Tag Archive for rehabilitation

Back to netball!

Now, apparently I worried someone enough for them to have made some calls with my last post.  Apologies.  I really AM fine.

And to prove it I thought it was worth sharing that tonight was my first game of netball since school (let alone post-stroke, etc.)

Here in the UK, England Netball is running an initiative called “Back to Netball“.  So long as you’re over 16, you’re eligible to go along.  It’s dead cheap (about £2 or £3 depending on location) and you don’t have to have ever played before.  Most people played at school but not since, so it’s really mixed ability…

B2N_Autumn_Banner_432x299px.sflb.ashx.jpg

I found it because I was googling for netball in the area, since we all know it’s very unlikely I’m ever going to be friends with a gym.  And I came across this:

If you click it you can read all about it.  Anyway, I thought, “Well if she can do it, I can definitely do it,” and I have.

Not having played for cough-cough too many years, and not having the balance I used to have either (though really, I’m sure that wasn’t the problem!) I was crap.  I did score a goal though and I had so much fun I almost forgot I was running around for an hour.

So there you go, I’m fine.  And running around.  And making a few new friends in my new, slightly less lonely city.  :-)

[And yes, I did clear it with the GP.  We changed the meds today to ones I’m more comfortable with, and the haemoglobin is slowly climbing so everyone is happy and chilled!]

So if this makes you as happy as me – or is that the endorphins still in residence – then please can you vote for “Back to Netball” to get some National Lottery money?  It takes about 10 seconds to click here and then click on the Vote button.

 

Another day I’ll blog on what it’s like moving yourself lock, stock and barrel to a new city, where the people you brunch, lunch and supper with are not.  I’m not sure it’s part of the post-stroke story.  Except of course, it probably is.

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Moving On…

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.

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Breaking Rules and other Post-Hospital Tips

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..!)

 

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Brain Bruisers

The t-shirt and bag arrived today:

 

In other news, on the one month anniversary of all this… I discovered this morning that MRIs and Clexane were both introduced in the mid-1980’s.  So, I suppose if this had happened before then, I’d probably not be here by now.   Ho hum.  I probably ought to write a thank you note to whoever invented them.

 

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Physical, Mental and Streatham High Road

I suppose it’s probably time for an update on where I’m at.  I might do it in bulletpoints, but I suspect it will still end up far longer than I want it to be.

DRUGS

  • Warfarin still not working so trying a new regime for a week (see photo below)
  • Clexane jabs continue until at least then (was supposed to be for 5 days; we’re on Day 22).  Each one now produces a nice little bruise, about the size of a pound coin
  • I’ve only done basic maths, but it seems to me that if the original 9mg knocked me up to 2.8, and 7mg took got back up to 1.9, settling for 8mg might put me at 2.45, which is nearly the ideal 2.5.  I suspect it doesn’t work like that, or something.  What do I know anyway?

regime for next 7 days

PHYSICAL

  • Face. Left side of lips still numb/tingly but less than before. Left side of face only now occasionally numb (this has never been visible). All worse when I’m tired
  • Walking. Slower than I was before, but its really getting there.  I can tell its different most of the time; you can tell mostly when I’m tired.  I can go the distance now, but only – it turns out – if I’m prepared to make sacrifices for it – see below.
  • Tiredness: I’ve heard tales of crashing tiredness: I don’t get that.  But, on Monday, I did quite a lot of things, and on Tuesday, though I was awake from about 6am, I didn’t get out of bed until lunchtime and then admitted defeat an hour later, only resurfacing for 2 hours when visitors arrived from 4.30-6.30.  So if I take a day to do something almost normal, it would seem I lose a day in return.  For now.
  • Head. Headaches pretty much gone, except for Tuesday – see above – which sent me back to bed with drugs to sleep it off.  I’m nearly always aware my head is there if it’s unsupported (if that makes sense) and sometimes, like most of today, it feels like my brain is surrounded by water which just makes it feel weird, and everything around me a bit more dense. I’m not sure if that explains it very well. I think maybe you have to have been here to get some of it.

MENTAL

This is the bit that’s really hard to explain. It’s there, my brain – I have pictures as proof (are you reading this, brothers??? Proof I tell you!). But its hard to explain how it works right now. Here is my try:

  • It’s there, and it works, and it’s not slow in terms of think/speak.
  • Its hard to be involved in big combinations of visual/aural stuff.  I recounted before a time when things got a bit much in a restaurant, and I haven’t tried that combination since, as yet.
  • I can cross roads now, though I’m still using proper crossings on the really busy ones.
  • The TV is ok when its not repetitive noise or flashing lights.
  • Two conversations going on at once is ok… but only if I can’t hear the other one!
  • Newspapers are ok as I can just read the bits I want. Magazines are ok but I can’t really be bothered with them.  I haven’t read a book yet, despite the fact I have some lovely fiction and non-fiction in a pile that’s been quietly building since I started my MSc; and some text books and papers looming
  • I don’t get as confused about different things happening at the same time.
  • I still lose the thread of the conversation sometimes if I’m distracted (note this if you want to change the subject!)
  • The big weirdity (I made that word up – I’m sure it’ll catch on…) is realising that if you look fine, and sound fine, everyone assumes you’re fine.  Which is good.  Except if you want a seat on the tube.  Or you can’t do your coat up in a public place. Or you are fiddling around with your purse long enough to have someone in the queue behind you sigh.  I know there are people much slower than I am right now. It’s just that I’m not used to it being me.

Basically, its not abnormal, its just not my normal yet.  I mean, I’d quite like to go to the cinema, but even I know that might have to wait until next week, and then be something more along the lines of Love Story than Die Hard.  And I’m a Die Hard kind of girl.  As you may have noticed.  The mental bit is the bit that’s frustrating, because there seems to be no way to hurry it along.  And that’s frustrating. I actually let myself wonder today, for at least 2 minutes while waiting for my nails to dry – see below – what if it doesn’t click back into place. But them I remembered that’s not an option, so that’s ok then.

After yesterday’s debacle, I knew better than to venture too far this afternoon. So, as I still can’t cut my nails on my right hand properly, I thought it was a good excuse for a manicure.  I hate manicures. Seriously.  Why would I pay someone to do that?  Shoes, manicures, hours of shopping, facials: I loathe all that stuff (Yet dare to call myself a girl?  Hmm, let’s imagine that I’ve other assets that might compensate…..)  But I figured if I can’t do it myself, I may as well go all out…. see for yourself:

Obviously the second I moved I killed some of Z’s brilliantly accurate work, and she said, “I’ll do that one again.”  I said, “No, it was my fault, just patch it up.”  She smiled, and said, in the gentlest, kindest way I’ve heard all day, “Are you in a rush to get anywhere?  No, me neither.”  Not in a rush to get anywhere? No, I suppose I wasn’t. Another entry for the ‘weirdity’ definition.

Anyway, I don’t think red nails are me.  On seeing them via Skype, my friend said, “Normally I’d have to go to Streatham High Road – and pay  for it – to see nails like that!” And no, I won’t out him publicly for that one, however much he deserves it.

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Stalled at 1.9 / mouse

INR (blood) checked this morning; it’s still at 1.9. This means waiting to be re-dosed again; I find out at lunchtime.

I actually thought it would be ok today (i.e. up between  2-3) since yesterday’s jab produced the first bruise in days:

For those of you keeping up with the issue of she-who-shall-not-be-named, I got a voicemail the other day.  Then I got an email:

Dear [me],

I am writing in response to the issues regarding your experience in the Anticoagulant clinic, which you have raised in your letter to Dr [Name} 1/11/10.

As I said in the message I left on your voicemail 5/11/10, I am undertaking an investigation about these issues and aim to contact you with a response by 11/11/10.

Please let me know how you would like to receive the response: phone call, letter, email or a meeting.

Please do not hesitate to contact me if you wish to discuss the matter further.

I look forward to hearing from you.

Yours sincerely.

[Name of Matron]

I responded:

Thanks for being in touch [Name of Matron].

As I mentioned in the letter, I do not require a response on ‘what happened next’.  I was extremely uncomfortable writing the letter, but it played on my conscience that possibly no one else would say anything either.

I truly hope that you discover that, perhaps, this is down to trying to do too much in too little time, or something similarly explainable, and that it can be rectified in a positive way.  I don’t need you to be in touch again, and I hope this is also helpful.

[My name]


Case closed. I hope.

My friend, Emma S, put this on her facebook last night.  It made me giggle and I kept hitting replay.  It kind of reminded me of some of your reactions when you found out about the stroke thing:

[youtube=http://www.youtube.com/watch?v=2IojH5PthHo&fs=1&hl=en_US]

:-)

You can hit replay. And show a friend.  You know you want to.  And no one is watching!

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One step forward and…

Well.  Um.  What did I do today?  Nothing.

Made myself get up at lunchtime.  (Lunchtime!  Had been surfing net since 7am, honest). Made an omelette.  Turned on tv.  Head ached.  Paracetamol.  Noise and lights too much.  Went back to bed less than an hour after I got up.  Slept for 3 hours.  Got up because someone was coming., which was nice.  Back in bed again by 7. Waste of a day (except the visitors).

Guess its payback for yesterday.  Ok.  Well.

Ok.

When I got home yesterday, I made beef stew. (No wonder I slept well last night!!)  It’s tricky to know what to cook that’s easy, will feed lots of people (because I’m not happy about them still bringing things), is packed with veg (because that’s what I’m craving) and is, um, nice. This was my first proper cooking.

Beef stew.  With a lonely tin of Guinness that I found in the fridge to liven it up.

Use any root veg you like: I had potatoes, parsnips, carrots, red onion, shallots, and a leek. And diced beef (lightly sealed) tinned tomatoes and, if you have them, maybe a handful of pearl barley and/or lentils. Chuck in your favourite herbs and a can of Guinness (instead of red wine, not as well as!). Cook on 180 for about 2 hours.

Eat with bread.  Or rice.  Or baked potatoes.  Yum.

I made loads of it though, so if you’re coming over for supper tomorrow, this is what you are getting.

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Chocolate, Brains and T-Shirts

Yippee.  You couldn’t make this up. “Dark Chocolate Compound Could Protect Against Stroke Brain Injury.”  Oh yes, you may call me a bearer of glad tidings! Has there ever been a better excuse to go and buy several bars of Montezuma’s Chilli & Lime?

montezumas.co.uk

I threatened a while ago to design some t-shirts to cheer myself up.  One t-shirt and one bag are on their way.  Putting them together made me smile.  We shall see how they turn out in real life, but on screen they look like this:

not just a blogger...?

Oh, and if everything looks different to you today,  you’re not going mad: I fiddled with the look of the blog yesterday.  What???  Yes, I really do have too much time on my hands. Remember?!

the way it used to be...

I know I’ve been cheating for the last couple of days by using photos instead of words.  It’s probably more interesting for you, and it’s been a nice break from thinking for me, so thanks for the indulgence.

I had another INR (blood) test this morning, to see if the warfarin is doing its thing yet.  If it is then I can ditch the Clexane jabs (again) and see if we can keep my INR stable in its target range. If not, we keep going with the jabs too until it comes up enough.

What happened?  I’ll tell you all about it later.

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Cheeky Little Wii

My baby brother’s Wii was installed in my living room today. (One can tell he thinks I’m actually ill because he even lent me the Guitar Hero kit along with all his games.) As you know, my bright idea is that the balance board on the wii fit can help get the balance issue utterly sorted faster than otherwise. The idea is to be able to do this:

from wii-fit-wii.com

However, after the first go, tthe Wii Fit kindly said this:

Well, no kidding, but as you don’t to have a way for me to input ‘Cut me some slack, apparently I had a stroke,’ you could at least be more polite.

To add decided insult to injury, my Dad then had a go. And it said this:

SERIOUSLY????????!!!!!!!!!!!!

I think you’re just giving him extra points because his avatar actually looks like him, and that’s simply not fair!

In other news, I now know why more people are hitting this site than I’ve told about it. It seems there are now a couple of links in obscure places… at least, this is true as I press ‘publish’, though I suspect they will see the error of their ways, possibly before you even read this:
WordPress has this as the Featured blog for “stroke” – well, presumably there aren’t that many, given the average age for a stroke is 75. Yes, 75: check the link. Strangers, please note that I shall not be 75 for about another 40 years!
• In2PhysicalTherapy.com has put it in its research library. If you’ve come from there, I’ve no idea what I’m talking about (I’ve never done this before) and I got the physios to sign me out of hospital after the first session. So this isn’t going to be terribly helpful I’m afraid…
• And, well, this fed through to FoodPress‘s brunch list, thanks to Libby’s fab recipe yesterday. So that one really belongs to her.

wordpress.com

in2physicaltherapy.com

Foodpress.com

Like a lot of things… weirdness.

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No fireworks, great brunch

Weekends are weird.  They’re like weekdays, with less people and no logic.

There are firework parties going on everywhere tonight.  I can hear at least 3 of them.  The idea of a warm coat, baked potatoes, rich hot chocolate (with a shot of something even more warming, perhaps) around a bonfire with fireworks is almost tangible.  But I can’t do standing around nor crowds nor the loud unexpected this week.  So.  I texted one of you all through the live rugby match you were at, and then watched Casualty instead.  A&E at Hospital Number 1 wan’t like that…

from www.bbc.co.uk: search for "Casualty"

The rest of today is probably best told in pictures.  As a bonus, it comes with a recipe from Libby, inspired by Nigella.  This was seriously good.

Unroll a pack of bought puff pastry onto a greased baking tray. Fold over each edge to make a border. Spread a thin layer of tomato puree. Line with pre-cooked-but-not-yet-crispy bacon. Cover with thin slices of tomato. Sprinkle liberal amounts of mozzarella. Bake until the cheese is golden. Serve with an egg on top. Utter, utter yumminess. Thanks Libs! xx

And since Libby was cooking, this just left the rest of us to do the hard stuff…

Hand/eye ball from MM, solution by JE.

Brunch was followed by a fab excursion to the-pub-around-the-corner, and then a two-hour sleep that it was hard to get out of.   I know the power nap is pivotal but… as I may have mentioned… it’s getting boring.

Next week it all changes.  Things start getting back to normal.  I’ve decided. Therefore it shall be.

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