Wednesday, April 12, 2017

CFS is a Bitch

So many people in a single day ask me how I am. It's a social nicety that has good intentions but often not a lot of meaning. Some people genuinely want to know, regardless of the answer. Most don't. I try to gauge those who do and those who don't. When I was a teenager and my illness started, I didn't know the difference. I became known as a complainer. It started a long road of "suffering in silence." But you don't get medals for suffering in silence. Because no one knows to give them to you.

I am unwell. There are a lot of us. We're the unfit, the invalids, the chronics. After a while you'd get sick of us telling you we're not good. You would, I promise. And not good compared to what? Compared to our every day? Because there's the good days and the bad days, but the good days are not good, and the bad days are worse. What if you have to live your life as if the bad days that make up your existence are in fact the good days, and what if you have only yourself to compare to because if you compare yourself to the healthy, the well, the fit, the valid, you will simply fall apart.

My fatigue started when I was 13. My depression started around the same time and I wondered if they were connected. I took anti-depressants which helped my depression but not my fatigue. I was given a basic blood test, told everything was normal and was then halfheartedly diagnosed with Chronic Fatigue Syndrome (CFS) but was told it could be any number of things. That was that. I am a prime example of the giant, gaping hole in our medical system. I went through painful sleep studies, misdiagnoses and disappointing trial and error treatments. Of all the doctors I have had, not a single one tried to help me find a solution to my fatigue or rule out every possible reason before blindly calling it "Chronic Fatigue Syndrome." You don't die from CFS, so you get given a handful of sleeping pills and pushed to the side. We're not dying, no, but we're hardly living.

Just recently I found something called the Complex Chronic Disease Program (CCDP) through BC Women's Health and got my doctor to refer me. After a year and a half I started the program and was more "officially" diagnosed with CFS. I was desperately hoping I would not be. You see, CFS is a life sentence. There is no cure. The most they could offer me was the hope that through this program I might come to feel 10 to 20% better. But even that would be a huge improvement. That is the difference between coping with an illness and not. I'm actually one of the fortunate ones. A lot of people with CFS also have Fibromyalgia and are in chronic pain. I'm sure a lot of CFS sufferers don't have access to good health care or families to support them. Despite the fact that it's taken me months and months to write this (the irony of being too tired to write a blog post about how tired you are), I'm sure a lot of them wouldn't have the energy to write about it. Some people with CFS cannot even get out of bed. So I write this for them especially.

Healthy person's brain (Top). CFS patient's brain (Bottom).
CFS is also called Myalgic Encephalomyelitis (wha...?), a ridiculous new name that nobody can ever pronounce or remember but that sure sounds a lot more legitimate than Chronic Fatigue Syndrome. CFS and Fibromyalgia are referred to as Central Sensitivity Syndromes: Central meaning the central nervous system. There is evidence that the sensitivities are caused by inflammation or dysfunction in the nervous system or HPA axis, which is part of the body's stress-response system. CFS often starts with a flu or virus, and just never goes away; they think CFS might in fact be a virus. Psychiatric disorders are also common with CFS (yippee!) possibly because CSS and psychiatric disorders all involve dysregulation of the same neurotransmitters. Even brain scans show a CFS patient's brain is significantly affected, white matter is reduced and the right arcuate fasciculus is significantly abnormal. You don't need to remember all of this information. I just wanted to flood your brain with important medical jargon to prove to you that CFS is a real, biological illness, because believe it or not, some doctors still think it's some sort of myth, like fairies or Donald Trump's taxes.

But the problem is - besides the obvious problem of having an incurable, chronic illness - for most of us it's almost completely invisible to the outside world. Almost. I've noticed over the past few years as my fatigue has gotten worse, the circles under my eyes darkening and starting above my eyes not just below them, as if my body is finally saying this has gone on long enough, we have to show the world what's inside. You see, I'm a good actor. But before you think that every time you've seen me I've just been faking it, hiding my illness behind a mask, that's just not the way it is. When you suffer from something with the word "chronic" as the first word, from chronic mental illness to chronic pain, you have two choices: you can choose to live your life to the best of your ability, to rise above, or you can choose to let it take over - take over your personality, your relationships, your ability to love. You can choose to improve your life in the small ways you are capable of, or you can give in. As my fatigue gets worse I feel more and more like rising above is just plain out of my reach, and instead I'm just desperately trying not to sink.

Let me tell you about my most debilitating symptoms, because you probably don't need me to list my plethora of allergies (if I did, you'd cry), Irritable Bowel Syndrome (although I could talk about bowel movements for hours), Restless Leg Syndrome, back and neck pain, and muscle weakness. Instead I'll tell you about how I could sleep for 15 hours straight and never feel rested - one of the prime indications of CFS. Of course if I don't get at least ten hours then I'm even more tired than normal. It takes me around an hour or two to fall asleep. I wake up frequently, sometimes not getting back to sleep for hours - this is also a symptom of CFS. Yes, you heard that right, one of the symptoms of Chronic Fatigue Syndrome is not sleeping well. It is a sad, sad irony that you want to laugh at but unfortunately laughing takes too much energy so you silently stare dead pan at the camera for five minutes straight. I try to wake up between 11 to 12 pm - on the weekends sometimes I can't get up until 2 in the afternoon as my body tries to put me out of my misery by killing me in my sleep. It takes me at least an hour to get out of bed. This is how I wake up: my head is foggy with exhaustion, my eyes ache and are so heavy I can't open them for longer than a few seconds. I am often half awake and half asleep, having lucid dreams that can be incredibly sad or terrifying. I wake up crying a lot of mornings, my landlady must think I'm insane. I'm often dreaming in a nightmarish way about needing to wake up and not being able to. When I was anemic this was much worse. I would feel my arm reaching for the light but my arm was not moving. I would swear I was wide awake, looking at my phone but my phone lay beside me. I would be calling out for help, but not making a sound. I was a prisoner trapped in my own sleep.

When I'm finally awake, this is the beginning of what I call "pushing myself." Just choosing an outfit is difficult as my brain is constantly going for vacations without me. I stare at my pill container with my hand lifted in the air like a zombie - trying to remember what day it is, which pills I'm taking, what the heck am I even doing, oh right, drugs. My eyes and head ache all day. I live in a constant "brain fog" because my brain, not just my body, is so tired that I have to force myself to concentrate. Though I have perfect vision, my vision is constantly blurry from fatigue. And then there's the un-focusing of my eyes, something I have to physically stop from happening all the time. My thinking is impaired, my memory is impaired, my reflexes are impaired, my speech is impaired. I try to crack a joke, but I just can't find the words. I try to remember what you just said and nod my head yes because I'm tired of trying. Sometimes I feel like I'm blind, deaf AND drunk, only without any of the fun. Driving is difficult because sitting down essentially doing nothing but holding a steering wheel is a signal to my body to give in. I specifically moved five minutes to work because I lived in fear of getting in car accidents for years.

This is my normal tired. Now imagine adding to that: having a few nights of bad sleeps, getting a cold, or that time every month where I shed a part of my body, which if you didn't know, makes you extremely tired - and you can only imagine the depths of fatigue I can feel that you didn't even know were possible. There is not a moment that goes by that I do not feel exhausted, worn out, aching, blurry, less-than-I-could-be, dear-God-just-let-me-sleep tired. I do not get days of reprieve; I have never woken up feeling refreshed in my entire life; I do not know what feeling "rested" feels like and this is in fact one of my definitions of heaven that I can't wait to experience.

These are the physical symptoms, but what is most underrated is the impact being this tired for this long has on your psyche. It is not so much the physical symptoms in a single moment that become unbearable, it is the constant drain on your mind and emotions. The dreams you fear will never come true - how can you find your soulmate if you're too tired to leave the house? How can you take care of a baby if you can't take care of yourself? How can you write books when you can barely write a blog post? - and this, on top of the day to day struggle of dealing with depression and anxiety, is what degrades you, until you feel yourself clinging to life by a thread, clutching at air as your hope disappears. You would think you would just get used to being this tired all the time, but you don't. It is not something you get used to, it is something you learn to bear. But when five years turns into ten and ten turns into twenty and you imagine yourself as an old maid with five poodles (because you're allergic to cats), now not only suffering with this same illness but with all the health issues that come with getting old, you wonder if you can possibly go on. But that is the depression talking and it is fickle as a fiend. I have to remind myself there is always hope for tomorrow. Where in this moment I don't feel like I can manage, the next moment I discover I can. Where today doesn't seem worth living for, tomorrow always is. For all I know, tomorrow is the day I will find something that will make my life easier. "Tomorrow" is the day they find the cure for CFS.

We chronic sufferers don't get flowers, because we fight this every day. We don't get cards saying "Get well soon!" because there is no getting well. And if, by some miracle, there is a way to get better, we are just trying to get through this day, never mind tomorrow, so you can imagine how hard working on this thing called "getting better" is for an illness that they don't really understand and which could actually be any number of other things you have to rule out one by one. It is like asking a bed-ridden man to heal himself. Too sick to get out of bed? Too bad! Now drag yourself to the pharmacy because no one will do it for you. Some people say faith in Jesus is a crutch. Yep. I am a cripple and Jesus is most definitely my crutch! He just happens to be my saviour too, and my closest friend. He is my hope. Without Him, I don't know how I would survive.

Now, if you know me, you're thinking, why have you never told me it was this bad? Well for one, how depressing is this blog post. It depresses me to think about it, let alone talk about it. But I always see you smiling, you say! You're so full of life! You're the life of the party! You're - (okay I'll stop now, you get the picture), it can't possibly be that bad! It is... But the thing is, CFS is not actually who I am, it's a thing I fight. I am a survivor. The real Slim Shady, ahem, I mean Faith, stands up every day, pushes her illness as far out of sight as possible, and shows her face. Which means you probably don't see the illness. It also means she makes it to tomorrow.

So why am I telling you this sob story? To make you feel bad for me? No, there are far worse fates. To desperately get the support that I didn't have for so many years? No, I have that now. I tell you this because I want you to understand, and I want others who go through the same thing or similar health issues to know they are not alone, and to teach everyone else what suffering from a chronic illness is like. I thought for so long that people would just know what it was like to be chronically tired. It astounded me again and again when I discovered they didn't. Because until you are mind-bogglingly tired for a prolonged period of time you do not understand the depth of fatigue your body can handle, the extreme cost on your body and mind, the emotional impact, the relational impact, how it changes everything you do and can't do.

I've gotten better at answering the question, "How are you?" I've gotten better, but still I often find myself lying. I say, "Good!" because I'm happy to see you. I say "Good!" because I think you're asking if I'm good besides my illness and forget that you probably don't even remember I'm ill. But with the people I love and trust, or when I think you should know, I let down my guard and tell the truth: I'm not good. Even if it means you might think I'm always complaining, that I'm a Debbie Downer and start avoiding me - because this is the fear of the chronically ill. I learned that not everyone needs to understand. It's okay, because God knows, and He has not taken it away so He obviously thinks I can handle it. I do not believe God gave me this illness, like some sort of test or punishment, but I do believe He has let me have it for a reason. My dad says it's because I am worthy of it. I am worth refining like gold. This illness can either embitter you or refine you. So I let it refine me so that what comes out shines and encourages everyone around it. Of course my dad is completely, biologically biased, but I like to think it's true. So I try to shine as much as I can, and I try to remember that the more I lift my face up to Jesus, the more my face reflects the light of the Son.

Notice the high and low range limit. See that red line? That's me.
P.S. Just recently I took a hormone test that could possibly change my life forever (no big deal). My naturopath recommended I take a "Complete Dutch Steroid Hormone Panel" to the tune of $400 (I guess the Dutch know their steroids.) So I took the Dutchy's test and whaddya know! It showed my cortisol level is freakishly low and completely out of whack. Cortisol is an adrenal, stress hormone that regulates your energy. My cortisol readings showed I get no increase in the morning to wake me up, have no increase whatsoever during the day to give me energy and then, just when your cortisol is supposed to drop off completely, mine increases juuuust enough to give me a terrible night sleep. FML. (See picture above). It isn't known if this is a symptom of CFS or the cause, but no surprise, low cortisol is incredibly common in CFS patients. The crazy thing is that a study done on CFS patients with low cortisol who took cortisol steroids is very positive. However, they think hypocortisol in CFS patients is the body's way of protecting itself during infection by forcing you to rest. What happens when we take that protection away? No research = THEY DON'T FREAKING KNOW.

So I'm volunteering. I'll be that guinea pig. Once again, I'm doing my own research. Study: "Faith on Steroids." Participants: Numero Uno. Results: to be seen... I'm trying the natural treatment first. It can take six months to a year to notice a difference and I'm trying not to get my hopes up. After years of disappointment, you learn to have lowered expectations at all times - I am probably the most positive pessimist on the planet. If the natural treatment doesn't work, I'll try the steroids, even though they can have some nasty and life-long side effects, even if I have to buy some off that buff guy at the gym. (This is where you say, uhh Faith, I don't think those are the same kind of steroids...) No matter what, this hormone test was the first time that I was able to see medical evidence of my fatigue and it was incredibly validating. This could be what I have been looking for for seventeen long, tired years.


  1. Way to go, Faith! Every journey is different. When I was so sick with CFS and fibromyalgia, I joined a support group for same (after being sick and fighting the symptoms for years) There were not two people alike in that group. I had progressed from getting out of bed to send my kids to school and going back, then being up from 5 to 7:30 at night - to being able to work part time, and that took me several years. I've had people tell me that only folks who have a complete health package get this type of illness, because they aren't really ill - they've just found a way to bleed the coverage. I didn't have such coverage, so that let me out :)
    But I did get (somewhat) better, and I pray you will too. love, Sylvie

    1. Thank you Aunty Sylvia! I appreciate the support! It's so true, every case is so different. And I hope I get (somewhat) (or you know, completely! Let's shoot for completely!) better too!!!! :)

  2. Thanks for sharing, Faith! I hope to be the kind of friend to you that you can vent to and be honest with. You're not complaining, but truthfully answering the question "How are you?" so for that I commend you.

    1. Thank you Gussie! You already are that friend. :)