Health & ME/CFS, This Crazy Life


Like most females in America, I became aware of the intense pressure to stay thin when I hit puberty. I wanted to be lithe & graceful & tall like the dancers involved in Drama with me were.

Instead, my breasts grew large, and I stayed short, at 5′ 5″. Still, I wanted to be rail thin, and I remember when stretch jeans first came out, and laying on my bed sucking my stomach in so I could zip them up. Skin tight was “in”.

I gained weight with my first child, whom I had at age 20. But I bounced back, for the most part. I was active, riding horses, tending sheep & goats, and gardening. I didn’t care quite so much and for a while was okay with being between 125 & 150#.

Then came ME/CFS, and with it hypothyroidism. I ballooned up to 200#, and then spent many years struggling to keep it between 150 & 170 pounds.

I remember being so excited to fit into size 14 jeans again, then size 12’s.

Two years ago, give or take, I started losing weight. For the most part, this seems to be from a serious lack of appetite, nausea from non-stop migraines, and eliminating soy, dairy & gluten from my diet.  I’m simply not taking in enough calories.

Last Fall I was both excited and a little dismayed to fit into a Junior’s size 7 skinny jeans.

But yesterday, I left the dressing room at Target shocked & shaken to the core. I had tried on some Junior’s jeans, and now, size 5’s fit. I didn’t care for them, though, so decided to try on some Misses jeans. At 48 years old, there are many who would say I had no business shopping in the Junior’s department, anyway.

The Misses’ size 6’s were too big.

Then I went back & got size 4’s, and just for kicks, size 2’s.
The size 4’s were also too big.

And the size 2’s?
A size I never, ever, would have thought I could fit into again?
They were so loose I could take them off without unbuttoning them. I tried another “fit” in size 2, but they were the same. Too big.

I walked out of the dressing room and met Rhiannon, who looked at me with alarm, and asked what was wrong. I had a hard time even telling her.

24 hours later, I am still reeling from the shock. I spent roughly 35 years of my life wanting to be just one size smaller than whatever I was, and struggling to stay out of the plus size department whenever possible.

Now, I weigh a shocking 111#. And it has not been healthy weight loss. Muscles have faded away along with the fat. A few pockets of fat remain, here and there, and stretched out skin is struggling to tighten up.

Taking a shower, and seeing my naked body in the mirror, has become a traumatic experience.

I was never one to go to a gym, or work out. I didn’t need to, when I was healthy – I was too busy struggling to take care of animals that outweighed me, hefting 50# bags of horse feed, cutting & chopping firewood, riding horses & hiking.

But now, just looking in the mirror is overwhelmingly painful. The outline of bones show starkly in my shoulders and upper arms. Collarbones protrude & ribs are clearly visible on my chest.

And I keep losing, despite doing everything I can to stop it. I eat avocados and nuts and eggs, and drink coconut milk (high in medium chain fatty acids) and use coconut oil in lots of things.

I never, ever, would have thought I would look this way, or have a problem like this. Never.

I am weak & frail in a way I could never have imagined.

For the first time, I’m afraid. Not for me, but for Rhiannon. She’s nowhere near ready to lose me. But a quiet voice in the back of my mind keeps saying I need to get ready, and get her ready. Re-write my will, and clean the disastrous mess that is my house, so it doesn’t fall to someone else to do it. Given I barely leave my bed, that’s not likely to happen.

There should be tears. There ought to be. But I just don’t cry anymore. I think I’d feel better if I did.

There is a part of me that’s in deep mourning, for the lost strength of body I took for granted so long.

Another part of me, deep inside, has gone very still & silent. I don’t want to talk. I just want to stare out over the mountains, and let this sink in.

I feel like Alice did when she fell down the rabbit hole. All because I looked in the mirror, and tried on size 2 jeans.

This is so surreal.

10 thoughts on “Dismayed”

  1. Wish I could lighten your one load by giving you about 70 lbs. so I could finally be nice & thin again, but I can’t. That is meant to be funny, but there is nothing funny with what you are dealing with, friend. Perhaps making some healthy shakes or ?? I don’t know. I know it is hard eating when you feel so lousy with horrible headaches. I feel plain horrible, but I still love to eat & losing wt. won’t work for me, even following W.W. I have your first problem you explained, in not being able to lose the wt.

    Wish I had that magic wand for you & me. I know you had to change your diet so many times in so many ways, but you know what would taste good if you could eat it that would be substantial for you. I feel for you, & I wish you hadn’t tried those clothes on to become so concerned, but you had no idea it would lead to that depression. Pls. hang in there friend & know how much I care about you & for you as well. I just wish there were care homes for all of us where we were given healthy diets, & all our stressors taken away. I hear you about your house. How can we function any better to try to take care of anything?

    No real words of wisdom except to know that hopefully you will regain some strength in the near future if they can stop your headaches. Then, I would hope that you would get your appetite back & enjoy food once again. At least you do eat healthy with the little you are able to eat. Hugs friend. Have you tried Boost or those drinks for ill people with lots of calories? I think you can get them in dietetic drinks, & maybe put fruits in & powdered protein? I know you’ve tried so many things all these yrs. Just know you are cared about & want to see you feeling better so you can be happy again, or at least much happier. 😦 Big gentle hugs to you Ash, & just pls. know I do care about you. Love, Dale


    1. Thank, Dale. I do try to make everything that goes in my mouth count – even make my Bengal Spice tea with half coconut milk & half water. Rhiannon makes sure the fridge is stocked with boiled eggs, so I can grab a protein containing snack easily. My mom is dedicated to Ensure, but so far the ones I’ve found either rely on milk products for their protein content or soy, and as I work at trying to figure out the migraines, soy seems to be an issue.
      Eating anything seems to be an issue, really. I have to eat very small quantities very frequently, as anything like a real meal sends my gut into bloat & severe nausea stage. So I graze through the day, eating a handful of nuts here & there, an avocado once a day if I can manage it, sunbutter (like peanut butter but made with sunflower seeds) on a piece of gluten-free bread, etc. Rhiannon makes the best roasted chicken, but that’s hard for me to handle, so I nibble here & there on it.

      If we could just get the headaches & migraines to stop, a lot of the problem would go away. But so far, no luck. I saw my neurologist Monday and she recommended some med changes, and maybe those will help.

      You know, when I went back out to get the size 4 jeans, I really couldn’t conceive they would be too big. I got the size 2’s just to see how tight they would be. Surprise!

      Its funny how something little like trying on jeans can cause such an emotional fallout. But I was already upset after taking a shower the night before & seeing my bony shoulders, arms & chest in the mirror.

      I’ve had many a meltdown in dressing rooms before, but always for the opposite reason – bathing suit shopping used to be the *worst* due to large breasts, and then large everything. Jean shopping was always a bear because I’m very short-waisted.

      I’ll keep trying at eating as much as I can, as high protein & even high fat (good fats) as possible. Thank you for being so supportive – it means a lot to me!
      *gentle hugs*


  2. I have CFS myself, but just wanted to make a quick comment. This probably won’t make you feel better, but clothing manufacturers have changed their sizes a long time ago. I’m 5’7″ and about 130. Have always been around that…after my teens was never below 125. Anyways, back then I always wore size 9/10. Now today at age 37, I can go into a store with juniors sizing and sometimes fit into a 7. They have definitely changed things. Of course, this does not address your true concern about losing weight, but I just wanted to let you know this. I wish you well.


  3. I lost a lot of weight one year. I’m nearly 5′ 7″ and I went down to 95 pounds. It was scary. It turns out I had a gallbladder problem that kept me from being able to eat much, especially animal proteins and fats. I’m still having some digestive problems but have been able to gain my weight back (and added a few extra pounds for good measure). Eating something that my gallbladder didn’t like also gave me headaches. This might be worth looking into.

    There have been times when I, too, felt like I was dying. I mentally said my goodbyes and prepared to leave this world. It turns out I still have a lot of living left to do.

    Hang in there, Ash. One day as you stare at the mountains you may begin to see again an astonishing beauty that is full of life and promise.


  4. Wow, thanks for all the great replies!

    Jocelyn, just read your wonderfully honest blog post – thank you for sharing that with me! Its good to know I’m not the only one with similar thoughts & feelings surrounding body image & *distressing* weight loss. Our experiences are remarkedly alike in many ways. I have a hard time just eating anything – very little hunger, or desire to eat, and often actually a feeling of revulsion at even the mention of food. I, too, eat small amounts spread throughout the day.

    My LLMD says she’s had at least two patients with bartonella who described the same feeling and who came to her very anorexic – 80#. Apparently, these two started IV antibiotic treatment for the bartonella about 3 – 4 months ago, and have begun gaining weight, back over 100# each. I will keep my blog updated as to how that goes – if there really is a connection, maybe that’s the key to returning both of us to a more healthy state & weight!

    Myzeoexperience, thank you for the comment – I’ve heard about this “re-sizing” before. I guess as more & more Americans have obesity problems they didn’t want to lose out on valuable customers! And of course it can vary from manufacturer to manufacturer, too. Sometimes I think they just want to make clothes shopping as difficult as possible!

    Meg, I, too, have had gallbladder issues, and after some severe bloating incidents, they took mine out back in… hmmm… around 2000, I think. Didn’t stop the bloating & digestive issues. I take a rx pancreatic enzyme mix, but malabsorption is still a problem, as is leaky gut syndrome.

    Actually, from what I understand, malabsorption & leaky gut syndrome are very common in almost all ME/CFS/FMS, etc patients, though many don’t know it. And leaky gut leads to increasing numbers of foods you are “sensitive” to. You may not even know it without giving a trial of eliminating a food for a couple weeks, then trying it again & watching for how you feel.

    One thing I discovered is that if my gut is unhappy, whether because of eating something I don’t tolerate anymore, or eating something that causes a lot of gas, or constipation, etc, that it either gives me a headache or worsens the one I already have. I think giving up cheese has been the hardest thing of all, but I really suffer if I just can’t resist a couple bites of the top off one of my daughter’s pizzas (can’t eat wheat either, so no crust allowed).

    I wish for all of us a return to wellness, or at least some small improvements, anything to make this more bearable. But lacking that, at least we have each other to understand what healthy people cannot, and I surely appreciate all the support!

    *gentle hugs*


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