stroke-awareness

A new, exciting, chapter for The Warrior

Over the past few months, I have been trying to find ways of spreading my stroke-awareness message which will do the job, but won't require me to put too much physical and mental strain upon myself.

I'm aware that I am often accused (sometimes not entirely seriously and always by people who have my goodwill at heart) of doing too much; of travelling too often and too far to give talks, to be involved in Stroke Association activities, to help out people. It's undoubtedly true that, at times, tiredness does become an issue. A close friend told me this week (and she isn't the first to say this) that I'm doing all this with abnormally-reduced brain capacity and that factor should be front and centre of every decision I take.

Therefore, the more things I can do without actually leaving the cosy confines of Warrillow Towers, the better. To that end, I currently have my IT expert working on how to retrieve 14,000 words of an unfinished book, plus dozens of old blog posts, from a long-deceased Apple Mac computer so that I can reconfigure them into new content.

I expect an answer from him next week about that; but I have also been talking to a networking friend and highly-experienced radio broadcaster called Pete Morgan, of MonkeyPants Productions, about taking an exciting leap into the 21st century; about using my journalistic skills learnt over the past 30 years, plus the public-speaking skills I have developed more recently, to produce a podcast. ("What's a podcast?" said Mrs Warrior).

And today I can unveil the first episode of what will be a monthly series of 'The Warrior Podcast." The first episode sets the scene by telling the story of how I came to be doing this; I hope that subsequent episodes will give a full flavour of life as a strokie, educate people about how to avoid stress and reduce the risk of stroke and cover the important area of making sure you are prepared financially if the worst happens.

You can hear the first episode at http://traffic.libsyn.com/thewarriorpodcast/1_-_Welcome_To_The_Warrior_Podcast.mp3. The Warrior podcast has been accepted by iTunes, where it should be available shortly; it should also be available on other podcast platforms soon (get me, sounding as if I know what I'm talking about, lol). There is also a podcast page at http://thewarriorpodcast.libsyn.com. Please have a look and a listen and feel free to share it across your social media.

I'm excited about this because podcasting is, obviously, a worldwide phenomenon. I'm not just talking to a few dozen people at a talk, or to those who discover my blog via mentions on Facebook, Twitter and LinkedIn; because it's on the iTunes platform, it will be much more visible - and as far as I know, it will be the only podcast out there which is talking about stroke-awareness.

At the end of a week when I was contacted concerning yet another friend who has had a stroke (that's three this month), the Warrior podcast is a way of making people aware of an important subject without putting myself at risk of damaging my health - every episode can be recorded in my front room.

I'm excited about it; I hope people find it useful. I'll always be looking for topics to discuss so if you have any stroke-related questions, I'll try to answer them on future episodes.

Podcasting, here we come! 

A good end to a hard week

It was a rough old start to last week at Warrillow Towers, which is partly why this blog is being written 48 hours later than usual.

From Saturday to Monday of the week which has just passed, I was crushed by stroke fatigue. The warning lights had started flashing on the Friday evening, when a good friend (one of those few who won't beat about the bush if they feel I need my backside kicking) told me I looked awful.

He said I looked tired and washed out. He was correct, as he always is. He asked me what I planned to do over the weekend and when I said 'nothing', he replied: "Good, because you need a rest.'' And as it always does with stroke fatigue, my body decided it needed a rest and I had no choice but to follow. 

Much to Mrs Warrior's chagrin (because it was a non-football Saturday), I spent from 1pm-5pm on Saturday in bed. I got up later than normal on Sunday and repeated Saturday's afternoon nap before ensuring I got an early night. I awoke at about 10am on Monday and by the time I met a friend for beers and conversation on Monday afternoon, I just about felt something close to normal. 

The best part of three days in bed feeling exhausted and unable to function. That's stroke fatigue for you. Looking back, I've probably escaped the worst of it in the last four years. Rarely does it hit me that hard. Or maybe it does and stupidly, I try to fight through it and make it worse. But this was one of the worst I've ever had and at my age, with my positive 'do-stuff' outlook, it doesn't feel nice.

But maybe I'm finally learning to live with one of the most serious of the many ways in which stroke affects your life. I rested on Tuesday and Wednesday and by Thursday, was ready to go again.

A networking meeting in Walsall on Thursday evening was productive and I even felt well enough on Friday that Mrs Warrior and I ventured to north Nottinghamshire to support a good networking friend (and fellow strokie) Maggy Jackson as she relaunched her therapy business. (www.thinkdifferently.org.uk). It was a long, cold day but I met plenty of potentially useful people, won a couple of very handy raffle prizes and even ended up sitting next to a lady from the Stroke Association on the train journey home (yes, of course I gave her my business card!).

What the week emphasised yet again (and this time, I might actually listen....) is that my life is not and never will be what it was. This is something 'new' strokies find really hard to deal with; I've been involved in a conversation this week with a lady who said: "I want to start feeling normal again (whatever normal may now be)....

Well, 'normal' is not what it used to be. Each stroke survivor is different, but for me, 'normal' now includes those bouts of stroke fatigue, occasional difficulty swallowing, inability to cope with crowds and noise, outbursts of anger (at Mrs Warrior and others), balance difficulties, incontinence problems..... The list sometimes seems endless. But as I said to a lady at Friday's event, I'd take all of that as part of being alive over not being alive if the bus had hit me.

If that means I sometimes seem to spend half my life asleep or in a daze, that'll do for me.

Celebrating life - very quietly........

It's always been difficult for Mrs Warrior to understand my love of hard (and inevitably loud) rock music and my penchant for standing in a football stadium and shouting for 90 minutes, given that I dislike loud noise.

I watch TV with the volume down as low as is possible, I hate loud pubs and if I am in a networking meeting where 15 conversations are taking place at once, I will be as far away from the centre of the noise as I can.

This was the case to a degree before my stroke, but obviously the brain damage has worsened my dislike of what my neuropsychologist calls "over-stimulated atmospheres.' I can't explain the rock music/football thing other than to come up with the lame-sounding excuse that "yes, but that's different,'' but it is undoubtedly true that peace and quiet suits me better than hubbub and bustle.

The fact that my brain always seems to be churning over doesn't help. Plenty of friends have told me that I should learn to meditate, but I've always found that difficult because, rather than concentrating on my breathing, my brain always seems to want to be pulled towards another thought.

Then, I met a lady at a networking meeting a few weeks ago, where I was due to speak. Heather Duncan told me that she had been in the audience at one of my previous talks and was keen to hear me again. We spoke at length after my talk and she asked if I had ever tried floatation therapy. I said I had a vague recollection of having heard of it, but hadn't tried it.  

She was adamant I should try it and she put me in touch with Mark Smethurst, who owns a company called Time To Float, which is based in Stoke and Stafford. I talked with Mark, he explained the concept (and confirmed that floatation therapy should be done nude, thus fitting in with my drive to promote nude-wellness activities) and I booked a session for myself and Mrs Warrior, with the intention of mentioning it in this blog and doing a feature for H&E, the naturist magazine for which I write a column.

The session took place on Monday of this week. Neither of us really knew what to expect, but both of us were (very quietly!) blown away by the experience. I'll point you towards my Disability Matters column in the February edition of H&E for a full rundown (it's in the shops in mid-January) but I will say that I have rarely been so aware of my breathing and my heart beating. At one stage, I sneezed and almost frightened myself to death!

I wholeheartedly recommend floatation therapy and we will both be doing it regularly from now when we need to de-stress (which is often).

The other highlight of my week was the celebration last Saturday (December 16) of the fourth anniversary of my stroke. I would like to thank the hundreds of people who sent me their good wishes and told me how inspirational they have found my journey. Stroke-survivors are rarely people to look back with regret on anniversaries like this; rather, we celebrate the fact that we are still alive to mark the occasion and look forward to another day.

Mrs Warrior and I certainly did that; we put on our finery and went out for a posh meal, then continued the celebrations into the early hours; a number of my American strokie friends may have been surprised to get slightly-incoherent Facebook messages from me on a Saturday evening, their time!

Yes, I felt slightly the worse for wear on the Sunday and yes, the celebrations have to be tempered slightly because of the amount of medication I take, but I kept thinking back to the evening of December 16 2013. Then, I was lying in a hospital bed, completely paralysed down one side, feeling as if I had been hit by a truck (which I nearly had, of course) and wanting to do nothing but sleep as soon as possible for as long as possible.

From there to today has been an extraordinary journey. On that journey, I've made new friends, done things I would never have contemplated, made a lot of people think about and change their lifestyle (a fact of which I was reminded again this week). If that isn't cause for celebrating life, what is? 

A week in the life - and an embarrassing incident

One of the first things my neuropsychologist told me when we met in the autumn of 2014, some nine months after my stroke, was that I would have to learn to rest properly. I needed to learn to rest my poorly brain and also to acknowledge that stroke fatigue meant I would get much more physically tired, much more quickly, than before.

That meant no more than three hours of 'brainwork' a day, sleeping for at least an hour each afternoon with no exceptions and giving myself an entire day's rest after a busy day.

For most of the last three years, I'm afraid I completely ignored his good advice.

I didn't do so out of malice, but rather out of a slightly foolish determination to spread my message as wide as possible and also to try to prove that mentally, I hadn't really changed - even though it was blindingly obvious that I had.

So, I would 'Carry On Regardless' as The Beautful South once said - and find myself falling asleep on the lounge sofa and missing TV programmes, falling asleep on trains and having some very narrow escapes from missing my station, falling asleep over dinner and getting a telling-off from Mrs Warrior.

Some six months ago, though, something clicked and I started consciously taking myself up to bed every afternoon; not for long enough to fall into a deep sleep which would leave me awake in the early hours, but just enough to recharge the brain - neuroscientists will tell you that an hour or so is enough.

And it worked. I fell asleep as soon as my head hit the pillow every afternoon, rather than behaving like a bear with a sore head each evening because I was needlessly tired.

Then, as I detailed here last week, I began to take rest days after busy ones. This week has been a perfect example: Monday - rest; Tuesday - busy writing and researching a magazine column in order to get it done before the copy deadline; Wednesday - rest; Thursday - up at 6am for the first of two networking events which were highly productive but left me worn down by 6pm; Today (Friday) - mopping up a host of little jobs before the weekend, then sitting down to write this blog.

And the new regime is working. I am no longer falling asleep in random places at random times and feeling rubbish afterwards.

But sometimes, events (and probably my stubbornness) get the better of me, still. One of yesterday's events featured a talk by an expert on work-stress; we'd never met and the opportunity to make a worthwhile connection was not to be turned down - even though I'd been up at 6am and had a busy morning.

The event started at 1pm (I was there early, as always) and the guest speaker was on at 2pm. I felt OK, honestly! I met some interesting people, made some good connections, spoke about who I am and what I do. But as 2pm approached and the speaker stood up, I started to feel drowsy. Maybe it was the winter sun making the room warm (yeah, right....); maybe it was because my body was getting into 'afternoon sleep' mode. Whatever it was, I fell asleep. In the front row. Right in front of the speaker and her audience of 50-plus people. Embarrassed? No, of course I wasn't.

I awoke just as she was wrapping up her talk. When she had finished, I dashed over and asked if she had noticed. Her reply? "Well, at least you didn't snore....". She obviously understood my predicament and we laughed about it later. What it shows, of course, is how quickly stroke-fatigue can strike. 

One day, perhaps I'll learn.