Speaking Through the Fog

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_“__I__’__d rather have cancer than Chronic Fatigue Syndrome.__”_

_-Jenny Andrews, a chronic fatigue sufferer _

_and survivor of bladder cancer._

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Jenny Andrews’ words are both profound and sensitive. If someone without cancer said them, anyone who read the quote would bristle with offense on behalf of cancer sufferers everywhere. You read them now, even with Jenny having experienced both, and think something to the tune of, “there is no way someone could want something as horrifying as cancer over just being tired all the time.” This kind of thinking is common to anyone who hasn’t experienced the life altering disease and all its devastating symptoms that is Chronic Fatigue Syndrome. It completely takes over life, body, mind and soul. For me, it took six years to receive a diagnosis of Chronic Fatigue Syndrome (ME/CFS) so I view it a little differently. When the Rheumatologist told me that I have ME/CFS, I cried. But I didn’t cry from sadness or horror but, rather, from happiness, elation, relief, and validation. I finally received a diagnosis that made sense to me even if it is a hard disease to have. Being told I had ME/CFS didn’t all of a sudden give me the symptoms, I had already been dealing with the symptoms for years! All the rheumatologist did that day was to put that all important label on them. No one wants to recognize just symptoms as a problem. A problem doesn’t exist in most people’s minds until a determination of cause is made. That diagnosis, that label of ME/CFS, was both necessary and beautiful to me in order to move forward. It also gave me a point to start researching on what to expect, what I can do if anything to help myself continue living, and how I should work with my doctors for treatment. Through my research, however, I realized that with this illness, I will not only have to battle with my body, but with the medical community and society at large.

 

_“__There are moments that mark your life, moments when you realize nothing will ever be the same and time will be divided into two parts, before this and after this.__”_

_-Author Unknown_

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As far as I can tell, my symptoms started around six years ago. Most people who have ME/CFS remember having gotten a flu or virus that they never recovered from. Unfortunately, I don’t think I can be that exact because I got sick right after I had my first daughter. I don’t know if this is relevant but while I was pregnant, I did get a really bad flu that hiked up my fever so high I told the baby’s father that I was scared I was cooking the baby’s brain. I was also so nauseous I couldn’t even hold down water and became severely dehydrated. At the time, leaving bed was implausible because the flu was so bad and my joints hurt terribly. I called into work and was out a solid week, which was unusual for me since I loved to work. I was almost hospitalized by my midwife but maintained my health just enough, and barely, for her to allow me to stay home. If I was more tired after that, I can’t say. Being tired and sore is normal during pregnancy especially in the third trimester (which would have started right after the flue) and it was my first baby so it would be hard to discern if I felt abnormal after I got over the flu. After birthing my daughter, however, I can for sure say that I never felt the same. From then on I felt, and still feel, as though my mind and energy is slowly being consumed by this illness and never getting replaced.

The worst symptom for me is the general, overlying brain fog that persists to be the center of my world in the last few years. I feel as if I look at the world through blurry lenses. It’s as if I am slightly drunk or high all the time without ever coming down to reality. Some people might think this would be a fun thing. I mean, who doesn’t want a free high, right? Well, try talking to your boss and explain why you didn’t lock up the night before when you can’t even recall what you did an hour ago or go take a test when you can barely focus on the page itself, let alone think up answers. It’s not fun when you can’t control your sobriety and you never come down from the trip you are on, even to deal with serious business. For me, my world is a dream state and my consciousness is just barely attached to my body. I sometimes forget I even have a body. It isn’t numb exactly; I just forget I have an arm until I need to focus on it. This lack of awareness of my body makes me clumsy and rude. I bump into people all the time. When I worked at a brewery, I was like a bull in a china shop. Constantly bashing my way from one end of the kitchen to the other and bouncing off my coworkers like a pinball. I can be so bad about not being aware of my body, that I even forget about my hand when it is holding something. I then spill whatever it is all over myself so that, on top of looking clumsy, I also look like a slob.

Locating items in my world is almost impossible. Most people take for granted that they can walk up to an aisle looking for toothpaste, quickly take in all the toothpaste stacked on the shelves in front of them, and zero in on the brand and type they are looking for. This process takes them seconds and then they are on their way to their next item. For me, even from the start, it takes forever to remember where the toothpaste would be located in the store, even if it is a store I go to all the time. Then, when I get to the aisle, I have to look at each and every tube of toothpaste to decide whether it is the particular one I am looking for. This takes me a long time. I have to start over many times because I space out and can’t remember what I have already looked at or I forget what type I am supposed to be looking for. Sometimes, I forget completely why I need the toothpaste, decide the effort to look for it isn’t worth it, and move on. That night, I try to brush my teeth, and realize we are out of toothpaste and curse myself for not getting it earlier when I was actually at the store, and hope the next time I go that I don’t forget it.

This seemingly impossible task of location extends to trying to find people. If whoever I am with walks away from me, I get upset and angry immediately. When I find them, the person usually acts as if I am overreacting when I snipe at them for separating from me. I am like this, however, because looking for them not only makes my symptoms worst but I am terrified that when I look around no one is familiar and the scene begins to blur together. It takes so long for my brain to process the information it receives, sometimes my companion has passed me completely before I can determine if that person is a stranger or not. People blur together and my world starts to spin. I can’t take what’s going on around me and I feel lost. Until that person locates me, I want to just sit down right where I am and hope for the best. This would seem weird, if I sat down in the middle of an aisle, so I bolster my courage and continue looking through the fog in hopes my brain can clasp onto something familiar like the sound of my youngest daughter squealing or a flash of my mother’s ponytail. When I finally locate my missing party, I am as irritable as a bear. This grumpiness stems from the terror I just experienced at not feeling settled in my surroundings. I feel as though if I can’t find my party, I will never be able to find myself. This might seem like a flowery way to put it, but unless you felt the terror of being lost in a world that is too overwhelming to handle, you wouldn’t understand what I mean. The rest of the trip, I maintain a death grip on the person and generally have to go home immediately after we leave because the experience will make my symptoms worst.

Another symptom that is near the top of my symptoms list is problems with words. At first, it was just a nuisance. When I would talk, the words would sometimes slur or I’d pronounce them wrong. The people around me would laugh, which was slight but embarrassing. I was a young twenty-two-year-old mother working at a brewery and wanted to fit in. I already felt set apart from the people my age because I had responsibilities that they didn’t (i.e. a kid, a steady relationship, etc.) and now I was constantly flubbing up what I was saying. I started to hear rumors that I people thought I was trying to use words I obviously didn’t understand. I also would sometimes be accused of drinking on the job. I really can’t blame them for thinking that. Not only would I stutter, slur, and say the wrong words but I was stumbling around being completely unaware of my body.

When I had my second daughter, four years into my illness, and my symptoms got worst, I quit the brewery and was unable to come back to work. I had taken the job at the brewery because it was easier than my previous job and career path, archaeology, and I thought my unshakable illness would be less noticeable there. It was sad when I knew even that job was too much. One day, I got “dizzy” as I like to call it and passed out. When I woke up, I was having extreme difficulty with my words. Passing out happens frequently to me over the last few years and it is a weird event. It is almost like the fogginess and disorientation builds up to a point that my body can’t handle anymore and it just, shuts off for a minute. I am like a router when the internet is slow, it feels like someone unplugs me for a second then plugs me back in. It is only a second, if I actually lose consciousness, but I find myself on the floor. Witnesses to this event say that I turn sheet white, break out in a cold sweat, and complain that I feel weird, then, I go down. One time I almost fainted into a 550-degree pizza oven during a rush at the brewery and I have fallen and cracked my ribs on the edge of a couch before. The particular incident I am talking about though, the one I had after my daughter was born, was different. I woke up and I was not just having a hard time with my words but I was completely unable to speak! When I did start talking, every word I wanted to communicate was forced out of my mouth as if they were fighting my will to have them come out of my brain into reality. I went to the hospital where they found it was not a stroke and sent me home. Ever since that particular white out episode, communication has become noticeably worst.

Recently, there was a movie called Zootopia that my kids love but my favorite part is with the sloths in the DMV. It isn’t just because this part is so funny, which it is, but that I related to the poor animals perfectly. Whenever I am out and about and I try to hold an informative conversation with somebody, their impatience with me is visible. Like one time I had to tell the front desk of my vet that we were going to leave and come back to get my dog so we might be a little late. I am talking about that kind of usually short and mindless daily exchange with people. I talk so slow and take so long to come to my point, these exchanges are anything but short with me and whoever I am talking to starts to try and supply me words to get the conversation moving. Unfortunately, when they interrupt me, this only puts a halt to my train of thought and I become completely derailed. It is never helpful when someone interrupts me for any reason and I usually have to run the conversation through my mind from the very beginning to catch up to where I was and what I was trying to say. Sometimes, my brain is so thrown off by an interruption, I forget the conversation entirely and have to let go of whatever it was I was trying to say and hope it wasn’t important. As you can imagine, this can be very irritating to the people around me. Talking to me takes a lot of time and effort and is a trial in understanding and patience.

I also have taken up rambling, which is rather embarrassing. I have always loved to talk and learned a bombastic language style from my huge family but I usually knew when to stop before I cross the line into annoying (at least I always thought so). Since my thoughts now are taken from the swirling pool of murky water that is my mind, when I pull a thought out that applies to the situation, I have to hold onto it with a single minded determination and focus or else it will sink back into the pool and I will have a hard time finding it again. I then have to try and exercise my multitasking abilities and push my limits into overdrive. Another unconscious ability that healthy people take for granted, the first being the ability to take in a whole scene instead of just parts, is the ability to maintain the flow of conversation. This involves thinking of how the discussion applies to them and pulling up what they are going to say next, all while still listening to what the other person is saying and keeping track of where the conversation goes. They also have the ability to discard or change what they were going to say next if the person who is talking gives new information or changes topics. I have a hard time doing this. When it comes to my turn, I often don’t know if what I am about to say even applies to where the conversation has traveled. I just know that what I am going to say is the prized story that I have saved from the pool and focused on remembering until it was my turn. When I start the story, I don’t know how to abbreviate. I also don’t have the ability to stop talking until my train of thought stops. This means, if my train switches tracks or gets lost, which it often does, I just keep talking. I keep talking and talking and talking. All through my inner dialogue and beyond. When I finally catch up with myself and realize I have been talking, usually about myself, long enough to be considered rude and maybe a little boring, I stop whatever I am rambling about and hope the person isn’t too annoyed. Usually they are just wondering what the heck is wrong with me and the exchange from that point becomes stilted.

The problem of losing my way with words is way worse than it sounds. No one really understands the frustration of being able to speak but not being able to control what or how I saw things. I say “uh” and “um” more than anyone I know and I forget what I am saying all the time, which results in long, awkward pauses. My father, during one of my appointments, talked about how he worries about me. He never let me know that he was worried. I always thought my slow speech, rambling, and huge pauses were nothing but an irritation to him. He is a man with little patience and talking to me would try the patience of even the most serene Buddhist monk. When he talked about his worries to my doctor though, it really affected me and showed me he did care. He said watching me struggle to talk, to come up with a word or try to find what I was trying to say, was something he has a hard time as a parent watching. It was so obvious that I try to speak normally but that it is hard if not impossible for me. I didn’t realize how obvious it was to other people about how hard I struggle to maintain the appearance of being okay and unaffected by my illness until he said that.

 

_“__Without language, one cannot talk to people and understand them__;_ _one cannot share their hopes and aspirations, grasp their history, appreciate their poetry, or savor their songs.__”_

_-Nelson Mandela_

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Nelson Mandela words really are a good explanation as to what I lost when the fog overtook my ability to speak normally. I always felt I was an intelligent and articulate person and to lose my words was a huge blow. People treat me as if I am stupid and why wouldn’t they assume I am when I talk like Forrest Gump? Words have power! They can change people’s minds, tell people’s stories, and open up a new world. Martin Luther King Jr. started a revolution just by speaking up and demanding change. Adolf Hitler led a whole nation and had them committing horrendous atrocities just with his words. Words are a weapon and like any weapon, can be used for evil or for good. Without words or language, socialization is nearly impossible. The exchange of ideas is lost and survival becomes purely selfish. We need communication to elevate our existence and I have lost mine. It’s worse than becoming mute because I could still communicate effectively through sign language if I was mute. My ability to talk and be heard was stripped directly from my brain functioning and has made my world and my power limited. No one truly understands this loss of vitality until it is truly gone.

The final symptom I am going to discuss is the symptom that most people focus on: the fatigue. In our society, everyone is tired. I have heard time and again on the news how our nation as a whole has a problem with sleep deprivation. Between jobs, kids, school, homework, hobbies, chores, bills, stress, television, social networking, and more, who has time to get in bed and sleep the necessary eight and a half hours to maintain health? That is why, when someone says they have Chronic Fatigue Syndrome, it seems laughable. I mean, what adult in America isn’t always tired? That CFS person must just be more of whiner to actually get being tired diagnosed as a “thing”. What an attention seeker, right? They need to just pull up their big girl or boy pants and get over it! I am sure if I never got this illness, I would have felt this way about this syndrome, ignored it, and went about my day. I now know that the fatigue I experience is way different than anything that healthy people, even if they are sleep deprived, have ever experienced. I am not trying to belittle the problem of sleep deprivation. People do need to cut out stress and sleep appropriately. Sleep is very important to a healthy, happy life. Believe me, I get that. I just am trying to say that I wish that my fatigue could be solved just by regulating my sleep and maybe throwing in a nap every once in a while.

My fatigue is an all-consuming, looming presence that doesn’t go away no matter what I try. It seeps into my mind, my body, and my soul and drains the color out of my life. From the time I wake up, to the time I fall asleep, my body screams for rest. It is never satiated and is only becomes more ravenous the more you feed it. I can try and ignore it but it stays laughingly in the background, smiling and waving anytime I notice it. My muscles and joints become tired from carrying me around. The smallest task becomes a momentous endeavor. I do still have some physical strength. I can lift and carry more than most women can. It’s just as I carry it, I can almost feel the energy leaving my being with each second of exertion. Carrying grocery bags into the house means I won’t be able to give my children a shower that night. My energy level is a running tally that I have to keep track of every day. I always wish I had more energy and am constantly overtaxing my system to function on a daily basis and feel normal. I never have a day where I wake up completely refreshed. Nothing I do makes me feel better and every day I have to hoard my energy because I don’t know if tomorrow I will wake up worse than today.

Physical exertion isn’t the only issue when it comes to my fatigue. Although exercising does make my symptoms worst, mental exertion does this as well. Going to the doctor will wipe me out for the rest of the day. The mental energy it takes to remember what I need to say, make myself coherent, be pleasant and cooperative, and be intelligent without seeming too informed is tiring. Talking in a social setting can drain me. I can be sitting in a chair the whole time I go on a visit and still come home feeling as though I ran the entire time I was there. The act of fighting off my fatigue and brain fog enough to talk and not embarrass myself is a lot harder than people know. Staying alert and not letting myself zone out is also taxing. Also, handling the mental task of trying to organize paperwork and pay bills can be too much for me to get through. Doing all this is fine as long as I already have the numbers in front of me but throw a problem in the mix (which always happens) and I am making mistakes right and left. I have always been a planner but planning is difficult when you can’t do more than a little bit of work at a time. My energy level frustrates me because I just want to get things done in a timely manner. I don’t know how many times I have been writing out a paper on research I have done for a trip or my kids’ birthday party and look up to the computer to check my work only to see that I have been writing gibberish because I am so tired I zoned out.

“Just go take a nap then if you are so tired,” I have been told. Even people closest to me seem to think sleep is the answer. It is hardwired into our brain to feel this way. When someone has a cold, you tell them to go to bed and rest. You bring them soup and leave them alone to get some peace and to recuperate. For me, sleep is not my friend. Sleep is my sworn enemy and I battle it constantly. Sleep is a deadly siren song that sounds sweet and captivating but leads to death. When I take a nap, I wake up worse than when I laid down. My fog will have doubled and my exhaustion is too much to fight. Waking up from a nap is the hardest battle against sleep and one I consistently lose. The siren already has me in her grasp and sings louder to keep me under. She claws at my being and doesn’t let me escape no matter how much I struggle. I also fight going to sleep at night. No matter how tired I am, I always stay up later than I originally attended because going to sleep is so abhorrent. I know that going to sleep means waking up and the effort it takes to wake up, scares me. Getting myself out of bed takes more willpower than I think anyone realizes and the years of war has taken its toll on my mind. The pull to stay in bed and continue to rest is hard to resist. I fear for the day when I no longer have the strength to get out of bed in the morning. When I decide the pull to stay resting is much more desirable than the misery of going about trying to just live, even with my family around me. If that time ever comes, then I will have truly lost.

The sad part about all of this energy I expend trying to live my life and outwardly look normal is that most of the time it creates more problems than it helps. Doctors, friends, strangers, just everyone look and listen to me and tell me I look like I am doing good. They think that I couldn’t possibly be all that bad or can’t fully grasp the seriousness of the situation. What they don’t realize is as I am talking to them, I feel as though I am looking up at them from under water in the bottom of a well. That my focus keeps dancing around their words and even though I shake my head appropriately at what they say, I am not fully comprehending their words. My eyes may be on you but they are looking through you. I have had years of practice, especially since my onset was gradual, to learn how to speak through the fog. I know how to function and stand, even when I feel like laying in my bed and never getting up. Most of my symptoms are internal so as they talk to me, solid in their world and completely present in the now, they have no idea that my world is a tumultuous haze that is seeping into my senses and disorienting my thoughts.

Despite all this, I am still the same person on the inside. I am still struggling to maintain a sense of self and not let this illness win. I still strive to be heard and be noticed through my fog. Where spoken word has failed me, written word has stepped in. I wish I could purely communicate with the world through writing. In writing, I can solidify my thoughts and edit them. I can easily track my thoughts and rein them in if they try to run off. There is also no one to interrupt me and make me lose my hold on the point I was trying to make. I can write as slowly as I want and pause as many times as I need to because there is no one to try to cater to. The person doesn’t become involved with what I am saying until the end. When I read replies, I can take my time to let the information and the meaning soak in. I can reread a message as many times as I need and glean the necessary information out of it to process. Unfortunately, very few people like to communicate through e-mail and in a way, that is a good thing. I think if I were to rely purely on writing to communicate, my cognitive function would be affected at a much faster rate until I would be unable to speak at all. If I don’t push myself a little, the illness will prevail.

As far as a tally goes in the war with my illness up to now, these last few months have been hard on me. Taking a trip across country to Florida to get a diagnosis at the Mayo Clinic was not in my best interest of my health but still needed to be done. The fog is closing in even closer, my words are slipping away, and the pool of thoughts in my mind has gotten muddier. Sleep is taking more and more of a priority over other tasks and its song is getting so much more tempting. I feel my feet trying to follow of their own accord and it is getting harder and harder to get them to stop and turn back. Information is too hard to process anymore. I find myself becoming more irritable about sound and light and can now understand my further progressed ME/CFS suffering brothers and sisters’ aversion to being around other people. Other people do too much. They make too much noise, they move way too fast, and overall are just, too much. Too much sensory input overloads my circuit and emits sparks that I am finding harder to ignore recently. My family won’t let me stay in bed or leave the room because I have to be there for my kids but my desire to do so may not be outweighed by their disapproval anymore in the near future. My guilt at snapping at my kids about making noise as they play is insurmountable. I want them to have fun and I don’t want to be an imposing figure in their mind but some of the activities they choose to do creates havoc to my world and makes me want to scream. At those times, I just want the world to slow down and maintain a pace my brain can keep up with, which is to practically stop in place. I hate feeling that way and don’t want other people to walk on eggshells to keep me happy, so I grit and bear the torture that other people create for me unintentionally.

To say that Chronic Fatigue Syndrome is not a serious illness is laughable. I always say, if I could put those doubters in my brain for even five minutes, they wouldn’t be able to handle it. My day starts with my illness and ends with it. A normal person can go about just thinking about what’s in front of them, I don’t have that pleasure. How can I do that when my perception is shrouded in haze? I feel as though my light is slowly going out and no one around me seems to be noticing its disappearance. I want to rail and scream! I want them to know what is happening to me and to get them to understand what my life has become but no one seems very interested in listening. My world is so different than anyone else’s around me and I feel so very alone. Even my fiancé, the person who knows me best and who I have no secrets from, doesn’t truly ever know my world. I can try and explain it in as detailed of a description as I can but still not be able to fully convey what I am experiencing. When I do meet someone who gets it, I feel both elated and depressed. To be fully understood by someone and to have someone actually be with me in the world I see feels like a moment of solace from the normal solitude I experience. I also am very sad that someone else has to live in it with me. I am not selfish enough to wish this horror upon another living being even for companionship. These moments of inner turmoil are always fleeting because CFS does not create a good environment to maintain friendships. We are all too tired to really organize so here I sit, in a daze, writing without thinking and not really sure what I am going to do with these words I have created. Hopefully, I can reach out and give some companionship to someone else in this world my disease has put me in. Just for a moment they can know that I sit with them, waiting to be saved as they are!