Tag Archive for facebook

5 percent?

Lots to say after yesterday, but I’ll write it up and post it before the weekend.

In the meantime, this appeared on the Young Stroke Survivors facebook page this morning:

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Stents, English and Facebook

No posts for ages and then suddenly three things to say.  This post has three points: stents may be bad, English speaking nurses are required and facebook support is priceless.

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Just Sayin’

My facebook update last night says this:

As my cousin Abby would say, “Just saying“.

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Travel Insurance: Tick

So I have an annual travel insurance policy with an insurance company that costs me about £40 a year.  I suspected it wouldn’t cover me for what is now a pre-existing condition – i.e. a left vertebral dissection that led to a stroke.  I was right.

The insurance company got a nurse to ring, where upon it took an age to answer her questions because the answers aren’t straightforward when you’re trying to not withhold any detail they can later claim that you withheld.  So questions like, “When did you last see a consultant and when will you next see a consultant?” involve explaining that I’m on the Cadiss trial so I see consultants more than I would’ve if I hadn’t volunteered for that.  Obviously it’ll be held against me as she then has to record the frequency is actually more than it would have been if I hadn’t volunteered. I know it has other benefits, but so much for karma!

She ended by saying my current policy wouldn’t cover “the condition” so the insurance company has to ring me back.  I pretty much knew that they would want a premium on top of the standard, but I can’t imagine what that might be, particularly when explaining it all took about 30 minutes.

On the other hand, on the recommendation of a nice man called George, who is on one of many the dissection/young stroke Facebook forums to which I now belong, I called a company called Able2Travel.  In about 5 minutes flat they offered me two options on annual policies, one for £155 and one for £185.  The latter seemed to have a few more benefits so I’ve put a reserve on it.

When the original company comes back, if it costs more than £185, I’ll simply take up Able2Travel’s offer, which seems more than reasonable under the circumstances.  Which is exactly what George told me it would be, bless his helpful cotton socks.  It’s rare I come across a service company that does exactly what it says on the tin.

So, while I have no idea how useful they are if one claims for something, for sorting out a policy that covers my “existing condition” with minimal fuss, it’s certainly beat my current company HANDS DOWN on customer service and, I kind of suspect it’ll do better on the price too.  We shall see…

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a very modern anno

Tomorrow is my birthday.  It’s a whole new year.  And, perhaps, a whole new beginning.  We shall see what it brings.

One thing I have learned is that you can fight life, but it always wins in the end.  And so long as you look for the positives, you’ll usually find them, in the end.  

Nobody promised us an easy ride, or a lack of bumps, or that we would be on cloud nine every second of every day.  So we shouldn’t expect that.  Our responsibility, I might suggest, is to do the right thing for us and for as many of the people we love as possible (even if we dislike them or don’t understand them at the time) and then find the positives in the situation.  There are always positives; sometimes we just have to look a little harder or wait a little longer to find them.

My everyday friends/family have known about the dissection, the stroke and the blog since it happened. Colleagues and contacts who are on the fringes of the everyday know because they were there or they were told, though they may not know about the blog. But I’ve not ‘gone public’ in the sense that I’ve never sought to tell those who are not in my everyday.  It just didn’t seem necessary.

BBC One's 'Mistresses'

When she was here, my friend Claudia bought me a boxset of the BBC drama “Mistresses“, which I’d never seen. I finished it this morning.  In the final episode, one of the leads explains why she hadn’t told some of the others that she’d been ill.  She said something like this: “Every time I tell someone else, it’s like telling myself again“.  And that resonates.  Something happened, and we did that and then we move on.  Do we really have to keep acknowledging it over and over and over?  As it turns out, it’s not quite as over as one would have hoped, but we are almost there and, because I now understand why I didn’t tell, and because I see tomorrow as the start of a whole new year, I thought I would.  So I did… in the most modern and uncouth way:

So if you clicked that link and you are now trying to figure out what on earth you missed, well, it wasn’t that dramatic.  Honest. 😉

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The power of labels

I started writing another post, but I’ve been sidetracked by the notion of the power of words as labels.

Labels by Olive Is Green

I had to fill in a form the other day. It asked for the date of my stroke, the type of stroke, and the ‘name of survivor’.  I thought this was being a bit dramatic, and told them so in the comments box.  On a facebook forum to which I belong, a journalist posted a request for members to respond to a question.  The forum went mad because the journo had referred to us as ‘stroke victims’.  “Mate, do we sound like victims to you?” was one of the more polite responses.  And NHS paperwork has ‘name of patient’ written all over it.  Well, apart from the fact that I can’t work out when I can technically claim I’m no longer a patient, when was the last time anyone put the word ‘patient’ and me in the same box?

I don’t consider myself a survivor.  Survivors are people who fought to stay alive.  I just let other people stick lines in my arms and learned what to do with the drugs.  Victims are people who get mugged or raped or something, or otherwise it’s a state of mind.   A patient is someone being attended to by someone medical, which only happens to me a couple of times a week these days.  And generally they are sick, which I do not feel. Or someone who has patience, which I do not.

I don’t like the labels.  Hearing any suggestion that they apply to me pisses me off.  I understand why the facebook message board posters let rip at the poor journo, who just wanted some perspective from people who’ve actually had a stroke.  I’ve sent more than one sarcastic text or IM response back to more than one person who’s questioned whether I should be doing something, or doing it alone, or asked me to consider how I feel about what happened on a level I can’t really be bothered to think about in any great detail.  I know it happened.  I was there.  I’m a grown up.  I can work out what I can do and what I can’t, and deal with the issues of whatever happens next.  I just don’t fancy being a victim.  It’s not in my DNA.

But. I do know that all the above words apply.  My IQ wasn’t dented when some of my brain cells died. I just don’t like the vulnerability that the terms imply.  Would you?   I ask, because I wonder how often we apply labels to people that they don’t appreciate, and don’t realise they want to bop us on the nose for doing so (presuming they are more tolerant and less sarcastic than me). I don’t want to be called a survivor because I could have died.  I don’t want to be labelled a victim because I didn’t have a choice about what happened.  And I don’t want to be termed a patient because, at the moment, I see medical people more often than most other people do.  It’s not that I don’t know the words are correct, but they don’t describe me.  Not one of them.  I’m just me: the same me I have always been.

I am grateful for this.  However, I do have sympathy with you, if you know me.  Because I am still me.  Oh dear.  Poor you.  I’m afraid you will have to survive being a victim of this ongoing situation.  Be patient, eh?

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Post script:  I wanted to see if anyone else had written about this – someone always has.  Anyway, I just found this: Words and Labels. Exactly the same three words (even in the same order). I guess I’m not the only one then!!!

 

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Brain Stem and The Social Network

If you blinked then you may have missed it, but at the Stroke Clinic, whilst working out why the left side of my lips were still numb, Dr D called up the MRI scans of my brain on his computer again.  He decided that a shady spot in my brain stem must actually be another infarction.  Presumably a small one. I don’t know why they hadn’t thought about this before, because they knew my face (then) was numb but, you know, whatever… it wasn’t really important: heparin was the answer to everything anyway.  I didn’t need to know then; I’m not quite sure I need to know now, though it makes some things make a little more sense.

The thing that I’ve been thinking about is this.  My lips went numb right at the beginning, while I was on the floor at work.  So that must have been the first hit.  The brain stem must have taken the first hit.  And presumably, though it  had the second biggest impact (the big one being in the middle of the following night), actually, it must have been the smallest hit.  Thankfully. Because a big hit to the brain stem would have been quite bad news.  To the point that I don’t know what I think about that.  I don’t think I particularly want to.  Think about it that is. The rest hit my cerebellum.  If you are going to do this, then the brain stem is the place to avoid and the cerebellum is your best bet for survival, minimum impact and full recovery.

The Social Network, screenplay by Aaron Sorkin

I went to the cinema today.  I was going to see The Social Network with Jez but the logistics didn’t work.  (For my fellow West Wing devotees, it’s written by the very brilliant Aaron Sorkin, and you’ll be able to tell it’s his work.) Instead I went this morning, on my own, so I wouldn’t feel bad for whoever was with me if I couldn’t do it and needed to leave before it finished.  Though walking up steep stairs, without a rail, in semi-darkness to my seat made me wonder whether I would actually be able to leave in the middle… but it was ok.  The ads were not helpful.  They were loud and busy: I’d chosen the movie specifically because it wasn’t going to be like that!  But it was ok, and once the movie started it was fine.  I don’t think I could have done it 2 or 3 weeks ago, and that’s proof of how progress happens. You kind of stop noticing it until it means something else is back in place. I don’t think I’ll be doing any loud, busy movies in the next few weeks – which is a shame because the new Harry Potter is out and I think I’d like to see it.   Coming out of the film was interesting.  I texted a friend, “Movie was good.  Bit long.  You know I walked down steps without a handrail thinking I’m a lucky chick.  I can do that.  Isn’t it weird what we take for granted?”

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The one where i start to care…

I am not trapped in my body.  I’ve seen people who are and I’m sooooo not.  But I’m not appreciating it as much as I should today, because I’m getting bored.  Which is a drag.  I read the paper last night.  It was only the Saturday Guardian but I didn’t get round to it until late because it seemed like an effort.  Boredom pushed me to it in the end; that and making sure I could do it if I really wanted to.  I can and I did.  So I guess some trashy fiction might work soon.  I watched a DVD with Ben… well he watched it, I lasted about 20 minutes before my attention wandered irreversibly and I checked my facebook instead.  I could go out but it’s harder than I think it should be. I’ve been to the pub round the corner twice since last Monday and, while the arm there is more supportive than strictly necessary (not that I’ve done it without), I am aware while I am there that I’ve actually got to get back and I can’t say I don’t think about it before we leave. And it’s only round the corner.  And I’m completely reliant on a lovely people being with me.  Which is just utterly wrong on many levels.  So I’m dreaming of liberation – and I’m not talking a day trip to Paris here… just maybe a solo trip that isn’t a daily hospital run, even if its just to Westfield.  So I’ve also to start to working out ways to do it.  And there are ways.

For example, High St tomorrow will be achieved with Claudia by a cab straight from the hospital to the place where I know that M&S, H&M and The Gap are literally next door to each other, followed by a cab back.  It’s not even like it’s a separate outing or anything.  On Tuesday, there’s a suggestion on the table that we could do the cinema.  I know I’ve not managed a whole DVD yet but I’ve done Dr Who and Casualty, but it’s an outing.   Seriously, one takes what one can get!  On Wednesday I’m having lunch with a friend, and I’m going to use the same routine as the High Street to suggest going to one of my favourite places (I’ll blog it afterwards, but for those who have a rough idea, its my very rare treat place, the one where I usually order a simple plate of three-times-cooked-chips with a green salad.  The most bizarre bit of all being the chips are fine, but the green salad may have to go because of the quantity of vitamin k it contains, thus confirming this is a rather weird world at the moment!!!!).

Anyway, here’s the freakiest bit.  Apparently my GP – whom I haven’t yet seen – can write a prescription for a wheelchair.  Again, who knew??!! On the one hand I don’t want one as I can walk, thank you very much. On the other, it would mean I could go out for longer and on my own: for example, Westfield becomes possible. Jamie’s Italian is possible.  Del Aziz I’m not sure about, but I really would like their eggs benedict so I’m sure I can figure it out.  Hell, when my brain kicks good and properly, work might be possible faster too.  Now, obviously, I’m hoping this weird thought is forgotten shortly, out of complete lack of need.  But I’m thinking about it… Freedom sometimes has its prices.  Maybe, for a little while, this might be mine.

One more thing.  This is the first time that blogging what’s going on feels odd, and I’ve had to think about whether I really want to share this.  It’s pretty honest and makes me feel vulnerable not to be saying ‘its fine… I’ll be back at work in a week”.  Initially, nearer the critical bit, it was all short-term: crashing headaches and explaining how it all worked. Blogging meant I was released from saying the same thing 20 times to 20 different people who kindly called for an update 20 times a day, at a point where using ‘slide to answer’ on my phone was daunting.  But we’re not in that any more.  And none of this is as interesting for anyone, including me. But right now this is my life.  Though, I might not think about it too much that way because that eels like rocky ground.  Things change every day.  I’m incredibly lucky.  And I intend to stay that way.

So… I accepted pretty early on that I couldn’t control who knew the headlines and it that it wouldn’t be fair on my friends to ask them to withhold info (especially Kate… I know that was a tricky balance, thank you).  But, just for clarification, if you know where this is then you’re one of the people I don’t mind knowing what’s really going on. (And yes, people have asked me if they can forward the link because I inadvertently missed a couple of people out, for which I apologise. And yes, if I’m honest, I didn’t entirely appreciate that some of you were some of you before this, if you know what I mean, but I’m glad I do now!!).  Anyway, I thought I was going to facebook it for a lot more of my friends in due course, however, having posted last night I took it down after about 5 minutes.  It just felt so completely wrong.  This really is my life and I get to live it with whom I choose.  I have slightly less choices today than I did on at the beginning of the month and, until I get them back (which, don’t worry, is going to be sooner than even I think right at this moment in time), then amongst those people I know, I get to choose who gets to know how it really is in real time.  I don’t care about the strangers who come across this blog – one of the intentions is to have something there for anyone like me, because it turns out there aren’t many of us, and I wish someone else had done this – but I do care about the people I know, but not all that well.  There’s already 100-ish of you hitting this every day, so its not like I’m not feeling your moral support in its droves!  I don’t think I need the wider circle to know everything right now.

So if they ask, can you please thank them and  let them know I’m just fine and going great guns?  After all, it’s the truth.

x

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