a few weeks visiting my parents and then move to Portland. Unfortunately, when I got to Idaho, it was to discover that the forest preserve that backs onto my parents’ property was on fire. The air quality was so bad that every time I went outside I suffered an acute asthma attack. My acute, chronic sinusitis returned. I was sick the entire time I was living with my parents and decided to move to Portland sooner rather than later. It took me a few months to find a job. In that time my health seemed to improve slightly. But the start date of my new full-time job coincided with the start of winter. I admit, I assumed that because I was living in a healthy building (one that was LEED certified), I would be able to work a full time job as I had done in the past during higher functioning periods. Sadly, I was wrong. The ambient mold in Portland skyrocketed due to a wet winter season, and that, combined with the stress of my job, brought my acute chronic sinusitis back with a vengeance. Luckily, I had health insurance, so I could aggressively pursue solutions. At this point I was taking steroids daily – that was the only thing that was giving me the oomph I needed to work and keeping my sinusitis at bay. Unfortunately, it wreaked havoc with my sleep cycles and I suffered terribly from insomnia. Finally, after six months, I collapsed completely. I was so exhausted I not only couldn’t get out of bed, I couldn’t read or listen to music. I literally laid in my bed and stared at the ceiling all day, crawling to the toilet or the kitchen as needed. I thought I was going to die. My primary doctor told me that my blood pressure and body temperature were “worrisomely low”. I called my parents and made them promise to take care of my cats if I died. I was worried that I would die and my cats would be forced to eat my face and my parents would find that so horrifying that they’d shunt my cats off to a shelter, where they might not find a home and so they would end up being killed. It was really important to me to make sure that my cats had a good home after I died. My parents were so alarmed by this conversation, they jumped in their car and drove over to Portland. I took all my sick days and all my vacation time and for a month I went through a battery of tests to figure out what was wrong with me. My parents did the cooking and cleaning. They drove me to doctor’s appointments. They sat in my living room watching streaming television on my laptop and then went to a motel to sleep. After my month was up, I was called into my boss’ office. They told me I had to return to work immediately or quit. The day before, my immunologist had told me that she had no way of returning me back to a state of health. Her best recommendation was to move to Idaho and hope that the rest and clean mountain air would heal me. Her best guess as to what was wrong with me? An extreme sensitivity to mold. (Because Portland has the highest levels of ambient mold in the country – it was literally the worst possible place for me to live.) I quit my job, packed up a car’s worth of stuff (everything else I’d gotten rid of before moving to Portland – my apartment had been rented furnished) and moved to Idaho. This May will mark the sixth anniversary of the move to Idaho. I recovered some functionality after that terrible crash but I’m by no means well. ME has almost completely disabled me. I spend 80% of my time either laying down or sitting upright propped up by pillows. I can only move around an average of about 4 hours a day. That’s for cooking, cleaning, grooming, brushing my teeth, walking across the room to the bathroom. I’m lucky that I’m able to live a somewhat independent life (doing my own errands & chores) because some people stricken with ME can not even get out of bed. Some of us need to use wheelchairs and need assistance to do even the simplest of tasks like go to the bathroom. So I’m grateful for this small thing – that I’m able to live independently and that I do not need assistance to walk.

You’ll notice that even though this post is called “How I got sick”, I never really answered the question. The best guess is mold, which is why mold has been the driver for this particular narrative. But it’s entirely possible that in the next five, ten, twenty years, research will shed light on what ME is and how it affects our bodies. And when that happens, it may very well recast my entire disease narrative. Because the truth is that as far as ME is concerned there are no certainties, only questions. A lot of ME patients, myself included, will say things like, “if I had done, or hadn’t done, this thing maybe I would have gotten better”. We do that because it is a compulsive human habit to look at our lives narratively. The truth is that of course we do not know these things for certain. When it comes to ME, we are all fumbling around in the dark.

I’ll cover my long road to an ME diagnosis in a future blogpost. I’m feeling a bit exhausted today after writing this one. I hope that in some way reading about my story helps my fellow ME sufferers to feel less alone, I hope that it gives some understanding of what living with this disease is like to friends, family & community members. And, obviously, I am hoping that by writing my story I may find a measure of peace with it. That telling my story gives my life, my continued existence, some measure of meaning. Thank you all for reading my posts. Your supportive comments mean a lot to me.

*Myalgic Encephalopathy is the term I will be using from now on to refer to my disease. Those of us who have it are working to have the name officially changed from CFS to ME (which is what it is called in the UK).

My rape culture story

A lot of words have been written about Dylan Farrow this weekend. A lot of words have been written about rape culture since the Steubenville rape. And now, I’m going to add words of my own. Because writing is how I process. Because I feel like not speaking up makes me complicit in some way. And because I’m tired of carrying the burden of my story privately. So this is my rape culture story. Trigger warning.

When I was very young (maybe 3) I was sexually abused by my babysitter. I consider myself lucky because it only happened once. When my parents told me this babysitter was going to come back, I burst into tears and told them what happened. Because the babysitter was the son of my parents’ friends and was not much more than a child himself, the matter was handled privately. The boy spoke to a priest. My family continued to socialize with his family, but I was never left alone with him again. The matter was brushed under the carpet and forgotten. I didn’t remember again until I was in my tweens and we had a special assembly in which we talked about sexual abuse. The memories came rushing back to me then. I went home and confronted my mother and she admitted that it had happened. I’ve never really felt like I had anything to contribute to conversations of rape or sexual abuse because my experience was mild compared to that of others. I wasn’t beaten. It didn’t happen more than once. I’d forgotten about it for years. I didn’t feel like I could validly call myself a survivor without being accused of melodrama. I found myself saying things like, “I was abused, but it wasn’t a big deal”.

A couple of years ago, my family became friendly with another family. This family had been torn apart by a series of events which were unfurled when one member of the family revealed that she had been raped by her cousin. At the time of the rape, she was a tween, he was a teenager. He forced her to put his penis in her mouth. She fought him, got away and ran screaming and crying to her mother. As in my situation, the matter was dealt with privately so the rest of the family did not even know what happened until years and years later. When I heard this story, it was like a wound in my heart because it was so similar to my own. I have not spoken to this young woman so I don’t know if she, like me, was told that it would be nice, that she would like it, that it was a special secret just between us. After hearing this story, I told my parents that the rapist was not someone I wanted to meet. That he was not someone I wanted to know. I understand, his parents are friends with my parents. I understand that his parents forgave him. I understand that he may have been abused when he was a child. But I literally can not bear the idea of being in the same room as this person and my parents keep forgetting what he’s done. They really like him. They want me to be friends with him because he’s about my age and he lives in my neighborhood. They’re certain the story was exaggerated. The mental health of the cousin is called into question. The motives and sanity of her champions are also questioned. The cousin is faced with two choices whenever there is a family event – face her rapist or stay home while he socializes with the rest of her family. My parents keep wanting me to be friends with this guy. Our families spent the holidays together and because I couldn’t face the thought of breaking bread with him, of smiling at him and his new wife, I stayed home alone on Thanksgiving and Christmas. I had an excellent excuse – I was sick. I wasn’t faking it. I really was sick. The thought of being in the same room with this man makes me feel physically ill.

Rape culture means that the rapist gets to attend social events while the victim, not wanting to face him, stays at home. Rape culture means the victim has her motives and sanity questioned. Rape culture means the victim is pressured to get over it. Rape culture means the rapist is innocent until proven guilty and the victim is guilty of lying until she can prove her innocence. Rape culture places the burden of proof on the victim. Rape culture shames the victim into keeping silent and then gleefully pounces on her when she finally speaks up, asking why she didn’t bring it up earlier. Rape culture is almost every woman I know has experienced some form of rape or sexual abuse. Rape culture is I can count, on one hand, the number of women who have successfully pursued a case in court. Rape culture is being afraid to speak up because you can’t bear to recount the shame of what happened to you, because you can’t bear the way people look at you when you tell them. Rape culture is sometimes they roll their eyes at you for bringing it up at all. Rape culture is knowing that they think less of you because this thing happened to you. Rape culture means knowing your parents and friends may question your sanity, your memory and your motives because you’ve heard them do this to other victims who have dared to come forward. Rape culture is holding one of your best friends while she sobs because ten years earlier, when she was raped by one of her brother’s friends, her adored father blamed her for being provocative.

Rape culture is getting your dream job on a television show and then having your boss, someone you idolized growing up, repeatedly offer to pay you to perform sexual acts on him. In public. During staff meetings. Rape culture is no one meeting your eyes when this happens. Rape culture is sitting there quietly while he speculates about what sexual acts you performed on someone else. Rape culture is feeling relief when he moves on to another target. Rape culture is absolutely no one who was sitting in that room with you acknowledging what was said to you. Rape culture is being afraid to tell this story because it makes you look weak or bitter.

Rape culture is sitting in a meeting with your bosses and hearing them talk about a director they really want to be in business with. Rape culture is hearing them discuss which young attractive production assistant to assign to that director. Rape culture is listening while that girl is told to make sure the director is happy. Rape culture is hearing the girl called a slut if she accepts the advances of the director.  Rape culture is not making eye contact with the director’s wife when she comes into the office. Rape culture is knowing people assume you got a job because you performed a sex act with your boss. Rape culture is knowing you can’t defend yourself against these charges because people have already decided what happened. Rape culture is not speaking up when a girl who slept with a director is called a slut. Rape culture is feeling shame because you actually did have consensual sex with someone older, richer and more famous than you. Rape culture is feeling like an idiot because you actually thought he liked you. Rape culture is thinking, even if just for a second, that this makes you a slut or at the very least weak and stupid. Rape culture is having a director yell at you and abuse you until you are crying in the corner and THEN tell you to resume the scene. Rape culture is knowing that he did that to get a better performance out of you. Rape culture is knowing that this is considered acceptable behavior. Rape culture is leaving the entertainment industry and your dreams behind because you can’t take it any more. Rape culture is knowing that for a lot of people, this means you are weak.

Rape culture is when your drunken boyfriend and his friend think it would be a funny practical joke if the friend snuck up on you and stuck his penis on your neck. Rape culture is running around the apartment trying to get away from the friend, who is chasing you with his penis, while your boyfriend laughs. Rape culture is locking yourself in the bedroom. Rape culture is your boyfriend saying, “oh my God, baby open the door, I’m so sorry, we went too far”. Rape culture is opening the door to find the friend waiting. Rape culture is hiding under the covers while this friend pretends to have sex with you and hearing your boyfriend laugh. Rape culture is losing your shit and telling the friend that “IT IS NOT OK TO DO THAT.” Rape culture is your boyfriend being mad at you because you can’t take a joke and you made his friend feel bad.

Rape culture is being afraid to speak out about my experiences with rape culture because maybe people will think I’m emotionally unbalanced or weak. Rape culture is being scared my parents are going to mad at me for making waves and bringing up the rapist they want so badly for me to be friends with. Rape culture is feeling that peace and good manners and sociability are more important than your feelings. Rape culture is knowing that the person who is richer, more famous, more successful, whiter and more male than you will never have to defend himself because he always has people who are willing to leap to his defense. Good people. Smart people. People with excellent reputations. Eloquent and educated people. Condescending people. People who are more famous, more successful than you. People who you thought were your friend. Rape culture is your friends, your parents, your boyfriend leaping to the defense of the person who is not you. Rape culture is keeping silent because you can’t bear the idea of being attacked as you have been attacked every time you’ve spoken an unpleasant truth. Rape culture is knowing that this makes you a collaborator in rape culture.

About this blog and me

I thought it might be a good idea to write a basic FAQ blogpost before writing more here. Just to let you know who I am and why I’m writing this blog.

My name is Mei-Lu McGonigle. I’ve been disabled by CFS/ME since May 2008. Before my collapse, I was struggling with a milder form of undiagnosed CFS/ME for about 8 years. I grew up in suburbs of Chicago, Los Angeles and London. I am a first generation American – my father is Scottish and my mother is Chinese (though she grew up in the Philippines). I did a year at the University of Illinois, Urbana-Champaign before transferring to University of Southern California, where I received a BFA in screenwriting. While trying to break into the business as a film and television writer I had a lot of different jobs – temping, restaurant work, and various industry and non-industry assistant jobs. Eventually I segued into public relations, which was what I was doing when I became disabled.

YRMV is my blog about living with chronic illness. I have another blog, Daily Krill, about fun random stuff (pop culture, history, fashion, makeup… basically anything that strikes my fancy).  I’m writing YRMV for many reasons. The main one is that I’m a writer and writing is how I process. But also my understanding of my disability and various symptoms improved dramatically when I started connecting with other chronically ill people. So I hope that by being open and honest here I’ll help other chronically ill patients (or friends & family of the chronically ill)  in the way that they’ve helped me. I want emphasize that this is NOT a “how to” live with chronic illness blog because I think most chronically ill people are drowning in a sea of well-intended but mostly unproductive advice. Just because I’ve decided a course of action is the best for me & my constellation of symptoms doesn’t mean that I think everyone should do it. This is why I’ve called the blog YRMV (for “your results may vary”).

I’ll be using the term spoonie a lot in this blog. Spoonie is the term many of us in the chronically ill community have adopted to describe ourselves. It comes from this blog post by Christine Miserandino. I like the term spoonie because it doesn’t have the emotional weight that terms such as disabled can have. (Although I have embraced the term disabled, a lot of fellow spoonies feel that it doesn’t accurately apply to their circumstances.) Also, using the hashtag spoonie allows us to interact with other people who are suffering in a similar way but who we may not otherwise interact with if we stayed siloed in one specific diagnosis.

Speaking of diagnoses, CFS/ME isn’t the *only* thing wrong with me. Like many other spoonies, I have multiple chronic health problems. It’s interesting how many spoonies have a constellation of symptoms and diagnoses rather than just one thing. It’s almost as if once the body is under pressure, it starts fracturing along its fault lines, its weaknesses. Along with CFS/ME, I also suffer from myalgia (though not fibromyalgia), endometriosis, asthma, allergies, a compromised immune system (which means I have a lower resistance to viral illnesses & take a long time to recover from illnesses that are minor inconveniences to healthy people), a tendency towards digestive symptoms (in the last 12 months I’ve had four episodes of acute digestive distress similar to food poisoning, one requiring an emergency room visit) and insomnia. In the past I’ve had cardiac symptoms stemming from orthostatic intolerance. I’m happy to report that since I’ve learned how to pace my activities, I haven’t suffered from this particular symptom (fingers crossed that continues).  I endure daily sore throats and headaches. I suspect that I have some form of dysautonomia and will be seeing a neurologist later this month for testing. I’ll go into my symptoms and diagnoses in more detail in later blog posts. This paragraph is just meant to be an overview.

I hope this blog becomes a vehicle for greater understanding between the community who support me and myself. Thank you very much for reading it, and for the messages of support you’ve given me. I appreciate you so much.

Thank You

As I write these words, my parents are on their way up here to spend Thanksgiving with me. So this is going to be a quickie.

This year, I have a lot to be grateful for. First of all, I’m grateful for my parents. Chronic illness doesn’t just strike the patient – it strikes her family and friends as well. This has been a tough road for my parents. Have they responded perfectly to this scenario? No they haven’t. They’re not sitcom parents – they live in the real world. They’ve been angry and scared, they’ve cried and screamed, and sometimes those things have not been expressed in a way that has been comfortable for any of us. But in the big picture those moments are not what matters. What matters is that at the end of the day, they’ve been here for me. At the end of the day, they’ve been amazing. They’ve given me absolutely everything they have to give and have battled to stay strong and supportive for me. They’ve shown up and they’ve stayed. They’ve loved me, they’ve held me when I cried, they’ve fed me and made my bed, they’ve learned to love my cats (a VERY tall order), they’ve driven me anywhere I’ve needed to go. They’ve given up on the prospect of grandkids and have surrendered the comfort of their retirement to take care of me. I wouldn’t have survived this long if it weren’t for my mom and dad and I love them and am endlessly grateful that I got them as my parents.

I am also grateful for my extended family of friends. You guys, all of you, mean a lot to me. I’m talking about my tweeps, just as much as my so-called real world friends. Guess what? I live in the virtual world now, that’s where 90% of my human interactions come from. So as far as I’m concerned you ARE my real world friends. Even if I don’t know your real name. 🙂 Whether it’s just a favorite or a like, sharing something with me on Facebook, whether it’s an email or a phone call or a Skype, every single one of our interactions has meant the world to me. They are the nourishment that has kept my soul alive in this the darkest of any time I’ve ever been through.

So thank you. I love you guys.

Where I’m At Now

Whenever I try to think of a way of writing about my disability, I immediately get overwhelmed because there’s so much I want to communicate – to myself as much as to friends, family, the world. And, you know, I only have so much bandwidth. Like I want to write about ALL THE THINGS.  Every single aspect of my life is dominated by CFS/ME and it’s hard to write or talk about one thing without thinking about how it’s connected to all these other things. So I’m just going to write about where I’m at today and see how that goes.

Today was a good day. I had a Skype session with a tweep (hi Annie!) and it was wonderful. The absolute worst thing about having chronic illness is the loneliness of it. During the winter, I can go days without interacting with a single live human. It’s hard for me to get out of the house and I don’t have any friends in this area who could drop by and visit with me. Thank goodness I have cats. I don’t think I would have survived this long without their companionship.

I got crushed by a wave of depression as the days started getting colder and shorter a month ago, knowing that I was going to face another long, lonely winter. I’ve realized I really need to reevaluate how I communicate with the world. So I asked a couple of tweeps to Skype with me. And I’m going to try to reach out to my real world friends and do more than just Facebook updating. I’m trying to participate more in different online groups like twitter book clubs and movie clubs.  And my parents are going to try to visit me more often. I don’t know. It’s not a perfect system but I’m hopeful that with these strategies this winter will be better than last winter. Wow. That seems way too ambitious.

Let’s just say that because of Annie, today was a better day than yesterday. Today I remembered I was human.