Step 2: Put your life in that box.
Just going through my daily routine, I notice a golfball-sized paradox about the lives of PWCs (people with chronic fatigue)--ironically also the name of my last employer. Despite what normal folks see in our lives (unemployment) and what we also mostly see in ourselves (torpor & disability), I think both of those perceptions come from a hall of mirrors. I might be wrong, but when i think about a day in my life, these are some common themes:
It takes 2 hours in the morning just to finish my "routine." Apple cider vinegar, 30 min, lemon juice & olive oil, 30 min parasite herbs & adrenals & amino acids & exercise, 30 min. digestive enzymes & I win a few slices of brown rice toast & eggs. The breakfast never changes, and I never miss a beat. By the time breakfast has come around I'm caught up with the going-on's of the online health community despite my persistently groggy state. The rest of my meals consist of the paleo diet.
We're practically Spartans (without the washboard abs), and we can't remember the last time we indulged in a party for the taste buds. Depending on the day, I may infer that if I lift weights this morning, I'll end up waking up 3-5x in the of the night due to lactic acid & ammonia buildup, but I know that I can't afford to let my body de-condition. I'm constantly scanning my body like a quarterback until the moment I decide I'm gonna exercise & pay the price. Of course, all my cost-benefit analysis usually ends up being for nought cuz my body can flip the switch at any moment & make me regret doing 10 pushups for the next 2 days.
Our days are a series of educated guesses. Despite having relatively no clue about what is truly going on in my body, I do my best to understand. Many days it feels like a dead-end, but I'll go the distance anyway and read about different mechanisms on a graduate biochemistry level until the sentences start looking disjointed & the words become jumbled text.
We push through. But at the very moment I notice I'm trying to push through, I know it's time to scout out the Gitmo fence. It's the point of no return..if I pass it, I get shot by the Cubans..err CFS...and I'm done for the rest of the day and maybe tomorrow. Some days the fence is closer..some farther, but I still have to take an educated guess. The reward for measuring it right is that I get a little closer to a unified understanding about mitochondrial dysfunction tomorrow.
Healthy folks: Imagine your boss telling you to work your tail off if you ever wanna get promoted...and then demoting you for breaking too much sweat at the office. A friend calls and wants to hang out. I have to reschedule because I didn't square away a reserve of energy for socializing today. But tomorrow...Tomorrow I'll be ready. To make it happen, I wake up tomorrow and I don't do anything. I won't research even though I'm this close to memorizing oxidative phosphorylation. I won't exercise tomorrow even though it's pull-up day. I stay relatively quiet the whole day because this conversation might go the distance and I need the battery pack in my larynx. I get there in my jetpack, and I'm freakin peppy le pew. I make it to 3 hours of coffeehouse mind-jabbing with my friend and my voice gives out. I come up with an excuse to leave like my family's waiting at the dinner table.
To you, that was just a meet-up on a whim. To us, that's a Grammy's acceptance speech that resulted from careful preparation & discipline starting from the moment when we decided to meet up. I'm seeing a few of my doctors this week. They are arguably some of the best doctors in the country, and each offers me opinions that I take to heart. In the end, like so many other headstrong PWCs that have actually improved, I know with all my heart that I can't rely on the word of any single one. I take in the most professional medical advice in the world and combine it with my own research. I take the greatest common denominator and give my body the best possible chance to recover.
Most of us are officially unemployed but we know what our jobs are. We're all project managers. *Contrary to what many patients think, no amount of financial resources takes away the responsibility to learn how to get well. Not for those with CFS. There's simply too much going on, and some of the best CFS doctors in the world will tell you "You need stem cells or bust," when you've been sick for less than 2 years and are still in your 20s. I think that's rubbish, but I've done enough research & talked to enough recovered patients to be able to say that.
"Contemplate being surrounded by the conditions you wish to produce." - Wayne Dyer. I don't think many of us will admit this, but I'll go ahead and say it: we're afraid of getting well. We've been so sick for so long that we can't imagine being well again. The pace of our old' lives is so foreign it's scary. We're scared of relapsing because we think remission is possible but not a cure. If you don't believe me, close your eyes and imagine yourself being healthy. This is what I expect to happen: 1) you can't even imagine it 2) It literally makes you afraid. Contemplate being healthy again & embrace the thought. If you don't, your body won't.
I think we don't give ourselves enough credit. I trust that most patients go through the yins/yangs, ups/downs, vigilance/effort that I described above. We might not be able to hold down a steady job, but managing this epic project of getting well all by yourself is a a herculean task. Instead of beating ourselves up over what we can't do, the question we should all have for ourselves is (and I don't mean this in a boastful way at all):
Just how easy will our lives get when we recover?
Just going through my daily routine, I notice a golfball-sized paradox about the lives of PWCs (people with chronic fatigue)--ironically also the name of my last employer. Despite what normal folks see in our lives (unemployment) and what we also mostly see in ourselves (torpor & disability), I think both of those perceptions come from a hall of mirrors. I might be wrong, but when i think about a day in my life, these are some common themes:
It takes 2 hours in the morning just to finish my "routine." Apple cider vinegar, 30 min, lemon juice & olive oil, 30 min parasite herbs & adrenals & amino acids & exercise, 30 min. digestive enzymes & I win a few slices of brown rice toast & eggs. The breakfast never changes, and I never miss a beat. By the time breakfast has come around I'm caught up with the going-on's of the online health community despite my persistently groggy state. The rest of my meals consist of the paleo diet.
We're practically Spartans (without the washboard abs), and we can't remember the last time we indulged in a party for the taste buds.
Depending on the day, I may infer that if I lift weights this morning, I'll end up waking up 3-5x in the of the night due to lactic acid & ammonia buildup, but I know that I can't afford to let my body de-condition. I'm constantly scanning my body like a quarterback until the moment I decide I'm gonna exercise & pay the price. Of course, all my cost-benefit analysis usually ends up being for nought cuz my body can flip the switch at any moment & make me regret doing 10 pushups for the next 2 days.
Our days are a series of educated guesses.
Despite having relatively no clue about what is truly going on in my body, I do my best to understand. Many days it feels like a dead-end, but I'll go the distance anyway and read about different mechanisms on a graduate biochemistry level until the sentences start looking disjointed & the words become jumbled text.
We push through.
But at the very moment I notice I'm trying to push through, I know it's time to scout out the Gitmo fence. It's the point of no return..if I pass it, I get shot by the Cubans..err CFS...and I'm done for the rest of the day and maybe tomorrow. Some days the fence is closer..some farther, but I still have to take an educated guess. The reward for measuring it right is that I get a little closer to a unified understanding about mitochondrial dysfunction tomorrow.
Healthy folks: Imagine your boss telling you to work your tail off if you ever wanna get promoted...and then demoting you for breaking too much sweat at the office.
A friend calls and wants to hang out. I have to reschedule because I didn't square away a reserve of energy for socializing today. But tomorrow...Tomorrow I'll be ready. To make it happen, I wake up tomorrow and I don't do anything. I won't research even though I'm this close to memorizing oxidative phosphorylation. I won't exercise tomorrow even though it's pull-up day. I stay relatively quiet the whole day because this conversation might go the distance and I need the battery pack in my larynx. I get there in my jetpack, and I'm freakin peppy le pew. I make it to 3 hours of coffeehouse mind-jabbing with my friend and my voice gives out. I come up with an excuse to leave like my family's waiting at the dinner table.
To you, that was just a meet-up on a whim. To us, that's a Grammy's acceptance speech that resulted from careful preparation & discipline starting from the moment when we decided to meet up.
I'm seeing a few of my doctors this week. They are arguably some of the best doctors in the country, and each offers me opinions that I take to heart. In the end, like so many other headstrong PWCs that have actually improved, I know with all my heart that I can't rely on the word of any single one. I take in the most professional medical advice in the world and combine it with my own research. I take the greatest common denominator and give my body the best possible chance to recover.
Most of us are officially unemployed but we know what our jobs are. We're all project managers.
*Contrary to what many patients think, no amount of financial resources takes away the responsibility to learn how to get well. Not for those with CFS. There's simply too much going on, and some of the best CFS doctors in the world will tell you "You need stem cells or bust," when you've been sick for less than 2 years and are still in your 20s. I think that's rubbish, but I've done enough research & talked to enough recovered patients to be able to say that.
"Contemplate being surrounded by the conditions you wish to produce." - Wayne Dyer. I don't think many of us will admit this, but I'll go ahead and say it: we're afraid of getting well. We've been so sick for so long that we can't imagine being well again. The pace of our old' lives is so foreign it's scary. We're scared of relapsing because we think remission is possible but not a cure. If you don't believe me, close your eyes and imagine yourself being healthy. This is what I expect to happen: 1) you can't even imagine it 2) It literally makes you afraid. Contemplate being healthy again & embrace the thought. If you don't, your body won't.
I think we don't give ourselves enough credit. I trust that most patients go through the yins/yangs, ups/downs, vigilance/effort that I described above. We might not be able to hold down a steady job, but managing this epic project of getting well all by yourself is a a herculean task. Instead of beating ourselves up over what we can't do, the question we should all have for ourselves is (and I don't mean this in a boastful way at all):
Just how easy will our lives get when we recover?