Tomorrow I’m seeing the neuro at the stroke clinic at Hospital Number 2. You’ll remember he stole me back from Hospital Number 3, in possibly ego-related act for which I was grateful. I haven’t seen him, or any other stroke related doctors, in six months.
I suspect that he’ll probably discharge me permanently tomorrow. There’s a possibility he’ll want another MRI or CT I suppose, but my instinct says he’ll let me go after tomorrow. Unless there are persistent issues, there’s often nothing new to tell after a year. And it’s been just over a year now. It feels like a very long time ago… and what an interesting year it has been on many fronts.
It’s got me thinking about questions I want to ask him, as well as things that have changed in the past year. Let’s take each in turn.
Questions I want to ask:
Do I really need to take a baby aspirin a day forever? There’s lots of research that apparently suggests this could have loads of benefits for loads of people. However, I’m on it because I had a stroke. But my blood clotted not because there is anything wrong with my blood, but because I tore an artery in my neck. So I’m not clear what benefits it has for me – particularly stroke related ones. Aspirin doesn’t bother me, despite the long-term concerns some have over cancer of the stomach, but it strikes me this may be another “this is what we do after stroke” without actually considering it in context of the cause. Who knows, I’ll ask tomorrow.
How can I tell what is brain injury related and what just ‘is’? For example, I’m pretty sure that my balance is lousy in the dark because of the brain injury. It was fine before the stroke and, though it is a gazillion times better than when I couldn’t stand up very well in the light, let alone the dark, I’m still wary of pitch black as I can’t tell ‘upright’ without a point of reference!
But, on the other hand, having started to work from a new location, I’m very aware that a week of travelling to and from plus work in between wears me out far more than it did before and far more than doing the same amount of work from home. But how does one know if that’s a brain injury issue or it’s just about taking a few weeks to get used to the joys of commuting? The implications are more important if I need seek a full-time “proper job” in the new year rather than continuing to work for myself.
Can I have copies of the scan pictures please. No, I don’t need them but I’d quite like them. I particularly like the ‘meteor’ shower one and, let’s face it, they’re a lot more arty to me than they are useful to them!
And as for reflecting on change in the past year, I’m still wondering whether, at some point, I might reveal some of the realities of what went on at the beginning of this year.
Some of it because stroke affects everything, including the most important people in your life, and I didn’t – and don’t – feel my VIPs were for public consumption.
But the area I would have liked to have vented about, and recorded for others to learn from, is that sometimes people who are – frankly – paid to know a lot better, sometimes exhibit some at-best-daft and at-worst-devastating behaviours that can force one to have to make very serious decisions at a time when it’s not ideal to have to make any major decisions. But I couldn’t, for fear of getting tangled up in legal issues.
Yeah. Cos that’s what you need when you’re trying to get your life back together after a stroke..!
(I’m reminded of one 30-something stroke patient being told a hospital wanted to sue him because he blogged what was going on in a rather forthright manner. Obviously they couldn’t really, because he was telling the truth but, even though my issues were nothing like that, you can probably guess that it’s not the time when you really feel like being bothered with a fight. Though not stepping up for a fight when I felt I probably should was a whole new experience in itself for me!)
I have to remind myself that the point of this blog was, in the beginning, to communicate what was going on to my friends, so I didn’t have to arrange fielding of phone calls. It became an outlet for me to communicate with friends and make some new friends, when I was limited in terms of what I could do. And it became my offering to anyone following in my footsteps, from someone who was prepared to tell it like it is. You might remember I could only find one blog written by someone roughly my age (hello Dom Pardy), and one isn’t enough. Plus Dom’s a bloke and so some of our issues are very different!
So why am I still bothered about the missing bit about the “at-best-daft and at-worst-devastating behaviours” not being here? Well, because I strongly feel that some learning should come of every experience and I’m not sure anyone has learned anything from that little bundle except me. In fact, I don’t even think some people that should know what happened have got the slightest clue that it did. I chose to take the moral high ground, choose dignified silence and rest assured in the knowledge that I was better than that and should just let the offending issue go as a lost cause. After all, all those people I loved and/or respected before the stroke remained the same people I loved and respected afterwards so, in that sense, the important things remained in tact.
My dilemma, of course, is that as well as wanting to vent about it, it would be nice to have a few selected people say, “Oh my god, you are kidding, that’s beyond outrageous…!” And I’d like those who may go through similar things to know they aren’t alone.
I don’t hold out any hope for those who should take the opportunity to reflect upon their behaviour, but I think there is a lot of learning to be had for those that would have acted differently if they’d know what was going on and for those who may, unfortunately, have to face the same kinds of issues.
I’m still not at a point where I feel I can tell. But watch this space because, in time, I just might find a way to do it.
Are there any other bigger issues that I didn’t report than I can share without reading and rereading in the manner I’m doing with the previous paragraphs? Erm. Well…
Some of you now know it can be quite amusing to try explaining what it’s like not to know how to use muscles that you have, and to have to identify muscles you’d never considered the existence of before. All the things you ‘just know‘ how to do you? You have to work out the method of doing them before you can figure out how to make that happen. Really basic things, like picking up a cup, start to become long processes that involve looking at the cup, telling your brain where it is and working out how to get your hand to the cup and grip it tight enough to bring it to your mouth. My muscles could do all those things, I just couldn’t remember how to tell it to do it. I’d never had to think about the ‘how’ before. And, in fact, in the case of cups I just used straws for weeks because it was easier!!!
But think of all the things you don’t realise you ‘know‘ how to do, and then try working out how to do them. Like picking up a cup, going to the loo, or just standing up. Seriously, give it a go sometime. Stop where you are, and say in your head what you’re going to move in order to do whatever it is you need to do. Trickier than it sounds!
Other things… yeah. I never told anyone at work that my doctor repeatedly offered to sign me off for another 3-6 months in the few weeks after I went back to work. I wanted to go back, and I wanted to deal with whatever issues arose from that, but I didn’t have to stay once I got there. I could have opted out for another few months but, sadly, I’m just the kind of person who prefers dealing with things that come up rather than putting them on ice! Besides, I was bored stupid at home all day.
What else? Well, I ultimately decided to go it alone in terms of job. I had an MSc thesis to write and I would have had to choose between that and full-time work, certainly for the first few months. I’ve nearly finished the thesis, am doing some work freelance for a rather cool company or two, and I’ve launched a couple of websites.
You know about www.hospitalessentials.com which I set up based on my experience – and quite a lot of yours – in UK hospitals, and that site will have a massive makeover in the new year.
I’m also working really hard on www.ContinuityInBusiness.com which is going to be all about business continuity exercise downloads, and might even earn me a wage, possibly, hopefully, when I begin putting the paid-for resources up. (They’re in the testing phase at the moment, so it might be a month or more!)
But, I suppose, that is all set against the background that the reality is that, though I easily work more than 60 hours a week for myself, studying, websiting and meeting ever increasing numbers of professionals regarding how we’ll use the thesis research and for the Continuity in Business scenario-based exercise thing, it may be that its necessary financially for me to revert back to “proper” paid employment sometime next year, if these things don’t continue to thrive.
Obviously I hope they will, but in the back of my mind, recent experiments with working from another location 5-days a week have been partially successful. I’ve found that three days there and the rest from home is optimal for me. It may be that it just takes time to get back into a rhythm after so long dictating my own working patterns, or it may be I’m often working over 7 days a week rather than the more traditional 5. But there is a nagging fear somewhere that it might not be the case, and that might – potentially – be a problem if I do need to find a “proper job” next year.
Still… facing most things head-on has always been my way and I don’t suppose that will ever change!