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Readers Respond: How Do You Explain Chronic Fatigue Syndrome?

Responses: 51

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Updated September 14, 2009

Explaining chronic fatigue syndrome to the people in our lives can be difficult. Get ideas for explaining chronic fatigue syndrome better, and share what has (or hasn't) help you explain this complicated condition. Share Your Ideas

My life with CFS

I'm 74 yrs. old & having 6 children have always been active. I lost my husband 3 yrs. ago & 1 1/2 yr. ago needed major surgery; after that my life changed. I could never get my energy back, I was hospitalized twice because of the complete fatigue. I couldn't function, I thought I was dying. After 4 doctors & many tests it was decided I had CFS. I have a good day sometime & feel like my 'old self', then the next day I'm down in my chair & just want to sleep along with brain fog & memory problems. I keep trying to get back to where I was but I think I have to accept that it's not going happen. In all my years it's one of the worst things I've had to endure & accept. I feel like no one understands & that I have to fight this battle alone.
—Guest Joan

Not the same person as before

I developed chronic fatigue when I was 12 years old and it took over a year for it to be diagnosed. I'm nearly 15 now and just starting to get a little better. Before I had chronic fatigue I had a very busy life, i did 5 types of dancing aswell as playing 3 different instruments. I had lots of friends aswell as two best friends that I loved. I had to give up dancing and now only play 1 instrument. I don't have many friends anymore and the ones I do have don't really know me and I don't really know them. My 'best friends' both got new best friends after I wasn't able to go to school on a regular basis. I'm just starting to get back to school properly but still can't go full days. Most of my family have been really supportive but they still don't fully understand. My father doesn't really believe I have an illness because its not something you can see so it must not be real. I'm finally on the road to recovery and I really hope I overcome this disease.
—Guest Kel1810

No longer Me

Anyone who knows New York City, knows how busy it can be. The Busses and Trains, Traffic, People, Taxis. It's a very exciting place to live. I'm a New Yorker from birth. I used to work as a store manager 50-60 hour weeks and socialize with friends and family on my days off. I went to the gym 5 days a week. As for commuting, I rode my bicycle 10 miles to work every day. Then 10 miles back home. That’s just the tip of my physical activity in my daily life. Now I have CFS. Seven years now. All I do now is stay at home with my dog. Shopping and cleaning house is the hardest thing I do and I mean HARD. I don’t have any friends. I don’t visit family. No more gym membership. If I do go out, I’m thinking of coming back and going to sleep. I am no longer Me. And the worst part is, I Don’t Know Why. CFS has killed who I am.
—silentknight77

hard to understand

I am tired all the time and there are days that I feel okay. I can;t provide for myself because i can;t be counted on. I feel like I want to move to a church. every conversation is hard, and when i don;t talk for awhile then i pray to talk to someone. people probably think that I am lazy.
—Guest susan

Living? Really?

CSF: It's painful! Emotionally, mentally, physically. This Diease takes a happy, healthy "normal" human being, and turns us into someone we "never" thought we'd be...... I feel guilty, like I'm supposed to will myself into cooking, cleaning, working, exercising...... You name it, I feel guilty. Family, friends..... Your correct, if people "can't" SEE a scar a cast, or tubes sticking out of your body, you must be a hypochondriac! I'm tired of accepting invitations to outings, only to cancel hours before, because I can even begin to think of getting into the shower to get ready. And doctor's? I spent sooooo much of my own money trying to find out what was wrong with me, only to be told there's no cure! And supplements? I have so many supplements, I had to have someone add two huge shelves to my bathroom walk-in closet. I can only take so many, because taking too much makes me throw up. If diet can't make it better, sleep won't fix it, and rX's do nothing???? What can we do?
—Guest Made

a day in my life?

people think because i look fine, that i'm exaggerating my illness. i live 4 houses from my father and hardly see him. ANXIETY. the anxiety that never stops. PAIN. the never ending aching is exhausting. EXHAUSTION. i'm so tired i can't walk to and from my car in the summer heat. It's beyond fatigue. I have Fibro and Scleroderma too. DEPRESSION. LONELINESS. ISOLATION. I work full time and raised two sons who hate me because I am always so tired. My brain is foggy some days and my boss threatens my job because i become completely unable to form words or thoughts. he says i'm being a drama queen. Im not-i simply can't put my thoughts to words. I go to bed at 7pm. Ruins dating relationships. I wake unrefreshed and so tired I cry. By week's end I cannot get off the sofa and have to pay someone to dust and vacuum. It's like having flu that never leaves.people think that "they have it too"! if they did their life would not be normal & active. I'm so tired. I feel like I can't go on at times.
—Guest 40 feels like 85

how you feel everday when you have cfs

i am 44, ive suffered with cfs for 10 years, but unfortunately got worse over the years, although i may appear to look well, that is not the case, at all, even doctors dont understand, only what they have read in a book, i wake every morning as though i havent slept at all, you have no energy at all, and suffer with extreme fatigue, every day, you have had your life taken away from you, really, but other people dont c it like that, so many times ive heard people say to me you have to push yourself, if only it was that easy, if people really tried to understand, if they had cfs for a month, then they would know what yoou are talking about, the thing is, you havent got any fight in you at all, else you would do sometyhing about it, instead of living an non existence life
—Guest tracey johnson

It's Horrible

I was ill when I was 13/14 (I am 22 now) and after being ill, I suffer from ME/CFS and it makes things very difficult. It IS hard when people don't understand how you feel, or assume you are "putting it on" A syndrome such as this can turn your life around completely and it's very upsetting when people don't understand
—Guest RoseliD23

i know its hard :(

well, im only 13, so you will think i dont know what its like, but honestly, i do. my friends to be honest arent very nice about me having chronic fatigue, i take all me time trying to explain it to them and all they will say is 'oh' which really upsets me. i cant do the things i used to, and they think im avoiding them when i say 'sorry i really cant come out today' a way to describe it could be 'its a different sort of pain, which cant be described unless you have experienced it. every day i am in some sort of pain, and some days im completely inactive. i have no energy, im always tired, but no matter how long i sleep, i dont feel refreshed' a way to deal with it, for me, is finding something i really, really love. for me, its music. do things that you love! i listen to music and read about my favourite artists and look at pictures of them. it passes time and gives you a better state of mind! hope i helped xoxoxo
—Guest Guest 18

Life Changing

I was diagnosed with CFS a few months ago. To my friends and family I still look the same, but they don't know that inside I'm trying to work out who I am, getting to know my body again and understand my thoughts and feelings, because now they're different-I'm different. I'm struggling to accept that I won't be the person I used to be. I've always lived life without limitations, and overnight I became caged. Now I live day to day, doing what I can. I'm still able to work but not to the same degree. I'm not able to exercise at all, except for a little walking. In trying to adapt I'm doing things that I've always wanted to do but always put work, socialising and fitness first. Now I'm baking, making jewellery, photography. Doing things that don't involve physical effort, that give me joy and a sense of achievement, and provides the solitude and peacefulness that I now crave. I've had to reassess my life, and I'm trying to take the positives from this.
—Guest Sandra

There is no good explanation!

I got sick in 2003 (virus). I was a working mom & wife. Three years later I was diagnosed with CFS/Fibro& Chronic daily headaches. Since then, I no am longer able to work, I have lost numerous friends and, yes, it has defintely taken its toll on my marriage of 27 yrs. There is no way to explain this illness to someone who does not have it. The only way I have ever been able to explain it to my doctors and family is that it is overwhelming fatigue. I am not sleepy, but my body just needs to lay down and rest. I do not have the energy to stand, or continue any tasks. Then add the cognitive dysfunction where I can't remember, I can't find my words, I lose my train of thought, I forget (I am college educated!), then you have a good idea of CFS & what it can do to your life!
—Guest asticat

living with the condition

nobody can truly understand untill they have felt it themself, words dont really seem to cut it, im 15, and have only been diagnosed for a few months, it feels like your legs are constantly shaking, like butterflys are living inside your feet and moving all the way up your body making you un-easy, your eyes are so sore but no matter how much you sleep it just dosent improve, my dream was to become and actress but I cant even go to college now, nobody has any idea at all
—Guest Alice

Type 'A' to Type 'D'

It was refreshing to read all of the comments and how similar they were, and how difficult it is to describe how one feels with CFS. I was once a Type A, successful IT executive that was happy, enjoyed work, loved my family, liked to travel and have fun - you get the idea. Then I started having these occasional 'days' where I felt terrible and could not get out of bed for a day or two. Of coursed started seeing several type of doctors to determine what was up. Meds for depression initially helped, but not for the lose of energy. For 15 years I continually got worse each year to the point for the last 5-6 years I cannot work, rarely can do things that are fun, and most days am in bed for 20 out of 24 hours. Basically a Type 'D' - disabled. If not for my awesome, understanding wife, I would have totally lost any hope. I hope we all will find a 'miracle' some day that gives us back just a portion of our lives.
—Guest Imasooner

MS/CFS Sleep Walker

First off I am a man, and been hard pressed to find men with these problems, or maybe it is to hard to admit we men also have MS/CFS. I have read all I can find, and my doctor is very good about all my problems, I have others as well, besides MS/CFS which doesn't help, but my wife is very, very good with me and sometimes I don't know why she puts up with me, mood swings. I find depression very hard, and I get angry, I used to be a police officer and an Legal Agent, so must think very fast on my feet, in the Court Room, now I have problems remembering anything, brain fog, I don't drive anymore, because I sometimes fall asleep walking across the floor, without all the meds, I couldn't function at all, but like all the others with these problems, I see no hope , as there no cures, but I live as do the others, day to day, but I will say this don't take others as to there cures and there advise, get a good doctor, if you can, but live.
—Guest Edward

No Life Anymore

I can say that my life as I once knew it has ceased to exist. I was once a person that liked to exercise, take long walks, entertain friends, and kept a really clean house. Now, my husband has left me, I no longer have the energy to do any kind of exercise, and I spend my weekends on the couch so I can go to work the next week. I never take a vacation or do any fun things anymore. My greatest job is Friday night knowing that I don't have to get up early, take a shower, get dressed for work, and fight traffic to get there. If I do have plans for the weekend, it messes me up and I don't get the rest I need to be able to tackle the new week. It's so sad that my life has been reduced to this. Since my divorce, I have not dated anyone, and I have gained so much weight that I don't even recognize myself. In my mind's eye, I'm still the person I was 20 years ago. Then I look in the mirror and I don't know who I am. I miss me!!!!
—Guest shastadaisy

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How Do You Explain Chronic Fatigue Syndrome?

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