Annie, Janet, Sharon, me, and Susie. I’d chopped my hair off this spring to play Rosalind in _As You Like It_.
I always wanted to have great legs.
The picture at right is of my mom (center), her sisters, and me, in 1993. As you can see, my mom has great legs. Her three sisters have great legs. Their older brother probably has great legs too. (I’ve never thought to check.)
I, however, from adolescence on, was perpetually unhappy with mine – my thighs in particular. My mom’s were slender. Mine were not.
Mom and me on the way to California in August 2003. Mingus is sitting unhappily in that carrier I’m cradling. This was a running-20-miles-a-week figure for me.
Mostly with that as my motivation, I was from the late 80s to 2004 a yo-yo dieter, registering every weight from 117 lbs. to about 145 lbs. at least twice, and more often oscillating from the high 120s to the high 130s. It seemed like I’d gain a pound if I so much as looked at a brownie. I had to battle mightily to keep the scale steady. In 2002, I bought a treadmill, and that made it possible to consistently get the amount of exercise in I had to do to keep at the weight I wanted to be, which was the mid-120s.
No matter what the scale said, though, I was never happy with my legs. Even at my thinnest, I just didn’t like their proportion to the rest of my body. Shopping for pants was something I was only able to deal with infrequently and with a major emotional girding of the loins. (Sorry.) And swimsuits? Forget it. I favored grandmotherly skirted styles, and then boyshorts, when they came into fashion. I think it’s fair to say I had a complex about my thighs.
October 2003, out in front of our apartment in California. I weigh about 128 lbs. here. This is one of the last pictures I have of me well.
And then I got sick.
I had been running three to five miles a day to keep my weight under control, and I was immediately unable to exercise at all. But strangely, six months into the illness, without dieting or exercise, I’d dropped from 128 lbs. to 118 lbs. (Doesn’t that sound like a too-good-to-be-true fad diet plan? Get sick! Lose weight! No dieting or exercise!) 118 lbs., for me, was a running-thirty-miles-a-week-and-eating-nothing-but-carrots weight. I’d never lost weight without trying – and now it was falling off me.
I had to buy all new clothes. I was swimming in my pants, and all my shirts’ shoulder seams had begun to creep down my arms. I remember standing in a dressing room at Banana Republic, realizing that all the sizes I’d pulled from the racks were too big. I asked a salesperson to bring me smaller ones, and she remarked how lucky I was to have such a problem.
I started hearing that a lot. “Lucky you, I bet you can wear anything.” “Lucky you, you’re so skinny.” I didn’t feel lucky. The one upside of developing a 24-inch waist was that I was able to buy a lot of beautiful vintage clothing that nobody else could fit into. My pals at one retro emprorium even started putting everything my size that came in on a dedicated rack for me.
November 2004. Six months in, ten pounds down. Remember these jeans styled with a belt sander? Good times.
With the change in my figure, I suddenly had a window on an experience that was entirely new to me. When you’re an average size, nobody really notices or remarks upon your averageness. When you’re really skinny, you become an object of curiosity and comment, and there’s this whole set of assumptions that people make about you. People think you must not eat very much. That you must have amazing self-discipline. That you’re thin because you stick to a diet plan in a way that few people are able to. That you’re thin because you’re doing things “right.” And worst of all, that you’re somehow more virtuous and “better” than people who weigh more than you do. And none of those things were any truer of me than they had been before I became suddenly thin.
I realized that before I got so thin, I was guilty of believing every one of those things about thin people. Sometimes, when people would launch into the litany of my amazingness based on my body shape, I’d try to tell them I hadn’t always been so thin, that I was sick, that nobody could figure out what was wrong with me, that I couldn’t seem to keep any weight on, no matter what I ate, that I would take every pound back and more if I could be well again. It rarely registered – I once had somebody say, “I wish I could get sick and lose weight!” I pretty quickly stopped trying to explain myself, and just let what felt like ill-gotten compliments be heaped upon me.
May 2005: 116 lbs. These are the same pair of 7 for All Mankind A-pockets as in the October 2003 picture above. right. As you can see, at this point, I could pull them off without unzipping them.
So why did the weight fall off? I think there are a few possibilities. There are people who think ME/CFS has an enteroviral connection. I think that’s possible. I did get something that like food poisoning back in Chicago in 2004 and very shortly after that, the whole thing kicked into high gear.
I think that that, or some other mechanism, altered my gut microflora when I fell ill, reducing the efficiency of my body’s processing and absorption of calories, and that’s why I started losing weight, despite increasing my caloric intake. I guess beforehand my body must have been ruthlessly efficient in that respect. It always felt that way.
There was a point in the fall of 2007, when I was getting precipitously worse, when my system just did away with digestion entirely and started passing food through virtually unchanged (sorry). I began losing weight even faster and was quickly down to 107 lbs., a weight I’d last registered around age 11 or 12. My doctor at the time started me on betaine, which helped replace the stomach acid I wasn’t making, and later Dr. Cheney recommended I take pancreatic enzymes (PDF), because I wasn’t making those either. Both supplements helped stem further loss, so I think that indicates both things were, indeed, a problem.
The other strange thing that happened, which might have contributed to the loss, was that my attitude toward food totally changed. I had always really, really loved food – I mean, I loved it so much that I made it my career. I was the type of person who was always thinking of what I was going to eat next, and when I could eat it, and I definitely struggled with my appetite.
Before I fell ill, if there was food in front of me – like chips or bread at a restaurant – I couldn’t seem to not eat it. My always-slender mother could do that, and I never could understand how it was possible. But when I got sick, all of that appetite melted away in the strangest way. I stopped thinking about food so much. I could pass up a slice of cake, or push the chips away. I remember, years after I fell ill, watching Chimp’s and my wedding video. I recall seeing how much I was clearly enjoying attacking a piece of cake – and I hardly even recognized that person. I just didn’t care about food in the same way any longer. It was an enormous and strange personality change to experience. What did that? I still don’t understand it, but it seemed like something must have been different about my gut, my brain, or maybe both.
Taken by Chimp, June 2011.
Once I became truly bedridden at the end of 2007, my body changed still further. Unable to walk, my muscles really started wasting. I also lost my very defined waist, which had always been a point of pride. For a while after I became bedridden, I tried to keep my weight up, but eventually I realized I was replacing muscle weight with fat weight, and so I’ve let it fall as it will.
At this point, I weigh about 111 lbs. Even at my present weight, I could stand to lose some of the fat I’ve gained around my middle. I hope to do that if I ever get well enough to really walk again. And at right is the current state of my legs. They are quite thin from muscle atrophy – and because of this, I’ve learned something about what made those thighs that I hated for so many years look the way they were.
They weren’t fat – they were muscular.
No Poster Girl 
LOVE LOVE LOVE YOU!!! You are my hero…The strength it takes to write like this is amazing! I am so glad we met and have stayed in touch. I am awed by your courage.
xoxoxo
Syn-D
Thanks, Syn-D! I don’t feel terribly heroic…it’s just what life is for me. Most people in the same situation would do the same, I think.
I have very fond memories of the one time we went out running together, when we both happened to be visiting mom. I would really enjoy being able to do that again or even be able to correspond about run times/distances with you.
I have those same fond memories. I’d love to be able to run again, and share it with you. But forget that, I’d be happy just to be able to go back to Muncie for Christmas.
I’ve always been chubby. I gained weight when I was thirteen and it has been a never ending battle with it ever since. Just before I got sick my doctor had me fill out a survey on diet and exercise and I totally flumoxed him. Because I was training for figure skating competitions I was either on the ice or in a gym six days a week and eating really healthy (organic, whole grains, low sugar, lots of raw fruit and vegetables). I had low blood pressure and low cholesterol. However, I was 220lbs at 5’2″. He couldn’t wrap his brain around it. He just looked at me and said “you’re doing everything right.” Of course being 48 I had long given up on the idea of being 150lbs I wanted to be and just ate right and exercised doing things I loved.
Once the CFS hit, initially I lost 10lbs of muscle then gain 30lbs of fat. It stopped for a while but now it is slowly creeping upwards. I eat way less than I used to and still eat pretty healthy but the pounds keep adding on. Of course I’m housebound now and exercise of any sort is out of the question.
Like you I am totally amazed by the assumptions that people make just because of body shape. They think I must eat donuts night and day because of my body size. When they find out what I really eat I often get “you eat healthier than I do”. Since I’ve lived with this for decades I’ve pretty much thrown in the towel in the diet battle. I’m just scared that I’ll keep gaining weight and get really huge before the CFS lets me exercise again. Being sick sucks!
I’m glad he believed you that your diet was what it was. I expect some doctors would think you were making it all up and that you were actually eating piles of doughnuts!
It is tough to limit the food intake, isn’t it? Chimp serves me in very small bowls, so it looks like more food than it is…in a normal bowl, the amount of food I can be allowed, calorie-wise, would be depressingly small!
Being constantly sick truly sucks.
thank you so much for describing the oddities of this illness so well and as it is – warts and all.
I experienced both, too little and too much weight during the course of my illness:
I was normal weight and ‘sporty’ before I got ill. Six month into the illness I lost about a stone and a half and my doctor thought I was anorexic. In a years time, having started a super healthy diet, digestive enzymes, probiotics and some other basic supplements I recovered a bit and started piling on the pounds. I also had to eat regular smaller meals and 5 of them per day due low blood sugar. this went from 1989 to 1999 during which I regained all the weight and another stone on top. I could walke about 20 minutes per day during this time, so the gain was a bit of muscle and a lot of fat.
In 1999 when the insomnia – weapon grade – started the weight fell off again without changing my food intake and due to severe relapse moving very little. I am looking now similar to you in your last picture with a little bit more fat round the middle.
So there was the initial infection in 1988, a partial recovery and in 1999 a reactivation of the infection due to insomnia. It’s probably more complicated than that. Dr Cheney would have an explanation …
I hope you are a GcMAF responder and with all the other stuff you are doing a remission is round the corner.and with it some muscle ON YOUR THIES!
Inge
Thanks for your comment, Inge. I, too, struggle with hypoglycemia. I have it pretty under control since I eat at regular times now, but I have had some pretty hairy moments with it.
Very interesting that your insomnia and your weight loss happened at the same time. Surely there is a clue in that. It happened to me, too.
I remember that Laura Hillenbrand says in her essay, “A Sudden Illness,” that one doctor, seeing her weight loss, thought she was bulimic.
And yes, I would take the thighs back in a heartbeat to be well again! Hope we will all get that remission soon.
too bad you are sick : ( because you look like a lovely ballerina in your last pic. …but as we all know we’d rather be healthy (and plump) rather than anything else.
my weight journey has been similar in the illness….1st year i was so sick dropped from 115 to 80lbs…started getting scared it would never stop and i would just disappear. then had a mini recovery could eat better and do 1 or 2 small things per day; got chubbier than i’ve ever been 130+…now i am totally bedbound again and eating is a chore, so the weight is dropping again…down to 105 or so. arrrghh…i just want to be healthy and be able to walk and play with my son and husband…..i don’t care how much i weigh!!!
Wow, 80 lbs., Lisa? That is getting into really scary territory. So sorry to hear that you, too, are bedridden. I certainly know how you feel. I’d be happy to be any weight if I could be well again. At least if I were well I could go on a diet and exercise!
That’s very interesting.
My situation is that I lost weight the first year I was sick, but since I am basically inactive and homebound most of the time, I have to worry about weight gain and not having muscle tone.
I don’t usually have energy to shop, prepare food, cut, clean, stand up cooking, doing dishes, etc., so I depend on a combination of ordering food delivered (sandwiches, salads, yes, muffins), eating frozen meals, canned lentil soup, a lot of fruit, break and soy cheese or peanut butter, yogurt, frozen yogurt, crackers, nuts, protein bars. In other words, I eat what is available and easy, no-frills, no preparation and cooking. I do eat vegetables so I sometimes order a serving delivered from near-by take-out delis, but I am not into doing the work to prepare them most of the time. I don’t have anyone else to ask to do this, although neighbors will bring me fruit.
But I do have to watch my carb intake and watch my weight, as the inactivity contributes to weight gain.
One thing is that sometimes friends will suggest a laptop computer so I can sit in bed and use it and also stay in my a/c, which is crucial to my survival in hot weather. But I have refused that as often my only exercise is that 20 times a day I stand up from my bed and walk to my computer and get up and down from the chair. Otherwise, I would feel like a total sloth.
It sounds like you do a good job of having a pretty balanced diet Kathy, even as limited as your energy is. Have you ever tried doing frozen veggies to get more servings in? I know there’s not as much variety as fresh, but very little prep, and the nutrition value is just as good as fresh, maybe better from not sitting around as long.
You look gorgeous in your latest photo. Hope everything works out for you.
Thanks, SomeGuy.
I totally feel the same way about the complex I used to have about my own thighs. See, with Fibro, though, I’ve gained lots of weight. I am on different meds though? idk…what are your thoughts on that?
I’m on a couple things that are supposed to cause weight gain: Mirtazapine and Seroquel. The first they actually use as an appetite stimulant (in cats!) and the latter has a terrible reputation for weight gain and other things, but it works well for me. I do wonder if my weight gain around the middle has something to do with the Seroquel, but it could be just my inactivity.
What an impressive chronology of your body image, your weight, and your illness. The photo gallery is awesome. I’d add the photo of you at eight months old kicking to beat the band in your yellow romper. I’m so proud of the impact you have and the conversations your posts evoke.
Thanks, Mom. You’re the best.
I’ve always struggled with my weight, probably due to the fact that I have Poly Cystic Ovarian Syndrome so lots of hormone abnormalities including problems with insulin resistance. But I was able to keep it within an acceptable limit (though I was convinced I was totally fat and ugly! I look back now and think I must have been a little crazy to believe that!) until I got severely ill. I’ve had ME for 15 years, but 8 years ago became housebound, and I’ve had many periods of being bedbound in that time. The lack of activity definitely made the weight problems worse, but I eat a fairly healthy diet and until a year and a half ago I was able to keep my weight under 200lbs – I wasn’t happy with it, I’d prefer to go back to 150! but it wasn’t horrific as I’m quite tall.
But I’ve now been bedbound consistently for a year and a half, my longest period yet, and my weight has shot up to the biggest I’ve ever been, at 220. At the same time, for the first time, I’m noticing massive changes in my muscle, particularly on my calves. I used to have swimmers calves from a lot of swimming – they were the most muscly part of my body, and now they’re weedy things! It’s ironic really … I’m very large now, yet my legs are beginning to look a little bit like your’s in your last photo, Jocelyn! The muscle is atrophying at a sort of scary rate. I have to wonder how on earth those puny muscles can hold up my overweight top half! On top of that I’ve realised I’m really badly vitamin d deficient – which since it’s probably been going on for up to 8 years now, means that my bones are probably mush from osteomalacia. (I have to have a scan but it’s not going to happen for a while as I have 2 more urgent referrals, cardio and gynae, that my doctors says I have to get to first) I feel terribly sorry for my poor puny legs!
Sorry to hear of your struggles, Susannah. I, too, had PCOS before I was diagnosed. Well, I had elevated testosterone and acne, but my weight was pretty average. It came on really suddenly – one day in the spring of 2001 I went to bed with clear skin and woke up broken out. Weirdest thing. Then Cheney told me last year that testosterone can encourage XMRV. Well, I never had a chance! I still wonder why it happened so suddenly.
I really do think that those of us with dramatic weight changes must have had some change in our gut microflora because of the illness. Why do some gain and some lose? Nobody seems to know yet. I hope there will be an answer for us someday.
I hope supplementing D will prove helpful. It reduced my pain level quite markedly. I can’t say it changed my fatigue, but supplementing it does seem to ameliorate that for some people.
I think I probably always had PCOS because I’ve never in my life had regular periods. Most of my life I’ve been lucky to get a few periods a year, in fact. I didn’t know there was any connection between xmrv and testosterone – interesting!
God I hope vitamin d will help too (if my doctor ever gets around to actually prescribing it!!!! 7 weeks and counting since the results came in that I am about as deficient as it comes) Any reduction in symptoms it can give would be amazing!! I’m glad to hear it helped reduce your pain!
P.s. Don’t know if you really realise this, but illness or no illness, you are seriously beautiful in your photos! 😉
What vitamins do you take or do you think alleviates the pain level? Just Vit. D? I take Vit D3 and calcium, sometimes with magnesium, and none of this helps with muscle pain. In fact, the muscle pain I have is debilitating. It has been for months. It’s a reason I’ve been so housebound for months.
I think allergies aggravate the muscle spasms and pain. My body reacts to pollen, grass, mold, i.e., whatever is airborne, by muscles tightening. And then the pain sets in. Or if I’m at all tired or push myself a bit.
Do you have any ideas what helps on this?
Kathy, I was just looking at this old entry and realized I never answered you. Vitamin D has helped the pain for me. Cheney recommends magnesium cream for muscle pain, and also prescribes a ketamine cream (put together by a compounding pharmacy) for the same. Neither of them have been particularly helpful to me, but they’re definitely part of his arsenal against that.
Hi Jocelyn:
I was just looking for some information on muscle wasting an P.O.T.S and luckily found you!! My name is Nathalie, I’m 42 years old and I live in Calgary, Alberta. I’ve been sick with CFS since September, 2009. That year I was doing bootcamp classes twice a week, played on a ball team, played tennis, golf, biking and hiking. I was in the best shape of my life. Then boom! Everything changed. For the first 10 months I could maintain my part-time job but would have to go to bed after work and spend the weekends in bed. Any type of physical activity was out of the question. Then in July I felt a little better for one week. Still not knowing what was wrong with me, stupid me went kayaking, hiking and golfing which ended me in the Emergency room by the end of the week because I could physically not move. From that day on I had to quit work, driving and walking was very limited and having to be pushed in a wheelchaire for any distance. Now since August 2 nd I have gone down hill one more notch and have been completely bedridden.
I can so relate to the picture of you. I have the exact same legs!!!! I weight 117 pounds and I have a “belly”. Fortunately I have no pain.
—-I was wondering if you can tolerate any type of exercise for your legs. I have been sowed range of motion exercise that my daugher and husband can do for me but I can’t see that maintening any muscle tone.
To make a long story short, the wait in Canada to see any doctor who specialises in CFS is quite long. I still have another year to go, so in the meantime I have been going to a chronic fatigue center in Las Vegas every few weeks for the past 7 months. I have been placed on hormone replacement, hoodles of supplements and when I go I am put on IV’s which bring me back to life. I wish I lived closer.
Anyway while I wait here in Canada, I do a lot of research. I found out that if you keep your heart rate within your anaebolic rate you might be able to avoid crashes. My anaebolic heart rate is 106. I wanted to try this and see what I would be able to do within that limit. Well to my surprise just standing up brings my heart rate to at least 110 and brushing my teeth it can go up to 126-132 bpm.
So I guess any type of activity is out of the question. Now the question is do I have CFS, CFS with POTS (postural orthostatic tachycardia syndrome which is extemely common in CFS patients) or just POTS. I have a lot of the symptoms. Intense symptoms when exposed to heat, worse symptoms before my period and especially the IV making everything better.
—-I was wondering if you’ve experienced any of this?? Before the heart monitor I had no idea whan my heart was doing. I knew that when I tried to dry my hair I was pushing it because it felt like I was shaking from the inside and just wanting to collapse.
Sorry for babling on. Just seeing someone who looks exactly like me, made me want to share my story.
Thanks Jocelyn!!!!
_
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I have the opposite problem: due to not moving enough my metabolism is crazy slow. I can barely eat but still stay the same weight. I have quite a bit of fat for my weight, I actually don’t weight much! But there is just not much muscle 😦 CFS is not easy for weight management, either way.
Btw that’s a beautiful picture of you!
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