I am basically house-bound and I've fallen into the habit of sleeping late. When I get up, I have breakfast and do a small job (ie 5 - 10 min) if I have the energy. Then I'm into my recliner chair, fire up the laptop, check email, DS and Facebook (including a game I play on Facebook). Then it's usually either browsing the web, playing a simple computer game (one that needs practically no brain power) or watching a DVD or something I've taped off the TV. After dinner I check DS and Facebook again, then go back to bed to read until I'm ready to sleep, which I do for about 10 hours.

Every couple of days I throw a bath into the mix and occasionally I'll go to the library or the local shops. The bulk of my shopping I do online and have delivered. My meals I usually try to prepare in larger batches on my better days and freeze in single portions. That's all I have the energy for and the monotony of it often nearly drives me crazy.

My routine varies every day, since my time in graduate school is pretty flexible. I'm usually up pretty early though, either because the baby woke up early or because I have an early class on Tuesdays and Thursdays. After that, I usually do whatever school work I am up for. Some days I'm up for a full day, while other days I'm only up for a half day. In the late afternoon/evening I spend time with my son and try to just focus on him. Then I just fall into bed whenever I am too worn out to continue. On bad days that's at 6 or 7 pm, and on good days its around 9 pm. I'm really lucky that my husband is very helpful around the house and with the baby, so on bad days he does more than his fair share. I'm not currently restricted to the house, but I can only imagine that the monotony would be hard to deal with.

Hi, dear. I get my kids off to school. I usually do some light housework and pay bills, etc. in the mornings. I lie down at about 11:00 for an hour or so. I don't sleep, but I have to lie down or I can't go on. I kind of "hit a wall." You know what I mean. I get up and make food for my family. I help my youngest with her homework. Then I usually watch TV with my family and go to bed at 9:00. But, I can't fall asleep until about 11:00. I rarely leave my house. I only go out for doctor's appointments. I cannot go grocery shopping any more because I get disoriented in the store. I am buying my groceries online. So, I would call myself semi-homebound. I am not totally bed-bound, but if I don't lie down once a day, bad things will happen (chest pain, confusion, pain, exhaustion). I think your experience is what seems to be happening to many of us. We're with you, dear friend. Keep fighting on.

I had this nice long post and I took to long and I lost it.

I've had symptoms for 2 years this April 15th. Still no diagnosis.

I arise between 7:30 -8:30 Bathrobe go eat and take vitamins. I make it a habit to be dressed by noon in regular but comfortable clothes because it will help my spirits not to look like I just got out of bed. Even at my worst when I was near paralyzed and dragging myself barely able to walk to the bathroom and back to bed.( Everything would happen after 9 am and I'd be in bed 3-8 hours again before I could sit up.) Hair is simple, little eyeliner blush if I feel like it or are doing an errand that day or church.

I live in a small farming town. I only drive up to 35 mph in town to the drive thru bank window, church, post office or Walmart. I use my car like a motorized cart and do not drive if my eyelids are half mast. It took a year before I could go to Walmart and push a cart empty or with a few items. I utilize all benches including the shoe department if I'm able to go one or two days for walking exercise. I figure if I get in trouble & need help, someone could get assistance to me. I could only do this for 4 months last year then took a turn down.

Most of the day I'm on the couch except making fast simple lunch and dinner. I do have Schwans deliver some food and keep things microwaveable or almost no prep. Husband doesn't cook, no kids at home. He does dishes, vacuum & dusts about everything 3 months, washing - I fold most of them. Sometimes have someone come clean bathrooms. (I often use unscented cleaning baby wipes instead of getting in the bath water or shower to wash myself.) I try myself to clean toilets most times.

When I'm on couch I can now sit upright reclining with feet up usually. Knees higher then bottom if feet on floor otherwise my body struggles. Often left arm needs pillow support. Early on my neck needed support for my head, I couldn't look at someone standing higher for very long without strain. Now more normalized. I eat my meals on my lap. Early on I had a hard time holding a phone to my ear or in my hand for very long and also ate with arms tucked close to my body and wrists resting on my chest. My arms when driving are better at lower steering position then up higher on the steering wheel.

I'm on the couch all day except walking back and forth to bathroom, letting dog out numerous times and to the kitchen. Some days I walk to the far corner of our neighbors property to pick up our mail. I do some stretching and flexing muscle exercises both sitting and standing briefly. Sometimes I've walked around my house inside. I don't use my cane in the house but do when out.

Hear are some things I do from my couch or on the patio if weather conditions permit. I mostly use hand held devices to visit using calls, video calls, emails, chats, Facebook, games, podcasts & YouTube for learning things, do research for genealogy or other interests, phone in support group for another life issue and sometimes host. I use my microphone to record snippets of memories for a memoir and personal history by way of emailing them to myself and later cut and pasted them to Windows documents.

I also slowly crocheted a prosthetic breast that I got direction to online with YouTube tutorials. It was a small enough project, and light weight. They also call them knitted knockers. A friend picked up supplies for me.

I watch and listen to my tabletop water fountain and sometimes change the stones positions to make sounds I like. I have small string of colored lights in a cut glass vase and battery operated candles around. Have them on when I want.

Last year I wanted to make a mini Oasis on my patio as an outdoor extension to my bedroom from the sliding glass door. If I couldn't be outside watching the clouds the dragonflies and humming birds because of it being to hot for me, I could enjoy the view of my patio while laying on my bed. I did it a tiny bit at a time and got help from others when needed. It's took me many years for me to do something that was really simple, yet it brought such joy at this difficult juncture. It allowed me a space outside my 4 walls and more of a way to feel a part of the outdoors when I needed green time too.

Tv and or Movie at night. Bed by 11:00 pm.




Sent from my iPhone

Hello. My life is much like Cmiat's.

I am not bed bound on any sort of daily basis. When I first became ill with CFS, I was in bed for a year. This is year ten and I have a better handle on things.

I wake up at four or five in the morning. I think most of us have ridiculous sleeping issues. I get up and have some decaf tea and play a mindless Internet game until I get sleepy again. I go back to bed then and wake up about 11 a.m. Mornings do not exist in Darla's world.

After I get up at eleven, my day begins. I eat lunch. Then, depending on how I feel, I will try to leave the house to go to the mailbox, or drugstore.....etc. if I am dizzy that day, I go nowhere, because I cannot drive. I have
hired someone to do my food shopping for me. My daughter does laundry. My food shopper also runs some small errands and drives me to doctors appointments.

This illness has greatly humbled me. I reach out for help. I lost my husband two years ago to cancer. He was my rock. He was my support.....and my errand runner! The girl I hired is a single mom and can use the money. It's a good friendship. We help each other! She is a blessing!

Every two weeks or so, I "crash", meaning, I have used up all my spoons (energy) and I do become bed bound for a day or two. I lay down the entire time. I do not watch t.v. or have lengthy telephone conversations. I have to replenish my energy. This can take days to weeks. I never know. However I have learned never to make plans in advance. Each day is its own and I never know how I will be feeling.

CFS is a life changer. It takes away your ability to be independent. It is something you learn to accept and we must not overextended ourselves trying to do things we used to do. We cant. Simple pleasures make me happy. Spring makes me happy! Friends and family are the receivers of all my attention and energy. My church family is very supportive. I hope you have a good church to attend. It has made all the difference for me, especially since losing my beloved.

Pacing is the key. And an understanding family is a gift. A good doctor is a must! Prayer gets me through each day. This is a hard life, but God sees to it that I want for nothing My needs are met. I'm so thankful for what I have.

Hang in there! One day at a time. Thats how we have to live.

Blessings! xxoo

For the past four years, my schedule revolved around my sweet, small.shaggy. senior rescue
dog who passed away four weeks ago. I would get up around 7:30 and take him for a walk.
If I was very tired, I would put clothes over my pajamas, or in winter a large coat over them and take him for about a 2-4 block walk. I had a lot of hats too if I didn't have time to comb my
hair. Pretty funny when I think of it all. Then, I had a large umbrella too for the winter. I'd
fix his breakfast and mine. Do whatever cleaning I could and lie down on the couch because
I had a lot of headaches this winter. I also had to lie down two or three times a
day for fatigue and rest. My energy varies day to day. On good days, I'd take him shopping
with me and he'd ride in the cart on his blanket. I am able to drive most places but not long
distance past 30 miles on the freeway. I'm still able to take some art classes in the afternoon
go to doctor's appointments, and visit with my friends and family, for which I'm most grateful.
I buy way more meals wrapped in plastic containers than I'd care to admit and use the
salad bar on a regular basis. I don't like to rely on tv dinners, but this winter I did. My little
pouch had artheritis in his back that slowed him down more and more. He had a chronic
cough. I had to carry him about a lot and got him a very cute stroller. I spent a lot of time
on vet visits and it is a mixed blessing for both of us really that he passed away in March.
He was 15. I am using this time to recover. I now go out more and sleep much later.
With the spring weather, I feel my energy returning and my moods are lifting.
I really liked reading about Emerald Eye's patio oasis. I have been doing the same with
mine, though it's on the first floor with a sliding glass door which I can see from my couch.
I don't have dragonflies, but occasional humming birds and other birds like robins and
sparrows. The lavender and rosemary are in bloom now and one canon lily. It is truly a
special green time. Warm spring wishes to everyone and thanks for this topic.

Hi - I am up about 430 with hubby to spend an hour with him, get his breakfast and get him off to work. Then I am at the pc for a little bit checking in on things and then I rest (sometimes sleep). Later I'll try to do laundry or dishes or even vacuum from my rolling office chair (so much better than a wheelchair in small areas). About then my therapy cat starts to bother me to sit so I'm back in bed resting quietly for an hour or more. Then lunch and more chores if I can. Twice a week I get out of the house. On those days I do not do any chores but what I do out, like groceries, because that's all I can handle. I am in bed and asleep by 8 or 9 if i have napped. On the weekend I wake up naturally around 7, and go to bed at about 7 at night because it's a busier time. Even just sitting in the car while we run errands (dump, visits) I get exhausted. I'm more homebound than anything else but not bedbound at this point (knock wood) - though I have been in the past. I've had CFIDS for 24 yrs. Some yrs are worse than others. Wishing you peace

I am in bed most days. If I'm able to be up, I still have to lie down about every 15 min and rest for 10 min. I start working on making a meal about 11am. I start with chopping, then come back and do the next step, and repeat until I finally get it in the oven.

I do have some days about once a week where I can go out and do shopping or run errands for a couple of hours. Standing in line is a killer though and by the time I get home I cooked for the rest of the day.

Mostly leaving the house is just for doc appts or pharmacy run. I do most of my shopping online.

I agree that standing in line is a killer. I've decided on days that the electric cart are not available, I will push the regular wheelchair with basket so I can sit down when needed especially in those blasted lines.

Emeraldeyes55 I love that wheelchair idea :) I have a walker with a seat I keep in the car but it never occurs to me to use it in the store and maybe put the little hand basket on it. Great idea :)

I was bed bound when CFS first hit me hard.
Now I am able to do things,( less than normal compared to being healthy without CFS). I have to drag myself and force myself to do even one small errand.. i am exhausted and ready for bed within first 10 minutes of waking up in the morning. On better days, I always feel exhausted (about a level 5 out of 10 ,with flu symptoms ) and I am able to goto the gym and get some cardio and stretching in...and go about my day with other activities . On the worse days, exhausted (level 10 out of 10 with flu symptoms x10,) extremely lightheaded when I first sit up in bed in the morning ,sick to my stomach with nausea , hot flashes that feel like a fever, joint aches and pain,heart palpitations and slow beats, and so over the day before it even starts. If I must go out for an errand or appointment , it's horrible . So hard to get myself up and ready when all I want to do is sleep. It feels like your literally dying. I usually start to feel better at night time .I still have all of the symptoms listed above , but they are more mild. And try not to stay up too late doing what needs to be done, or simply enjoying the fact that this is as normal as I'll ever feel. Gets depressing knowing I'll wake up feeling like I was hit by a truck and caught the worse flu virus ever imagined .