A victim? I'm very far from being a victim

As someone who was a journalist for nearly 30 years before my stroke, language is important to me.

Correct use of language allows us to express ourselves clearly and it allows us to be understood clearly. I should say, however, that I’m old enough not to be offended just for the sake of being offended, which seems to be a curse plaguing the English language these days.

Something was brought to my attention recently, however, which does offend me. It offends me for no other reason that it’s just plain wrong. Nick Clarke (@69Clarkey) a fellow stroke-activist who founded the charity Strokeinformation (strokeinformation.co.uk) drew my attention on Twitter to something which he said was on display at an NHS England hospital for the benefit of staff which referred to ‘the rehabilitation of stroke victims’

And it’s that word ‘victims’ that annoys me. It implies a sense of suffering which I’ve never felt from the first day I started my stroke journey. It implies that I’ve had something done to me against my will and I’m not fighting back.

Well, I am fighting back and so are the 100,000-plus other people in the UK, from Andrew Marr to me, who have strokes every year. Anyone who has ever read any of my scribblings, or heard me speak about stroke-awareness, will know that I prefer to use the word ‘stroke-survivor’. My stroke probably should have killed me because not only did an artery burst in my brain, but it caused me to collapse paralysed in the middle of a busy town-centre road and nearly be hit by a bus.

But it didn’t kill me. I survived it, lived to tell the tale and lived to say why I object to the use of the word ‘victim.’

Yes, I had a stroke but the word ‘victim’ implies something passive. It implies that I’m just sitting here and letting the consequences do to me what they will. Anyone who knows me will know that couldn’t be farther from the truth. I’m not a victim, I’m a survivor, a battler, a fighter (a warrior, indeed) who will keep trying to overcome the consequences of my stroke for as long as I can.

Sure, there are lots of things I can’t do as a result, or where my ability is affected by the mental and physical consequences, but there are so many things I can still do, or do better than before.

Without facing and overcoming such a massively life-changing event, I wouldn’t have started this blog, for instance; I wouldn’t be producing the highly-successful Warrior podcast (thewarriorpodcast.libsyn.com) which is getting my stroke-awareness message out to people worldwide; I wouldn’t have been contacted last week by a lady from Aberdeen, seeking to connect me with the family of a stroke-survivor in Fife; I wouldn’t have stood in front of a room full of hard-nosed business people last Tuesday evening and held them spellbound for 30 minutes with my story; I wouldn’t have had an invitation to do something similar next Monday evening.

Does all that make me sound like a victim? No, I don’t think so, either. The stroke-survivors I know are some of the most inspiring people I have ever met, or will ever meet - from the former teacher who had to have half of his skull removed so that doctors could treat his brain injury, to the lady who does burlesque despite having the use of only one arm, to the extraordinary lady who has no feeling down one side, yet does so much to promote mental-health awareness while being involved in a successful business.

They and others tell me I am inspiring, too; it used to bother me until someone told me: “If people want to think you’re inspiring, then f*** it, let ‘em.”

So now I do. The one thing that I (and all those other people) am not is a victim, so please don’t call me one.

Fast and furious

Inevitably, this blog is usually about stroke-awareness. After all, stroke-awareness is why I started Ask The Warrior, stroke-awareness work is a large part of my life and if you have to live with the after-effects of a stroke, it can be all-consuming.

I remember a very good friend once telling me not to be defined by my stroke. She was saying (I think) that I’m so much more than just my stroke and that I should be well-known for all the other things I do.

She was right in that I’m so much more than just my stroke but I’ve always thought that she was wrong because by saying that, she was trying to downplay the effect the stroke has had on me - and that is impossible.

All of which is a roundabout way of saying that this post is not about stroke. Anyone who knows anything about me will know that I’m an all-round sports fan. I worked in sports journalism for 19 years, I have a season-ticket for Tamworth FC and I’ve watched everything from American Football in a crowd of 80,000 at Wembley to rugby union before a crowd of, well, maybe a dozen in a local park. There aren’t many sports I don’t like.

I usually make an exception for motorsports, however. I just don’t see the attraction of Formula One and most motor-cycling leaves me cold. Why stand in the same place to watch a group of men on machines whizz past very quickly for maybe ten seconds, then stand looking at a screen for maybe two minutes before seeing them again?

Speedway, though, is different. I’ve been a fan ever since the mid-1970s when a neighbour (I even remember his name - John Foley - and the fact that he owned a butcher’s shop in Kidderminster) used to enthuse about Cradley Heathens. I remember going to a few meetings at the old Dudley Wood track with his family, but the call of other things meant my interest was carried on from afar until I became self-employed in 2010, started going to business networking meetings and was introduced to Mark Northall.

To say Mark is a speedway fan (along with his wife Diane) is to say that Gary Lineker is quite well-paid for giving his views on football. Mark does talks educating people on speedway, he is active in god-knows how-many social media groups about it, he can probably tell you the name of every team in every European league and the Northalls seem to spend most summer weekends flying off to watch the Grand Prix series in cities all over Europe - oh and he’s a proper Black Country character who was brought up on Cradley speedway.

His infectious enthusiasm has rubbed off on me and for the last several years I have wanted to attend the British leg of the GP series in Cardiff. The trouble was, for the last few years, it has clashed with our wedding anniversary. I’ve got away with a few things on anniversaries before (Bruce Springsteen at the Ricoh Arena in Coventry in 2016 just happened to be on Mrs Warrior’s birthday, for instance), but speedway? Probably not.

Until this year, when the British GP was moved to September. Last Saturday, to be precise, at the Millennium Stadium. Mrs Warrior got in free as my carer, the ticket prices weren’t too unreasonable - and one thing stroke tells you is that life’s too short not to make memories when you can.

Reader, we loved it. Four men on 70mph bikes with no brakes flying around a 400m track is spectacular enough outdoors. In an indoor 80,000-seat arena with the roof closed, it was one of the most entertaining sporting events I’ve ever seen.

More experienced speedway-watchers tell me it wasn’t that good from a racing viewpoint. The track wasn’t prepared in a way which allowed for overtaking, some of the referee’s decisions were poor (no VAR, LOL….) but to a relative newcomer, it was a great spectacle.

We’ll definitely be going next year and I want to taste domestic speedway again, as well (after all, Mrs Warrior was enthused and she doesn’t do sport). If you’re looking for a new sporting experience next summer, don’t get dragged into cricket’s manufactured reinvent-the-wheel all-about-new-audiences The Hundred competition, try something authentic. Try speedway, if only because it smells like nothing else on earth (in a good way - you have to be there to understand).

Assessing the assessors

I’ve written here in my last two posts about the unfairness and iniquities of the assessment system for most disability benefits (new readers start here: I lost my eligibility for Personal Independence Payment in March. I appealed and lost, appealed to a tribunal and won before the tribunal hearing ever took place).

What those two posts were about was how the system is purely interested in cost-cutting and how arguing with it is difficult, stressful and time-consuming. But I’ve been asked since then to write about the apparently arbitrary nature of the assessment system itself. Briefly, anyone claiming any type of disability benefit usually has to have a face-to-face assessment with someone employed by the Department For Work and Pensions, to establish if they still qualify.

That’s what happened with me; someone came to my house at 9.30 one morning (a planned appointment), bluntly asked me a series of questions about how much I was physically capable of doing, then left. The next thing I knew, my benefits had been removed before a letter arrived in the post telling me that would happen.

But at least I had my assessment at home; I have known of people being made to travel from Tamworth into central Birmingham for appointments (a journey which is stressful for the able-bodied and near-impossible for the wheelchair-bound) while one friend of mine was made to travel from Coventry to Stoke-on-Trent.

And not only do the venues for assessments vary, but the quality and style of assessors seems to vary wildly. Mine was brusque in the extreme; I have heard of others who seemed to be far more understanding about the situation of the people they were assessing and far more willing to make allowances for those situations.

More worryingly, given my condition, some seem to know next-to-nothing about the mental aspects of disability, particularly stroke - what I call my ‘invisible disabilities’. These include inability to cope with stress, extreme fatigue, memory loss, cognitive issues, panic attacks. To put it bluntly, carrying out a police-style interrogation is going to stress me into incoherence; that doesn’t seem to be the correct way to get to the truth about my situation.

Anecdotal evidence among those who are active in and knowledgeable about the disability world also suggests that because DWP are short of assessors, they will take on pretty much anyone. I have heard of medical students, half-trained paramedics and others who wouldn’t seem suitable being taken on.

And this variability in quality of assessors could imply that getting to the truth about people’s conditions was rather less important that it should be. Indeed, I have been told that some are given quotas for numbers of people who they have to fail, whatever the circumstances.

But that couldn’t possibly be true. Could it?

The wrong way to treat society's most vulnerable people

My last blog post was intended to be controversial - and so it proved. I got more reaction than I have from any other blog post I’ve ever written, on any subject, and the Different Strokes charity (differentstrokes.co.uk) picked it up to use as a guest blog on their website and all their social media.

As a friend of mine, Paul Orangetree, noted when he shared it on his Facebook feed, “This is the consequences of current thinking on the subject of how to treat the more vulnerable in society”.

In the wake of its’ publication, I was inundated with stories about how disabled people (and as Paul also noted, you have to make this about people), who have been treated in the most horrific ways by this system.

What annoys me most about this tale, however, is how much it showed up the fact that if you are prepared/able to stand up for yourself, so to speak, you can win. The fact that 76% of people who take the Department of Work and Pensions to tribunal are successful must surely show how flawed the system is. Of course, people who go to tribunal are usually the ones with the wherewithal, determination and knowledge to know what is required. That wherewithal, determination and knowledge often means, therefore, that they are the ones who eventually get the money to which they are entitled, while others don’t.

I know that the process of arranging three appointments with the Citizens Advice Bureau, attending lengthy meetings with their advisers in three different locations, filling in and posting far too much paperwork and finding the necessary supporting documents was stressful for me, a highly-experienced journalist; what must it be like for someone who may have concerns about leaving the safe environment of their house, may have trouble writing or composing letters or for someone who may see the whole thing as just too much of a faff?

When I told a friend what had happened, he listened closely to the whole story then remarked: “You won because you scared them.” That’s undoubtedly true, but I cannot stress enough how wrong the system is when you can only win if you ‘scare’ the pen-pushers and bean-counters.

I have since been contacted by a friend in Wales who runs a charity called the Legacy International Group, which works to overcome the barriers which disabled people face. This saga has done more than anything to convince me that it is up to people like me and my friend, who can and will challenge the system to create real change, to do so in order to help and support our less confident counterparts.

In a way, it’s radicalised me; something which often happens when flawed systems are seen to be treating the vulnerable unfairly. My Welsh friend wants to start a campaign to change this system. I’m on board with her. Will you come with us?

Are we really a civilised society? My own experience

I wrote here last week about how the mark of a civilised society is how it treats its’ most vulnerable people - and about how I didn’t think we were doing very well on that front in this country.

That statement was based on the stories I hear and the people I meet as a result of the stroke-awareness work I do; I didn’t expect to be able to follow up this week with a story based on my own experience.

Since shortly after my stroke in December 2013, I have claimed Personal Independence Payment; while I was still in hospital, my stepmother spent a considerable amount of time in Jobcentre offices and on the phone to the Department of Work and Pensions, trying to establish what benefits I was entitled to. It took nine months for DWP to pay me and they only did so after my MP threatened to mention my case in the House of Commons.

I was eventually put into the system and all proceeded normally until February this year, when I was told I would be given a face-to-face assessment at my house. That took place on February 21 and was, frankly, brutal. I had with me the secretary of my local Headway group, but the assessor refused to allow her to speak and would not even allow her to help me with my answers to questions, even though I was wracked with nerves and am prone to panic attacks anyway, because of my brain damage.

Three weeks later, without warning, I noticed that the monthly payment into my bank had gone down by 25%. Two days after that, I found out why. A letter came in the post saying that I had failed the assessment and my PIP was being withdrawn from a date seven days before I received the letter, hence the shortfall. my wife’s Carers’ Allowance was also stopping immediately. Obviously, I was devastated. A considerable amount of income was going to stop and the only way we could replace it (I have substantial medical evidence that I am unable to work) was to start running down our limited savings.

Obviously, we appealed with the help of the Citizens Advice Bureau. Equally obviously, our appeal was dismissed. We had no choice but to take DWP to tribunal, but I have heard of such cases taking 12 months or more to resolve. Our savings would have run out way before then. My wife was already at the point of exhaustion, having taken on a part-time job while also caring for her elderly mother as well as me. To say our relationship almost cracked under the strain on many occasions this summer would not be over-stating it.

In early-August, the Tribunal Service wrote to say they had asked DWP for a written response and would be in touch with a date for the hearing. Every morning, we waited in fear for the postman to deliver a letter confirming the date. It never came.

And then, on Wednesday of this week, a letter did come. It was from the DWP, saying that they had reconsidered my case ‘based on all available evidence’ and had decided to reverse their original decision. Not only that, but they were increasing my monthly payment by roughly 25%. Wednesday was my best day since March - after six months of holding my breath and waiting for a bombshell to land, I could breathe again and we could resume our lives.

But what have the last six months achieved? My wife and I, already under huge pressure because of my health, have regularly been at a point where we thought we couldn’t go on; where the financial, emotional and physical stress was too much. That stress has led to daily arguments, to daily fights over whether we could afford to do or buy this or that. It is not going too far to say that six months of our lives have been ruined.

And then, a letter arrives without warning and someone in the system says: “Sorry, we were only kidding; you can carry on now!” With no apology, no awareness of what they have put us through, no acknowledgement of the people whose lives were almost wrecked.

I won’t have to be assessed again until August 2023. By then, I hope this heartless system will have changed. I have said privately for years that the system is so scared of the very limited number of fraudulent claimants that it cannot treat genuine claimants in a respectable manner; now I will say it in public.

Are we really a civilised society?

If the mark of a civilised society is how it treats its’ most vulnerable people, then we don’t do very well in this country.

In the five-and-a-half years since I became part of the disabled community, I’ve realised just how many hoops disabled people have to get through to be treated in something like a civilised manner; how many obstacles are put in our way by society generally and by the various parts of the state system.

It’s not ideal for those of us with the knowledge, the determination, the wherewithal to fight our way through and around these obstacles; to use t’internet to try to discover what is out there to help us, then have the determination to go out and find it.

I mean finding out what benefits are available, what help and support is available (from physiotherapy to the moral support of just talking to other people in your position), where you stand legally, what the future holds.

If it’s tough for those with the will to do it and who are able to do it, then it’s close to impossible for those without the will or the wit. By the nature of the circles in which I move, most of the disabled people I meet are in the former camp. This week, I was introduced to a lady who is one of the most mistreated examples of the latter that I’ve ever seen.

Her husband, who is in his 40s, had a stroke nearly two years ago. It was misdiagnosed by their local hospital and the lady was told to ‘‘take him home, there’s nothing wrong with him.” Of course, there was something very wrong with him and his health declined until he had another, much worse, stroke a few months ago.

He didn’t know (and didn’t know where to find out) what support and benefits were available and because he was unable to work, his wife had to take on more work and longer hours in an effort to pay the bills. She didn’t know what charities existed to help survivors and their families and again, didn’t know where to find out. Having heard their story, it seems a miracle to me that the family are still together. Remember, figures from the Stroke Association suggest that only 20 per cent of stroke survivors and just ten per cent of carers say they received the support they needed to cope with the emotional aspects of stroke (‘Feeling overwhelmed - the emotional impact of stroke’ published by the Stroke Association in 2013).

This makes me so angry. Stroke changes your life in a zillion ways, affecting your ability to work, earn, shop, get about, your memory and your mood, to name but a few. It is the fourth-biggest killer in the UK and almost two-thirds of survivors leave hospital with a disability. People of working age are two to three times more likely than the average to be unemployed eight years after their stroke.

Yet unless you are willing and able to kick down doors, ask the right questions, make an almighty fuss, you can slip through the gaps in the system, as this family clearly has. To repeat, life after stroke is difficult enough for those of us who are willing and able to engage. What is it like for those who can’t or won’t?

And what does it say about our society that it takes someone like me, just an ordinary citizen but one who has been there, done it and got the brain damage, to help someone who is clearly in desperate need of help and support and doesn’t have the determination to fight through all the barriers which the system puts in front of them?

Three hours is a very long time - or is it?

It goes without saying that I get a lot of satisfaction from my stroke-awareness work. Writing this blog, being active on social media, doing The Warrior Podcast, speaking about stroke and stress - not only does it all stop me from sitting at Warrillow Towers looking at the wall, but it all helps to make a difference, however small, to how people view stroke.

Very occasionally, I get invited through my contacts at the Stroke Association to take part in stroke-research workshops - days when the academics involved in the treatment of stroke get to meet and talk with survivors and discuss their latest work.

These are useful on a number of levels - not only do they give me chance to promote what I do, they often provide opportunities to give a survivor’s perspective on what the academics are doing. One such invitation sent me to the City Hospital in Nottingham on Tuesday of this week.

Nottingham is one of the major centres of stroke research in this country and Professor Marion Walker MBE, Professor of Stroke Rehabilitation at the University of Nottingham, is one of the leading lights in the field. It is also home to the Nottingham Stroke Research Partnership Group, a collection of stroke-survivors, carers and academics.

On Tuesday, over 60 delegates (including The Warrior), spent the day assessing four pieces of research being carried out by PhD students and doctors at Nottingham. I won’t blind you with science, because some of the detail can be a little daunting even for someone with a fully-functioning brain, but everyone agreed it was a thoroughly useful exercise.

The statistics around stroke are truly frightening. There are 100,000 strokes every year in the UK, which equates to one every five minutes; there are over 1.2 million stroke survivors in the UK; Stroke is the fourth-biggest killer in the UK; almost two-thirds of stroke-survivors leave hospital with a disability. I could go on….And I learned a few more on Tuesday.

Consider these two numbers: 50 per cent of people who suffer a brain haemorrhage (the type of stroke I had) die within a month; one million brain cells die every minute from the time the stroke occurs to the time treatment is given. That’s why the T in the FAST test stands for ‘Time is brain’. The quicker a stroke sufferer is treated, the better their chances of survival.

I was immensely lucky to be in a bed in a hyper-acute stroke unit within 90 minutes of my stroke. Others are not so fortunate - if you are at home alone at the time of your stroke, for instance, it could be hours or days before you are found. By which time, it may be too late.

It was good, therefore, that one of the projects talked about on Tuesday involved a new drug which could improve the chances of survival - but it has to be administered within three hours. That sounds a long time, doesn’t it? Three episodes of your favourite TV drama; two whole football matches; an entire T20 cricket match. But it isn’t, not when life is at stake. It requires a patient to be taken to hospital quickly; it requires paramedics, doctors, nurses and plenty of other medical staff to act quickly under extreme pressure.

I pointed this out to the researcher involved and he admitted that yes, that was an issue. It’s why medical teams are working hard to cut down the time it takes to get people into hospitals and into beds after stroke.

As readers will know, I do a lot of talks about stroke-awareness and I always ask my audience if they know what the FAST test is. On average, half of any audience will know. That’s not good enough in itself but I often find that people can identify three-quarters of the acronym easily enough, but stumble when it comes to the last letter.

So remember that T stands for Time is brain. And that three hours may sound a long time, but with a million brain cells dying every minute, it really isn’t.

Let's talk about creativity and artistic talent

I could use this space to rant about the unfairness of life with a disability; how the world doesn’t understand, puts problems in your way, makes life much more difficult than it should be, rather than trying to make it easier.

I could do that all day long, but what’s the point? It wouldn’t change my situation now, other people are better-placed than me (if they would stop obsessing about Europe) and it would only make me angry. And as I’ve said ad nauseam, getting angry gets me stressed, which gets me angry, which gets me stressed…

So instead, I’m going to talk about creativity. It’s a well-known fact that people with brain damage find they are able to express themselves in different ways than they could before their accident. This is because the zillions of neurons in the brain rewire themselves in different ways to cope with the fact that an area of the brain is now dead.

This process is called neuroplasticity and to get a far better understanding of it than I could ever give, I recommend you seek out a book called “The brain that changes itself’’ by Norman Doidge. I was given this book soon after my stroke and it is by far the best thing I have ever read about this fantastically complex piece of kit.

It explains how stroke-survivors suddenly become accomplished musicians or artists or IT experts - because the connections needed within the brain to make them accomplished musicians or artists or IT experts didn’t exist previously, but do now.

It’s why music therapy is so useful, why art therapy is so useful - because stimulating these new connections helps them grow and improve.

I’m a prime example. Before my stroke, I could hardly draw a square but my local branch of the Headway brain-injury charity puts on occasional art classes at which we are encouraged to paint by a very good teacher, Jayne Good (paintwithjayne.co.uk). We had another one this week and in a three-hour class, four strokies with no previous artistic talent produced some inspiring art. In my case, it was my second effort and although I wouldn’t say it was massively better than the first, it was certainly just as good and the class was just as enjoyable. I definitely want to do it again.

Yes, I would need expert guidance; no, I won’t be selling my art any time soon. But the sense of achievement is enormous and stroke-rehab, as I say so often, is all about mindset - focusing on what you CAN do rather than what you can’t.

My only problem now is finding somewhere on the increasingly crowded walls of Warrillow Towers to hang this beach-scene.

Staying safe and sound

A large part of the reasoning behind this blog is to raise awareness of the fact that strokes exist, to explain what they are and to make people aware that there are 100,000 strokes each year in the UK - that’s one every five minutes.

But the largest reason for doing it is to explain what it’s like to live every day as a stroke survivor. When people ask what I do, I always say “I scare people.” That’s partly because people do sometimes need scaring into realising that this ‘life-changing event that will always happen to someone else’ could happen to you today. It’s also because I want to dispel the ‘you don’t look as if you’ve had a stroke’ myth.

Because I admit that on the surface, I don’t look as if I’ve had a stroke. I walk with a limp, I use a stick because my balance is shot to bits….and that’s it. Only it isn’t ‘it’. I wrote in my last post about the joys of stroke fatigue, the all-consuming tiredness which can stop you functioning for hours, days on end.

In this post, I want to look at sound, so to speak. My stroke and subsequent brain damage has left me with an extreme hypersensitivity to noise. Too many conversations going on in one room, loud supermarkets, the television turned up too loud, screaming children……they all leave me feeling as if someone is taking a sledgehammer to what’s left of my brain. And when that happens, I’m liable to lash out, either verbally or (much worse) physically.

It’s why I now prefer to sit in silence whereas, pre-stroke, the TV or the radio or some sort of music was always on. Yes, I feel as if I’m missing out on things that other people enjoy. When friends excitedly tag me into social-media posts about the latest release by this or that artist, I’m not as anxious to go and seek it out as I used to be. That’s because my brain can no longer cope with 90 minutes of music playing. It (and therefore me) would rather sit quietly with a good book or a newspaper.

Pre-stroke, writing this blog while listening to the radio or TV would not have been a problem. Now, I have to sit in silence to allow me to concentrate.

This, of course, can be difficult in all sorts of social situations. I (or rather, Mrs Warrior) has to choose where we sit if we are out socially. We must sit away from large groups or families; sometimes we have to leave if the noise is too much; sometimes, the noise just becomes one big blur and I sit in (seemingly ignorant and rude) silence. It’s not ignorant or rude, it’s just that to say something/anything might lead to trouble.

This is even difficult when we are out with other brain-injury survivors, as we often are because we are in two different support groups. I cannot say often enough that strokes and brain injuries affect different people in different ways. While I am hypersensitive to noise, others may have lost what I call their ‘subtlety filter.’ They speak in an over-loud voice, will intervene in conversations, will be oblivious to the concerns of others.

I understand their situation because I am looking at it from the other end of the discussion. While their injury has left them naturally noisy, mine has left me naturally quiet. To people who don’t appreciate brain-injury, both of us will seem ‘odd.’

We’re not odd, we’re just trying our best to work with the hand life has dealt us. As I said at the start of this post, if I can stop one person from ever again saying: “but you don’t look like you’ve had a stroke….’, I will feel that what I do is worthwhile.

I'm not just tired.......

Stroke fatigue is one of the most difficult and debilitating things about living as a stroke-survivor. It’s a kind of crushing, all-enveloping, tiredness that takes over the brain and body and leaves a person almost unable to function as a normal human being.

In simple terms, stroke fatigue is the result of a mixture of physical and emotional factors. After a stroke, your brain and body are healing, a process which takes up a lot of energy. In addition, simple tasks like walking, talking and thinking use up far more energy than before the stroke. Emotional problems like depression and anxiety, which are common in stroke-survivors, also add to tiredness.

The best analogy for it I’ve ever heard is this, told to me by an occupational therapist in the weeks after my stroke: You’re trying to get from Birmingham to London by car, but the M1 is shut, so you have to go down the A5. You haven’t used the A5 for 50 years, so you have to read all the road signs, think about which exit to take at every roundabout and, obviously, you can’t go as fast.

So the whole journey takes more time, more effort and more energy. You get to London in the end, but it takes 50% longer than if you had gone down the M1. That’s life as a stroke survivor. More prosaically, a fellow-strokie once told me: “Our brains have had a damn good kicking. Is it any wonder that they get tired?”.

I have told these stories before in this blog, but they need telling and re-telling because they are so important and stroke fatigue is so misunderstood. Figures from the brain-injury charity Headway show that 75% of brain-injury survivors need help to understand the effect fatigue has on them; the same percentage feel that people in their lives do not understand their fatigue.

For the millionth time, it has nothing whatsoever to do with what time we go to bed or what time we get up. As long as we get a sensible amount of sleep every night, that part of our lives is dealt with. But people have to understand that we all go into each day with a limited amount of energy, much like having a full tank of fuel in our car. But brain-injury survivors use that energy at a much quicker rate than ‘normal’ people and if we don’t replenish it, we are running on fumes by the end of the day.

In my case, I absolutely have to rest for between 45 minutes and an hour each afternoon to replenish my energy tank. If I don’t, I become miserable, ratty and even more stressed than normal - which takes up more energy and the vicious circle begins again.

I’ve been saying this in all my stroke-awareness work for at least three years and it frustrates me that I still get ‘‘Well, if you went to bed at a decent hour….” from those around me. THAT HAS ABSOLUTELY NOTHING TO DO WITH IT. I go to bed at 11.30 most nights. That would be an issue if I was getting up at 4.30am for work. As it is, I am retired and I rarely get up before 9am. Nine-and-a-half hours is more than enough, even for a brain-injury survivor, but think again about that energy tank and its’ limited capacity. I couldn’t fill it any more even if I slept for 12 hours and the mere fact that simple tasks like walking and talking use up more energy than they did pre-stroke cannot be avoided.

So please don’t tell me I’m ‘just’ tired. I’m not. I’m doing my best. I’m sure you’re tired too - it’s the nature of modern life - but being tired with a fully-functioning brain and being tired with a stroke-survivor’s brain are different things. Trying to make people understand that is one of the most important reasons why I write this blog.

Who knows your final wishes?

I’ve often said that having a stroke does force you into thinking about several things you would rather not think about. The first of them is financial planning - making sure your family (and the mortgage company) are catered for in the event of you becoming incapacitated, unable to work, paralysed, or God forbid, dead.

I speak to a lot of financial experts who say that planning for the-life-changing-event-that-will-never-happen-to-me is one of those things that people shove into a distant corner of their brain, only bringing it out when said event happens to a friend or family member. In the meantime, TV packages, pet insurance and so on are just accepted as a routine part of the monthly outgoings. But health insurance is ‘too expensive’ or “I won’t need it.”

The other thing that people would rather not talk about is planning for death. I survived my stroke and plenty of others do but, according to the latest statistics from the Stroke Association, stroke is the fourth-biggest killer in the United Kingdom. It usually strikes without warning, turning peoples’ lives upside-down in an instant. But what if you haven’t made plans for death?

Nearly 60% of Britons haven’t made a will (Mrs Warrior and I aren’t among that 60%) and this doesn’t just lead to financial uncertainty after death. Do you want to be buried or cremated? Put in a plastic bag and your ashes thrown in the river? Buried in a churchyard? Cremated and your ashes scattered in a particular spot? What music do you want played at a ceremony? Do you want a ceremony at all? Do you want to be resuscitated if you become unconscious? Have you discussed some or any of this with your family, or a close friend, or anyone?

If you haven’t made your wishes clear, your family will not know what you want and then their wishes, not yours, will prevail. And down that road lies family arguments, conflict at the graveside or in the church, the kind of drama which soap-opera scriptwriters can probably draft in their sleep. And who wants that? It might draw the audiences on EastEnders, but is that really how you want to leave this world? And don’t tell me that only happens on television, because I know vicars who have seen it happen many times at funerals where they have officiated.

I mention all this because on Friday, I heard Ian Leech, Community Engagement Manager at St Giles Hospice, near Lichfield, give a fascinating talk about care planning which encourages people to put their wishes down in writing. Not just about what they want done with their body after death, but who they would want making decisions about their future if they became incapacitated, where they would want treating if they became incapacitated and so on. As Ian put it: “the more detail you are able to provide, the more likely it is that you will receive the care you would like to receive.”

It strikes me as astonishing that more people don’t talk about this, because I think having our wishes observed as we leave this world should be one of the most important things we do. I say that because, had I not survived my disagreement with a bus in December 2013, Mrs Warrior would have known none of this and wouldnt have known where to begin finding out.

Now, she knows all the important details and after hearing Ian’s talk, I’ll be adding some more.

As part of a pilot scheme operated by the South Staffordshire Action Alliance, people living in South and East Staffordshire will be able to fill in their care plan online at www.MyWishes.co.uk. The internet-averse can obtain paper copies. And as I say about everything I do, if this post has scared you into action, or even scared you into thinking about action, it’s been worth it.

 

Let's talk about....boiled eggs

One of my favourite ways of spreading my message about stroke-awareness is through public speaking - by actually standing up in a room full of people, telling my story and doing my best to educate them about stroke and stress.

It can’t be denied that this blog and The Warrior Podcast (thewarriorpodcast.libsyn.com and on iTunes) have a greater reach and get my brand in front of more pairs of eyes, but there is nothing like the buzz that I get from actually scaring people live and in the flesh.

It’s something I would never have dreamed of doing before my stroke. There is a reason why most of my career in newspapers was spent as an office-based sub-editor rather than a reporter ‘out in the field’ talking to people and getting stories.

But my stroke provided me with a story to tell and a message and if I was going to tell it properly, I was going to have to become a public speaker. So I went to workshops run by accomplished public speakers who I knew and trusted (Brad Burton and Taz Thornton, this is your fault…), overcame my natural reticence and went out and did it.

One of the first challenges I remember is a task I was set at a workshop run by the above-mentioned Taz. I had to talk for three minutes, without being notified beforehand, about….boiled eggs. It just so happens that Mrs Warrior hates eggs of all descriptions, so I was able to talk about that. Doing so successfully made me realise that if I could talk about that, I could talk about pretty much anything,

Since then, I’ve done hundreds of talks about stroke-awareness, as well as on the workings of the brain and on naturism. Standing in front of big groups of people no longer bothers me and I can talk for hours (or would if the organisers would let me); a remarkable transformation for someone who once had a real hang-up about the sound of their voice.

I’m still well short of being able to command vast fortunes to speak (although if you’re offering……) and I will never forget what another great speaker, Stefan Thomas, once told me - that being a public speaker is like being in a band in that you have to do four million unpaid gigs in someone’s garage before you become an overnight success.

But I achieved another ambition last week by speaking in an unfamiliar environment to a room full of people who largely had never heard of me, didn’t know my story, didn’t know if I was any good. All I knew was that the organiser of this event doesn’t book speakers unless he has confidence that they will hold an audience.

Yes, I was slightly nervous beforehand. I’ve come to understand that if a public speaker isn’t slightly nervous, they get careless and that’s when they dry up, make mistakes, lose the thread, embarrass themselves. But I carried it off successfully, could have talked coherently for at least twice as long as I did and gave the audience something to think about, which is why I do it.

I’ve had to cut back in recent months as my health took a turn for the worse (However much I believe in what I do, I can’t help anyone if I’m dead) but a couple of introductions this week could help me move to another level. And I would say my ability to speak coherently and in an interesting way in public is perhaps the biggest positive to come out of the life-changing event which was my stroke.

Have you done all you can do? If you have, then stop worrying

In my last post, I talked about life after stroke being a mindset. I talked about the importance of developing a positive attitude and a fighting spirit.

Little did I know that just a day after I wrote those words, my own positive attitude and fighting spirit would be tested and challenged in a way it has never been tested since the day I had my stroke.

I can’t go into details because the situation is still ongoing, but I do know that if I hadn’t developed that positive attitude, that fighting spirit, I could easily have caved in completely over the last fortnight.

The realization that my attitude had changed for the better came quickly. In the hours after receiving some very negative news, I didn’t sit around thinking ‘woe is me, what’s going to happen now?’. Instead, I set about making phone-calls, writing emails, sending text-messages and tweets to those who I thought might be able to help. After all, there is no point in having nearly 1400 Facebook friends, nearly 500 followers on Twitter and over 1200 LinkedIn connections if you can’t call on them when you have a problem, is there?

Not only did all this activity take my mind off the problem, it yielded swift results. Some very influential people came to my aid and I feel better about the situation now than I did two weeks ago. But I did something else, as well. Or rather, I didn’t. I didn’t allow my mind to fill itself with ‘what if?’ scenarios. Constantly asking myself: “Why did I say/do that?’’ or ‘‘What if i’d said this or that’’ would have been my default setting not so very long ago, but I’ve realized in recent weeks that it serves absolutely no purpose other than to make me more stressed.

What’s happened has happened, I can’t change it. All I can do is look forward and consider how I’m going to deal with it. As one of those Facebook friends/LinkedIn connections, a business coach called Croz Crossley, often says when faced with a problem: “Have I done all I can do? Is there anything else I can do?’’. If the answer to those questions is ‘yes’ and ‘no’ respectively, then worrying about it serves no purpose; all you can do is get on with life and face what’s in front of you at the moment.

It wasn’t too long ago that I didn’t ‘get’ that concept and I can’t put my finger on exactly when it did sink in. But now it has and it’s helping me get through at the moment. Maybe I needed to hear it a certain number of times before it got through to my knackered brain. But I’m very glad that it has.

Why the Warrior spirit is so important

I’ve said many times over the last five years that so much of life after stroke is about having the right mindset.

It takes a certain kind of attitude to reset your life and go again after such a massive event. It would be terribly easy to give up trying new things; too easy to sit in your comfort zone and not challenge your new self. It would be terribly easy to let the system walk all over you, especially the benefits system.

It may not surprise you to learn that I’m not like that; The Warrior brand may have started as a mispronunciation of Warrillow, but it wouldn’t have got as far as it has if there wasn’t some kind of fighting spirit behind it.

One of my best friends in the social media world is Graham Todd, ‘The Social Media Cowboy’ who runs https://www.spaghettiagency.co.uk/. One of the first things I learned from Todd (don’t ever call him Graham, by the way) is that if you are going to have a brand for your business, you have to live it; there has to be a story behind it and that story has to be you.

Hence, Todd is never seen in public when on business without his trademark cowboy boots, blue T-shirt (with logo) and cowboy hat. It’s why I am never afraid to talk about my story (hence this blog and The Warrior podcast); it’s why I’m always seen in branded T-shirts; it’s why I had my logo tattooed on my forearm.

As my work in the disability-awareness field grows, I’m becoming increasingly conscious of how important it is that there are people with this positive mindset; people who will fight like warriors for the rights of disabled people, those who can’t or won’t stand up for themselves for whatever reason.

And I’m becoming increasingly aware just how many of us there are. I won’t name anyone, because it wouldn’t be fair, but today alone I have spoken to three people who are working tirelessly (sometimes to the detriment of their own health) to help disabled people through the various minefields we face every day. One of them has even proved able to give me some invaluable advice over a difficult issue.

If one measure of a civilised society is how it treats its’ disabled people, then it’s becoming increasingly clear to me that this one doesn’t do very well at times. Things happen to us for no apparent reason and sometimes with no explanation. When decisions are explained, the explanations are sometimes bizarre and incomprehensible.

There are organisations designed to help us, but they are often staffed by volunteers and have uncertain budgets. So often, it falls to determined individuals with that Warrior spirit, people who are prepared to put reasoned arguments for the case of disabled people and who won’t take no for an answer.

Is that right in a civilised society? You decide.

Why I invested in my business when I couldn't really afford it

I’ve often heard it said about spending money on your business that the best time to invest is when you think you can’t afford to invest.

I heard one of my favourite people, Craig Petty ‘The UK’s No 1 Motivational Magician’ talk about this recently. Craig said: “There are times in the life of a business owner when you can’t afford not to invest.’

I was faced with this dilemma last April. At a business networking event, I got into a conversation with someone who was expounding the benefits for small businesses of doing podcasts. I vaguely knew what podcasts were - despite my advanced age, I do try to keep up with the latest social-media trends - but hadn’t really considered how they could help me get my stroke-awareness message across.

As networking relationships should, one conversation became two, became three, became four and I was nearly convinced. I went to a half-day workshop to learn how to produce and edit my own podcast, an experience which left me realising that I should just concentrate on the journalism side of podcasting (doing interviews and telling compelling stories) and leave the technical stuff to someone who knew what they were talking about.

So, even though I probably couldn’t really afford it at the time, I decided that investing in producing a monthly podcast was essential. I enlisted Pete Morgan, of MonkeyPants Productions as my producer and on May 17 2018, the first episode of The Warrior Podcast was unleashed. Since then, Pete and I have produced one episode a month, in which I have talked about my experiences, we have met other stroke-survivors, talked to medical professionals and those who recognised the dangers of stress just in time.

The effect on my business has been spectacular. Podcasting is a global phenomenon so I am not just reaching those who hear my talks or come across this blog, but people in scores of different countries worldwide. It’s possible to track downloads by country as well as just by pure numbers so I know my message is getting out all over the world.

It’s definitely been worth the investment and here’s why. There are probably 20,000 sales podcasts out there (OK, I picked that number off the top of my head, but it’s definitely a lot and unless you are delivering really good content, you are going to get lost in the crowd); there are less than a handful of podcasts talking about stroke awareness from the viewpoint of a stroke-survivor. So if someone does an internet search anywhere in the world for ‘stroke-awareness’, there’s a pretty good chance of them finding The Warrior Podcast (at thewarriorpodcast.libsyn.com and on iTunes, by the way).

Every episode is about 25 minutes long, so they don’t take too much of your time, while we have statistics showing that people who do find it are listening to about 80% of each episode. In an era when our attention span is very limited, that’s astonishing and a testament to the quality of the content.

I hope I’ve whetted your appetite for The Warrior podcast because this month’s episode is extraordinary. Ever since we started the podcast, I’ve toyed with the idea of asking Mrs Warrior to be interviewed for it. After all, her take on events is unique and she’s the one who came within inches of losing her husband to a stroke.

But she’s always been a very shy and private person, so I haven’t pushed it too hard. Any journalist will tell you that the way to secure the groundbreaking exclusive interview is by gentle persuasion, not by hammering on your subject’s door every day and shoving a microphone up their nose.

And this month, she agreed to speak. Her 25-minute chat with Pete and myself is emotional, brave, searingly honest and very powerful. Please give it a listen at thewarriorpodcast.libsyn.com or on iTunes. When people ask me why I chose to invest in what I do when I couldn’t really afford it, I will point them to this 25-minute interview

Let's talk about sex......

It is something of a cliche to write about sex on Valentine’s Day. But I didn’t spend nearly 30 years in the newspaper trade without learning that the important thing about cliches is that they are often true.

And sex and disability do belong in the same sentence, you know. Stroke-survivors do still want sex, although the libido can rocket or collapse completely, depending on which part of the brain has been affected, while stroke-survivors have been known to take an interest in areas of sexuality which previously they ignored. I know of one lady in her 30’s who became an avid user of sex-clubs after a massive stroke, having previously been in a stable and somewhat ‘vanilla’ relationship.

One of the stroke-survivor charities I support, Different Strokes (differentstrokes.co.uk) is running a campaign throughout February to raise awareness of the issues surrounding sex and stroke-survivors. It’s an important issue - a depressing 42% of stroke-survivors report a negative change in their relationship with their partner after a stroke.

Often, this can be because of the personality changes or the financial stresses which follow a stroke; sometimes it can be because the stroke-survivor is no longer capable of having the kind of sex life that their partner is used to. Not only can libido change drastically, but limbs may no longer manoeuvre themselves into positions that had once been straightforward.

Maybe the man is no longer able to maintain an adequate erection for penetration, either as a direct result of the stroke or because of the effects of medication. Maybe the woman suffers from dryness, or maybe that scourge of the stroke-survivor, fatigue, makes it all too tiring and too much like hard work. If the couple were used to ‘bouncing off the walls’ for hours, the fact that they can no longer do so can be devastating. If the able-bodied partner is not willing to be sympathetic or get creative, it’s all too easy to walk away.

So what to do? Well, communication between a couple is crucial in these circumstances. But sex isn’t easy to talk about, especially if something ‘out of the ordinary’ might be involved. But finding things that do work in changed circumstances and things that you are willing to try is important. And what’s the alternative? Giving up? With more and more ‘younger’ people having strokes, they may not see that as a viable option. Some things might work, some probably won’t. But you won’t find out until you try and life as a strokie is all about experiencing things while you can.

Sexual experiences are just as important, if not more so, than any other.

Standing up for stroke-survivors (and the not-obviously disabled)

If you’ve ever heard me do one of my talks about stroke-awareness, you’ve probably heard me mention the girl I know in London who had a stroke when she was just 14 years old - a stroke that was caused by too many high-energy drinks.

Well, that stroke happened to Jade Driscoll-Batchelor seven years ago this week. Like me, she survived this particular brush with death (like me, she’s had several) and is now a bright, happy, cheerful (most of the time…) young woman who does a lot to make people aware of strokes and why they happen. We share the same taste for body art and loud music, summed up in this by Papa Roach (which Stefan Thomas will probably appreciate). https://g.co/kgs/dXoo6n.

Jade certainly isn’t the youngest person I’ve heard of to suffer a stroke - a business acquaintance of mine lost his three-year-old son to a stroke and the Stroke Association will tell you of instances of babies in the womb suffering strokes - but like me, she is not afraid to talk about what happened and why it happened in an effort to raise awareness of the fact that strokes can happen to anyone of any age at any time. The 100,000 people every year who suffer a stroke in this country (a figure which is climbing as our lifestyles become more pressured) aren’t all 80-year-old pensioners, you know.

Mine was caused by work-stress; Jade’s was due to high-caffeine energy drinks. I know a lady whose stroke was as a result of hormones produced in pregnancy. Strokes can happen for all sorts of reasons to all kinds of people yet the amount of money spent on medical research into the causes of stroke is ridiculously small compared to other conditions. That is partly, of course, because of limited resources, but the more effort that people like Jade and I put into raising awareness of stroke, the better.

Talking of raising awareness, the thorny issue of priority seating for disabled people on public transport crossed my radar again this week. I walk with a stick because my balance is so uncertain, especially in crowded public spaces, so I am easily identifiable as disabled and it is true that people are only too willing to give up seats on buses and trains for me, to move bags off empty seats (something which is a constant issue on public transport anyway), or to usher me into a ‘priority seat’.

But what about those who are not ‘visibly’ disabled? An increasing effort is being made to raise awareness of the fact that ‘not every disability is visible’ particularly with signs on the doors of ‘disabled’ toilets. But what about priority seats on public transport where a person’s disability might not be obvious? This week, I met a lady who has a serious heart condition, although you wouldn’t know it at first sight. She gets easily tired, needs to sit down regularly and standing up for long periods on crowded buses is not a good idea.

Is she disabled? You might think so, I certainly think so; But the young man who refused to move three suitcases from a priority seat on a bus for her this week obviously doesn’t. Nor does the bus-driver who felt it was more than his job was worth to get involved and (excuse the pun) stand up for this lady.

At a time when campaigns for individual rights to do this, that and the other are becoming ever more outlandish, can’t basic human dignity and good manners be important?

An important part of the stroke-awareness armoury

If you listen to the latest episode of The Warrior podcast (I recommend that you do - it’s only just over 20 minutes long and its at thewarriorpodcast.libsyn.com and on iTunes), you’ll hear Pete Morgan and I talking to Sarah Adderley, who is Head of Stroke Support in the Central Zone for the Stroke Association.

It’s a fascinating conversation, even if I say so myself. Sarah explains exactly what the Association does and what it would like to do in the future, reveals some frightening statistics about stroke, talks about how high blood pressure is a major cause of stroke and mentions the My Stroke Guide series of films.

This series of over 200 videos can be found in a specific section of the Stroke Association website at stroke.org.uk. They cover almost every conceivable aspect of life after stroke, from memory and concentration issues to perception problems to difficulties with writing, speaking, decision-making, swallowing food and even with getting travel insurance.

My Stroke Guide is important to me because I played a very small role in its’ creation. As I have previously mentioned here, I have good links with the Stroke Association through my involvement on their research funding panels and my willingness to act as ‘a talking head’ whenever the media want a stroke survivor to tell their story. In fact, I’m sure those links played a part in the Association offering to provide Sarah as an interviewee for The Warrior podcast.

Those links were formed almost as soon as I was able to do anything constructive with my life post-stroke and when the Association had the initial idea for MSG, I volunteered to appear in some of the films. Soon afterwards, a filming team from the Association spent two days at Warrillow Towers filming me (and my dog, Rascal, a long-haired chihuahua who was determined to get in front of the camera!).

At the time, MSG was still an idea in its infancy as the Association looked for 21st-century new-media ways of helping survivors and the range of films was quite limited. It has grown massively since then and the films are now available to survivors, their carers, medical professionals or indeed anyone who wants to know more about life after stroke.

I feature heavily in the film about perception but I also have bit-parts in a few others. Although, never mind me; MSG is a vital tool in helping people understand stroke which is, after all, what i’m all about. I would definitely recommend settling down with a cuppa and watching a few of the films.

High praise, indeed.....

I’ve never been one for shouting about my own achievements. I suppose part of it is natural modesty born out of the way I was brought up, but part of it is also because I see this blog and my podcast and my public speaking as just obvious ways in which I can do what I’ve done for all of my working life - tell stories and inform and educate people in an interesting way.

As someone memorably once put it, ‘if circumstances mean you can no longer be an elephant, then just try to be the best damn zebra you can be.’ That’s what I’m doing and that’s what I’ll continue to do in 2019, health permitting. But I got a message today from someone I greatly admire which really made me think how important these words are in raising awareness of stroke.

Brinton Helliwell was a talented teacher before his stroke 13 years ago (I include the words ‘teacher’ and ‘suffered a stroke’ in the same sentence far too often) and now describes himself as ‘a stroke research activist, inspirational speaker with interest in stroke rehab and travel - and a proud grandad’. I first met Brin when I started attending my local branch of Headway, the charity for brain-injury survivors. I was still trying to process what life after stroke would look like and latched on to Brin. He was interesting, erudite and determined to fight for more research to be done into what causes strokes, how we can prevent them and what can be done to help the 1.2 million stroke survivors in the UK. (Did you know, by the way, that every two seconds, someone in the world will have a stroke?).

He was already heavily involved in stroke research and it was through him that I was steered towards contacting the Stroke Association. I quickly agreed to become one of their contacts for media people looking to do stroke-related stories and have appeared in some of their stroke-information films. I now work alongside doctors and professors on some of their panels which allocate grant funding; Brin and I are amongst a group of stroke-survivors on those panels who can ensure that the voice of the people on the sharp end is heard. As one of Britain’s leading academic stroke-researchers once told me: “We can talk all day about ideas, but we haven’t the slightest idea what it’s like to live daily with stroke. You have and it’s so incredibly important that your voice is heard and listened to.’

Brin’s involvement in Headway gradually declined as he became more and more busy with stroke-research work (don’t forget, stroke-survivors can’t say ‘yes’ to everything - in too many cases, saying ‘yes’ to everything is what put us where are are now) but we have stayed in touch and are connected on social media. We also see each other a few times a year at meetings at Stroke House, the Stroke Association’s headquarters in London.

His name was mentioned at a Headway meeting last week, which prompted me to message him and see if he was aware of this blog and my Warrior podcast (thewarriorpodcast.libsyn.com); not only was he aware of them, he told me he was a regular follower of the podcast and added: “I feel so pleased that you have managed to channel your skills into something that is so positive and a powerful message for life after stroke for other stroke survivors.”

Reader, that is exactly why I do this. Life immediately after stroke can be incredibly lonely and disorientating. It is so easy to think that you are the first person this has ever happened to (In fact, there are 100,000 strokes a year in the UK, a figure which is rising as our lifestyles become more pressured) and if these words help one person feel that little bit less lonely, to feel that someone else knows what it’s like and can offer a bit of help, I’m honoured and proud.

A bloody nuisance.....

I talk a lot in these posts about the zillion different ways in which stroke affects daily life. I usually focus on the trivial, largely to lighten the mood but also to emphasise that stroke even affects my ability to do something as mundane as take the dog for a walk; if he spots a squirrel and goes off in pursuit, because my balance is so unsure, he’s liable to drag me with him, pull me to the ground and have me bleeding for hours thanks to my blood-thinning medication. And Rascal isn’t a 50kg Great Dane, but a 5kg long-haired Chihuahua.

But this month, things got serious, hence my recent absence from this blog. Just over a month ago, I mentioned blood tests and an abnormally high blood pressure reading. It appeared to be an anomaly, blamed largely on ‘white-coat syndrome - an understandable tendency to get stressed inside hospitals and surgeries, particularly if you aren’t good around needles, which I’m not.

Then, one morning, I awoke to a blood-covered bedsheet. I thought it was a one-off; after all, lots of people get the occasional serious nosebleed, don’t they? Until it happened again, two days later. This time, there was so much blood around that Mrs Warrior rang 111 at 5am and called the paramedics. As I joked in a rare light moment a few days later, there was so much blood that it looked as if I’d murdered someone.

As I said, this was serious. So the following morning, I was outside my GP’s surgery in zero-degree temperatures at 8am for an emergency appointment. That established that I have weak blood vessels, a side-effect of my blood-thinning medication (a medication I’ve been taking for five years, by the way. Did you know side-effects could suddenly flare up like this? I didn’t).

He referred me to the ear, nose and throat clinic at my local hospital and I’ve spent two long and challenging afternoons there in recent weeks, all the while dealing with two or three major nosebleeds a day (“hold your head over the bathroom sink, squeeze your nose tight and give it 10-15 minutes to stop” said the paramedic). It’s a good job that we have washable wooden flooring, not carpet, at Warrillow Towers….

This week, the problem was finally traced to a bulging blood vessel in my nose, which was closed off (‘cauterised’ is the medical term) in a process that was a lot less painful than any of the thousands of blood tests I’ve had over the past five decades. It seems to have solved the problem and I must thank everyone involved, from my GP who saw me within a few hours, to the clerical people, phlebotomists and doctors - even the taxi drivers to whom I have given far too much money this month.

I tell this story because sometimes, I make light of my fate in an attempt to deal with it. I can walk, I can talk (which plenty of stroke-survivors can’t) so what have I got to moan about?

Well, waking up at 5am in blood-covered bedsheets made me realise that sometimes, I have quite a bit to moan about. When I give talks about stroke-awareness, I always end by saying that I do this because I don’t want anyone to go through what stroke-survivors face every day. If I have to scare people, so be it. But I do hope this post hasn’t scared you too much….