Ditto Ragteshi! For me it's the horrible crashes I get from not doing too much, they don't usually last so long (a day or two of the worse) but it is the bad nerves, feeling like I've done something horrible to my body.

It's also my friends thinking that if I just went out and had fun I would get better. I would love to go out and have fun but I know what happens afterward.

Thank you Sarah for asking us and good luck with your art, very inspiring.

For me, CFS is death by a thousand cuts because we must endure bboth the horrible combination of symptoms AND their aftermath: sadness, guilt, anger, fear, loss of income, loss of confidence, loss of profession, loss of identity, broken relationships, passivity, agression, and (in my case) an obsession about wanting to know what actually causes this thing so that science can develop a drug that will address it at its core (as has happened with HIV).

But if I had to choose just a few things:

I hate not being active and fit.
I hate all the meds and doctor visits.
I'm beyond tired of being the object of pity and/or misunderstanding by people who don't "get" CFS.
I hate the fact that dealing with CFS is like having a second full-time job.
I hate that I've changed in to someone I wouldn't have even recognized (or liked) 10 years ago.

OK, enough already. Thanks to anyone who just read my rant. :0) Jeb

My most embarrassing frustrating day started with waking up in a bowl of soup. My sister had been spoonfeeding me blended soup because I was too tired to chew, and too tired to lift a spoon. The effort of just swallowing exhausted me to the point where I just collapsed on the spot and woke up with my sister lifting my head out of the bowl. I was covered in bright orange pumpkin soup. I kept sleeping somehow as they showered me and put me to bed. The worst part is, that day happened almost every day for 3 months - although my sister learnt to hold my head up out of the soup eventually.

Besides of course cruel, unforgiving, totally terrible, aweful fatigue. For me it is dizziness - vertigo. Of course been to a balance specialist and was diagnosed with migraine induced vertigo and was given blood pressure medication that did nothing. Do not have high blood pressure, do not have headaches???? May have to stop driving soon. Going back to doc next week. Dizziness has become intolerable. Can't function at all. Does not matter if I am moving or not.

1. Fatigue
2. Dizziness
3. Where have all the muscles gone??? Pain and burning in muscles. Muscles gone.
4. Brain fog

I am having a really bad day today. Just joined and it is great to vent. This disease has really taken its toll. I used to be a vibrant, extremely motivated, fun loving woman who could take on the whole world and if a mountain got in my way I would simply get out my walking stick and go mountain climbing.

I am 50 years old and graduated college with a bachelor's degree double major in finance and business management. Graduated top of my class summa cum laude. I ran a very successful home business with web site and online sales for 10 years, at the same time doing real estate investing, and taking care of troubled teenage boy foster children who no one else could handle. They were great kids by the way. The parents on the other hand???? At the same time running and cleaning the household, taking care of my daughter and my elderly sick mother. Now I actually had to look up how to spell the word tired. I can't even think let alone remember how to spell. I have been with my husband for 20 years and have a 22 year old daughter out on her own. I was always the care taker of the family.

We used to go on vacations to the mountains, go hiking, fishing, camping, concerts, dancing, visiting freinds and family. I could install a bathtub while at the same time planting a new tree in the front yard, while driving my daughter to her choir concert. I loved life.

Now I am just glad when I make it down the stairs without having to take a break. I felt something wasn't right about 15 years ago, and started complaining about fatique. Went through the whole doctor thing for 10 years. All tests said I was the appitomy of health. Take this antidepressant and go home and get some sleep. They caused fatigue. Very depressing. We all know sleep is not going to help anything but sleepiness. Docs saying that they were tired when they got home from work too.

5 years ago I shut down my business sold my homes and went on total disability. I would love to say the I am getting better. Maybe after this dang menapause that is just starting? It is getting harder and harder to do anything. Grocery shopping is a trip to hell and back. Hiking is walking to the car. Can't carry laundry basket. Housekeeping is feeding the dust bunnies. House used to be immaculate. Can't cook because I am afraid of fires. I forget and have melted too many pans. Would have to stand at stove for duration, impossible. Husband does his laundry and cooks. Besides all the other symtoms (got em all except sore throat), I have an extreme case of dizziness - vertigo that the docs can't figure out. Went to dizziness balance specialist and was diagnosed with migraine induced vertigo. Was given blood pressure pills. Didn't do a thing. I don't have headaches per say, and do not have high blood pressure. It is becoming so extreme that I am going to have to give up driving soon. Can not function at all. Doesn't matter if I am moving or not. Going back to doc next week. Wish me luck.

Husband is really just starting to figure out just how sick I am. Can't go around saying I'm tired. That would get tiresome. But just today I sat my mother (who lives with us for health reasons, I am supposed to be watching her.) and my husband down and had to tell them just how damn sick I am. No more messing around folks this is not good. Maybe if I can get to the bottom of this dizziness that has got to improve things. And the cycles are driving me crazy. I never know when I am going to be sick. Some days I feel pretty good. Today I think is one of the worst days I can remember. Would like to get this dizzines under control so I can start seeing a counselor to talk to about this, but I am not sure I can drive. Some days I can't. Husband works during office hours and really don't have anyone else. My husband and I went out of town and I asked my brother to come check on his mother while we were gone. It was a whole 5 blocks away. Never even bothered. So much for that. Whole other story. No help there. Will look into an elderly / disabled van to maybe come get me to doctor.

Moved from northern Indiana to SW Missouri about 8 months ago. Thought that the shorter, milder winters would help because spring and summer are usually better. Not working. Going to have to work on this dizziness.

This is now my life. I am very good at sitting on the front porch. I enjoy watching the birds and squirrels. Mom and I enjoy playing word yahtzee. It is hilarious because I forgot how to spell so many words and she has her own geriatric fog. We use the spelling dictionary a lot. We can still laugh at ourselves. Renting movies is doable. I have heard it say that "every mushroom cloud has a silver lining." Though I am having a pity party today, I always have hope. Hoping that someone can figure out this horrendous disease and offer us some help or better yet a cure???

Being so weak, and knowing that exercise will only make me sick and more weak. I want to walk, lift weights, swim. Get on an exercise high. But I'm seventy one now, and time is running out.

For me the fatigue is the worst. My brain is foggy all the time. I just want to be awake. Most days, I feel like I'm walking through mud. It takes double the effort to do anything and really, I just want to lie down and sleep.

Two years ago, I would have answered feeling like I'm always coming down with the flu... nausea, chills, headaches, sensitive skin, sore throat.

The hardest part is the severity of the fatigue and how it affects my daily life. It makes everything harder.
Then theres not being believed by doctors, friends, or family. Losing the life you once knew, and it is something doctors can't really help with and friends and family either don't believe or don't understand, so it ends up being really lonely and frustrating.

With me I guess right now its the pain, I have severe lymphnode pain, all my lymphnodes are enlarged and extremely painfull, sometimes its hard to walk because of it. Its been this way now for 5 years, at first the pain wasnt to bad but it seems to be getting worse every year as well as the cognitive problems, fatigue, and how CFS just really destroys your life, it really takes everything away from you.

i have cfs /fibromyalgia ,you asked about things we miss doing that we used to do with me it would be the simple things like housework without it shattering me ,but to be truthful its over 6 years now since i was struck down by this all and thing i really miss is and grieve for is grabbing my children and swinging them around in my arms ,also doing things with them like i used to yes i feel like ive had my life robbed but to be honest i feel my children got robbed also as we did loads of things together . as for other people understanding its now beautiful and sunny outside but i cant enjoy it as its making me ill and people that live near me think im a weird person and dont understand how the sun can make you feel ill you try and explain but you see the look on they faces its always the same i have given up trying to explain ,hugs to everyone xxx

I think the extreme weakness and tiredness are the worst. Next in line would be the feeling sick to my stomach a lot.