A rush of blood to the head: One woman tells the story of her stroke

I woke early, and soon realised that I was feeling a bit strange. I wiggled my hands and feet and they seemed all right, but when I lifted my right arm, it waved around a bit and I couldn't quite control it. Thinking I must have slept on it, I waited for the bizarre sensation to go away. It didn't.

Something felt zingy and cold up my neck. My left eye started seeing double. I tried to stand up on my bed, but I couldn't balance and just fell back down. I lay back and shut my eyes. The room began to spin. To get to the loo I had to, literally, crawl along the floor.

Here I'll pause for a moment. Prior to mid-2002, if I'd woken up with the sensations listed above, I would have groaned comedically, lit up a fag, downed a glass of red wine and gone back to sleep. Once, in fact, I managed to pass out lying on my right arm, and I couldn't grip properly for three weeks. Nowadays, having been sober for more than five years, I don't expect this kind of thing to happen any more.

Starting to panic, I scrabbled, holding on to the furniture, to the living room to find my phone, my right arm still half-disconnected. I sent my boyfriend a scared text. He called me back immediately, but he lives on the other side of town. My speech was now slurring badly. I rang my GP's surgery and was put through to a health centre. As soon as I started trying to explain to the lady what was wrong, I began to be sick, and couldn't get a word out. She told me to call an ambulance.

I didn't realise it at the time but, at the age of 41, I had just had a stroke.

When the ambulance man turned up, he suggested that I might be suffering from an inner ear infection. Apparently, he'd seen women my age lose their balance and fall on the floor. I clutched my sick bowl close. As I was being examined in casualty, at the first of the two west London hospitals where I received treatment, a friend arrived and watched as the doctor hit me with rubber hammers and asked me questions.

The next possibility was Benign Positional Vertigo. I began to rally, sent a text, albeit using my left hand, and managed to speak to a friend on the phone without slurring. My boyfriend arrived. As the doctors were still stumped by my condition, I was taken upstairs to an observation ward, where I was given an ECG. After a while I began throwing up once more, and my boyfriend had to hold the sick bowl. My speech started slurring again, and I lay back and waited for it all to go away. Eventually my boyfriend had to go back to work and I fell asleep.

Then something very odd happened. When I woke up an hour or so later, my right arm had completely recovered, and all the symptoms had transferred to my left side. Later I was told that this must have been another stroke. Disturbing though this may sound, it actually turned out that this was extremely lucky, because I am right handed.

Soon, I was being wheeled off for a CAT scan, before being left in a corridor in my stained T-shirt and skirt and flip-flops – which was all I had been capable of putting on while the ambulance was coming – and one thin blanket. Someone re-parked my wheelchair in front of the air conditioning, and I sat and shivered for what seemed like hours. The scan result showed nothing.

After more discussion, during which I revealed some odd symptoms I'd previously had – an occasional sparkle in my eye that lasted half an hour or so, and a weird vibration in my elbow that I have frequently mistaken for my phone ringing – the neurologist thought I might have a migraine, which apparently doesn't always involve pain. I was booked in for an MRI scan the following day.

This scared me, not least because they swiftly asked me if I was claustrophobic. My terror at being enclosed inside an MRI machine subsided when I saw that it was open-ended, albeit very large. There was a long set of instructions to take in before I lay down in the metal trench that would slide me inside. I was under strict orders not to move my head at all, but I was offered some headphones so that I could listen to the radio during the process, which I was warned would take at least 25 minutes.

"The radio's a bit loud," I said. "The machine's loud," replied the man operating it. He was right, but he didn't warn me that the noise was also musical, like a techno symphony. Alone in the room with a metal visor clamped over my face, I kept my eyes firmly shut. But, stressed as I was, I began to relax into the rhythm, and I almost began to sway along to it, before remembering why I was there. It was far louder than the radio, but I did manage to catch bits of Robert Elms chatting about his childhood visits to Harrow – "And there is an actual wealdstone, isn't there?" – through the shouty magnetic blasts. There was something strangely beautiful about it all.

A couple of hours later, the MRI confirmed that I had had a stroke. Groups of doctors came to chat to me, and I was given many finger-waving and leg-pushing tests. My speech was still slightly slurred, although as time went on I seemed to be the only person noticing it. I was told that I was soon going to be moved to a proper neurological ward in another hospital, but in the meantime various people came to see me and explain things, in particular, about Warfarin, the drug I would have to take, perhaps for the rest of my life.

But why had this happened? The doctors were very interested in the fact that my neck had been hurting for 24 hours beforehand. Apparently the chief cause of strokes in younger people is a physical accident, albeit possibly a mild one. To use the medical terminology on my discharge form, I'd had an "acute infarct in superior cerebellar distribution," which was caused by a "vertebral artery dissection". I've had this explained to me several times but it has not really sunk in yet. Very simply, something rips, blood goes in the wrong place and clots, blocking messages from the brain, and it all goes haywire. All I could think of was that I had had a lively time with my boyfriend, but we had not been playing "Olga Korbut Does Dallas".

If the truth be told, it was not a total surprise to me that my body had called a halt in such a dramatic way. I'd just had a wonderful run of publicity for my new book, about my previous life, as an alcoholic. But it followed a two-year period where I'd been going flat out with barely a break.

After my father had died in early 2006 I had been so stressed that I'd actually thought I was going to have a stroke then, or a mental breakdown. Somehow I'd white-knuckled it and, with the help of a fantastic bereavement counsellor, was slowly making some sense of things. But, in the way of the self-employed, I'd been unable to take a break, frantically doing edits to my book, Cleaning Up, at the same time as working incredibly hard just to stay afloat. I had to move house in the middle of 2007, which was expensive and very tiring, as I'd had to decorate it as well.

In the three months leading up to the stroke, everything accelerated. In November I rushed off at short notice to do a job in Portugal because the money was good, even though I was already exhausted; the minute I got back I came down with an abominable two-week flu for which I had to take antibiotics and steroids.

Then I had a wrangle with a web designer who had spent three months ignoring pretty much everything I told him and who I finally had to sack, causing me to have to rush a website together myself just as my book was coming out. And then there was the fact that I had just splatted a whole load of really personal stuff in print, for all the world to see.

So far, so 21st-century Londoner. But here's the million-dollar question that many people have asked me: even though more than five years has passed since I last consumed a drink or drug, could my previous party lifestyle – the years of drink and drugs – have contributed to my stroke? I have not found an answer to this yet, but will report back to them when I do.

The other big questions that my stroke has led me to ask concern the state of our NHS, and particularly the politically pertinent issue of mixed-sex wards, in which I slept throughout the time I spent in various hospitals, and which the Government seems determined to foist upon those unfortunate enough to require treatment.

On my first afternoon in hospital, the ward, although bustling, worked like clockwork and I was woken every four hours or so for observation of my blood pressure, temperature and heart rate. I felt very well looked-after, despite my pressure stockings giving me a huge and vile blister on the back of my leg.

One odd thing was that, despite the electronic ear thermometer having a disposable hygienic plastic tip for each patient, there was no similar disposable bit for the finger clip that measures pulse, so I was sticking my finger where many other fingers had been, including those belonging to people who were incapable of washing themselves. It therefore seemed a bit incongruous when my visitors were told not to sit on the bed to avoid spreading infection. As it happened, I developed cystitis very quickly, which grumbled throughout my entire stay.

Then night-time came, and I had to suffer from the antics of man, in the bay up from mine, who was perhaps 70 or so and who I think had early-stage Alzheimer's. During my first night, the staff had to call security four times. He kept trying to leave, shouted abuse, attacked one nurse and tried to attack another. He simply would not shut up, and for three nights I got hardly any sleep.

I was finally transferred to the neurology ward at another hospital. On reflection, Saturday lunchtime was perhaps not the best time to arrive. The nurse seemed to be doing her best to ignore me as I knocked on the glass panel in the door, as if my arrival was an imposition. Perhaps it was. I was given a bed in a heavily silent ward full of desperately sick older people, some of whom could barely speak, let alone move. After an hour's wait I went looking for a pillow, and a doctor.

After all I had heard about this place, I had somehow been expecting an army of counsellors to greet me at the door. Instead, I sat there alone for what seemed like another hour, I happened to look across the room and was rewarded with the sight of an old man pulling his bedclothes back and yanking the catheter off his penis. Minutes later, another male patient in his pyjamas suddenly appeared right next to my bed and leaned over me. People came and pulled him away, but enough was enough and when a nurse finally came, I burst into tears.

In fact, my six days there were constantly punctuated by visits from this man, who was confused, out of control and had to be chased round constantly by the nurses, to whom he was abusive. The patient in the bed next to me, who was very sick, was very upset by him, and made this very clear, but no one in charge seemed to be especially concerned. In a situation like this you are torn between compassion and irritation, but what if he had attacked someone? It may be that men deal with ill health differently from women.

The woman a couple of beds along from me told me she had spent two days in intensive care the previous summer, and when she came round, she realised, to her dismay, that both the men in the beds on either side of her were masturbating. Despite repeated requests, it took hours to get to speak to a doctor. It felt as if something was not quite working out.

I understood that I had been taken there because I was an unusual case, being so young, but not one further test was carried out on me, and I seemed to have been left there solely to monitor how well my Warfarin was working. My feelings of helplessness were summed up by a conversation with a tiny West African lady I met after making myself walk too and from the bathroom for the first time (I began to hate being wheeled to the loo), and who could barely move.

"Are you a Christian?" she asked me. I said no. "I have been to church all my life and I have not had one day's illness, not even a cold. And now this. What have I done? Why is He doing this to me?" Having spent much of my life listening to peoples' problems and always finding something to say, I had absolutely no idea how to respond to her. God and his works had never featured in any of my explanations, nor in any therapy I have ever had.

An issue that added to the problems was that when I had moved house in the summer, it was to a different borough, but I hadn't got round to changing my GP. I was therefore in a hospital that was in the wrong primary care trust.

This has caused me to occupy a sort of bureaucratic no-man's-land in terms of my treatment, which is only now being sorted out. I really wish someone in government would do something about this. London has a very mobile population and it simply isn't feasible or desirable to change doctor every time you move home, especially if you have built up a good relationship with someone.

However, all this was nothing compared with the ructions caused by the dreaded, government-enforced "big steam clean", which coincided with my stay. All patients had to spend the day in another ward while it was carried out. I spent two hours without a bed, and had to eavesdrop the nurses' conversations to work out when we might be moved back.

In the early evening, when we were finally returned to our original ward, half the bed curtains were missing. No one we protested to seemed concerned about this lack of privacy. I started to feel very angry and helpless. All I wanted to do was discharge myself, and go out into the night. I ranted to a friend who works in the NHS, and he called the site manager to complain.

We were left there for about two hours, but no one thought to lock away our medication in the lockers by each bed that were designed for that very purpose. Inevitably, the confused old man, the one whose catheterised penis I had seen previously, started going through his bag of medication. We called a nurse, who simply put the bag back in his cupboard, not his locker.

Sure enough, a few minutes later he got the bag out again, opened a packet of pills, and began eating them. As the one most capable of walking, I shuffle-ran down to the nursing station, where there was just one nurse on duty who was not even from our ward. We worked out that they were cholesterol pills and not, apparently, something that might kill him.

Frankly, if I'd had another stroke that evening, I wouldn't have given much for my chances. Finally, at about 11.30pm, the rest of the curtains arrived.

After all that – which clearly caused tremendous hassle for all the staff concerned as well as the patients – there was still a C.difficile outbreak in the ward a couple of weeks later. So much for the government clean-up initiative.

As the days passed I became increasingly concerned that I was chasing people for pills and blood tests, and I had no real idea of what was going on with my treatment at all. Although the staff were very pleasant, no one had talked to me about my future, what to do, what not to do, and about how long a brain takes to heal. I wasn't tested for anything, nor counselled, save by a social worker I had repeatedly asked to see, but who turned out to be so desperately patronising that I wanted to strangle her.

In the previous hospital, the pharmacist had printed out a list of Warfarin interactions from an NHS website, of which there are many. At the specialist ward, no one told me anything, except that I was Warfarin resistant and it was proving incredibly hard to get me up to the right level of it. It's a tricksy drug; not enough and you are vulnerable to another stroke, but take too much and you can bleed internally. One friend rang me in concern. "Get a second opinion! My dad said there's all sorts of stuff you can't do when you're on Warfarin. You can't go in a sauna!" I had to laugh.

Friends were lovely and brought me fruit, chocolate, magazines and socks. On the Sunday I had eight visitors. After a while, in fact, I began to be institutionalised. I am freelance and work a lot from home, so no one brings me my meals every day, or my tea. Being waited on hand and foot was a novelty, ample payback for all the needles being stuck into me every day.

After the madness of the previous two years, this, in a twisted way, was the holiday I desperately needed. Actually, there was a moment – not for long, just a few minutes, when I was lying in bed, just looking at the sky – when I suddenly felt a real lightness. It had nothing to do with the sunlight, or sleep or lack of it, or any medication I might have had. It was a sudden, if momentary, leaving behind of all the troublesome things in life, a minor nirvana.

My boyfriend urged me to hold that thought, but was hard. As when dealing with call centres and technical helplines, I found it a monumental strain dealing with the many staff who didn't speak English as a first language. At the same time, I realise that this is the future of the English-speaking world, and having to make yourself clear forces you to be very calm and think things through before speaking aloud, which perhaps is not always such a bad thing.

The moment my Warfarin levels edged into the safe range, I was booted out of there with two hours notice, two days earlier than I expected. Luckily my boyfriend was able to drive me home, but he couldn't stay over and I spent the first night alone in my flat. The most stressful thing about it all was the feeling that I was having, to some extent, to manage my own care. There were days when I wasn't totally sure if I was going to be given my medication or a blood test, and I felt I had to pester and nag for things, like the sick note I was legally entitled to. I wasn't comfortable having to go into control freak mode when I'd just had an acute brain event at an unusually young age. My discharge summary stated that I'd had counselling when I definitely hadn't.

If you saw me today, almost a month on, you wouldn't think anything had happened to me. I can walk and talk, and for that I am more than grateful. However, although I have been astoundingly lucky and am improving a little every day, there are going to be problems. I was warned, at the first hospital, not to do anything physically demanding for about six weeks, so I am sitting at home trying not to eat too much. I have been for many, many blood tests while they try to stabilise the Warfarin.

I could be taking it for a very long time, and, now that my care has been moved over into the correct PCT, I'm hoping someone will talk to me about this in detail. I am wary of rushing on to the web when such a serious medical issue is at stake.

I have, for the moment anyway, lost my chief source of income, which involved ultra-fast typing, lugging a bag of equipment around, and intense deadlines. My left hand is lagging behind my right, and I am using a stick to walk, for a bit of help with balance but more, perhaps, for a sense of security in public; it would be very ironic if someone saw me wobbling a bit and thought I'd been drinking. My left hand shakes a little, as does my upper body, when I do certain weight-bearing things at certain angles. Photography, therefore, is proving a challenge. I can feel my speech slurring a little, but everyone swears they can't tell, perhaps because I am making an effort. Sometimes I get tired, or at least my brain does.

Above all, though, I am only too aware of how lucky I am that, a month after having two strokes, I am at least able to write this, and I am hoping to make a full recovery.

www.taniaglyde.com

Tania Glyde is the author of Cleaning Up (£10.99), which is published by Serpents Tail. To order a copy for the special price of £9.89 (free P&P) call Independent Books Direct on 08700 798 897, or visit www.independentbooksdirect.co.uk

A common affliction: how strokes affect Britain

By Rebecca Armstong

* 13% of all deaths of women in Britain are stroke-related

* Some people are more at risk of a stroke than others because of things they can't change. These include hereditary factors – people are more at risk if someone in their family has had a stroke; age – arteries harden and become furred up with age, which means older people are more likely to have strokes; sex – in people under the age of 75, men have more strokes than women; race – people of Asian, African and African-Caribbean origin are more at risk; and medical conditions like heart disease and diabetes

* £2.8bn: the direct cost of strokes to the NHS

* Those most at risk include older people and those with high blood pressure (hypertension) or diabetes. Lifestyle factors such as diet, drinking alcohol, smoking and how active someone is also affects their risk

* 3rd most common cause of death in England and Wales is a stroke, after heart disease and cancer

* The second type of stroke is a bleed, when a blood vessel bursts, causing bleeding (haemorrhage) into the brain. This is called a haemorrhagic stroke

* 9% of all deaths of men in Britain are stroke-related

* Because they raise blood pressure, certain recreational drugs, particularly cocaine, Ecstasy and amphetamines, have been linked to strokes by medical experts described in numerous studies, including one by the University of Edinburgh

* £2.4bn: informal care cost

* The most common type of stroke is caused by a blockage. Called an ischaemic stroke, it occurs when a clot blocks an artery that carries blood to the brain

* The hormones in some contraceptive pills or HRT can make the blood thicker and more likely to clot, and may increase the risk of high blood pressure – a cause of stroke

* The risk of suffering from a stroke doubles with each decade after the age of 55

* 67,000 deaths in Britain every year are as a result of strokes

* 150,000 people have a stroke in the UK each year and 10,000 of these are under retirement age

* To help prevent a stroke, doctors advise reducing alcohol intake and giving up smoking. In terms of diet, it is impotant to reduce salt intake, eat more fibre, limit the amount of fat consumed and watch your weight. Taking regular exercise can help to reduce the risk of a stroke and blood pressure checks should flag up potential problems

* Anyone can have a stroke, including children mand babies

* £1.8bn cost of strokes to the wider economy

Source - The Stroke Association and NHS

Private Medical Cover from £30 per month with Independent Compare