I just couldn’t work out what was happening at first. I even thought I might be somehow ‘scared of the dark’ for a little while, as ridiculous as that sounds now. (That was all I could come up with! I just had so little accurate information about my illness at the time… well, no accurate information at all to be more precise as I was misdiagnosed as suffering with depression and anxiety for many years. The fact that I had no feelings of depression or anxiety – and that I did have a whole host of very physical symptoms which couldn’t possibly be explained by any mental or behavioural condition – didn’t seem to bother my doctor at all strangely enough.)

Through a lot of trial and error however, I finally found out what was really happening: that my systems of balance (my vestibular systems) and sense of where I was in space (my proprioception) were damaged – or at least no longer working as well as they did, or reliably. (Your vestibular systems control your sense of balance and tell you which way is up etc. Proprioception is the ability to sense the position and location and orientation and movement of the body and its parts, from stimuli within the body itself.) I also worked out that my body had adapted to this damage to some extent (as the brain will often do) by using my vision to compensate. This was great, but of course it meant that if it was dark or if I closed my eyes, I’d be back to square; which was exactly my problem!

Once I’d worked all this out, I started going to sleep with a night-light which helped immeasurably. I started off with a big light but soon found I could make do with a very small one thankfully. (The room is still very dark but there is just one small corner of the room lit up so that I can see it well enough to tell which way is up.) It is still quite awkward though as I have to keep my eyes open and looking at where the light is for as long as I can when I am trying to sleep. I have to go to sleep without having my eyes closed for very long beforehand, which is difficult as you can probably imagine.

Another problem was/is that I very much need to rest throughout the day with my eyes closed, or else my eyes hurt too much and I am overstimulated neurologically. I found I just couldn’t do it though, closing my eyes made me so vertiginous. It made me sit bolt upright with a huge JOLT every few minutes to stop myself ‘rolling off the edge’ of my perfectly flat bed. But eventually I found a way around this too; I found that I must put a weighted bag over my eyes to cover them when I rest with my eyes closed. The weight of the bag tells my body which way is up, compensating for the lack of (already compensating) vision when I close my eyes. It is a very happy day when you finally work out how to ‘outsmart’ a symptom like this!

I have a lot of trouble completing tasks (including walking) when there is any other movement in the room. If I want to use the microwave for example, or get myself something out of the fridge even, I need to ask everyone else in the room to sit down and not get up until I’m finished. Such requests don’t make me very popular (understandably) but it is the only way I can get around this problem. It is either that or I can’t do the task at all, and (like anyone) I prefer to do things for myself if at all possible, of course."

Two recent Holter monitors I had (a type of heart monitor) showed that my heart-rate went up to 170 bpm when I was having these kinds of attacks (among other abnormalities). I didn’t have anything like a severe attack while having the monitor on either, but 170 bpm is quite scary enough and I don’t want to know really if it gets much worse than that. (Cardiac problems are one of the most common causes of death in M.E.).

My blood pressure is also abnormal (low and labile) in response to these same exertions, which is also quite scary. I can feel my blood pressure get very low, then return closer to normal and then go all strange again a few seconds later and so on. It is just a horrible feeling, for want of a better word. (I’ve also had this problem objectively and scientifically verified many times by blood pressure monitor. Tests show that my blood pressure, as well as my heart rate, goes haywire when I stand up even for very short periods of time)."

Even sitting up in bed with a few pillows also causes these problems, so I have to lie pretty much completely flat almost 24 hours a day. I can only use quite flat pillows. I also have to raise my legs slightly when I am lying down to reduce the load on my heart because my heart struggles a lot more if I don’t. Wearing knee-high compression socks helps to a certain extent too. (Blood pools in the lower legs and feet when you have M.E.; research has shown that the average person with M.E. has only 75% of the circulating blood volume they should have while severe sufferers have been shown to have only 50% of the expected circulating blood volume.).

I have to lean up on one arm and raise myself slightly to eat in bed as I’d choke and couldn’t manage it if I were lying completely flat. I have to try to eat very quickly though as I can’t manage it for long without getting heart problems later. I’d give anything to be able to eat and drink sitting up, or even just to be able to sit up a few hours a day. I haven’t been able to sit at a table to eat for at least 6 years now. I dream of one day being well enough to sit up to use an electric wheelchair a bit now and then, that would be just wonderful but I would have to improve immensely for that to happen (not just with being able to sit but with being able to cope with movement, light and noise sensitivity, and much more). Being able to use a wheelchair is something I hope for very much, in the future. But I am far too ill to use a wheelchair at all now, or anytime even remotely soon (along with most other severely affected M.E. sufferers)."

My head feels the wrong pressure and as if it might burst, as does my whole body. My thinking is negatively affected too; I can’t think at all, sometimes I can’t speak in sentences any more, or at all. It feels like my body and my brain are in a state of shock from lack of blood flow. Sometimes, when it is very severe, I notice that my body is shaking uncontrollably. I have to lie down very quickly or else fall down where I stand. (The immediate effects of standing or sitting up too long are severe, but I also know that the after effects will be more severe and long lasting every extra second I stay upright during the attack, so getting myself back in bed and lying flat as quickly as possible is vital.)

If I have a severe orthostatic attack however, I know that these acute symptoms were only the start of it – the tip of the iceberg – and that the delayed effects will be even worse and last far longer. The delayed effects always occur even though by then I have always been lying down properly and not standing up for longer than I should for many hours. (No amount of resting afterward prevents the delayed after effects, it is far too late by then.) For me, the delayed effects of orthostatic overexertion usually hit when I’m trying to sleep at night (from about 1am – 3am usually) and can last anywhere from 1 – 6 hours or more. One minute I’m fine and the next it hits me like a sledge hammer; heart problems similar to those that I experienced earlier in the day, but far more severe. Again my heart alternates between fluttering wildly and beating very fast and very shallowly, and pounding so hard that I can actually see my feet shake with the force of it. Again it feels like a heart attack. The pain in my heart is intense. Sometimes I manage to get to sleep before the attack starts and I am woken up with a huge JOLT by the force of it. (Just when you’re thought, ‘oh great, I got away with what I did today’ WHAM, you suddenly know you didn’t get away with anything at all.) It really does feel like a heart attack, like my heart is really struggling and as if something very heavy is sitting on my chest making it very hard to move, or to breathe.

Orthostatic intolerance is at its worst when you are standing or sitting very still, walking or moving around or fidgeting makes it slightly better, so things like waiting in queues, having haircuts or standing up during conversations would often cause an attack. I would be waiting in a queue for example and suddenly start to feel very hot, shaky, light-headed and dizzy. My heart and heart-rate would start going crazy. It would feel like my heart was really struggling to beat and was about to explode out of my chest. I could feel my blood pressure doing very strange things too, changing from one second to the next and then I’d feel myself start to black out; to lose consciousness. If it was one of the ‘milder’ attacks I eventually worked out that I could stave off the worst of it by rocking backwards and forwards on my feet and then changing the way I was standing a lot, or by leaning all the way forward onto something. If it was a bad attack however these strategies weren’t enough and I’d have to crouch on the floor leaning all the way forward as much as I could, while also changing position and fidgeting a lot, to keep from blacking out. (For the first few years I often used to pretend that I had to adjust a shoe, or get something out of my bag or whatever while I was crouching on the floor, so I wouldn’t look completely nuts. But in the later years, I didn’t care what people thought anymore or if I got stared at and I just did whatever I had to do to stay conscious, as unobtrusively as possible.

At around the same time, in the first 6 or 7 years of illness when I was misdiagnosed as having mental health problems, I’d also have to fight against having black outs when I was driving my car. Of course I couldn’t really crouch down on the floor and fidget in a car! What I’d do instead was tilt the car seat back as far as it could be tilted (with me still being able to reach the steering wheel steering wheel), and drive the car that way. That helped a lot, but nowhere near enough. My usual drive (to and from university once a week) was half an hour each way, about 20 minutes more than I could really cope with at the time. After about 10 minutes of driving I’d be in a really bad way. I’d feel extremely ill, and very hot and feverish. I’d be having feelings of immense pressure in my chest and trouble breathing, and my heart would be just going crazy and I’d feel as if I were about to black out. Sometimes I would actually grey out for a few seconds. I’d quickly be overwhelmed by how ill I was and wonder how on earth I was going to manage the rest of the drive. It was all I could do to just keep myself going from one second to the next… But then suddenly, or so it seemed, I’d be pulling up in the driveway of my house, with no memory at all of how I’d got there. Very scary. I’ve since learned that this could only have been what is known as an absence seizure (a phenomenon known to occur in M.E.). With an absence seizure you go into ‘automatic pilot’ mode; you can keep doing repetitive tasks automatically though you will have no memory of anything you’ve done as you weren’t really fully conscious at the time.

The ironic thing is that I’d have been far better off with LESS willpower actually. I did myself so much permanent bodily damage pushing on through all the hellish symptoms so hard and for so long. I made myself far more ill, and caused myself permanent damage. I am still paying for the way I pushed myself to do more than I should have after six years, and I probably will continue to do so for the rest of my life. (If only I had trusted in myself and in what I knew what really happening with my health instead of trusting my doctor so much more, and thinking that she must know what she was talking about because she was a doctor and so certain and seemed to have science behind her (almost all my tests were normal but, well they would be, because she did completely all the WRONG tests)… and if only I’d been less motivated to get myself well at any cost, if I’d given up sooner, I would be so much better off now too.)

Another orthostatic problem I’ve had is with my vision going black or grey for a minute or so whenever I stood up quickly from a lying down or sitting position. When this happened I would have to bend at the waist and do a weird kind of crouch for a while until I could see properly again (to try and get blood back into my head again I suppose). Getting up also made me feel very faint and on the verge of fainting for a long time even after I’d lay down again."

Years after I started getting these awful attacks I found out that this is the part of the brain that is most damaged in M.E. (the lower parts of the brain near the neck and the spine, the brain stem etc.) and that made so much sense to me. I felt like I knew that already, because of these attacks. I now also know that when people with M.E. overexert mentally or physically there is a significant drop in blood flow to the brain afterward, and that also seems to (potentially) make a lot of sense in regard to this symptom. (I wonder if this awful feeling could be what not having enough blood getting to your brain feels like?) Small strokes are also known to occur in M.E. (78% of patients have punctate lesions which are most consistent with small strokes) maybe this is what they feel like? (I’ve heard many other M.E. sufferers describe this same sensation affecting the same area of the brain too, in response to the same stimulus.)"

Normal thought lets you think of more than one thing at a time. There is a kind of ‘holding area’ or ‘working memory’ part of the brain (or function of the brain) where you can look at, and analyse, a variety of different thoughts and memories at the same time to actually work things out. To think. It lets you hold 2 or 3 or 5 or more different thoughts in your mind at once so that you can compare them to one another, and also see if anything you’ve learned in the past is relevant and perhaps apply one of those ideas to the problem as well. You can jump from one thought to the next, to the next, and back again. You can think of A and B, and then combine the best elements of both to get C. Then you can think about it some more and come up with options D and E, but then decide to do back to C after all when you recall a situation in the past where this sort of strategy worked really well and where a strategy similar to D failed spectacularly. When you have a normal level of ‘working memory’ you are easily capable of this kind of complex thought.

Since I’ve had M.E., I no longer have access to my ‘working memory’ or to my ‘control room.’ (Or perhaps I do have access, but only to a very much smaller and malfunctioning version – where the controls are labelled in Russian and are all manual instead of automatic too!) Thinking of more than one thing at a time is very difficult for me now, if I can do it at all. I can think of a question for a little while, and on a very good day I might even get to conclusions A and then B, but more often than not, the second I come up with any answers I’ve completely forgotten the question. Then I have to work backwards to come up with the question again, by which time, I’ll have completely forgotten both A and B. This can go on and on until, if I’m well enough and lucky enough, I can shorten the gaps been thinking separately of A and B so that they overlap for a second or so. I try to think of both of them for a few seconds each, trying to trick my brain into letting them ‘hit’ each other in the middle and so letting me comprehend the two things at once for just a few short seconds or fractions of a second. This process is every bit as difficult as it sounds, especially as I’ll keep forgetting both A and B throughout and have to start again over and over. Eventually, if I’m lucky, I’ll be able to perceive A and B at the same time and on a very good day I might come up with C. Then I’ll have to work hard to try to compare A and C to each other, and then B and C. (With a lot of work I can comprehend two things at a time, sometimes, but three at once is just beyond me now no matter how hard I try). Then I just have to hope I have a notebook handy to write it all down or else I have to start all over again.

Usually when I ‘think’ now however, I just make do with my single train of thought. I’ll think of a problem I need a solution to and an answer will just pop in my head without there being any conscious thought process. I can’t analyse what I’ve come up with at all, I just have to go with it. I don’t have the ability to think about something for a longer time period and come up with a better answer; my first answer is often my only answer (if I can come up with an answer at all). If I try and see if I can come up with another solution or think through the one I already have, nothing happens. My brain just goes blank. (It is the same with memory. I either immediately recall something or I don’t, thinking about it harder and longer just doesn’t give me any more memories than I had initially.) I can come up with good ideas sometimes, (and remember things accurately sometimes), but I can’t actually ever THINK like I used to. I am incapable of the kind of complex thought that I took for granted before my brain was damaged – except in small amounts and with a lot of hard work. I miss having a normal brain more than almost anything.

For example, not long ago I saw a news report on TV that was about farming and mentioned ‘lamb.’ What is a lamb I wondered? Is it a baby cow, or something else? But if it is a baby cow, then what is veal? I just couldn’t work it out. I felt like a complete idiot but I asked someone, what is a lamb? I just had to know. Very embarrassing. (What makes this worse is the fact that I actually grew up with a (rescued) pet lamb/sheep…that we had imaginatively named ‘Lambie!’)

I come up with a lot of ‘can we have the thingy from the thingy today?’ type sentences. I’ll say, ‘Can I have a ….? Not a spoon or a knife, a… ? Yes, a fork! Thank you!’ I just forget really simple words a lot. I also substitute strange words for other words sometimes too. I might say, ‘I’ll heat that up in the radio…what? Oh, yes, microwave, that’s what I said wasn’t it?’ I feel only marginally in control of what words come out of my mouth; sometimes my brain will substitute one word for another and most of the time I don’t even realise I’ve done it.

Yet 10 minutes later I might be able to remember (and accurately quote) a weird or trivial fact I saw on TV several weeks ago that is perfectly relevant to the conversation and which everyone else has long forgotten. My memory is very deficient and damaged in a number of different ways and is always unreliable. But a small part of the very good pre-illness memory I had still works sometimes, which is interesting (albeit quite randomly and only for very short periods of time)."

The thought process involved in making a cup of coffee for myself goes something like this. ‘I want a coffee. I’m going to make myself a coffee. I’m going to walk to the kitchen, okay done! So I’m making coffee, what do I need first? I need a cup. Okay I have a cup in my hand now, no problem. What’s next? (My brain goes completely blank for 10 seconds). Why am I holding a cup? What am I doing? (My brain goes completely blank for 5 seconds). I’m making a cup of coffee. How do you do that? What do I need? A cup. I have one in my hand. It hurts to hold so I’ll put it down in front of me. Okay I have a cup in front of me, what do I need next? To boil the kettle. How do I do that? I have to press the button on the kettle, but first I need to make sure it has water in. (Brain goes completely blank for 20 seconds). So how do I get water in, can I lift it? How heavy is it and how strong is my arm right now? I could just try it first couldn’t I? (My brain goes completely blank for 10 seconds). What am I doing in the kitchen? (My brain goes completely blank for 5 seconds). Okay I’m making coffee. How do you do that? First I need a cup…..’

This usually goes on and on until I get so mentally overwhelmed and confused that I have to give up and lie down and rest. (I can usually only ever get to about half way through when I forget where I’m up to and what I’m doing before I have to start the thought process all over again). Occasionally I do manage to finish the task and make myself a coffee. But by them I’ve made myself so very unwell doing so that I am way too ill to actually drink the blasted thing. I’m too weak to lift the cup, or to half sit up to drink it, so even too mentally confused to remember how to drink it. (I can’t remember how I make my brain tell my body and arms and hands what to do, or remember how you lift a cup etc.) I can’t move and can’t think at all. I need to rest for several hours, I am too ill to do anything else and I feel very unwell. I can’t cope with any light or noise or stimulation so I have to make the room completely dark and quiet. If I’ve remembered to bring the coffee to my room with me I’ll drink it cold a few hours later usually, when I’m feeling a little better and have recovered from the worst of it.

When I write however, things are very different and I can break each task down into very small parts that I can complete over a long period of time. Writing a new essay goes something like this: Think of an idea, write down some rough points on paper, add to the notes over the next few weeks as I think of more things I could add to it, type out the notes, do a spell check on the notes (correcting anywhere from one in ten to one in every three words I’ve mistyped), do more research, elaborate on each point one by one in sentences, turn the sentences into paragraphs, work on making each sentence make sense, move sentences and paragraphs around so the essay has a coherent structure, do more research, re-read it and fix any mistakes, re-read it again and again making small changes each time (10 or more times), add the reference list and references, check it again for errors, print it out and check again for errors etc.) Not only are each of these tasks broken down to their smallest components, but I also have a lot of micro-rests, and bigger rests, in-between each tiny bit of progress within each stage. I can work for 30 seconds, blank out for 10 seconds, work for a minute, blank out for 20 seconds, work for 3 minutes, blank out for a minute etc. I can also do a half hour of work one day, then have 3 days off, the work for an hour a day for 5 days, then have a month off, and so on.

So that is why my seemingly contradictory abilities aren’t really a contradiction at all. It is just that I can’t really do a small task like making a coffee over a month or 3 months or a year and a half, like I can with the small tasks which make up a big task like writing an essay for my website."

To be able to write anything I also have to be really passionate about the topic and about what I’m saying about it. (Like most people, I’m far more likely to be able to remember a particular fact if it really shocked me, or I had some other very strong emotional reaction to it. Surges of emotion enhance the ability to make facts memorable somehow.) I have to have some real insight into the issue already too. I can’t just decide out of the blue what to write about, I couldn’t just decide that this month I’m going to write about breeding miniature poodles or the history of train timetables instead of M.E. for example, it just wouldn’t work."

When I listen to the radio in the morning occasionally (to block out the noise that woke me up so I can go back to sleep) they’ll do a quick nationwide weather report every half an hour, and I just hate it! They read out the details for each city really fast and with not even the smallest pause between words, to get through it quickly. (‘Adelaide 27 degrees and sunny Hobart 21 degrees some showers in the morning clearing in the afternoon’ etc.) My brain struggles to take in so much input with no breaks or rests, it feels completely overloaded and overwhelmed to the point of a seizure of some sort. I feel more and more unwell as the uninterrupted audio input goes on and soon I find I cannot move at all; my brain is using 100% of its capacity to cope with the audio input and it feels like there is nothing left to be used for anything else, like controlling movement etc. This means that I can’t get away from the noise or turn the radio off! (This isn’t so bad when its the weather report on radio as this only lasts 30 seconds or so, but is very bad when it’s a fast talking TV ad or even worse a fast talking TV show as these can last much longer and the longer it goes on the more ill it makes me, and the more ill I am afterward.) When it finally stops my brain feels totally burned out, like it just blew every fuse. After that, the only thing it/I can cope with is complete dark, quiet and rest for a long time after – yet listening to someone talking on the radio with normal length gaps between words and at a normal speed is fine and I can often do so for up to an hour with few ill effects. Those micro rests just make all the difference.

The need for micro rests also explains why, or at least part of why, I find phone calls so difficult compared to face-to-face communication. You just don’t have those same long comfortable pauses on the phone that you do in real life meetings. (This is especially true if you put the TV on, as I often do when I have a guest, so the guest can alternate between watching TV and talking to you, and you can alternate between talking and resting – while ignoring almost all of what is on the TV – all without your guest noticing, usually). Of course you only get these silences when you’ve known someone a long time, but these are the only people I am well enough to see anyway, people I’ve known 10 or more years and who it is very easy to be with because we know each other so well. That’s why I can see a good friend for an in-person conversation (preferably with the TV on so I can sneak the rests I need in) for up to 2 or 3 hours once a fortnight or so, with only minimal after effects for the next few days (so long as I am well rested beforehand) and why even a half-hour phone call can make me extremely ill for an entire week afterward or sometimes even longer. The less well I know the person (ie. the more I have to actually think when I’m talking and listening) the sicker it makes me – if I can manage it at all. I only am very, very rarely able to use the phone at all now and those calls I do make (almost exclusively phone consults) leave me very ill afterward for at least several days if not a whole week. (I’ve never been so ill as after the two phone interviews I did about M.E. They made me so ridiculously ill afterwards it was horrendous.)"

Initially I’d estimated that these flashes probably happened every few minutes. But then I re-read what I’d written about how the 30 second weather report on the radio made me so ill within about 10 seconds and I realised that if I could go minutes at a time between flashes, then I should be able to handle 30 seconds without one easily. The fact that I can’t do this seems to me to point to the fact that I’m actually having these flashes far more often, perhaps even every 10 or 15 seconds. The more I think about it the more I realise that this must be true. It also explains why I have to write or type long words really fast so I don’t get mentally ‘lost’ in the middle of them, and why when I cut a paragraph in an essay (on my laptop) to move it to another location in the text I have to paste it and then cut it again many times over as I’m scrolling through the document because I forget what the text is and what I’m doing with it every few seconds.

In the earlier stages of my illness I remember this problem being far worse. Sometimes it got to the point that these flashes of regained consciousness would happen every 5 or 10 seconds or so, and I wouldn’t remember what had just happened previously really at all. I’d have time to think ‘what’s happening? That was horrible, maybe I should try to…’ and then FLASH! I’d come to again and think, ‘what’s happening? That was really awful, I wonder if maybe..’ and then it would happen again, and so on. This could last for an hour or more a day, or on and off all day sometimes when I was really ill. Sometimes I’d alternate been having a lot of these little periods of unconsciousness with longer periods of unconsciousness that would last for hours at a time."