Like the rest of you, my day varies according to what I feel like doing, and it also varies a great deal according to how sick I am that day. These are my best attempts at a ‘typical’ day I would have around and near the given dates. To see some actual days, which often are quite different, check out Journeying/Journalling, my online journal.

Typical Days for Me

• December of 1996 (score on the Jill Moss Scale was not measured at the time, but was estimated afterwards to have been around 40-55%).
• June of 2000, whilst scoring around 25-30% in physical ability on the Jill Moss Scale.
• October of 2003, whilst scoring around 0-5% in physical ability on the Jill Moss Scale.
• April of 2004, whilst scoring around 0-5% in physical ability on the Jill Moss Scale.

Typical Days For Others

• Jodi Bassett, June, 2004, a great description of her "typical" days.

Like to add your own typical day description? Just leave a comment or contact me.

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This article was originally published at Typical Days With Fibro/CFS and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

I’m a 28 year old Australian woman and have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome for almost ten years now. I have based this account on an actual day I had recently and although it’s a notoriously unstable illness, it’s an accurate snapshot of my life at this time, an average day.

… I become conscious not all at once but gradually. Immediately though, I am aware of immense burning pain in my throat, eyes, head and legs. For a long time there is very little of my consciousness that isn’t just pain, it’s all I am aware of. I try to move but nothing happens except I begin to feel sort of like the room is spinning around me. I feel my eyes roll back into my head and so I close them tight willing the spinning and rolling to stop so I can get out of bed. I become unconscious again.

This happens two or three more times.

Then I wake up again some time later feeling much the same as before but a little more aware this time, able to think a tiny bit more. I try to move and find I can’t. I can move only my eyes and only for very short periods and with extreme effort and they still keep intermittently rolling back into my head (nystagmus). I’m caught in alternating waves of vertigo and pain.

This paralysis, vertigo and pain lasts for about an hour and a half and I am conscious the whole time just lying there unable to do anything and feeling just horrible. As usual I’ve also woken up bathed in sweat and very hot and I am desperate to throw my blankets off, but I can’t move at all even to do that. I just lie there getting hotter and hotter.

Very slowly the paralysis lessens, I become more and more awake and my awareness of my body increases, bringing stronger, sharper, and more well defined pain with it, especially the glands in my throat, they feel like soccer balls about to explode. The urge to urinate that I’ve been trying to ignore for the last hour or so becomes impossible to ignore (any longer than I’ve been forced to already) and so I move out of bed in one quick movement and feel the world roll backwards and sideways to meet me.

It takes a few moments to work out where my legs are and how to move them and then I shuffle stiffly to the loo, eyes half closed against the painful sunlight that streams in through a nearby window, arms out slightly as I feel always on the verge of falling, touching the walls for balance, bumping into them as I go, sometimes quite painfully. I’ve lost that sense of where my body is in space and am always misjudging things, I always have bruises.

Trying hard not to pass out on the loo, I lean right forward and breathe slowly trying to think of other things. My heart struggles to pump as I get up, it races and then beats very forcefully for a bit and then sort of starts beating in a deformed kind of slow motion. The beats are just all wrong. It feels like there no blood or oxygen getting to my brain. I shuffle slowly to my permanently darkened day room where I lie down and pull the blanket closely around my body as I start suddenly to feel very cold. An hour passes, in room spinning, head hurting pain and only the most simple of thinking processes. I think thoughts like “hurts, cold, heart isn’t working right, dizzy, stop, want to be sick, you will get through this just hang on”. It takes about an hour to recover from the exertion of the loo trip.

Slowly the urge to eat becomes larger than my nausea and I ask my mum (by intercom) if she’ll make my usual eggs (which I hate with a passion but are the only thing that I am not intolerant of in some way). The eggs are brought to me (with a concerned smile which I return) and I look at them wishing that was all I had to do with them, they repulse me so much. I have no idea how I’m going to get them down let alone keep them there for long…. I lean over and grab a remote and turn the TV on to help me to mentally block out the taste of the eggs and to extend my attention span so I don’t just eat a mouth-full and drift off into vague thoughts for half an hour. I don’t look down at my plate barely at all, I focus as hard as I can on the TV and usually I can sort of trick my body into eating in this way.

After eating all I feel is exhaustion. I lie still and immobile with the effort of eating, my jaw aches, as do my hands and arms and I try hard not to think about the eggs I’ve just eaten lest they come back up. The eggs do very little for my steadily increasing hypoglycemia and after about a half hour the slow thinking, dizziness and feeling of falling that is low blood sugar becomes so strong that I know I must attempt lunch, so I press the intercom buzzer by my bed.

Lunch arrives with a few nice words from mum, she always has something funny or interesting to say to keep me going. I have to put my hand over my eyes as she speaks as her movement makes the room spin and I feel unconsciousness pulling at me again. The stimulus is just too much for my eyes and brain this early in my day. My body craves complete immobility, silence and darkness. I smile in reply, grateful for the words but unable to speak at all myself. She leaves the room quietly. Before I can think about it too much I start to eat the already cut up steak and the mushy coleslaw. I eat lying down almost completely flat so that my heart can keep the blood pumping into my brain as I eat. Again I turn the TV on to distract my body and brain from the food I’m eating and the pain that it’s causing to eat it. I barely look at the food instead concentrating as hard as I can on the screen, pushing though the pain and weakness I feel in my jaw, hands and stomach. With a sense of great relief I finish the last mouthful. I am so far beyond exhausted.

The edge has been taken off the hypoglycemia and that’s all but I can eat no more I just have to wait now for it to slowly affect my blood sugar. I feel completely mentally exhausted as well as physically, all the concentration, tricky strategies and positive thoughts needed to persuade my body to do the things I need it to do and to just keep going are difficult and exhausting in themselves.

I take that mornings scheduled medications and then I slowly sit up and stagger again, even more slowly this time, to the loo and back. My heart beats strangely all over again as I gratefully lie back down flat in bed. It takes about an hour for it to return to anywhere near normal again. I feel pretty vague again during this recovery time, just completely spent in every way.

After a while, despite the blanket and the warm food I’ve just eaten I also start feeling steadily colder and colder. I pull my thick blanket tighter around my neck and turn my heater on from my bedside. I start to shiver slightly. The shivering intensifies and I start to really shake with the cold, the coldness feels like it is right into my bones, like they are made of ice. I start to feel sick to my stomach; my flesh feels starts to feel warm and feverish while my bones get colder and colder. It feels like my hot flesh is about to melt off my freezing cold bones, it’s a really horrible feeling. I instinctively curl up in a rigid ball trying to reduce my surface area and warm up. I become unable to move at all my body is so rigid and I am so cold, my thoughts become very slow and confused, I feel a feverish sort of delirium, my teeth chatter and then my eyes roll back into my head as I become unconscious.

A couple of hours later I wake up completely covered in sweat. After a few minutes spent working out how to move and where my arms are and stuff, I throw my blanket off and turn off the heater, then lie there completely still, unable to think or move, just lying there. A few moments later I feel my breathing become very shallow, like my lungs are not expanding as much as they should, or like my body isn’t getting the oxygen into the bloodstream somehow. I sit bolt upright in fright and the change of position seems to help thankfully. I lie down once more and it happens again until I eventually work out exactly how to lie in a way that lets me breathe enough, though it still doesn’t feel right.

After some time has passed I happily find that I can breathe again without problems no matter my position, I put on some soft classical music by remote control, to give my brain and mind something nice to focus on. It works, and slowly I am able to think a tiny bit, intermittently anyway. I try not to dwell on all the bad physical stuff, instead thinking of happier topics or laughing at elements of my situation with some pretty black humour.

After an hour or so I feel like I have finally ‘woken up’ for the day and I walk slowly back to my bedroom to change out of my sweaty nightwear and get dressed for the day and then I decide to search out mum or dad for a short chat. Just about simple things, nothing I have to think about too much. If the chat is light and superficial enough, (as it is today) I can fool myself for a bit that I’m okay, and have a fairly normal conversation for a short while. Today they are both in the kitchen and both more than happy to talk to me. They are always really glad to see me up and talking, they worry about me so much I know so this short chat probably does them almost as much good as it does me. Reassuring us all that I am not as bad today as I could be. We always find something to laugh about too which I really love about my family (especially my sister).

After a few minutes though my brain stops working and I am unable to speak anymore, my body becomes wobbly and faint and I need to go back and lie down again by myself in my dark room. My heart races and the room spins for a while until I recover from the talking and sitting up. It doesn’t take too long thankfully. I make myself a protein shake and then I watch a bit of TV but don’t really take anything in. I decide I’ll try to maybe read for a while, perhaps the fantastic book I started yesterday about …

SUDDENLY A DEAFENINGLY LOUD NOISE ERUPTS INTO THE ROOM!

… Instantly my thoughts dissolve into nothingness and the world drops away, no longer beneath me. I am surrounded by nothing but pain. A tidal wave of it crashes over me and I forget who I am. There isn’t room for anything but this pain. There is no thought, no words, no sense of self at all. Time is suspended. I have never been suicidal but if I could press a button that would make me cease to exist at that moment I would press it gladly without a seconds thought. This is just more pain than anybody should have to go through ever. It feels inhuman. I feel inhuman.

I can’t remember anything I’ve said or seen that day or much of what I’ve said or done in the previous weeks. The noise causes such neurological disturbance and overload it seems to dissolve all my recently laid down memories so that I am unable to access them. I also forget how to walk, talk and also to understand speech. Every cell of my body and brain just screams. For a few minutes I am in this state, in unbelievable agony but unable to work out what it is, who I am and what is happening, my brain is completely overwhelmed. I think loud noise causes me some kind of seizure.

Slowly two words fight their way through the swirling pain… “make stop”. It’s primitive. I don’t think them so much as feel them bubbling up primally from deep inside me. I repeat them over and over in my mind knowing somehow they are the key to stopping this pain but not really understanding what they mean or understanding the abstract concept of words at all…… I repeat them to myself until I realize that I must do something to make the pain stop. I lurch stiffly on legs that don’t feel like my own out of the room, holding the walls for support, moving with jerky movements and much hesitation, running on pure animal determination and desperation, my eyes wide with terror, my heart beating erratically, all my thought going into each step forward. The noise becomes louder as I move though the house and for a long moment I stop still, forgetting what I am doing altogether; the last thing I remembered was watching TV, what happened I wonder?

I stare blankly for a few minutes trying to work it out then slowly vague realization comes back that I must keep moving and I lurch forward again, my task confused now in my mind, but still urgent. Luckily my mum is home. I see her standing there in the kitchen and the first flicker of hope enters my mind fleetingly, she has her back to me. I’m aware as I get closer that my face is slack and my mouth open and my eyes staring blankly but I cant move them at all. I try to speak and find my voice has gone, it’s barely audible and unbelievably painful, but I push through it and manage to get out “noise… stop…… please!”

She turns around, looking frustrated, “Your brother is just washing his truck with the high pressure cleaner” she says. My adrenaline rush has run out and I feel so ill I know I must lie down so I turn to go, feeling very confused. I can’t work out how this statement explains anything or is relevant to me in any way, but I accept it and turn to leave.

I feel I will vomit so I stagger to the bathroom, on the way I catch sight of myself in the bathroom mirror, I’m white as a sheet, my eyes stare blankly ahead and my mouth is slack and slightly open. I don’t recognize the reflection as me at all. I sit on the loo for what seems like an hour, feeling very ill but not quite ill enough to get the release of actually vomiting, so I lean forward and sit there rocking backward and forward a bit and just uncontrollably shaking and wonder what to do. I can’t think of a single option, they are all intolerable. The only way to stop the pain is suicide but I so strongly don’t want to die, especially by my own hand, I don’t want to kill myself, I just want the pain to stop. It’s unbearable. My thoughts go around in vague circles, offering up no solutions just more desperation.

Eventually the noise stops. I’m told later that it only went for 5 or 10 minutes, though to me it feels like about 3 days but also like this has been my only reality ever at the same time. I can’t really remember much from before the noise, or remember what it’s like to not feel this way.

I can barely remember my own name, but worse than that, I struggle to remember who I am – what I like, what I think, things I’ve done, what’s important to me, anything. Emptied by intense stimulus my brain is completely unable to access all the happy thoughts I keep there, the memories that tell me who I am. The strong sense of humour that always keeps me going is lost, it’s there but I can’t work out how to find it my brain is so confused. My mouth still gapes open and my eyes stare blankly, I can’t make my face form normal expressions or focus my eyes properly, it’s all just slack muscles out of my control.

The noise has stopped but the awfulness doesn’t go with it, my ears ring and my brain cavity feels hollowed out and empty but shaking, still vibrating with the noise. My entire body is in shock. I feel catatonic, like I have just had the most enormous seizure that’s irreparably damaged and completely reorganized my brain, changing who I am. I make myself lie down and put on a favourite comedy video, with the volume down very low. The only way to get over the shock is escapism. Immersing myself in a happy movie or favourite TV show on tape which I do for the next 3 hours or so, forcefully refilling my brain and mind with thoughts of happiness and normality and trying to fill in the emptiness and the complete void that is my brain in extreme shock.

My mum comes in to see how I am and all I can hear is “waa waaa waaaa”, I can’t make out any words at all, it’s like she’s speaking Russian or something. I can understand the tone but that’s all, it scares me. I look at her face and don’t recognize it either, but I gather from the tone and the clothes that it is indeed her. I try to look at her and convey “I’ll be ok eventually” thoughts but my face is still slack and much as I try, I can’t speak, all that comes out is “ughh”. My lips won’t form the words. I just look at her hoping she’ll see from my eyes what I’m trying to say. She leaves the room.

After a few hours I start to get a sense of myself again and I am finally aware enough to realize what has happened. I feel hurt and then very angry that this has happened to me yet again. I feel stunned – all this for as clean truck, was it really worth it? Will the next 3 or more days of extra pain I have to look forward to be worth it? Don’t I have enough already? The truck will probably be dirty again by then. I don’t understand how the people I love most in the world could think it was okay to let this happen to me, I feel an abyss open up before me, a profound sense of loss of hope, and a fear that I am without love, and that without that what is the point? I pull myself out of it after a few minutes by remembering all the good things in life, small happy things. I spend a few minutes thinking of as many good things as I can until I feel calmer and less hurt. I reassure and remind myself that my family does love me. I know for a fact they do, and that they are doing the best they can and that I will also always have myself to cheer me up when I need it and so I will always be okay, I can always rely on myself.

I feel the inevitable hypoglycemia return and so I manage to stagger to where my parents are to ask for dinner. They both immediately stop what they are doing and they each ask me concernedly if I am ok and I say “yes” but I know my eyes are kind of blank and my voice is weird so maybe they don’t quite believe it but maybe it helps for me to say it anyway. I don’t know, I hope so. Mum asks me if I need anything else or if there’s anything else she can do which is really nice but I can’t think of anything really except for dinner so I shake my head (which makes me almost fall over) and then turn to walk back to my room.

Dinner arrives and I eat slowly and mechanically, lying down flat and with the TV on as always, then I take my second lot of tablets. I lie still for ages afterward recovering from the exertion of eating again. My cat comes into my room to visit me and I pat her for a while and then wiggle her toy mouse around a bit making her jump around madly trying to catch it. She always makes me smile and asks so little in return, I don’t know how I’d cope without her.

I make another slow toilet trip, then spend an hour or so recovering from that with my cat curled up asleep by my side. I put a pillow over my head to make the room extra dark and the weight of it on my head stops the vertigo a little bit too as well as blocking out some of the household and traffic noise. My heart pounds and my eyes feel like they’re burned from all the TV (3 hours of it is way more than I can handle these days) and so I decide to have a late night bath. The heat makes my heart worse so I have to get out after only a few minutes. My eyes feel heaps better from it though. I get out feeling very wobbly and faint, it’s really hard to lift myself out too, but thankfully I manage it okay.

I lie down and the room spins and my heart beats really erratically. It feels like it’s really struggling. I lie there for ages before I remember I have a tablet for that. I know getting up to get the tablet will make my heart worse but I decide to take the chance and so I get up to find the bottle then go back to bed, my heart beating even more feebly than before.

I try to read for awhile but can’t really focus on the words. I have to keep changing the position I am lying in or my muscles become stiff and painful but every time I turn over the room goes black for a few seconds and my eyes roll back in my head and I have extreme sensations of vertigo that make me want to hold on to the edges of the perfectly flat bed so that I wont fall off the edge. It’s a really horrible feeling.

I keep doing it though. I roll over and the room spins and then I read a bit more, become stiff again and roll over again completely forgetting each time that it makes me really sick. I do it again and again no matter how hard I try to remember to lie still, I just keep forgetting and the vertigo gets worse and worse each time. I feel like I have all the memory capabilities of a tipsy chipmunk and the thought depresses me almost as much as the vertigo attacks.

I sit up for a few minutes and rather dodgily put nail polish on my toes not so much for something to do but so I’ll have one positive thing to look at tomorrow, (holding my breath as I do it so the fumes don’t give me a headache) something small to remind myself the day wasn’t a total waste and to keep going. I know I’ll probably need it. I then make myself another protein shake.

I’m exhausted but not at all sleepy, I haven’t felt tired or sleepy for years. I reach over and take some Melatonin. Half an hour later nothing has happened so I take some more. Again nothing happens so I put a meditation CD on by remote control, I cant focus long enough to really meditate like I used to but it’s soothing somehow anyway. I feel more relaxed mentally but my heart is still beating wrong so I take another tablet. Then I lie there for 3 hours trying to sleep but it doesn’t work, I’m still wide-awake. My joints have started to really ache too thanks to the stormy weather brewing outside.

I’d love so much to be able to ring one of my friends right now, but even if it weren’t 3am, I’m just not well enough to manage phone calls at all, it’s one of the things I miss the most.

I decide to get up and go to the bathroom to wet my face and arms to cool myself down then go back to bed taking yet more Melatonin, but this time it works. I go from completely alert to fast asleep. I sleep through what is left of the night….

….Only to be woken by a loud noise in the early morning which starts the whole process off again, worse than before because this time I am already exhausted and haven’t slept properly beforehand. .

Severe ME/CFS is basically a living hell.

I am not the most severely affected either. One of my close friends has 5 times had to be resuscitated because she stopped breathing completely due to severe ME/CFS, another friend is completely bedbound and needs help with toileting and all her personal care, she can’t even brush her own teeth and other people have even died from the illness. I’m also fortunate enough to have the support of most of my family, many people aren’t so lucky. My parents are always doing all sorts of things to keep me going, from re-arranging my furniture and stuff every now and then (at my request) so my spending the last 4 years in basically the one room doesn’t drive me completely insane, to just being there when I need to vent my frustration as well as cooking all my meals and doing all my washing and cleaning.

I really have no idea how I’d cope without my parents, my sister, or the handful of amazing pre-illness friends I have that have stuck around or the great new (and also ill) ones I’ve met as well. Having a great doctor finally also really helps. Plus my cat! I am very, very lucky in some ways.

This has taken me 8 months to write on and off, bit by tiny bit. It’s only the stories of the mild and moderately ill you hear about usually and people need to know that ME/CFS can be a much worse illness than that and that we need so much more help, understanding and money for real research than we are currently getting

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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.

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!

1:30pm

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.

Afternoon

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.

6pm

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.

Sleep

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.

Conclusion

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!

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This article was originally published at April, 2004 – A Typical Day and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

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 …

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This article was originally published at October, 2003 – A Typical Day and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

5:40am
I woke up feeling extremely nauseaus, as per usual. Climbed out of bed and found some medications for it then back to bed. I tried to go back to sleep (something I rarely manage) but couldn’t so I lay in bed staring out at the blackness out the window and at the one star I can see through the city lights and dozing a little. Some days I watch the sun come up.

7am or so
Give up on sleep. take morning meds. no breakfast.

I gave up on trying to get back to sleep and got up. Showered, sitting on my lovely shower chair and enjoyed the hot water. Then I took my morning pills and got dressed in a comfy tracksuit. I still feel too nauseous for breakfast so I skip it.

9am
Spent some time computing, answering email and chatting to friends on the net. I get up every few minutes to stretch and just move around so I don’t get too stiff and sore sitting down.

10am
Went out for my daily walk. I can go around about 1/3 of the block where I live at the moment, and even that tires me out and gives me a headache. Today I took a short detour to the park and swung on the swings for a few minutes. Swinging takes a surprising amount of energy so I can’t do it for long, but it’s fun.

10:20am
To bed to rest up after my walk to try to get rid of the tiredness and the headache. I can’t usually sleep during the day so today I listened to some tapes from the talking book library while I rested.

12pm
Got up again, I’m too sore to rest anymore. My head still hurts, and my shoulders and back and legs and arms too. All of me really, though my shoulders and back are the sorest. I cried a little, it’s hard to cope with the pain all the time.

Spent a bit more time on the computer, chatting with friends and being comforted about how much I hurt – I don’t know what I’d do without computer friends to send virtual hugs when I hurt badly. I think I walked too far in detouring to the park becuase it hurts more than usual. Damm.

Pottered around and very slowly managed to straighten up my front room in between chatting to net friends.

1pm
Watched some daytime TV, lying down on the sofabed.

1:30pm
I had two saladas with vegemite for lunch, that being all my stomach agreed to cope with. Then back to bed for more resting, lying down and listening quietly to the radio.

3pm
Still lying down … spent an hour on the phone to Nikolai who always makes me laugh and feel a bit better about the world.

4pm
Spent another half hour on the computer reading some fan fiction – good stuff. Then back to bed. Phoned some more friends and chatted in between listening to the radio.

6pm
Took some more nausea medication to let me have dinner as my stomach was still playing up. Dinner was microwaved meals-on-wheels fare which is filling and healthy, if a little boring. I ate from my lay-back deck chair whilst half-watching some boring (as usual) TV.

7pm
Bedtime. I lay there for a few hours listening to the radio and to some tapes before I dozed off about 9pm.

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This article was originally published at June, 2000 – A Typical Day and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

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.

7:45am 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:

1. Isometric exercises
2. Studying
3. Stretching exercises
4. Relaxation
5. Tidy bedroom
6. Walk in the park next door
7. 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.

Afternoon
This is the time between lunch and when my house mates 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 memorised 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.

After dinner
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.

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This article was originally published at December, 1996 – A Typical Day and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.