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….

A tribute from one Warrior to another

Regular followers of this blog will know that I’m extremely active in a national business networking organisation called 4Networking.

Like plenty of similar organisations, it has an incentive scheme to encourage members to bring along new faces - in this case, the incentive is free days added to your paid-for membership. It’s worked for me and I reckon that I’ve accrued about nine free months in the seven years I’ve been a member - sounds pretty good to me.

Earlier this year, I had an email from 4Networking telling me that I had been given free days for introducing someone who had just joined. It didn’t say who the new member was, or when I had introduced them. But enquiries on social media uncovered the fact that it was Mike Gardner, a time-management expert who I had met when I was just another freelance journalist, rather than a stroke-awareness activist,

Mike had been to a meeting with me, decided not to join 4N, then changed his mind and joined three years later, earning me my free days. Every time we met after that, Mike and I had a laugh about it.

I first met Mike several years ago in my pre-stroke life at a series of networking meetings around the Midlands but it was only after he joined 4N that I really got to know him; got to know his history, got to know what a great person he was and got to know how much we had in common. A former RAF man (OK, we didn’t have that in common), Mike had survived heart attacks and strokes to become a determined and talented long-distance runner.

And his was the only presentation at a 4N meeting that I’ve ever seen (apart from mine) that made me cry. Entitled
‘S@@@, I never got my to-do list done’, it was about how nobody ever says that on their deathbed and how important it is to concentrate on the things that matter, like friends, family and making memories, rather than worrying about work.

It was, of course, frighteningly close to what I bang on about and I remember sitting at a 4N breakfast a few months ago in tears as Mike told his story.

Mike Gardner passed away last Sunday after suffering a heart-attack while out running. The news came as a terrible shock to his vast number of friends and is yet another example of the importance of living life to the full while you still have the opportunity - a mantra that Mike definitely held dear.

My social-media feeds this week have been packed with hundreds of generous tributes to a lovely man taken from us far too quickly. Mike’s life-experiences made him appreciate, as I do, that life is a very delicate flower that can be stolen away in a second. It’s something I talk about a lot, of course. Every time I say it from now on (including when I give the keynote presentation at the Coffee and Natter business networking event in Burton-on-Trent next Thursday, an afternoon which I suspect Mike would have attended), I’ll think of him.

Rest in Peace, Mike Gardner.

Medical matters

I mentioned here a couple of weeks ago that I was awaiting the results of various medical checks which I had asked for as a result of not feeling at my best in recent weeks.

As someone who believes in complete honesty with regard to such things, it’s only fair that I bring you up to date. I went for my flu jab and blood test, but also asked for my blood pressure to be checked as it somehow hadn’t felt right lately. Various pains and headaches had got me thinking and as I’ve mentioned many times, my knackered brain is very prone to thinking the worst in such scenarios.

So I had my blood pressure checked and it was ‘significantly higher’ in the nurse’s words, than when it was checked at my annual stroke review in May. Cue panic (from me, not her). She arranged to have it taken again by my GP four days later while I (or rather, my strokie brain) contemplated a life on blood-pressure tablets, having to give up alcohol and/or caffeine altogether and various other ‘restrictions’ on my already tightly-controlled life.

Now, there is a history of high blood-pressure in my family and having had a stroke, I suppose I am more susceptible. But various unpleasant scenarios unfurled in my brain, until I consulted various friends and found out that a lot more people than you would think are on BP tablets, while my ‘significantly higher’ reading was actually nowhere near as high as it could have been.

And, of course, when it was checked again, it was back to what my doctor considers normal. Panic over, no BP tablets to add to my daily cocktail yet. But there was one significant outcome. The blood test came back completely normal except that my Vitamin D levels are lower than they should be.

My ideal solution, of course, would be a nice, long, naturist holiday to somewhere with plenty of sun. But the finances at Warrillow Towers don’t allow that, so we’ll have to find another solution. Consequently, as from Monday, a Vitamin D tablet will join that daily cocktail. That makes it 13 a day, but if they are doing their job and keeping me alive and relatively healthy, I can’t complain.

The low Vitamin D levels could explain my recent lethargy - needing sleep in the afternoon as well as at least nine hours every night. Stroke-fatigue is undoubtedly partly responsible but constant lethargy makes you feel ill in other ways. Let’s hope one source of stress can be banished.

Scare people? Yes, of course I do

Having a National Day for this, that and the other seems to me to be nothing more than a great way to keep PR people in business. But when someone who has no interest in PR but is actually a former schoolteacher-turned-talented-IT-person tells me that today is National Stress Awareness Day, it looks like an open goal that even I can’t miss. So here goes….

Anyone who has followed my story knows that my stroke, in December 2013, was caused by stress. I was a self-employed journalist editing a national magazine, then I lost 90 per cent of my income in one phone call when my annual contract to edit that magazine wasn’t renewed, through no fault of my own.

It was a month before Christmas. How was I going to pay the bills? How was I going to pay the mortgage? What was I going to tell my wife? For the previous four years, I had edited that magazine pretty much single-handed, with little or no help other than from a graphic designer.

I worked from home so, just because I could, I’d write emails at 7am or 11pm. I’d write articles at 7am or 11pm. Work had merged seamlessly into home life. But was I stressed? Was I f@@@. No, of course I wasn’t stressed. I could cope. Until I couldn’t. In the last six months, things turned south very quickly and I was under more and more pressure.

But could I see it? No, of course I couldn’t. We never do. So that when the explosion came, when that phone call came, I wasn’t prepared. And my brain exploded. Literally. An artery burst in the back of my brain, causing permanent brain damage at the age of 49.

That’s what stress can do. Sometimes it causes minor, but regular, viral infections; if you listen to James Perryman talking on my podcast ‘The Warrior’ at thewarriorpodcast.libsyn.com and on iTunes, you’ll hear how his work-related stress caused serious psoriasis. Mine didn’t do any of that. Mine just built and built and built until one Monday afternoon, as I was crossing a busy road, that artery burst.

My legs gave way, the whole of my left side was paralysed for a fortnight, I was left with memory loss, cognitive issues, massive ongoing fatigue, I had to learn how to walk and talk and use my left side all over again. I had to develop a whole new series of strategies just to cope with getting through every day.

I do a lot of public speaking about stroke-awareness. When I do, I always say that I scare people. And I do, because people need scaring about stress and what it can do. ‘‘It’ll never happen to me’’. Well, it happened to me.

If you feel stressed, the first thing to do is recognise it and talk about it. Then coping strategies can be put in place. Ignoring it, not being aware of it, is a good way to kill yourself.

'I'm not lazy, I'm a Warrior'

“I fight for my health every day in ways most people don’t understand. I’m not lazy, I’m a Warrior.”

If you’ve met me in person, either to have a conversation or at one of my stroke-awareness talks, you might recognise those words. They are the basis of the tattoo which adorns my left forearm and they are on the T-shirts I wear when I give my talks.

A young friend of mine found them (she knows who she is) and they sum up perfectly what it means to live as a stroke-survivor. Yes, there are countless physical manifestations but the mental strain of daily life can sometimes be the toughest part and that has certainly been the case this week for me.

I mentioned here seven days ago that I was awaiting two key medical appointments. Well, yesterday was the day (you become accustomed to going from hospital clinic to GP surgery to blood test in the space of a few hours) and although one question was answered, some key ones still remain.

My epilepsy consultant’s view was, essentially, if it ain’t broke, don’t fix it. In the past, he has toyed with changing my cocktail of medicines but is now minded to leave well alone. Changing or withdrawing treatment could have consequences and as I haven’t had a fit since February 2010, that wouldn’t be sensible. So, I’ll keep taking the tablets and see him in 12 months.

Having spent much of the morning at hospital, I came home for a brief lunch-break before heading to my local GP. I have become increasingly concerned about my hearing in recent weeks, so a test is now on the horizon but the main reason for my visit was my worry about increasing bouts of lethargy.

Stroke fatigue is well-known, of course. I’ve referred to it here many times, told how it can floor you for days on end and discussed how it can sometimes make getting out of bed a challenge. But I’ve never suffered fatigue as badly as I have in the past few weeks. The unknowing could mistake that lethargy and fatigue for laziness, hence the apt nature of the words with which I began this post.

My increasing lethargy might simply be worsening stroke fatigue and if that’s the case, there probably isn’t a great deal I can do about it. After all, as I have said here previously, my brain’s had a good kicking and sometimes needs rest as a result.

But it could be due to a host of other things, as well. I hope and suspect that it isn’t but as I spend a lot of my time these days telling others to get themselves checked out and be prepared, it is only sensible to do so myself. An extensive blood test is now booked for Monday November 5. We’ll see what it says but in the meantime, I won’t be doing too much.

That’s not laziness, it’s simply looking after myself. After all, my stroke-damaged brain is apt to think the worst outcome of any scenario these days, so getting concrete evidence of positive outcomes is essential to my mental well-being.

That sense of thinking the worst about everything is hard to explain, but I discuss it in the latest edition of my podcast ‘The Warrior.’ You can find it on iTunes or at http://thewarriorpodcast.libsyn.com. As you’ll hear if you give it a listen, any suggestion that my life is now stress-free because I am aware of what stress can do is completely wrong!

A big decision - at last

‘You’re doing an awful lot of good with your stroke-awareness work, but you’re no good to anyone six feet under.’

That’s the blunt warning I’ve had from several close friends (I’m thinking of two, in particular) over the last few months. They worry about me dashing all over the country doing talks, they worry about me getting up at stupid o’clock too often for breakfast meetings, they worry about me not getting enough rest and sleep and not remembering that, as one of them told me a while ago, ‘you’re medically retired for a reason.’

And by and large, I’ve ignored them and, by definition, ignored the message I am so passionate about delivering to others. Like too many of the people I speak to about stroke-awareness and the dangers of stress, I’ve shrugged off the warnings because I felt OK in myself.

Recently, however, I’ve started to feel far from OK in myself. I’ve begun to feel increasingly fractious (especially in the mornings), stressed, tired and worn. And if I can’t see that those are warning signs, how can I expect other people to see the warning signs in themselves?

More importantly and scarily, however, I’ve started to get headaches. Not the searingly painful ‘atom bomb going off in your head’ experience I suffered when an artery burst in my brain and changed my life forever, but annoyingly noticeable headaches that get worse when I’m tired. Again, it’s an obvious sign. And when I saw something on social media this week with the daughter of a stroke-survivor commenting that: “I have to remember all the time that my dad’s brain is having to work ten times harder than mine just to have a conversation,’’ it flicked a switch for me.

This isn’t the place to go into detail, but things have been going on recently which have caused stress that I don’t need and could easily walk away from. The fact that I haven’t walked away has been, I accept, entirely down to my desire to help others. But, as they say in those flight-safety films, ‘‘You must inflate your own life-jacket first.’’ In other words, you can’t help anyone if you’re dead before they are.

So on Monday of this week, I did something I probably should have done weeks ago. I sent a WhatsApp message resigning from a position I have held (and held dear) for nearly three years. I may go back if several sets of circumstances change, but when an oft-quoted statistic about there being a 30% chance of me having another, possibly fatal, stroke starts becoming increasingly prominent in my thoughts, it’s time to act.

For the last 48 hours, I have taken plenty of rest and done pretty much nothing other than watch TV and write this blog - and I feel better for it. I intend to continue that theme over the weekend and into next week. I have appointments with my GP and my epilepsy consultant next Thursday which hopefully will start to uncover any problems and I have asked my neuropsychologist’s secretary to organise an appointment, because I cannot continue down the road I’ve been on. Mindfulness, meditation, rest and recovery have to be my watchwords - not stress and tension and anxiety and pressure.

I missed the signs last time and came within a few inches of being killed by my ignorance. I’m not going any further down that path again.

Entering the lions' den - and taming the lion

‘Never work with animals or children’ goes the old showbiz saying. ‘Be wary of school/college audiences’ seems to be the equivalent among public speakers.

For several months, I’ve been working with the staff of a local college, with the intention of delivering a series of talks about my story as part of their life-awareness programme. As one of the staff told me: “Kids of this age often think they are invincible. The idea of these talks is to show them what life is really like.’’ I have plenty of experience of the realities of life, obviously.

I mentioned the upcoming talk in a business group on Facebook and someone observed sagely: “Student audiences are a tough crowd for speakers. Half won’t turn up, the other half are only there to miss lessons.’’ Well, at least it would be good practice for me……

In the end, I had an audience of 25-30 (a 50-50 mix of boys and girls) on Friday of last week and even though I say so myself, they looked spellbound. It’s entirely possible, of course, that I scared them into silence but the classroom was full, you could have heard a pin drop throughout my 45-minute talk - more than twice as long as I normally speak for - and they even commented in a good way on my bling-y walking stick which I mentioned here recently!

There were sensible questions asked at the end of the session, always a sign of a successful talk, while I have been invited back at least once every half-term for the rest of this academic year. And as is often said, who knows where this will lead now that I have my foot in the door.

On Tuesday, I was back on more familiar territory speaking to a business networking group. It’s all experience, it’s all helping to get the message across (as is this blog and my podcast ‘The Warrior’ which continues to produce amazing listenership figures) and as I told my student audience, if just one of them went home and told their parents and just one person or one family was moved to become more aware of stroke by hearing me speak, I’ll have achieved my aim.

Walking on sunshine (or maybe not)

Last week’s post, titled ‘Is that person really disabled?’ obviously touched a nerve. It got more reaction on social media, more comments on this blog itself, than anything I’ve written for a long time.

A lot of the reaction came from people who don’t necessarily consider themselves disabled, but merely ‘inconvenienced’ by their various problems which mean they sometimes have to use a disabled parking space or a disabled toilet.

Well, I would say that although I don’t look disabled for most of the time, I’m more than inconvenienced, specifically because the damage caused by my stroke to my cerebellum means my balance and co-ordination is less than good at times and downright bad at others.

Walking in a straight line is often difficult, sometimes impossible (particularly when I’m tired, which is often) and I have been known to fall over in the street, at 10am and even when using my walking stick. And this week, I lost my walking stick.

Well, that isn’t exactly true. I didn’t lose it, I left it somewhere - in the pub where I’d been attending a business networking breakfast, to be exact. But I didn’t realise I had left it there until I got home, the pub was six miles away, Mrs Warrior needed the car……

I texted various members of the team that runs the group to see if anyone had picked it up (they hadn’t) but the group has a good relationship with the pub’s owner and I wouldn’t be surprised if he hands it to me when we meet there next week.

What’s more, there is a shop just five minutes’ walk from Warrillow Towers which sells walking sticks; not NHS-style ones in metallic grey but sticks in a myriad of colours and styles. I could have pink with flowers (no thanks….), bright blue, red, purple stripes (one that looked like a stick of 1950s Blackpool rock), brown, green…..

I could even have ones with wrist-straps attached, so that I wouldn’t leave them in pubs.

In the end, I opted for a black one with a design of silver fern leaves wrapped around it; I haven’t yet checked to see if it glows in the dark (I’ll wait until winter nights for that), but it does look very smart with a black wooden handle and a bronze top.

It cost slightly less than I expected, although when you are on a fixed income, unnecessary expenditure is generally best avoided. But the fact is that I now can’t do without a walking stick, even for the couple of hours it took to replace the lost item. I’d rather not be using a walking stick at the age of 54, but if the alternative is broken glasses, or broken skin or broken bones thanks to a fall in the street, I have no choice.

And now I have my first idea for a Christmas present. Does anyone want to buy me one of those contraptions which folds up your stick when you’re not using it?