I am always intrigued by the stories of patients from around the world with ME/CFS. So many are so close to my own and yet have their own nuances, reminding me always that this disease is never the same for any one patient in how it behaves, when or what it attacks or exactly how it progresses. This is one of many things that makes it so difficult to study, diagnose, treat the disease, though of course this is far from the whole picture.
Still, I put up these stories in the hopes of reminding people that we are all people with lives, hopes, dreams. We all had/have accomplishments, goals, desires that this illness gobbles up and runs rampant over. We all have our losses, not of body alone, but of mind and spirit, of support and family, of love and life, of existence.
This is Jody’s story.
A day in the life of severe M.E.
Copyright © Jodi Bassett July 2004. This version updated March 2009. From http://www.hfme.org
At the time of writing this, I was 28 and had had Myalgic Encephalomyelitis (M.E.) for 9 years. I based this account on an actual day I had at that time and although it’s a notoriously unstable illness, not just from day to day but from hour to hour as well, it was an accurate snapshot of my life at this time, an average day in my life.
…..I become conscious not all at once but gradually. Immediately though, I am aware of an 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.
I become conscious 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 alert mentally 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 (but nevertheless painful) 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 toilet, 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 toilet, 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’s 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 with only the most simple of thinking processes going on. I’m conscious, but my body isn’t working very well, which makes thinking physically impossible – the brain is merely another organ after all. 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 toilet 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 one of the rare foods 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 were 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 barely look at my plate, instead 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 I feel very, very ill. I lie still and immobile from 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 hypoglycaemia 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 again.
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. (I have to lie completely flat very nearly all of the time actually for this reason). 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.
The edge has been taken off the hypoglycaemia by what I’ve eaten, but it will be hours before I feel the full effects (if at all), my body is so slow to raise my blood sugar. I feel completely mentally paralysed 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 make me even more ill in themselves.
I take that mornings scheduled medications and then I slowly sit up and stagger again, even more slowly this time, to the toilet 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 ill 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 in 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 (painfully) 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 (although very uncomfortable) lets me breathe enough, though it still doesn’t feel (and indeed isn’t) quite right.
After some time has passed I discover with some relief that I can breathe again without problems regardless of my position. I then put on some soft classical music by remote control, to give my brain and mind something nice to focus on. It does the trick, 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 finding small shreds of amusement in 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. It reassures us all that I am not as bad today as I could be. We always find something to laugh about too, which is something 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 awhile 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 I 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…
To continue reading, and access more stories like Jody’s visit A Day in the Life of Severe ME
If you’re interested in telling your own story with neuro-immune illness, would like to share a successful treatment you have found or would like to talk about anything else in relation to your illness and experiences, consider writing for DD! Contact @caplestrange on twitter with your idea.