This writer’s battle with CFS, food, stress, and no exercise

CFS, food, stress, lack of exercise

CFS (or ME or ME/CFS or CFIDS or…) brings along all of the problems of chronic illness, and a few unique ones of its own: crushing fatigue, brain fog, pain, post-exertional collapse (I refuse to use PEM = post exertional malaise – malaise is a ridiculous term for what happens; it means ‘feeling slightly ill’), and a whole host of medical problems that vary and have names like ‘POTS’ and Orthostatic Intolerance (can’t stand to stand). If you have it, you already know; if you don’t, it would take too long to explain here.

There seem to be two kinds of CFS folk at the extremes (we have both in our support group): the ones who have gastric problems, and can barely keep enough down to hold body and soul together; and the ones, like me, for whom CFS means an increase in weight.

Think about it: there you are, no energy, in pain, stressed, and in a state of brain fog. Your body knows a few things: eating provides sugar to the bloodstream, which the body uses for energy. If you have CFS, you know the state I mean. (If you don’t, think of how a candy bar can give you some quick energy.) So the body fights hard to get you to throw it some of that sugar, so it can get some energy. If that worked, we’d mind the weight less – but it doesn’t work, so the body keeps trying the easy out: eat something, preferably with sugar.

The no-real-exercise capacity problem

The complete lack of the availability of exercise is a huge component to this. If you can’t move, you can’t use the built-in mechanisms that govern input/output ‘naturally’ in well-balanced animals: it doesn’t work without a minimum amount of exercise.

If you can’t move much, and none of it can be aerobic, you don’t use as many calories. Your body doesn’t understand that: it wants more than it can use (ask any retired football player with a huge paunch that used to be muscle: appetite stays – but you don’t work it off any more).

If you can’t just go for a walk – you lose the stress relief inherent in blowing off some steam in a ‘healthy way.’

NOTE: For most of us, GET (graduated exercise therapy) is a disaster – following an ever-increasing pattern of exercise inevitably leads to relapses that are worse than when we started. Carefully self-monitored exercise is fine – if you’re prepared to drop everything as soon as your limits are approached, and live with the unpredictability of never knowing what today’s limits will be, and using your experience to know when not to exercise at all. Overdo it – you pay. Period.

Metabolism is not your friend any more

In addition to all that, there seems to be a very inefficient metabolism going on there – your body stores more than it would under normal circumstances, and you may need to eat more to get the nutrients you can’t live without.

‘Normal people’ regulate appetite normally, whatever the hell that means. Sick people – people with CFS and huge stresses in their lives – and with little ability to make good decisions because we’re in a fog half the time, people for whom decision-making is a huge chore most of the day – we have to regulate appetite with the least efficient mechanism there is: will power.

Why least efficient? Because you must maintain total control over input, when stressed AND hungry AND brainless, every moment you are awake. Healthy bodies do this automatically, with little voluntary control.

Being sick means weight management gets out of whack

Sick ones misread all kinds of cues. Give me one five-minute period and a plate of Christmas cookies, and I can ruin five days of 24-hour total control. Because the body wants, and I can’t fight it any more.

If you have ever been heavier, your body has a reserve of storage – empty fat cells – which are literally starving: you body fat manager (some little idiot in your brain) knows ONE task: keeping the stores full (and making more stores) – for the coming famine. You can’t argue successfully with your BFM; you can only defeat him by stealth.

None of the above are valid excuses. They are statements of fact. Data. The things you have to battle when you are both ill and have a tendency to put weight on. (I leave the other CFS subgroup – people who have such gastric troubles eating that they’ve basically given up on trying – these folks are the other face of CFS: horribly thin).

How I manage, sort of

I avoid carbs, because I am a machine which turns carbs into fat. Dunno why or how, but if I eat a ‘balanced diet’ I am hungry all the time and put on weight at a steady pace, and have a setpoint for weight somewhere in the 240-260 lb. range, far too high for my joints. Plus I hate the way I look in photos, but that’s just aesthetics. I can just avoid cameras for the rest of my life, and that would be fine.

I can lose weight – on a diet of mostly protein and 800 calories a day of it (DISCLAIMER: be very careful – this diet REQUIRES supplementation of potassium or your heart will stop – and probably should be medically supervised). I did that for a year, removed 65 lbs., and looked reasonable – and then, slowly over the next year, 20 of those lbs. came back. I’m doing it again now.

I’m not doing it for the dratted aesthetics, but for my joints – a second back surgery was recommended and I said not on your life, walked away from the orthopedic surgeon, did yoga for a year FIRST, and then took the weight off.

But it is darned hard.

The new attitude to acquire

I have to find a way to exist. The CFS is not going away. My brain on carbs works even less well than usual – which is hell on the writing.

The only component of the system I haven’t attacked in a systematic way is my attitude. I’m hoping that’s where the key lies.

If I can identify what things make me want carbs, and find a different way to deal with them.

If I can identify what causes stress, and find a different automatic action that I use consistently before eating in reaction to stress – it has to be automatic, because depending on willpower JUST at the moment when willpower is lowest is a strategy for fools – maybe I can keep the creeping pounds off, and make the weight loss worth the effort.

Don’t ask me to get more exercise: I can’t walk around the block.

Don’t ask me to eat 800 calories permanently – with time off for good behavior occasionally.

Don’t ask me to eat fewer calories daily than I need – being hungry all the time isn’t much fun.

Don’t tell me to reduce stress in my life: being chronically ill ADDS its stress to the normal stress of life; I deal with more stress than ‘normal’ people on a daily basis.

There are glimmerings of a solution

I can hold it at bay a bit if I don’t eat ANY carbs.

I can hold it at bay a bit if I grab a protein shake instead of food. An Atkins bar is for true emergencies: immediate, but with more fat than the shake.

I am learning that taking time for a nap is essential – instead of eating something and soldiering on. I hate naps – I’m not two years old. Do it anyway.

I am dropping everything I can from the To Do list – my standards are so low for housekeeping, for example, that world-champion Limbo dancers couldn’t get under that bar. And I don’t care any more.

I have dropped all guilt over failures – guilt only drives you to eat more. Guilt is very stressful.

I systematically evaluate all stressors to see where I can negate their effects. If this is selfish, so be it.

I want to write, dammit, not monitor my body weight.

‘Natural’ doesn’t seem to work. That switch is set to ‘OFF.’

I’ll let you know how some of these strategies work, but I have to change something in me, permanently, or fight this weary battle for the rest of my life.

If I could get away with just eating whatever I wanted whenever I was hungry, and weighing what the good Lord set me up (and previous life – all choices have their consequences), and still have the energy to WRITE, you can be sure I’d do that.

But I can’t; the next best thing is to use my data and FIND THE SOLUTION, and deep inside my head is the only place left to explore and conquer. Assuming I have the energy to do so – wish me luck.

Working strageties welcome – if they fulfill the caveats above.


7 thoughts on “This writer’s battle with CFS, food, stress, and no exercise

  1. naleta

    I do understand about trying to use will power when you don’t have any. I’m just lucky that even though I have the metabolic syndrome that includes thyroid issues and Type II diabetes, my system is responding well to a low-carb lifestyle. My appetite suppressor still works, mostly. I had a very busy week with snow and ice removal (my husband can’t do any of it, so it’s all on me), and one 12 hour shift at work. I refused to work this weekend and am now starting to catch up on my internet reading. I’ll have to go out and clear last nights snow in a few minutes, but I wanted to let you know that I am catching up with your posts. Reading your blog reminds me that even though my shoulder is complaining, I still have it better than a lot of folks.


    1. Alicia Butcher Ehrhardt Post author

      You work too hard – and I’m so glad you can, if you choose to or have to. There is a joy in being able to do that – I remember it well – I used to be the strong one, the one who would tackle any job.

      The posts will be there when you have time – get your rest, so you can take on the world again when you’re ready. Low carb does seem to help with appetite – the minute I start eating sugar, I’m starving all the time – and it takes me four days to clear the junk from my system. A steep price.

      Take the shoulder seriously: the folk remedies – REST, ice, heat, anti-inflammatories – all work. I spent this morning with an ice pack – still – from last Wednesday’s snow removal. But I’m still smiling – I did it!


  2. disabledcyclist

    You know,I always read (but rarely have much experience or knowledge on most of the subject matter,so…),but rarely comment (this may actually be my 1st or 2nd ever). I just wanted to tell you since I rarely comment on any blogs….wow…and tho it always went without saying,your being counted as an e-friend I appreciate,I’ll say it after reading this one,you are in our prayers,my friend,and I greatly admire your strength and fortitude/attitude 🙂

    The DC


    1. Alicia Butcher Ehrhardt Post author

      Thanks, DC – I find it incredibly supportive when I see you’ve stopped by and read the latest scene. Your comments are always welcome.

      AND – I’ve learned a bunch from your blog (hint: write more).

      I don’t find myself particularly admirable – we all live with something, and do the best we can. Your other choice is to whine. Believe me, I would if it helped.


      1. disabledcyclist

        LOL (on the whining comment),trust me,my friend…I may not would whine,but I’d probably complain if it helped sometimes,same difference 😛 Thanks for the (very) kind words,my friend,I hope your weekend is going well 🙂



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