For several years I have suffered unexplained illness symptoms.
After the first year of occasional bouts of feeling unwell I plucked up the courage to go and see the doctor - well, I am a man. I was due to go on holiday and had been feeling ill for a couple of weeks - I needed to make sure I was OK to travel and, hopefully, find out what I had.
The doctor took my temperature and blood pressure, did a urine test, listened to my heart and all seemed OK.
He didn't know why I might be feeling unwell but said it was probably a virus and I would be OK to travel. He took
a blood sample (ugh! hate needles!) just in case.
I went on holiday and felt fine after the first day or so. When I came back the blood samples were all normal.
The episode was written off as just one of those things. That was three years ago.
But the symptoms kept recurring. Sometimes it would just be for an hour or so. Sometimes I would feel pretty rotten for several days. The bout that had triggered the visit to the doctor had lasted for two weeks: just feeling ill, feeling a bit queasy, feeling as though I had a bit of a temperature, but no accompanying headache, no stomach upset, no vomiting, no aches or pains - and in fact, when measured, my temperature was always (to my great surprise) normal. No wonder the poor old doctor was mystified. And during the longer bouts of illness I would worry. What is wrong with me? Is this feeling of illness ever going to go away? Can I cope!
One of the strange things too was that during these episodes of illness, despite feeling queasy and
not fancying food, when I sat down to a meal I could eat it - even enjoy it - and even manage a glass of wine.
There were occasions when I felt so bad I really couldn't eat, but that was rare.
Every week or two I'd have a short lived, mild episode - perhaps feeling a bit off for an hour or so during the afternoon. But if, say, I'd been out in the garden it was put down to too much exertion, or maybe too much sun. If I'd had a bath, perhaps the bath had been too hot. Perhaps something I'd had for lunch hadn't agreed with me. It was always possible to find a reason why I'd felt off colour, and it usually wore off by the end of the day anyway. It was only much later that I began to see these little incidents as part of something bigger.
Longer episodes - a few days or more - occurred every few months. Often they would coincide with special occasions: weddings, funerals, anniversaries. Most of these were my wife's family's events and she began to suspect that my illnesses were fabrications, excuses not to go or to sit in a corner and be unsociable if I did go.
I run management training courses for a living, about one a month. Many times I felt pretty grim at the start of the course but by mid morning the adrenalin had driven the gremlins away.
For four years this went on. Feeling OK most of the time but with these intermittent bouts.
But the bouts seemed to be becoming more frequent and one day my wife pointed out "but you're always ill".
I hadn't realised just how often I was ill to some degree. I resolved to find out what ailed me.
I had long suspected that something I was eating was making me ill so I started to remove things one by one from my diet. Suspicion first fell on bio-active yogurt. I stopped eating it, but the symptoms returned. Fruit smoothie - there seemed to be a correlation - I'd sometimes feel unwell after drinking that. I stopped drinking it, but it made no difference. Milk, cheese, meat - you name it and it came under suspicion but none proved guilty. Maybe I was drinking too much red wine? I cut down but it made no difference. And I knew from the blood tests that my liver was fine.
If it wasn't food or drink then what? I noticed a correlation between being in the garden spraying my grapevines with Bordeaux Mix and the onset of the symptoms. Sh*t! I hadn't been wearing a face mask! That was it! I chucked the rest of the Bordeaux Mix away and didn't tell the wife. But a few weeks later the malaise came back again. Damn.
Ah, but maybe it wasn't the Bordeaux Mix, maybe it was that very old bottle of citronella oil that I doused myself with whenever I went out to do the spraying, to keep the insects at bay. Perhaps it was redolent with germs and I was ingesting a bit of the oil each time from my hands or face. In the bin it went.
But it wasn't that either.
I was starting to get anxious, worried that there was something very wrong with me.
I began to dread planned future events such as concerts or holidays fearing that I would be unwell.
And when I was feeling unwell, just the prospect of having to sit in a church service or
concert hall or an aeroplane would cause considerable anxiety.
So, if it wasn't the food, it wasn't the drink, it wasn't the mildew spray or the citronella or any other external cause, it had to be something within me.
Let's go back to the beginning, four years ago. I had had a rather nasty urinary tract infection (UTI). Basically bacteria take up residence in the wall of the bladder and you get a fever as the body fights them. It is caused by dehydration - simply not drinking enough water. I had been quite ill on holiday in France and even worse on return and ended up in Accident and Emergency on a Sunday and spent a night in a public ward in an NHS hospital. (A nightmarish experience - one guy was wandering around with tubes coming out of him which lead to a transparent suitcase-sized device he carried around that was half full of pale red liquid. Dante had no idea...)
Anyway, it took 5 months on various antibiotics finally to drive the infection away. So when, a few months later, I felt unwell again I naturally suspected a recurrence of the UTI. The symptoms were similar: feeling lousy and feeling as if I had a temperature - though I did not have the burning sensation when passing water which is the classic symptom of a UTI. Nevertheless, I hurried a urine sample around to the doctors to get it tested. But it came back negative - the UTI had not returned. And after a few days the symptoms went away.
Later I began to suspect that something that had happened during those 5 months might be the cause of my bouts of illness. Maybe it was the antibiotics themselves that had done me some damage.
It was about a year after I'd had the UTI that I had the two week bout mentioned above
- dismissed as just some passing virus.
Over the next two or three years the symptoms came and went at random intervals. I didn't go back to the doctor as there seemed no point. I just lived with it.
But things came to a head two months ago.
I had been relatively OK for several weeks and even started to believe whatever it was had gone away for good. I booked a week's holiday in Fuerteventura (in the Canary Islands) for the end of November. My wife still works full time so I went on my own. However, I'd twisted my knee a few weeks earlier and it was still painful, so 2 days before travelling I popped into the doctor. He said I'd damaged the cartilage and it would take 3 months to heal but the holiday might even do it some good. He suggested 5 days on Ibuprofen to reduce the inflammation.
The doctor had been running late and I'd spent 30 minutes in the waiting room sitting next to a lady
who looked most unwell, but I didn't give it much thought.
Two days later I hobbled onto the plane. I felt a slight chill on the morning I travelled, but thought nothing of it. For three days I had a great time: felt good (despite the knee), lovely weather, free food and wine and free ice cream all day - wonderful.
Then half way through the week I ate some strange tasting fish and that afternoon started to feel off-colour and I skipped dinner that evening. Next day I felt worse and couldn't eat. I sat on the balcony reading a book, dozed off and had mildly delirious dreams. Next day I felt even worse and began to panic about the prospect of the return flight the following day. I wasn't vomiting, I didn't have diarrhoea, I just felt feverish and ill. I took a couple of paracetamol which seemed to help a little. And I realised it wasn't food poisoning at all, it was my old problem returning with a vengeance.
I managed to summon up enough courage to get on the bus to the airport, and made myself get on that plane.
Back home I felt a little better, but the next day came down with an awful cold.
Ah, so maybe it wasn't my old problem after all, maybe I'd just caught a nasty bug from that woman at the doctors?
The cold went but I still felt groggy and very tired. In spite of that I ran a 3-day course mid December.
Then my wife said "why don't we go away for Christmas? It'll cheer you up." So on December 16th we booked a holiday, departing December 21st.
But I started to feel awful. I tried to see the doctor but couldn't get an appointment, so the day before we were due to travel I anxiously went along to the surgery to see the nurse, taking a urine sample with me. The nurse dipped the sample, all normal. She took my temperature: normal. I couldn't believe it! I felt so feverish.
The next day we struggled up to Gatwick Airport on the train. But I started to feel worse and worse. We even checked in but I couldn't do it. I was getting panicky at the prospect of 4 hours in an aeroplane feeling so unwell.
On the train back we rang the doctor. Probably flu was the verdict. These things happen. Flu duly went on the insurance claim form, signed by the doctor. Back home, I recovered a bit.
Then I perked up and a few days later we had a couple of days in Canterbury between Christmas and New Year. I even
enjoyed the New Year celebrations - I could even face and enjoy a pint of Guinness! I must be better.
But my wife still made me promise to go and see the doctor in the New Year.
I went to see the doctor in early January. But actually not primarily because I'd been feeling unwell: I thought the bout of illness was over. I had a mole or something on my leg that had started to itch when I'd been in Fuerteventura six weeks earlier.
The doctor wasn't sure what it was neither was the student doctor who was with him learning the ropes. The doctor recommended a biopsy (a small skin sample which is sent to the lab to be tested) and said he'd be in touch to schedule it. At the end of the consultation I mentioned I'd been unwell (if only to keep my promise to my wife). I described the symptoms: essentially that I kept feeling unwell but otherwise had no symptoms. He (and the student) had no idea what it might be. He said if the symptoms recurred I should come back and see him.
The next week, the second week of January, I started to feel grim again. I went back to the doctor. He took my blood pressure, listened to my heart, took my temperature: all normal. He said he'd arrange for a blood sample to be taken by the nurse the following morning. (No, not again!)
I told him that the current bout of illness had started 6 weeks earlier when I'd been in Fuerteventura. I said I'd been taking Ibuprofen for my knee for the first 3 days of the holiday and I had only started to feel ill when I stopped taking it. The doctor mused that there might be inflammation somewhere that the Ibuprofen had suppressed and it had flared up again when I'd stopped, and maybe I had an immune system problem. He said he'd add an immune test to the usual array of blood tests. I forgot to mention that I'd also had the possibly dodgy fish just before I'd started to feel ill.
I also told him that during short episodes I usually felt OK when I woke up, felt groggy in the afternoons but fine
in the evenings. I said that longer bouts often coincided with stressful events and wondered if the whole thing
could be psychosomatic. Anyway, stress seemed to amplify the symptoms, I said.
Next morning I struggled in to the surgery and had ten minutes of extreme anxiety while the nurse did her stuff. Back home I felt better - probably the adrenalin. For the next few days I felt rough but made myself eat properly, although even my favourite fillet steak and glass of red wine had lost their appeal.
Two days later, Friday January 19th, my wife and I went out for a meal. I was a bit under the weather but coping.
But back home the six weeks of feeling rotten started to get to me and I decided to get drunk to see if that would
drive the illness away. Stupid, I know, but it seemed like a good idea at the time.
And boy, did I get drunk. Far more than I'd intended. I was sick, had diarrhoea, I scratched the surface off the mole-thing on my leg, made it bleed and then dabbed neat malt whisky on it. Again, it seemed sensible at the time.
Next day, Saturday - I will call it Day 1 - dreadful hangover. Wife furious and very upset. I couldn't remember half of what had happened. I hadn't been that drunk, or anything like it, for several years. (And she hadn't been happy that time either.)
Sunday, Day 2, we were due to have a pub lunch with friends. I wasn't exactly feeling great but we made it
and in fact had a nice lunch and I enjoyed the roast beef and chocolate desert - though I stuck to mineral water.
Sunday afternoon in the supermarket I started to feel bad again and that evening just had some soup.
Then on Monday, Day 3, oh dear. I felt dreadful. Shaky and shivery and sweaty.
I was due to run a course the next day. I forced myself to load the course materials into the car and take them to the hotel where the course is run. Maybe getting out of the house would perk me up.
But carting the stuff into the hotel just made things worse. I felt ill and quite weak. I started to think I simply would not be able to do the course the next day. But what to do? Struggle through? Or get in touch with all the participants and call it off? I had run many courses with flu, colds, hangovers and maladies of all sorts and had always made it through. But this was different.
Maybe I panicked, but back home I emailed the attendees saying the course was cancelled. I rang as many as I could get hold of to make sure they'd got the message. I suspected that the next morning I'd regret the decision but I was feeling so awful, mentally and physically, that I didn't care. In fact I hoped I would regret it the next day - it would mean I was feeling better!
I managed to cook tea for when my wife came home and even eat some myself.
My wife rang the doctor to see if the blood test results were back. They were, and they were all normal.
But the doctor rang back 5 minutes later and said the immune system results weren't
back yet - they take a little longer.
I had already made a doctor's appointment for the following Monday when I had
intended to go and get the blood test results. I was sure they would ring me if they'd found
anything urgent, but my wife couldn't wait that long for the answers.
On Tuesday, Day 4, I had an hour long attack of shaking, shivering and sweating. I had a bath. But then I started to feel very anxious. Would I ever be able to run another course again? Just the prospect seemed too awful to contemplate. Could I ever face organising another holiday? The thought was distressing - what if I felt like this on holiday? Social events feeling this way? No way. Then I had a most awful moment of feeling I was about to lose control of my mind. I felt I was an inch away from it and had no idea what might happen if I did lose control. I tried to calm myself, I backed away from the edge.
I started searching on Google, determined to find out what these symptoms were, to find out what was wrong with me. Lupus, Candida, Chron's Disease, ME/CFS... Goodness knows how many diseases and ailments I researched and eliminated.
By late afternoon I'd come up from the terrible dip of earlier in the day and I cooked tea and again managed to eat some.
I was also feeling thirsty and drinking a lot of water - probably because I was sweating so much - not profusely or
from the brow, but my armpits were always damp and pungent.
But Wednesday, Day 5, was even worse. Twice I had the shaking attacks and the mental desperation and near panic. I had another moment of feeling I was losing my marbles. In fact I was sure I was mentally ill and that this was it - this was the end of my life as a normal, sane human being. That was not a pleasant experience.
I calmed down a bit and did more Googling, looking at every illness I could think of to see if any fitted, none did.
To give you some idea what it's like, imagine you are terrified of flying (I love flying, but imagine you're
terrified by the very thought of it). Your partner rings and says: "Why don't we book a holiday in the Caribbean?"
You'd probably have an immediate welling up of anxiety. I was getting that welling up of anxiety if I even thought
about forthcoming holidays, courses, family gatherings, etc, fearful that I would be ill and not able to cope.
And that afternoon my wife called me and I had an immediate surge of anxiety in case she
suggested arranging anything. Crazy.
Four years ago, at the start of all this, as well as having that UTI, I had also had a root canal done. And now I found several websites that described how root canal fillings can harbour bacteria that leak into the blood stream and cause degenerative illnesses - heart, liver, kidney diseases, that kind of thing. Other sites suggested waste product toxins from the bacteria could also cause ailments. And my root canal filling had never fully settled down, it still slightly aches occasionally. I convinced myself this must be the problem.
I rang the orthodontist who'd done the root canal. Could poisonous toxins, waste products from the bacteria in the root canal, be poisoning me? He was quite definitive: that was not possible. I pretty much believed him.
I had another shivering attack after which I plunged into another desperate mental depression. I was losing my mind, the men in white coats would be coming for me soon, I was quite sure of that.
But by late afternoon I had again pulled myself together sufficiently to cook before my wife got home.
Thursday, Day 6, wasn't so bad. I was still shaky and shivery and sweaty but much less so than on the previous 2 days. I even felt strong enough to go out in the car to buy a dishwasher for my Dad's birthday and I coped OK with that. I was shaking it off. My wife brought a Chinese takeaway in and I enjoyed it, although I was still being ultra cautious and didn't have a glass of wine.
Then on Friday, Day 7, a rather strange thing happened. When I woke up I felt better and fancied a drive in the
countryside. What a good idea. But I found myself tearing down muddy, icy country lanes at 5,000rpm, overtaking like
a lunatic. I went to McDonald's and had a bacon roll (I never go to McDonald's on my own).
I hared up to the racecourse, found a grassy car park and started doing 4 wheel slides and handbrake turns.
Car covered in mud but I didn't care! For me this represents lunacy: I am usually the most boringly careful driver
who can't even stand the thought of his car getting scratched.
Back home I washed the car and was delighted - I hadn't had the energy to wash the car for 2 months.
In the evening we went out for a meal. But as soon as we sat down I had an attack: shivering, shaking, feeling dreadful. For half an hour we sat there while I rode it through. I managed a Diet Coke, and some soup and bread but that was all. Later, in bed I had another attack.
[Well, dear reader, I've laid out all the clues - do you know what it is yet?]
I awoke on Saturday morning, Day 8, certain in the knowledge I knew what was wrong with me. I had Coeliac
Disease. That was it, I was allergic to gluten, the stuff that's in bread. Yes, I was sure I'd been having attacks
about 6 hours after eating bread. That was it! Yesterday it had been the McDonald's bacon roll and in the evening
the bread with the soup. I got up and looked at the detailed diary I'd been keeping for the past
week and it all seemed to fit.
Excitedly I powered up Google. But, oh no, what nonsense. Coeliac Disease didn't fit at all.
But then I had a thought: could the fact I hadn't had any alcohol for 7 days have anything to do with what I had been going through this last week? It seemed unlikely but I Googled anyway. And there it was. My symptoms exactly. My jaw dropped. Alcohol withdrawal. Cold turkey. I'd been going cold turkey for the past 7 days. Website after website confirmed it. The shaking and shivering, the feeling awful, the anxiety - even the manic behaviour - even the 7 day timescale - it all fitted perfectly.
Though studying these sites made me realise I had actually been quite lucky. It seems that in really bad cases of withdrawal, the victim suffers Delirium Tremens (DTs) which includes hallucinations - and 10% of people who suffer DTs without medical supervision die. Oops. Don't try this at home. Scary stuff.
On Saturday evening I suddenly stopped shaking. A feeling of great calm descended upon me.
On Sunday, Day 9, I awoke after 12 hours sleep still feeling tired, but otherwise fine. I ate heartily.
Am I a heavy drinker? No. A couple of glasses of red wine in the evening with dinner, maybe three. Occasional whisky. I almost never drink at lunchtime and I've never had a drink when I get up in the morning or anything like that. I love red wine but you'd never say I had a drink problem.
But I had. It became clear from a hour or two's research that I had become alcohol dependent. My body needed it. Those afternoon dips? Withdrawal symptoms from the previous evening - if you're dependent you can get withdrawal symptoms just a few hours after your last drink. But a glass of wine with dinner swept the withdrawal symptoms away.
What had actually happened when I'd been in Fuerteventura two months ago? That was now clear.
It was an all-inclusive holiday - free food and wine - wine literally on tap. So, I'd had more wine
than usual in the evenings and, crucially, I'd had a glass of wine at lunchtime so I never had the afternoon dips
and I felt great!
And perhaps I did have mild food poisoning from that fish or a touch of flu caught from that woman in the
doctors' waiting room. Whichever, it had stopped me eating and drinking, the withdrawal symptoms had started to kick in,
I'd felt worse so didn't drink and the whole thing spiralled downhill.
What about all those social events I was ill for? Well, perhaps years ago I'd been to one suffering a hangover and so for the next one decided to go easy on the drink in the days leading up to it. So, a couple of days before an event I'd be careful and have less wine than usual. Next day? Mild withdrawal symptoms. "Oh dear, I can't be ill for this wedding, better not have anything to drink tonight to be doubly careful". And the next day I'd be feeling worse and the anxiety (itself one of the main symptoms of alcohol withdrawal) would kick in and the whole thing would feed on itself to the point where I'd be really quite ill. But after the social event, or even at it, a glass of wine or two and I'd be fine the next day. You can see why my wife was suspicious that I seemed to be conveniently ill at these times.
And feeling ill on and off for several days at a time was probably due to drinking a bit now and again during those illness bouts - so I never completely dried out but I wasn't drinking enough to drive the withdrawal symptoms away. Then when I did return to normal levels of drinking I felt better as a result. It's a topsy-turvy kind of a thing.
Two or three glasses of wine an evening is between two thirds and a whole bottle a day. A bottle of wine is about 10 units, and 20 (some say 30) units a week is a recommended maximum. I was drinking two or three times that. But I think the real problem was that I was drinking just about every day for years and years and my body became conditioned to it, dependent upon it.
It's ironic that had I been a proper drinker and drunk at lunchtime I would have avoided all those afternoon
dips and felt so much better on so many days.
And if I'd been a proper drinker and drunk before big events to calm my nerves I'd have been fine for all those weddings,
christenings and the like. There is a definite irony in there somewhere.
On Monday, Day 10, I went back to the doctor. He said the blood tests were all normal and he said: "I'm sorry, I have no idea what the problem is." I said: "I know what it is." He looked a little surprised. I said that for 4 years I had, on and off, been suffering alcohol withdrawal symptoms. He didn't look convinced so I explained how I'd reached the conclusion and what I'd been through over the past seven days. When I had finished he said he had learned something. Ah well, I hope I may at least have helped the next patient who presents with vague symptoms of unwellness.
God knows, if I had not discovered what was wrong with me and if the doctor had sent me away with no diagnosis
and no prospect of a diagnosis - if he had sent me away without hope - I may have
fallen into a declining spiral of despair and goodness only knows how things might have ended up.
Thank God for Google.
I am lucky that I have never had an irresistible craving for booze. I like red wine and enjoyed a glass or two or three in the evening. But I hope I will find it relatively easy to adjust - to stop drinking altogether or, more probably, to drink perhaps only at weekends, and then only to have a couple of glasses and never go on to a third or fourth.
But on the Monday afternoon, Day 10, the same day I'd been to the doctor, I had an attack of anxiety when on the phone to a customer about a future course. I tried to calm myself. I went to bed and dozed fitfully for a couple of hours feeling not too good. Oh no, it's not over.
I have written this document today, Monday January 29th, Day 10.
I do not know at this point any more than you do whether I am over the withdrawal symptoms
or whether there are other medical complications yet to evidence themselves.
I will record what happens next here:
What Happened Next...
A footnote for medical students. The medical textbooks no doubt say that if a patient presents with sweating,
shaking and feeling ill, and they tell you they drink, you can conclude the patient is probably suffering the effects
of alcohol withdrawal.
But this almost pre-supposes the patient knows what is wrong with them and reports all the relevant factors and symptoms.
Dear medical student: it ain't like that.
I'd assumed I was ill. I'd assumed that I was getting anxious about being ill, but the anxiety was just me
being silly, so I didn't really mention it. Little did I know that the anxiety is an integral part of the illness.
And it never occurred to me that alcohol had anything to do with it.
I'd essentially just been reporting 'feeling ill', but all objective tests seemed to prove I was perfectly healthy.
What would you have concluded?
Mystery Illness - What Happened Next...