Life as a strokie (and life generally, in fact) is all about keeping things in perspective. I might be having a bad day or a bad week but there is always someone worse off. It's why I don't get too excited about the highs or too down about the lows.
Indeed, one thing the last 15 months has taught me is that there's not much in life which is worth getting overly stressed about.
Hence, when my local hospital rang up this week and demanded my presence at less than three hours' notice for a scan which should have been done months ago, I was mildly annoyed, but not much more.
When our weekend shopping trip proved even more stressful than usual in terms of crowds of people and noisy children, I was wound up for a couple of hours but the feeling soon passed.
When I woke up one morning feeling tired and stressed, I simply cancelled a couple of things that day and resolved to give myself the rest I obviously needed.
And then, one afternoon this week, I saw something posted on an internet group for stroke-survivors. "Not dealing with this stroke malarkey at all well," it said. "So depressed, never felt this bad." As many of us do, I immediately messaged the person involved, firstly to check they weren't about to do anything really silly, then to at least say 'Hello."
We ended up chatting for the best part of a couple of hours, during which it came to light that this person has not only suffered a stroke, but also has Multiple Sclerosis, heart disease and kidney disease. Which changed my slightly gloomy mood very quickly.
So when you go about your daily life this week and you're about to shout at the dustman for not emptying the bin, the kids for not putting their toys away, the road-rage driver who just cut you up or even your other half for leaving toothpaste in the bathroom sink, just take a moment to think of my new friend making the best of life in unbelievably trying circumstances - and get a little perspective.
Wednesday 29 April 2015
Wednesday 22 April 2015
Being a Warrior
So why 'The Warrior"? I could have titled this blog "Stories of a stroke-survivor," for instance. It's certainly eye-catching, but I thought that there must be plenty of those around the blogosphere.
Then I remembered the nickname which I started to pick up around the business-networking circuit pre-stroke. "Warrior' may well have been a deliberate mispronunciation of Warrillow, but it certainly became a lot more appropriate after December 16 2013. I'm not sure which of my good friends Debbie Huxton or Paul Rimmer used it first (in truth, I'm not sure that they are, either....) but does it really matter?
After my stroke, of course, "The Warrior' became synonymous with my fight to get my life and my mobility back. It became a nickname I used wherever I did talks about my experience and the fact that it sort-of sounds like Warrillow helped.
Then, I joined the Different Strokes Facebook group for stroke-survivors and their carers (The FB group is a closed group, but I recommend their website at www.differentstrokes.co.uk) and 'met' 18-year-old Jade Driscoll-Batchelor from London, who also called herself "The Warrior". Jade has had far worse things happen in her young life than a stroke, which it's not my place to discuss here, but we immediately hit it off and the 'Warrior' nickname cemented our friendship.
Now, I'm not going to be so arrogant as to say that Jade and I are the only two 'Warriors" in the stroke-survivor world, because everyone who survives and fights a stroke or any other life-changing illness is a warrior in my eyes, but I know the 'Warrior' attitude helps both of us (and everyone else, of course) get through the bad days which are an inevitable part of stroke-rehab. It also helps us take on the good days and make the best of them.
So the 'Warrior' attitude seems perfect for this blog. It's why my Facebook profile pic features a Mitsubishi Warrior truck (you don't want to see my face, honestly....) and every once in a while, something happens to remind me how important it is to retain that attitude.
One of those things came this week, when Jade sent me a link to a song by the American heavy metal band Papa Roach. Now being the wrong side of 50 doesn't stop me liking tattoos and heavy metal, as far as I'm concerned. As I've said here before, you're as old as you think you are and only on my really bad days do I feel the wrong side of 50. One of the things which Jade and I share is that love of tattoos and heavy metal, so she was sure I'd appreciate Papa Roach and this song. She's right. Every time I've played it this week, which has been a lot, I've thought of all the warriors I know who fight disability every day of their lives.
Here's the link: https://www.youtube.com/watch?v=Qot3Ubz16Jo
Then I remembered the nickname which I started to pick up around the business-networking circuit pre-stroke. "Warrior' may well have been a deliberate mispronunciation of Warrillow, but it certainly became a lot more appropriate after December 16 2013. I'm not sure which of my good friends Debbie Huxton or Paul Rimmer used it first (in truth, I'm not sure that they are, either....) but does it really matter?
After my stroke, of course, "The Warrior' became synonymous with my fight to get my life and my mobility back. It became a nickname I used wherever I did talks about my experience and the fact that it sort-of sounds like Warrillow helped.
Then, I joined the Different Strokes Facebook group for stroke-survivors and their carers (The FB group is a closed group, but I recommend their website at www.differentstrokes.co.uk) and 'met' 18-year-old Jade Driscoll-Batchelor from London, who also called herself "The Warrior". Jade has had far worse things happen in her young life than a stroke, which it's not my place to discuss here, but we immediately hit it off and the 'Warrior' nickname cemented our friendship.
Now, I'm not going to be so arrogant as to say that Jade and I are the only two 'Warriors" in the stroke-survivor world, because everyone who survives and fights a stroke or any other life-changing illness is a warrior in my eyes, but I know the 'Warrior' attitude helps both of us (and everyone else, of course) get through the bad days which are an inevitable part of stroke-rehab. It also helps us take on the good days and make the best of them.
So the 'Warrior' attitude seems perfect for this blog. It's why my Facebook profile pic features a Mitsubishi Warrior truck (you don't want to see my face, honestly....) and every once in a while, something happens to remind me how important it is to retain that attitude.
One of those things came this week, when Jade sent me a link to a song by the American heavy metal band Papa Roach. Now being the wrong side of 50 doesn't stop me liking tattoos and heavy metal, as far as I'm concerned. As I've said here before, you're as old as you think you are and only on my really bad days do I feel the wrong side of 50. One of the things which Jade and I share is that love of tattoos and heavy metal, so she was sure I'd appreciate Papa Roach and this song. She's right. Every time I've played it this week, which has been a lot, I've thought of all the warriors I know who fight disability every day of their lives.
Here's the link: https://www.youtube.com/watch?v=Qot3Ubz16Jo
Wednesday 15 April 2015
The 'delights' of a frustrating week
I might sometimes give the impression here that this stroke-rehab business is becoming easy. I'm walking taller and straighter, I'm getting about more generally; as you saw last week, I'm even running, in a fashion.
And then I have weeks like this one. Weeks that remind me about the joys of being on blood-thinning tablets in our glorious British weather; how the tablets make your blood feel so cold that all you want to do is hide under a warm duvet.
How my brain has been damaged in a way that makes it difficult to remember why I'm going into town after I've taken two steps out of the front door of Warrillow Towers. The frustration of getting home from town and remembering that you forgot what you went in for AGAIN.
How I really must remember to write down the day's activities on the whiteboard in the kitchen or I WILL forget something important. (Such as the dental appointment 15 minutes ago which writing this blog post has just brought to mind...)
How coping with a front-door lock that's playing up slightly can leave me temporarily imprisoned in Warrillow Towers. How the crowds and noise on market day in Tamworth really are too much for me to cope with at the moment.
How my new-found ability to forget or lose things can mean I think I've lost my wallet and can spend a nervous hour re-tracing my steps from the previous evening, only for Mrs W to then find it down the back of the lounge sofa.
How the thought of losing my wallet can send me into agonies of panic over all the hassle that would entail.
How explaining all this to non-strokies who, perfectly understandably, don't have a clue can sometimes make you want to cry with frustration.
I expressed all this frustration yesterday on a forum for stroke-survivors. Someone replied that I have to start saying that all of this is a problem "at the moment". Of course, they are right. But it doesn't make it any easier at the moment.
And then I have weeks like this one. Weeks that remind me about the joys of being on blood-thinning tablets in our glorious British weather; how the tablets make your blood feel so cold that all you want to do is hide under a warm duvet.
How my brain has been damaged in a way that makes it difficult to remember why I'm going into town after I've taken two steps out of the front door of Warrillow Towers. The frustration of getting home from town and remembering that you forgot what you went in for AGAIN.
How I really must remember to write down the day's activities on the whiteboard in the kitchen or I WILL forget something important. (Such as the dental appointment 15 minutes ago which writing this blog post has just brought to mind...)
How coping with a front-door lock that's playing up slightly can leave me temporarily imprisoned in Warrillow Towers. How the crowds and noise on market day in Tamworth really are too much for me to cope with at the moment.
How my new-found ability to forget or lose things can mean I think I've lost my wallet and can spend a nervous hour re-tracing my steps from the previous evening, only for Mrs W to then find it down the back of the lounge sofa.
How the thought of losing my wallet can send me into agonies of panic over all the hassle that would entail.
How explaining all this to non-strokies who, perfectly understandably, don't have a clue can sometimes make you want to cry with frustration.
I expressed all this frustration yesterday on a forum for stroke-survivors. Someone replied that I have to start saying that all of this is a problem "at the moment". Of course, they are right. But it doesn't make it any easier at the moment.
Wednesday 8 April 2015
To hell and back - a story with a positive ending
It's been just over a month since I've mentioned Emily Smedley, the therapist who is helping me get back on my feet (literally) after my stroke.
As I've mentioned previously, I see her once a fortnight at her base in Derby and she pushes and pulls me in all directions, hoping to unknot and strengthen muscles and generally get me back to somewhere near what I was before December 16 2013.
It always hurts like hell, but yesterday's session was the worst yet. At times, it felt as if she was standing on my bladder ("I can't have been; your bladder's somewhere else in your body" she said) and she made me put my arms behind my head while she tackled the rest of me, something which my stroke-affected left arm was clearly reluctant to do.
It was a good job that the rest of Broomfield College was closed for Easter; anyone standing outside the door of the physiotherapy room may well have thought a murder was taking place, given all the howling and screaming that was going on. I've always enjoyed our sessions, however painful, but I couldn't wait for this to end.
By the time Emily told me to get off the couch, put on her most severe expression and asked me how I felt, I actually felt ready to die. But she flicked her head towards the door, directed me outside into the corridor and said "Now, run." And I did, doing several short 'sprints' up and down the hallway.
Feeling increasingly confident, I then said: "Actually, I feel as if I could do this outside." The spring sunshine may have helped my mood, but we went outside and I did indeed 'run' as you can see here:
http://twitter.com/Brea.../status/585521245715836928/video/1 It's a long way from this to my aim of a 5km charity run but when you consider that this is probably the first strenuous exercise I've had since December 2013, it's a start. And as plenty of people have told me: "No pain, no gain." And Warriors can cope with pain, can't they?
As I've mentioned previously, I see her once a fortnight at her base in Derby and she pushes and pulls me in all directions, hoping to unknot and strengthen muscles and generally get me back to somewhere near what I was before December 16 2013.
It always hurts like hell, but yesterday's session was the worst yet. At times, it felt as if she was standing on my bladder ("I can't have been; your bladder's somewhere else in your body" she said) and she made me put my arms behind my head while she tackled the rest of me, something which my stroke-affected left arm was clearly reluctant to do.
It was a good job that the rest of Broomfield College was closed for Easter; anyone standing outside the door of the physiotherapy room may well have thought a murder was taking place, given all the howling and screaming that was going on. I've always enjoyed our sessions, however painful, but I couldn't wait for this to end.
By the time Emily told me to get off the couch, put on her most severe expression and asked me how I felt, I actually felt ready to die. But she flicked her head towards the door, directed me outside into the corridor and said "Now, run." And I did, doing several short 'sprints' up and down the hallway.
Feeling increasingly confident, I then said: "Actually, I feel as if I could do this outside." The spring sunshine may have helped my mood, but we went outside and I did indeed 'run' as you can see here:
http://twitter.com/Brea.../status/585521245715836928/video/1 It's a long way from this to my aim of a 5km charity run but when you consider that this is probably the first strenuous exercise I've had since December 2013, it's a start. And as plenty of people have told me: "No pain, no gain." And Warriors can cope with pain, can't they?
Wednesday 1 April 2015
The National Health Service - some uncomfortable truths
What's the point of having your own personal space in the blogosphere if you can't use it for the occasional rant?
For a while, I've been meaning to do a post expressing my frustrations (and no doubt those of all strokies and disabled people in general) with the National Health Service. What's spurred me into action is the start of the 2015 General Election campaign.
For the next few weeks, the media will be full of politicians of all parties claiming that they and only they will save/improve the NHS; excuse my language, but it's all b******s. Here's one example - last week, the Prime Minister was all over the papers shouting about how consultants and hospitals needed to work a seven-day week.
That's undoubtedly true, in my opinion. When I was in hospital after my stroke, I knew that if the consultant didn't discharge you on a Thursday morning, you were going to be in hospital for at least another week because you wouldn't see him again until the following week.
And nursing services over the weekend, especially on Sundays, were almost entirely in the hands of students and agency staff. I thought I could live with that until the night a careless agency nurse almost gave me the wrong tablets...
So it needs to happen; but the sad truth is that it won't because, whichever party is in power, there is no money for it. I was reading the other day about the £30billion gap between NHS funding and costs which is likely to exist by 2020 - if nothing changes.
In the meantime, patients like us continue to suffer. The left hand of the NHS continues to fail to know what the right hand is doing and patients like the stroke survivor I know whose speech was severely affected and who still struggles to walk 18 months on cannot get decent speech therapy or physiotherapy services.
The excuses are normally down to a lack of resources/staff or the system not being able to cope with demand; the latter may be true - I had to chase for weeks after my referral from one hospital to another went missing in a blizzard of paper (shouldn't it be computerised?) - but the reality is that nothing will change unless vast amounts of money are pumped into the system even to cope with existing commitments.
I don't claim to have an answer - but I do know that all the politicians who will pontificate on the subject for the next month probably don't either. And anyone, whoever they are, who claims that their party can provide all the answers is being economical with the truth.
For a while, I've been meaning to do a post expressing my frustrations (and no doubt those of all strokies and disabled people in general) with the National Health Service. What's spurred me into action is the start of the 2015 General Election campaign.
For the next few weeks, the media will be full of politicians of all parties claiming that they and only they will save/improve the NHS; excuse my language, but it's all b******s. Here's one example - last week, the Prime Minister was all over the papers shouting about how consultants and hospitals needed to work a seven-day week.
That's undoubtedly true, in my opinion. When I was in hospital after my stroke, I knew that if the consultant didn't discharge you on a Thursday morning, you were going to be in hospital for at least another week because you wouldn't see him again until the following week.
And nursing services over the weekend, especially on Sundays, were almost entirely in the hands of students and agency staff. I thought I could live with that until the night a careless agency nurse almost gave me the wrong tablets...
So it needs to happen; but the sad truth is that it won't because, whichever party is in power, there is no money for it. I was reading the other day about the £30billion gap between NHS funding and costs which is likely to exist by 2020 - if nothing changes.
In the meantime, patients like us continue to suffer. The left hand of the NHS continues to fail to know what the right hand is doing and patients like the stroke survivor I know whose speech was severely affected and who still struggles to walk 18 months on cannot get decent speech therapy or physiotherapy services.
The excuses are normally down to a lack of resources/staff or the system not being able to cope with demand; the latter may be true - I had to chase for weeks after my referral from one hospital to another went missing in a blizzard of paper (shouldn't it be computerised?) - but the reality is that nothing will change unless vast amounts of money are pumped into the system even to cope with existing commitments.
I don't claim to have an answer - but I do know that all the politicians who will pontificate on the subject for the next month probably don't either. And anyone, whoever they are, who claims that their party can provide all the answers is being economical with the truth.
Subscribe to:
Posts (Atom)