A Typical CFIDS Day
"...No matter what you call it, Myalgic Encephalomyelitis, Chronic Fatigue Immune Dysfunction Syndrome, or Chronic Fatigue Syndrome, having it is a life devastating experience.
- Phyllis, alt.meds.cfs..."
"...This page started when I was trying to think of a way to explain to my family what it was like being sick. I moved out of home after I got sick, yes, but I'm a lot sicker now than I was when they saw me all the time. But feelings are so objective ... so I decided that the best way to describe to them how I feel is to describe what I can do. I'm not sure anymore that this is the best way - it requires one huge assumption, that I am doing the best I possibly can.
When I read what I've written here, I think that it looks like I'm just lazy. Please know that this is not true, what I do every day is the most that I can do without making myself sicker. I know that it's the most I can do because every month or so I get too frustrated and do too much ... after doing that I am sicker and sorer for a few days and can do even less. I try not to do that too often.
Like the rest of you, my day varies according to what I feel like doing, and it also varies with how sick I am. But this was my best attempt at a "typical" one as of about December 1996. If you read the journal section you'll know that I'm a lot sicker now (January/February 1997) than I was then, so this doesn't apply to me much anymore, but it's still a useful description..."
Somewhere between 4am and 8am
I wake up suddenly. The sort of waking up where you just know you won't get back to sleep. It happens when I hear a noise, which might be a house-mate getting up to go to the loo, or just a truck going past - I sleep so lightly that even soft noises will wake me up, and then can't get back to sleep.
If it's very early and not too cloudy I look out my window and watch the sun coming up. If it's cloudy I have to shut the curtains because the glare hurts my eyes, this always seems strange to me, that I can tolerate looking at a sunny sky but not a cloudy one. When I get bored I turn the radio on, listen to a book-tape, or prop myself up with a few pillows and turn on the computer - it's right beside my bed at the moment because I got too sick to go out to the office where it usually is. Because I'm in Australia, I can usually find American friends on IRC or a MUD at this strange hour, and if not then I answer the inevitable backlog of email. I usually think best in the mornings so it's a good time for computing.
7:45 am or so
My housemates get up and start getting ready for work. Sometimes I get up and crawl into David's bed beside him while he wakes up, but usually I just lie in bed and listen to them. I've discovered that I can tell what they're doing by the noises, so I lie in bed and follow their actions with my ears - Kirrily's radio turning on, then Kirrily knocking on David's door to wake him because she knows he won't get up otherwise, then the various noises of showing and clattering around in the kitchen and getting dressed. I quite enjoy just lying there listening to them, for some reason it makes me feel like I'm part of what's going on just to follow it.
Just before 9am
Kirrily and David leave for work, they come in and say goodbye before they leave which I appreciate. They won't be home until 6pm at the earliest and 9 hours alone can be a very long time some days. I listen to them going out the door and then relax slightly. I know that I can be myself with them, but at some level I feel that I need to "behave" myself when there are others around. If there's nobody here it doesn't matter what I look like, or if I cry or rant about how unfair it is.
Somewhere around this time I slowly get up. I'm usually very stiff and sore from lying still for so long, but I'm not allowed painkillers until breakfast so I have to get up. I sit on the edge of my low bed (it's a double futon) for a minute and then stand up, usually I need something to hold on to because I feel weak and dizzy when I stand up. This is one time I appreciate all the walls in this house - there's always one to hold onto! If I'm feeling okay I have a shower, this isn't as energy-intensive as it sounds, our shower-head can be lowered quite a lot, so my usual technique is just to sit down on the shower base and let the water flow over me. Having a crewcut means that hair-washing is a trivial activity, which is good because lifting up one's arms enough for washing hair can be difficult.
In the kitchen I've put my desk chair, it's of the sort where the seat goes up and down and it's on casters, so it makes a sort of semi-wheelchair. I can sit on it and then sort of kick myself around the kitchen with it while I make breakfast - usually tomato toast made with special bread or rice bubbles with rice-milk (I'm allergic to a lot of stuff, so the usual breakfast things are out). Yes, I can usually stand up long enough to make toast or cereal, but I don't see any point in tiring myself out doing that when I'd rather use my energy for things like friends and studying.
Rest of the morning
This really means everything between breakfast and lunch, it might be 6am until 10am, or it might be 12pm until 4pm although both are extremes. I've decided that working with my body as far as possible is most useful for me, each time I try to regulate my sleep cycle I end up messing it further. However, 9am until l2pm is a fair average of what I define as morning. This is my "active" time. I have a list of things which I do in the mornings, it changes depending on my state of health and current interests, but it usually includes things like:
- Isometric exercises
- Stretching exercises
- Tidy bedroom
- Walk in the park next door
- Household chores or gardening
(The current list is 20 items long, but it repeats some things). Each activity lasts between 5 and 20 minutes - the more active the thing is, the shorter time I can manage it. I set a timer for 20 minutes when I start something because I know from experience that if I do more than that I'm overdoing it, but I allow myself to stop earlier if I feel like I need to. The list works in a slightly strange way, if I do (say) activities 1, 2 and 3 on Monday, then on Tuesday I'll start with activity 4. This way I make sure that everything gets done with approximately equal frequency no matter how many or few of them I can manage. At the moment I usually get 2-4 activities done each morning. I try to stop and lie down between each activity even if only for five minutes, it is easier for me to listen to my body when I'm horizontal (I have no idea why!) and if it's saying, "STOP!" then I need to know or I'll make myself sicker.
Lunch time Back into the kitchen and my office-chair again to get lunch. Sometimes I have toast again, sometimes pasta, sometimes microwaved potatoes or something else a little more exotic. It has to be simple because just the effort of sitting up and using my arms for cooking is usually difficult.
In my lounge room, we've put one of our outside recliners, the sort where the back can be adjusted until you're half lying down. There's pillows around it so I can prop various bits of me up until I'm comfy and I often sit there and watch TV or a video while I eat lunch. If it's a nice day and not too windy then I sit somewhere outside in the shade on our other outside recliner. I enjoy being outside, I can watch the clouds, listen to the kids in the park next door, and generally just lie there and feel peaceful while I eat lunch.
This is the time between lunch and when my housemates get home from work, typically about 2-5pm. I spent it in bed most days because getting breakfast and lunch and doing a few activities tires me out and makes me hurt too much for more. That doesn't mean I do nothing, I often spend an hour or two on the computer talking to friends, answering email or working on a web page. I also write programs, but this can only happen on days when my brain is co-operating and this hasn't happened for the last month. I'm frightened that it won't come back again, and I *like* being able to program, it's important, but I try to be patient and wait.
Sometimes I watch TV on the reclining thing. Also I listen to music, and the books-on-tape that the Blind Institute sends me. Sometimes I read, but holding up the book and concentrating hard is tiring, and often I my brain isn't co-operating with me enough to be able to understand what it's saying anyway. I have four books that I love and have read so often I've nearly memorized them, sometimes when I'm sad about my head not working I read these because even if I get lost with the words I know what the story is :).
I'm best if I can spent an hour or two actually asleep in the afternoon, but usually I can't. It's very hard to fall asleep deeply enough not to be jerked awake every time a car goes past or a bird chirps or a child yells in the park next door. Often I just lie there and exist for a few hours, not trying to sleep because I know it makes me stressed if I can't, but just listening to my breathing and existing. I guess it's a form of meditation.
6pm or so
Kirrily and David come home from work! Both of them usually sit on the edge of my bed for a while and tell me what happened during the day, and again I really enjoy it. It's seems like about my only link with "normality" sometimes. Then usually one of them cooks dinner, if it's David cooking then we get something Asian, usually a variant of stir-fried random, if it's Kirrily then pasta is often on the menu. That's not all they cook by a long shot, but it's the most common and I'm writing a typical day, remember? Almost every night they are careful to cook something that I can eat, which is great for me and makes them think a lot and be creative in the kitchen!
Until about a month ago I made an effort to go eat in the lounge with them, but lately I'm too tired to sit up properly and eat at the same time. So mostly I eat by myself in bed, and sometimes one or both of them come in and sit on the edge of my bed and eat and talk. Sometimes I like that. Sometimes by dinner time I'm so tired and sick-feeling that I don't feel sociable enough for it though. It's difficult to feel sociable when every part of you hurts and your hands feel too heavy to lift up a fork and you're trying to ignore the nausea long enough to eat something.
Depends on how I feel. Anything from going to bed right away and lying there staring at the ceiling for an hour or so until I fall asleep, to sitting on IRC until after midnight. The latter, unfortunately, tends to be detrimental to my state of health, but that doesn't stop me doing it every week or so. My friends are there!!
Night time I sleep really lightly, so anything from a truck to a full bladder will wake me up. I usually wake up at least once before I can't get back to sleep at all, though.
Repeat from top for between 6 months and 50 years ... I'm sure you get the idea ...
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