It’s been a rough week: I did a VO2 max test, a two-day neuro-cognitive test with a neuro-psychologist, a brain MRI and a neurological exam with a neurologist. VO2 max is a short, but intense—at least for ME patients—exercise stress test that is repeated the next day. ME is the only disease in which this test will show a drop in the anaerobic threshold on day 2. My drop was a whopping 58%. I am going to enjoy sending this to my disability insurance company. The test result will be life-changing for me, in good and bad ways. More about this in a separate post.
I have never had my IQ tested and I am very competitive. So, as physically miserable as I was after the VO2 max, I enjoyed the mental challenge of the neuro-cognitive test. It’s hard to gauge, but my feeling is that I did fairly well on that test, even though I couldn’t define the word “palliate.” I did the testing for a number of reasons. One was to convince my disability insurance company that I really am cognitively limited. No worries, I do realize that it’s not like they really care how limited I am; they are just looking for an angle to cheat me out of my benefits no matter how sick I am. Another reason was to find out myself how bad it is. I can push extremely hard cognitively for a couple of hours, knowing that I’ll pay a big price for it, as is typical for ME patients. I pushed so hard during the test that I was very nauseous at times. After the test, I was completely empty each day, nothing left. This is not something I could sustain for 8 hours a day and definitely not something I could sustain for a job that would pay 60% of my prior income. But nobody will be able to claim that I didn’t try hard enough. My integrity is very important to me.
The brain MRI challenged me in a different way. I am very claustrophobic and had an almost complete meltdown right before they put me in the tube—despite having taken Ativan. With the help of my husband, Ed, who was standing by my feet the entire time smiling at me, which I could see in a mirror right above my head, and an awesomely patient imaging crew, I got through it.
My appointment with the neurologist was, in a way, the biggest surprise. I didn’t know what to expect. I didn’t even really know why I was seeing him, except that it was recommended by my ME doctor. People who know me well know that I don’t have much respect for most MDs. In my experience, most suffer from big-ego-no-substance syndrome. Imagine my surprise when this neurologist really wanted to know my story, believed it—I know!—and had all kinds of ideas of what special tests to run. The appointment lasted for 1.5 hours. And, get this: He was a really nice guy on top of it; normal, not arrogant. He didn’t treat me like a high-school drop-out.
It’s been an exhausting week, but after all this, the low point in my week came when I got an email from somebody saying that there are times when she is “low on energy, too, typically on Fridays.” This is somebody who says she read my blog entry, “Don’t Think! Just Do! (Glimpses Into My ME Story)” in which I tried to explain some aspects of what it’s like to live with ME. Did I not say in the piece that every-day fatigue from working too hard or from raising kids, even twins, is not the kind of fatigue ME patients experience? Not even close! Did I not make it very clear that fatigue, the kind ME patients experience, not normal fatigue, is just one of many symptoms, some of which are more disabling than the bone-crushing fatigue that is typical for ME? I did. So, how did this person not get it? I was stumped. I am used to not being able to get this across in conversation. But I thought I kind of nailed it with my written explanation. Apparently not.
I took my frustration to Facebook, which, for the most part, is my only outlet, and posted the following:
“I am not religious, but God, please give me the strength to continue to be patient when others tell me that they are “tired too.” PLEASE!!! Or at least let me come up with a good self-defense story.”
Fist of all, let me say that I am sorry that I brought God into this. I usually speak of the universe when others refer to God because I am, indeed, not religious. I certainly meant no disrespect to anybody.
But the point of my post is that I really, really don’t get it when people don’t get it. Why is this so hard to understand?! A Facebook friend of mine, who also said that she read my prior blog post, then asked, “Sorry to sound ignorant, but what should they say?” This pushed me right over the edge. Here is my off-the-cuff response:
“If they are telling me that they are tired without the suggestion that they feel anything similar to what I feel (i.e., “too”), then, by all means, tell me. Being tired is a bitch. I know, I used to work 65 to 90 hours a week. I am not trying to invalidate anybody’s exhaustion. But to suggest what they feel (normal tiredness from living life) is like what I feel, is like saying to somebody who has pancreatic cancer that they have some growths too because they have skin tags. It’s the suggestion that ME patients only have the symptom of fatigue and that the level of fatigue healthy people experience is anywhere near the level of fatigue ME patients (or other seriously ill people) experience that is crazy-making, at least with people whom I have tried to explain this to before. On any given day, I have up to 20 symptoms and the level of fatigue and these other symptoms sometimes don’t allow me to take a shower or do other very basic things. I have been unable to take Aimee to the park or on a walk for months now. I’d like to argue that this is very different from the fatigue that I felt when I worked 2 days straight without going home or getting any sleep.
Plus, rest doesn’t do squat. I am resting all day long, all week long, all month long, all year long. I still don’t feel better. But if I didn’t rest, I’d feel worse and worse. Imagine feeling like you have the flu all the time for years or decades on end and then having others who have busy and exhausting, but full, lives telling you that they feel the way you do. It’s very, very hurtful because you feel unseen and invalidated and your serious health issues feel minimized. It’s a major double whammy. It worsens the social isolation because the reflex is to protect yourself from these experiences and cut down even more on interactions with others. Anyway, not sure if it’s helpful or even makes any sense. Often I wonder whether it’s possible to try and fit in. Is it worth spending the little bit of resources that I have on trying to make myself understood knowing that I am doomed to fail? Not sure.”
How is any of this not obvious? Is it really surprising that the equating of a normal physical state to the symptoms of a devastating, debilitating illness would be hurtful? I mean, really? Talk about feeling completely unseen. I may not have perspective right now given the level of my physical and emotional depletion and pain. As insensitive comments go, the ones I mentioned are not even high on the list. It’s the ever-present and constant nature of the I-am-tired-too and what’s-wrong-with-saying-that comments that are wearing me down. How often can one bear to hear this? It’s emotionally damaging every single time. I am devastated by the thought that others would believe that I am a whiner and attention seeker. The thought that anybody would think that I would make a big deal out of being tired is deeply embarrassing. How can I have meaningful connections with people who have such a distorted picture of me and my reality? It’s a complete disconnect that may be impossible to bridge. Understanding is a two-way street. I can only provide the information. It is up to others to want to get it.
I am not negating that others have hardships in their lives. I know life is not a breeze for most people, if anybody. This is not about wanting sympathy. This is about not wanting to have my reality denied and invalidated on a daily basis. This is also about asking for what I need and not getting it. I am not somebody who expects any help from others. I hardly ever ask for it (except from Ed), unless I pay for it. But I do request that people be respectful of my circumstances and not trivialize them by likening them to their own, very different situation. Not asking for that much, is it? Every time this request is not honored it reinforces my natural tendency of not asking anything of anybody. Low to no expectations is a much safer approach than being hurt over and over.
What might be the saddest aspect of it all is that my Facebook friend, the one who asked what people should say, may really have wanted to know. But after being inundated with inappropriate comments, many of them worse than the ones I quoted, for almost six years, my tolerance is not what it used to be. I am worn out from being patient with insensitive comments. I can’t afford to continue to spend the limited resources I do have on trying to explain to people who may or may not want to know. It would be “fiscally” irresponsible. Of course, this just worsens my loneliness, which already is unbearable at times.
Just in case anybody is indeed curious about what to say, it’s not rocket science. If you really do want to know, why not just ask me what it’s like? If you don’t want to know, and I can think of many valid reasons for that, that’s ok—really. But please don’t make any assumptions because trust me, they will be wrong and they will be hurtful.
I am not done with my tests. One of the scheduled tests for next week is a tilt table test, the purpose of which is to make me pass out. I wonder what other knock-out punches are waiting for me.