My Body
Carol was a pear – a toned pear, before chronic fatigue syndrome
I am built like a skinny pear. Seems I inherited mixed up genes: my mother’s mother’s skinny upper torso and my father’s mother’s ample bottom. (Grandma Pauline’s maiden name was Gross. She was buxom, but I received only her thighs and thick calves and ankles—along with her cooking instincts).
When my boys were little and we had to separate them on car rides to keep them from punching each other in the back seat, Todd would sit in the middle between me and Steve in the front and poke at my thighs when I wore shorts. “Jello!” he’d shout. I didn’t find that so funny, but he and Jack in the back seat would crack up.
Regular rigorous exercise left her taut and firm
My power-walking over the years made some difference. I developed muscles and tightened my thighs. I felt good about this.
I was dedicated to my regimen. I pulled myself out of bed every weekday at 5:30 no matter how sleepy I felt, and walked in all kinds of heat and rain and cold and snow. Only an ice storm kept me inside, but then I’d use the stationary bike in our basement or join Jane Fonda in an aerobic workout.
On weekends, I’d walk longer distances. Aside from the muscles, I loved the sense of well-being that followed exercise. I especially relished swimming laps in the summer.
Then came the flu shot and its aftermath.
ME/CFS Kicks In
The prominent symptom of “Myaglic Encephalomyelitis”, a real mouthful, is “post-exertional neuroimmune exhaustion” or PENE (http://forums. phoenixrising.me/showwiki.php?title= General+Wiki+Pages: Clinical+descriptions+ of+chronic+fatigue+syndrome) :
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are:
- Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
- Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms
- Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
- Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
- Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
That’s me.
From Toned To Pudding
But, after 14 years of ME/CFS her muscles are now ‘pudding’
I haven’t been able to exercise for 14 years, and my thighs have swollen even beyond their original bulk. I never dreamed that my tight thin arms would melt into toneless flab. I’m pudding.
It’s all part of the issue of control. I used to be in charge of my life. I decided what I wanted, how to get what I wanted, and if what I wanted was worth the effort. If it was, I committed myself to make it happen. At home, at work, at play. Students not responding? Re-think and create different activities. Steve’s cholesterol too high? Find low-fat recipes; saute with chicken broth instead of oil. Flabby arms? Lift weights. ME/CFS has undermined my sense of free will and personal power, slapping my hand whenever I reach out. Hard.
I have become inconsequential.
I’ve tried to exercise. I’ve been through three sets of physical therapy sessions with different therapists. I’ve tried easy yoga, both at home and with others, an exercise class for the elderly, and mild water aerobics, in both regular and therapeutically heated indoor pools. I’ve forced myself to ease into movement, to take it slowly, but always, at some very early point, I’d have such a bad crash that I’d be back in bed for at least a week. The thought of going back to the class or the pool fills me with dread.
The other knee-slapper is the osteoporosis I’ve inherited from my slight, dowager-humped mother. As we know, one safe, non-drug treatment, uniformly recommended to improve bone density, is weight-bearing exercise. I write this as I sit in bed with the computer resting on my legs as my muscles ache from just taking a shower and washing my hair. Does holding the blow-dryer count as weight-bearing exercise?
Ill health has put off doing tests to find metabolically acceptable levels of exercise for her
According to Dr. Nancy Klimas, exercise can be possible with a very carefully designed exercise protocol:
“In our clinic we use a scientific approach to exercise called V02 max testing and it measures accurately what your body is doing when it is exercising and the point at which it becomes unsafe to continue. The results of V02 max testing will tell you how long and how hard you can exercise, and then from this information we can develop an exercise protocol for you that is safe and effective.”
I’ve asked about scheduling the testing during my visits to her Miami clinic, but each time I was too debilitated and Dr. Rey recommended against it.
Meanwhile, I envy neighbors out jogging or even just walking their dogs, taking their strength and health for granted; I have to rest after I make dinner. Meanwhile, my hips get bulgier and my arms flabbier. I don’t want to be so self-conscious. In the right clothes (a short waisted long-sleeved blouse and A-line skirt, maybe, with control-top panty hose and mini-heels) I don’t look so bad. But pictures of JLo with her sexy mini-dress and long beautiful tanned bare legs in glittery spiked heels, make me wither.
This is the post-sick me; before, I was content with how my body responded to my daily exercise. And hey, I’m 70 years old and should be over the old beauty trap, yet I sometimes long to hide inside a burka.
Free Will
The lives of people saddled with relentless chronic diseases add a dimension to the complicated issue of “free will”, defined by Mirriam Webster online as “the ability to choose how to act. . .to make choices that are not controlled by fate or God.” Others would add freedom from biological and psychological restraints, a freedom that would make us responsible for our choices and actions. Of course, all our choices are limited by innumerable factors, whether we are ill or not, but most people at least feel free to act on their desires and values. To lose your autonomy because your body refuses to accept and respond to the mind’s desires creates feelings of inadequacy, powerlessness and oppression. The existential world shrinks along with the physical world.
I think another factor adds to the sense of powerlessness we feel on an individual level: our collective feeling of powerlessness to effect meaningful changes in the medical world. Witness the most recent controversy over the contract the Department of Health and Human Services entered with the Institute of Medicine, a group without the necessary expertise, to reach a consensus for a useful definition of ME/CFS. One reason this decision by HHS struck patients and practitioners so intensely is the dismal history of the powers-that-be to attend to our disease. Again our wishes are ignored, not just by our bodies but by our government. Cort’s image of the sleeping tiger awakening to describe the ME/CFS experts who wrote the letter rejecting the contract beautifully captures our need to feel powerful and effectual in the face of our usual impotence.
Okay, I am encouraged by the strong voices of ME/CFS patients and advocates. I am tired of just breathing, accepting “it is what it is,” and counting my blessings.
- Check out more of Carol’s blog series – A Chronic Fatigue Syndrome Chronicle
Carol, how do you cope with the Candida yeast over growth?
Rich
I’ve taken Nystatin and Diflucan a number of times. I also avoid sugar and foods that Candida beasties like to nosh on. I probably still have remnants but I can only do so much as a warrior against it.
Free will and motivation for all the things we knew…just gone. What the heck? That was a great piece you wrote that people who are well cannot understand. For those of us with strong wills and motivation which then crumbled to such weakness and vulnerability in ME/CFS is a long stretch for theimagination.
Then to have it reflected through the actions of others, ie medicine and politics, just adds to the problems, gouging the pattern just a little deeper.
What is a girl to do?
Thanks, Cort and Carol.
It was good to read. Miss my old healthy self. Thankyou for making me feel less alone
Yes, we all echo the feeling of wanting to be our beautiful younger selves. Chronic Illness takes it’s toll on us in so many ways. As does aging. But, it just seems even more cruel that some of us get these illnesses that little is known what to do about.
My father got Guillain Barre from a flu shot and he has never completely recovered from it. I also feel that a polio vaccine is what triggered my issues when I was a young 8 years old. So, I’ve been dealing with varying degrees of illness for most of my life. We do learn how to cope and have a life despite some of the cruel hands we get dealt.
I enjoyed reading your thoughts and feel your pain. Yes, I also understand the issues with washing your hair and having arms over head and trying to blow dry your hair. POTS issues.
Issie
I can so relate to what you say Carol. It’s discouraging to read all of the blogs and what you and others have been through trying to get a better quality of life. Some say pacing can bring a measure of control but it’s never helped me, or maybe I never mastered it. I can feel like I’ve got the flu or feel ok but be so tired i feel “drugged”, whether I’ve overdone it or not. I do have times when I can be perversely well, and I’ll be darn if I’m going to lie around then. Thanks for your story, and you’re a wonderful writer.
‘ME/CFS has undermined my sense of free will and personal power, slapping my hand whenever I reach out. Hard. I have become inconsequential.’
Well put. This is a hard thing to bear.
I don’t know about this idea of pacing working at all. I find the best thing to do is live my life in slow motion.
I do what I can (when I can). I rest, or take it easy, when I cannot.
But I have to say I feel better when I spend the afternoon outdoors (as opposed to being at home in front of the computer). There’s something about being out in the park, garden or beach (when you live in the inner city) that I find quite revitalising. I think it’s the fresh air. Some weeks I do 10-12 hours of walking (which is a damn sight more than the average office worker). Just because I can’t walk briskly, or power walk anymore due to severe septal hypertrophic cardiomyopathy, doesn’t mean I don’t do some form of exercise.
I genuinely think you have to ‘move’ and keep your lymph system working, otherwise toxins & waste build up in your body and you actually feel worse from the toxic overload.
Everyone is different. You just need to find a way to live your life the best you can.
Like others with severe ME, I am bedridden. In the years I was at a better level of functioning, ten minutes walking was my maximum limit before pene set in. As this article points out however much I want to keep moving I can’t. The ‘have to’ becomes impossible.
Carol, thanks for another great article and articulating so well the sheer frustration and lack of control that comes with this illness. I’m 42 and I daren’t even look at my body under the covers as the meds and total enforced sedentary lifestyle have piled on the pounds. Along with many other things I mourn my former appearance. My mum thinks I am daft to worry about my outward appearance when I cant even walk now, but I do mourn it.
Well, we probably are daft, but that’s the way it is. Sometimes you just can’t talk or wish yourself out of the insanity — it comes with the ME territory, I think.
Thanks Carol
I so agree with the thoughts you express here about the need to move. I know many have gotten so ill and deconditioned that it is near impossible for them. But, our bodies were designed to move and that does help with toxins and elimination of things we need to eliminate. If, a person is completely bedridden – there are things that can be done to move the body. It may take a loved one to help with this –but, the more you don’t move your body —the less you will be able to move your body. I learned this when I was in a wheelchair for over 6 months. It has been very hard to get what I lost back. But, it made me realize how important movement is to our health and well being.
Issie
Herein lies the frustration. I know bodies were designed to move but if I am bedridden which came overnight (so deconditioning didn’t play a role in it initially) how does the phrase bodies are supposed to move make people like me feel? Even a gentle leg stretch with help in bed puts me above my limits as my limited energy needs to be reserved for my toilet needs.
Certainly one should move within one’s individual limits but for the bedridden movement is extremely limited and perhaps I’m too sensitive but the phrase ‘we have to keep moving’ makes me feel unheard. I have a bucket by my bed for my toilet needs which I can just about flop onto, then lie on fhe floor to rest and then get back onto the bed. This is at least some very minor movement.
I hear your frustration. I also hear how difficult it is for you to “move”.
I have been in a wheelchair and have been nearly bed bound – myself. The experience made me get so much weaker and trying to climb out of that place was very painful, difficult and filled with many tears. It’s not an easy thing to do. But, what I learned is we MUST move. Even if someone is lifting our legs and moving them for us – with us not exerting the energy ourselves. It’s very necessary for our blood to move for our bodies to function. But, even a minute of some movement and a gradual increase with time – will let you see improvements.
I learned this the hard way. It DOES make a difference.
Issie
Thanks. I am way too ill for a wheelchair. I can’t sit up. As I said before my limits is getting on to a bucket and rolling over in bed. Any more movement pushes me into Pene where I lose the ability to talk or type, trapped in my body.
When you say the phrase ‘a gradual increase in time’ this suggests to me you believe graded activity can help us improve our functioning. If only this were true for all, this hasn’t been the case for me. Please hear me. I fear we will go round and round in circles here so I will leave it at that.
I did have 16 months of being bedridden and was even worse than now 6 years ago. I couldn’t go online, type and could manage a few sentences of speech daily. I thankfully made huge improvements in a short space of time. I did no gradual increase in activity. My body just suddenly made a huge shift. I actually found little difficulty in being up and about after 16 months of lying flat in bed.
Annie, I so hope that you are able to see an improvement soon! My heart goes out to you. I hope you have a good caregiver.
I agree with Darlene, I sure hope that you see some improvements. My heart does go out to you. It’s so horrible to be “trapped” in dysfunctional bodies. Hopefully, soon – there will be more answers. I know there is a lot of research going on.
Issie
Well said! I have really struggled with these same feelings this year(after 11 years of being sick). We are constantly told that if you try hard enough, anything is possible. I have found this quite untrue with this illness as it has gotten worse instead of better & it often makes me feel incompetent that I can’t beat this beast. Thanks for putting those thoughts into words!
Exactly. It so hard for those not chronically ill to understand — and was hard for me to understand when I first got sick. You’re used to the experience of the body recovering as your immune system kicks in. A cold, a stomach ache, even a terrible flu. Then along comes ME, which puts not just your body but your whole essence, your spirit, in a cage.
Yes, we still have decent periods when the gate unlocks for varying periods of time, and yes, there are still some important choices we have the power to make. . .but the whole truth for me involves some pretty difficult moments.
Yes! A burka! I love that idea. 🙂 It’s so hard not to fall into the beauty trap in our society, and now that it’s a big deal for me just to take a shower I have really hard time making all of the other stuff happen. Hair cut? meh, if I’m going out it’s for a necessity like groceries. Cosmetics? If I’m lucky enough to get mascara on properly in spite of my tremor, it all smears off soon enough because of my eyes watering. Wardrobe? Well, I can usually get good yoga pants on Amazon. Also, I had built my pre-sick image of myself largely around being physically fit. Tomboy, farm girl, outdoors nut, martial artist, bungee jumper..etc. so, the free will part really struck a cord with me too. I’ve had to rebuild my concept of myself. It’s a good thing I can hold a bed down like an absolute professional or it would be hard to count my blessings and accept that it is what it is. Sometimes I can be content with who I am now, and sometimes the mourning of who I was just takes my breath away. You would think that after all these years it wouldn’t feel so fresh.
I also appreciate the concise one paragraph explanation of this nastiness. I’m going to send it to my extended family in time for the holiday season. It’s taken me way to many years to start educating my friends and family about ME/CFS. It just seems so hard and very embarrassing. But when I show up in a wheel chair and a burka they’ll need to know why. I actually bit the bullet and got a wheel chair this week, and I’m kind of excited about it. Maybe it will give me a bit more freedom.
Here’s to the sleeping tiger!
“Sometimes I can be content with who I am now, and sometimes the mourning of who I was just takes my breath away. You would think that after all these years it wouldn’t feel so fresh.”
So well put, Darlene. That’s just how I feel.
For those of us with moderate ME, I believe that we can influence our body’s health by doing some form of movement. I understand that by simply (!) standing up for a short period after sitting and lying, influences several body systems. I set my timer for 30 minutes when on the computer, and try to stand and mover around a bit. I seem to have a habit of slouching, and when reclining do definitely compact my innards.
Dr. Mercola states that this standing and realigning our internal organs is better for us than 30 minutes of exercise. I’m very encouraged by this as it is do-able, where the 30 minutes of exercise is certainly not.
I would guess that non-movement could bring on stiffness and pain as well. Stretching is recommended as a precursor to doing exercise for those of us with ME/CFS.
Yoga on the Path videos of Dan Moricoli for those of us with ME/CFS http://cfsknowledgecenter.ning.com/group/yogaonthepath?commentId=2477197%3AComment%3A191377
The exercise/activity videos on Dan Moricoli’s site are developed with Dr. Nancy Klimas.
http://cfsknowledgecenter.ning.com/group/theexercisegroup?xg_source=msg_wel_group
Both these sites are well worth a visit. Cort has reviewed them as well
Suella
So well said…….I am70 and after 12 years of being diagnosed, I find even blasting caps will not move the weight accumulated from lack of movement. And if I had to retreat from the blasting caps my ever so slow response would commit me to the ground in a matter of seconds.
These muscles just dont want to move anymore, and worst of that is , if they do it just freaking hurts !!!!
So what is the answer?? I dont know….I try the best I can like all of you. But then frustration takes over and that results in “oh crap, whats the point when the next few days will be unbearable”.
So I plod along, buying my clothes a size larger than I used to, and watching “Dancing with the stars” and remembering when I really could do that too !!!
But at least I don’t feel so all alone now, for there are so many of us in the same boat.But I really wish we wern’t !!!!
Oh well, maybe today I can walk the dog to the corner and actually hold the hairdryer. And if not…..maybe tomorrow.
I like your image of the blasting caps!
Yup, there’s always tomorrow. . .