This page attempts to document the flow of a more-or-less typical day in my life as it is now, around April of 2004. Of course, there are never any days which are exactly typical and all that, but it'll give you a good idea of my health and abilities at this time.
Between 6am and 10:30am
If I've managed to sleep during the previous night, then I will be waking up slowly around now, lying in bed with my left arm around Thomas Cat.
If its before 10:30am then I'll just lie around for as long as my bladder will stand before I get up to use the commode that's immediately beside my bed (a new addition). I can't get to the bathroom anymore, not even in my powerchair, which I am not impressed about!
I spend the time cuddling Thomas, listening to the ABC - either Radio National, or 774 Melbourne or maybe even NewsRadio which is a lot more interesting that it sounds - or if I've got a great talking book (probably from NILS) on the go, I might listen to that instead.
Also, I watch my goldfish swimming, and look at any flowers I have in my living room (where my bed is). I usually don't remember any dreams when I wake up, I think my sleep cycle is so messed up that I don't seem to reach a dream state very often, but when I do dream I think over what I've dreamed. And of course I cuddle ThomasCat. Thus I while away to the time until 10:30am.
My morning shift carer (aka PCA) arrives at this time, and will get me a drink, feed ThomasCat, then get my breakfast. Almost always, when I wake up from sleep, my limbs don't work even as well as they normally do - they are extremely weak and nearly paralyzed its so difficult to move them, so usually the PCA has to feed me breakfast with a teaspoon. At first I found this humiliating and frustrating but I have got used to it now, and that the PCAs are so matter-of-fact about it helps a lot. They don't make it seem like a big deal, so I tend not to either now.
After breakfast the PCA has a variety of chores to do, from cleaning ThomasCat's litter tray, to dusting, to doing the dishses, etc., and if I am feeling up to it they may also give me a partial bed-bath (I can't tolerate all of one at once, it's too painful and exhausting) or wash my hair (also done in bed, by means of a nifty plastic device that goes under my head while I lie flat).
While the PCA is doing chores that don't require my input, I rest in bed, doing the same stuff as before they arrived. Occasionally I can also use the computer for a few minutes also, replying to old email or using IRC or a MUD.
1pm or so
About this time, I get the PCA to prepare lunch for me. I'm eating healthy at the moment, so no more Nutella-and-peanut-butter sandwhiches for me! I'm more liable to have a garden salad with no-fat dressing and some tuna from a little tin mixed in with it. When its all cut up quite small I can do a decent job of feeding myself, but some of the time my arms will still be semi-paralyzed from sleep (especially if I slept in past the time when the carer arrives) and I'll have to be fed this also.
Since I didn't eat breakfast until close to 11am I am often not readay for lunch at this time, in which case the PCA just covers up my lunch with cling-wrap and leaves it on my bed table for when I want it. But this, obviously, can only happen if I estimate that I'll be able to feed myself - sometimes I judge wrong end end up not being able to eat lunch until 4pm when my arms have woken up!
The morning PCA leaves now, making sure that I have taken my lunchtime tablets and have bottles of water and everything else I need for the afternoon within arms' reach.
Although I appreciate the PCAs and the help they provide - and usually like them as people to - it is almost always a relief when they leave. Then I can relax and not have to interact with anybody for a while, I can not have to "appear OK" or move or anything except when the phone rings or I need to use the commode again. When I am having a bad day, either physically or emotionally, I can be feeling more introverted and not wanting to chat or talk and its nice to be by myself. But on other days I will be feeling horribly lonely and desperately wish I had somebody to just sit with me and hold my hand or stroke the hair off my forehead. The labile (quickly changable) moods are a known CFS symptom, but that doesn't make them easier to deal with.
I need to rest when the PCA leaves and, like in the morning, I let the sounds of the radio or a talking book take wash over me without really paying attention and trying to understand what the presenters are saying. After I have rested enough to gather a little energy I may use the computer for a while or phone somebody for a chat, but more often I just rest and sleep for the whole afternoon.
ThomasCat usually comes and curls up in the crook of my left arm when I rest - his schedule seems to be perfectly adjusted to mine after 10 months with me. The emotional comfort of having him there is so wonderful that I try to be as still as possible so he won't go away. He radiates simple, unconditional love. No demands, just love. That's precious beyond telling.
At 6pm, the evening PCA arrives. I usually wake up from my afternoon sleep when they arrive, if not just a few minutes before.
In the evening the PCA will feed ThomasCat again, do chores, then help me decide what to have for dinner. By that time of day I have trouble even making a simple decision like what to eat, which frustrates me tremendously. Lately, having typed up the recipes for all my healthy dinners (I was helped by the dietician to select ones to go on list), I have made a list of recipes and this makes choosing a meal easier as I can pick from a list in front of me, rather than from the infinite list of "all things possible" which overwhelms me so at these times.
Having the recipes typed up has also helped the PCAs a lot, as many of them are young and often aren't much good at cooking. So recipes have improved the standard of food preparation around here, as well as the health of the food!
Occasionally, during this evening shift I have a burst of energy and I will ask the PCA to wash my hair or give me a partial bedbath. They are always as accomodating as possible to me and sensitive to my needs. I have a wonderful bunch of carers.
Before the PCA leaves at 8pm, they make sure I have taken all the right tablets, and I am set up for the night with drinks, tablets, whatever I need. I get them to turn off all the lights except the little lamp beside my bed and that one is set to turn itself down and eventually off during the late evening using the X10 home automation gear attached to my computer.
8pm until I fall asleep
I go to sleep at different times depending on how tired I am, how sleepy I am, how sick I am, how much adrenaline is in my system, and probably weird things like the phase of the moon. I can't even figure it out myself. Some nights I'm asleep by 9pm and don't wake up until after the morning carer is here ... other times I don't get a wink of sleep for nights on end!
The fourteen and a half hours between when the evening PCA leaves and the morning one arives is a very long and often very lonely time. I used to often spend it chatting on the internet to friends but this is rarely possible now, with my painfully sore hands and arms. Now I just listen to the night-time radio and sometimes, especially when I can't sleep and its very late, end up ringing a help-line like CareRing just to remind myself that there are other human beings awake in this city and that not everybody has abandoned me.
When sleep does come, if it comes at all, I usually sleep fitfully, waking often feeling like I need to pee, or because ThomasCat is walking over me (which hurts!). I don't mind Thomas waking me up, because it lets me cuddle him, but waking up needing to pee is a really annoying thing because it demands I wake up enough to safely transfer to my commode chair, and if I try to do that while I'm half-asleep I am more than likely to fall on my head which would be not much fun and could be dangerous when I'm by myself at night - especially as I'm still on the waiting list for the "panic button" pendant.
But some nights I'll sleep better than others. I'm currently fiddling around with the dosage of one of the medications with dopes me out more than mosts (it's a side-effect, not a sleeping tablet) and that's been helping some ... when it doesn't keep me all dopey for half the day, which is why I'm still fiddling around with the dose.
All in all, things are pretty awful physically and not so awful emotionally. Actually, although I still get lonely and depressed a lot of nights, I feel like I'm going better emotionally that I have for quite a while. It's not that I'm overjoyed with life very often, but I have that gentle sort of "This is OK. I can tope with this and it's not going to kill me" sort of feeling inside me often during the day, while I'm lying here in me re-arranged room with ThomasCat in the crook of my arm, and the PCA is gently bustling around. It feels OK. More OK than it has for quite a while, and I really like that.
Long live the "OK"s!