A typical day in my life. Not that such a thing exists.
Between 6am and 11am
I wake up slowly, take my first lot of pills for the day (nine of them) and then I try to lie there quietly for as long as my bladder allows and just cuddle Thomas Cat, enjoy the new morning time feeling, watch the fish and 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.
After waking up slowly, I finally give in to my full morning-time bladder and sit up slowly on the edge of the bed, waiting for my blood pressure to equalize so I don't faint. After a minute or so I carefully transfer, using arms and legs both for support, to my powerchair that is always beside the head of my bed. I drive the powerchair to the bathroom, usually followed by ThomasCat who follows me wherever I go within the house, and carefully transfer to the toilet seat.
I don't say "carefully" lightly. A few days ago while I was doing this I fell over and ended up on the hard tiled bathroom floor, in the process banging my knee on the wall and putting my right elbow halfway through the bathroom door, of all things. There's literally a hole through the back of the door! So yes, I have to be very careful.
Equally carefully getting back into my hospital bed, I sit the head of the bed up to about thirty degrees (which feels more like sixty degrees to my odd priprioception) and put the foot of the bed up some too, so I feel comfortable. Depending on the time I might listen to the radio, pick up my keyboard and use the computer for a while, or just lay there enjoying the silence until my morning-shift PCA arrives.
10:30am
My morning shift PCA arrives at this time, and will get me a drink, feed ThomasCat, then get my breakfast. Often in the mornings my arms don't work very well - they are extremely weak and nearly paralyzed its so difficult to move them - and so about half the time the PCA has to feed me breakfast. 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.
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 bed-bath or wash my hair (also done in bed, by means of a nifty plastic device that goes under my head while I lie flat).
I long for the feeling of warm water falling onto my skin, and not hurting, but the fact is that a shower is more painful than I can stand. I would be able to cope with a bath, if I had a bathtub and a bath stretcher to lift me in and out of it, but I have neither, so bed-baths it is. The bed-baths are done with liquid soap (Tea-tree, my favourite scent!) and using cut-up pieces of T-shirt type material instead of face washers. Regular face washers are agonizingly rough on my skin, and even the T-shirt material is quite painful but I can bear it.
Since Carla wonderfully bought me the shampoo basin, washing my hair is less difficult and painful for me, but its still quite an ordeal and not something I could cope with every day, unfortunately. I wish I could. Having a clean body and clean hair is such a lovely feeling, I wish I could enjoy it more often, but I just can't if I want to have energy free for other things during the day.
While the PCA is doing chores that don't require my input, I usually rest in bed and listen to the radio, occasionally writing email or using IRC or a MUD for a small amount of time. Unless I'm going to the toilet, I will be in bed with the head of the bed tilted up no more than thirty degrees, for the whole day.
1pm or so
About this time, I get the PCA to prepare lunch for me. Lately, lunch has been Nutella and peanut-butter sandwhiches because I splurged on a jar of nutella, but less decadent lunches are more usual! Since I didn't eat breakfast until close to 11am I am not readay for lunch at this time, often, and the PCA will simply cover my lunch with cling-wrap and set it on my bed table for when I want it.
1:30pm
At this time, the "morning" PCA leaves, making sure I have lunch and a drink and have taken my lunchtime tablets and have bottles of water readay for drinking in the afternoon. Although I need and appreciate the PCAs and the help they provide, it is usually a relief when they go as I can relax and not have to interact with anybody for a while. 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 desperately lonely and have to stop myself from begging the PCA to stay longer to talk to me. Yes, the labile (quickly changable) moods are a known CFS symptom, but that doesn't make them easier to deal with!
Rest of the afternoon
I usually rest directly after the PCA has left, just letting the talk radio (usually 774 ABC) wash over me without really understanding what the presenters are saying. After I have rested enough to gather a little energy I will eat lunch slowly with my fingers (have to make sure its finger-foods) and often use the computer for a while.
Around 2pm, 3pm, perhaps 4pm I will turn off the radio, or at least turn it down, and adjust the head and foot of the bed closer to my flat "sleeping" position and have an afternoon rest. ThomasCat usually comes and curls up on my left shoulder when I rest - his schedule seems to be perfectly adjusted to mine and he rests when I do. He's getting a bit heavy for my shoulder but the emotional comfort of having him there is so wonderful that I am loathe to move him. He radiates simple, unconditional love. No demands, just love. That's precious beyond telling.
6pm
At 6pm, the "night" shift PCA arrives. I usually wake up from my afternoon sleep when they arrive, or just a few minutes before. If I do happen to wake up earlier, perhaps 5pm, then I'll use the computer or listen to the radio or a talking book again. But most days, I wake up when I hear the doorbell heralding the PCA's arrival.
In the evening they feed ThomasCat again, do chores, then help me decide what to have for dinner. By that time of day I often have trouble even making a simple decision like what to eat, which annoys me tremendously, but there's nothing I can do about it. Most of my PCAs are able to cook a reasonable meal, especially as I have the same few things over and over and they are all simple, so there are no kitchen dramas. We only set off the fire alarms in the hallway about once a month, honest!
Usually I can feed myself dinner, and also lunch, but if I need the PCA to help me then I don't hesitate to ask anymore. I have got over feeling silly about needing this help, although I used to.
Occasionally in the "night" shift I have a burst of energy and I will ask the PCA to wash my hair or give me a bedbath. They are always as accomodating as possible to me and sensitive to my needs. I have a wonderful bunch of carers.
Before the night PCA leaves at 8pm they make sure I have taken all the right tablets, and I am set up for the night with drinks, a snack, whatever I need. I get them to turn off all the lights except the little lamp beside my bed and then I turn that one off myself about 9pm.
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 figure it out myself, usually. Like today its 3am and I am wide awake working on this journal entry. Other days, I am dead to the world by 9pm.
Anyway, after the night PCA leaves its just Thomas and me until 10:30am the next morning. Fourteen and a half hours without any outside contact seems like a long time, and this is when I am most likely to get lonely. I often try to go onto the internet and chat with my international friends, but when it is mid-evening my time its even later in NZ and they are asleep, most of my USA friends are at work and my UK friends haven't got up yet. So unless I encounter other insomniacs, usually its pretty quiet. I often write at this time - journal entries, articles, and the never-ending attempt to catch up with email answering.
Sleep
When sleep comes, be it 10pm or 6am, I sleep fitfully, waking often with a full bladder (medications I take mean I have to drink a lot, and therefore pee lots) or because ThomasCat is walking over me (which is often painful). 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 wheelchair, to the toilet seat, and then back to bed, as previously described. If I try to do that while I'm half-asleep I am more than likely to fall on my head, which isn't so much fun, you see ...
