By Jodi Bassett, June 2004. Used With Permission.
Please send comments or queries to: jodibassett@bigpond.com.
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
