Something felt different today. Like something in my head had clicked back into place or something. I don’t really know how to describe it but it’s a good thing. I feel a little more like me again today.
Last night I was trying to explain to Iona that I’d spent the day trying to walk without my left side being given any special treatment. If you’ve been reading this a while you may remember that, while in hospital, the physio (POT) was explaining to his trainee that stroke rehabbers’ brains/bodies often think something is required when it’s not. One example, back then, was that I’d lock my left knee a lot – which is apparently so common he’d said I’d be doing it without having seen me do it – so I had to teach my brain and my leg it didn’t need to lock the knee. Anyway, I’ve been trying to teach my left side that it doesn’t need to feel heavier than my right side and therefore I can walk in an ordinary gait. I think it’s kind of working, though when I’m tired I forget, but it’s all getting a bit easier and, well, that’s what’s supposed to happen!
On a vaguely more serious note, one of the posts I half wrote but didn’t post was about little things I did to accommodate the initial ‘being home’ period. They are actually still in place but I suspect I’ll start weaning some of them out soon so I thought I’d share in case it’s useful for someone else….
- Charging cables for essentials (macbook, phone, firewire) are permanently plugged in and draped over the headboard of the bed so I can just pull and plug. I know you shouldn’t leave them plugged in – I’m one of those people who hates TVs on standby, etc. – but these are exceptional days.
- Have Innocent veg pots, Waitrose Pad Thai meals and grapes in the fridge. I don’t usually do microwave meals but these are really good and take no effort (esp if you don’t decant them!). Grapes might be a cliché but, being home all day surrounded by treats everyone’s been lovely enough to bring, is constant temptation. Grapes in the fridge or the freezer may be full of sugar, but are far lesser than many evils.
- Avoid rush hour. I forgot this once. It was a mistake. Lots of noise. Too much bustle. And people have no idea you’re not able to decide/shift as fast as they can; particularly the grey and pushchair-tethered. (Book. Cover. Works both ways people.)
- Set up alarms for everything, esp meds. Use the snooze button at will, but do not turn it off before you’ve done whatever it is. I know you think its impossible to have forgotten all about it within 30 seconds, but it’s not. Trust me. Just do it. And book planned visitors into a diary on your phone as soon as you know when they are coming. Check your diary before you leave the house. Every time. And beware iphone clock changes… enough said.
- Find a phrase you can use to tell people all that is not as it seems without feeling too vulnerable. You’ll be glad to have it ready when its taking time to get into your purse/wallet to pay, or you can’t figure out a ticket option, or choose something from a menu, or you want the only table in the restaurant with the high backed chairs. Or when the lady in John Lewis thinks its ok to have a long chat with a colleague when you are trying to stay standing without support. (Mine is, “Sorry, I had an accident last month, could we [whatever].”
- Answer back or simply walk away when you’re not treated properly. I’ve never been good at this. I’m good at teasing and banter, but not at actually telling people where to get off. Now isn’t the time to tolerate too much, nor try to see it from their point of view. (If you have this habit, I know it’s very hard to break and I don’t claim to have entirely done it, but I’m working on it!) “Do as you would be done by,” also works both ways. If I wasn’t being kind to you, or was being an outright cow, I’d expect you to – at the very least – walk away from me, so…
- It’s ok to break your own rules. I have great rules: no microwave meals; no shopping in primark (or sending someone for you for the uber-brilliant hospital bounty, in my case); don’t leave lights on; shop around for prices/products; don’t give anyone a password for anything; be self-sufficient. All out the window. Don’t judge me too harshly, please. I’m not. It’s just for now, because I need a bit of a break.
I think that’s it. I’ve got other half written things…. like how important an iphone, a laptop with a 3G stick, email and facebook can be to your mental health when in hospital and recovering at home, while everyone else is at work. (I might not finish that one now, as that just about sums it up). But there’s other stuff and I’ll get to it.
My next INR check is at 9am tomorrow morning. Judging by the bruises all over my belly from the clexane jabs, I’m thinking its probably going to be well within range this time. Finally. But I always say that, I suppose, so we shall see.
(Yep, you even get a pic – look away if you’re squeamish and definitely don’t read on. But what i like about these ones is you can see the puncture site in the middle of the bruise! It’s kind of cool. (And I swear these don’t hurt… you just have to play ‘find a spot between bruises’ each morning). Yep, it’s probably the only time i’ll flash my belly and it;s not even pretty. And this was before it got bad..!)