Tag Archive for vertebral dissection

Victims, Tattoos and Survivors

One of our number has had a one-word tattoo done on her wrist.  It says “survivor”.

Others among us have asked if she’d mind if they copied her, such is the strength of feeling about it.

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I don’t want a tattoo.  I don’t consider myself a survivor in a strong sense of the word at all.  But I do understand those rallying – on other message boards – to remove the word “victim” that people often put after “stroke”.

Do I sound like a victim to you?  Of anything?

I’ve blogged about the power of labels before.  But other than the girls and their tattoos, and someone else pointing out very loudly that he “wasn’t a bl**dy victim, thank you very much”, I had cause to think about it all again the other day.

I was getting bloods done at the nurses surgery attached to my doctor’s surgery.  They were doling out flu jabs and, having had a stroke I’m supposed to have one.  When that flashed up on the screen the nurse looked at me kinda funny:

Weird,” she said, “This thing thinks you had a stroke.

“I did.” I said.

No, it thinks you had an actual stroke.

“Yeah, I did.”

You’re too young for a stroke.

“Yep.  Happened anyway. VAD.”

God, when?

“Two years and three weeks ago.”

Blimey.  Wait here a sec.

And off she went to the nurse in charge to find out what to do next.

We’ve a young girl here [she said this, I promise!] who’s a stroke victim.  She’s really young and she looks great.  Do you think she needs the flu jab or not?

“Well.  Stroke victims get it.  But let me check.”

Right… Besides the overuse of the word ‘victim’, check what?  And why do I get prickly every time someone uses that word in relation to me?

The Oxford English Dictionary defines a ‘victim’ as:

  • a person harmed, injured, or killed as a result of a crime, accident, or other event or action:victims of domestic violenceearthquake victims
  • a person who is tricked or duped:the victim of a hoax
  • a person who has come to feel helpless and passive in the face of misfortune or ill-treatment:I saw myself as a victim[as modifier]:a victim mentality

I suppose that whilst the first bullet point is technically factual, I tend to associate the word with the second or third bullet points.  As do, it seems, a lot of my new stroke-made friends.  And I suppose that’s one of the reasons we hate it.  

When it all first happens you are in other people’s hands.  Then you’re either helpless or having to make a conscious choice to hand over responsibility to someone else.  I was  definitely the latter; I fought to stay in charge even though it was flipping hard work until I finally had a neuro who told me exactly what was going on and that he was “taking me back to his hospital”. That was 19 hours after I got to the ED so it had taken some time for everyone, including me, to realise that it wasn’t nothing that was going on.  But after he said that I pretty much blanked out for 24 hours, probably because I knew I didn’t have to be in charge any more.  But as soon as you can – and in my case within a day or so, all heparined up, you take it back because – lovely as everyone might be – you’re in charge of you.  You might not be able to walk or even sit up, but as soon as you can talk – and luckily I could, if a little slowly for a while – you can be in charge of you.  

Does that sound like a victim to you?  No, me neither.  And it’s been 2 years people.  How long do you want to apply the label?!

Anyway, I got the jab.  We also worked out I was a little older than they thought I was, but anyone else who wants to think I’m still in my 20s may go ahead with my blessing! And I wondered if I should ask them to drop the word ‘victim’ from their stroke vocabulary.

I didn’t of course.  They were lovely and I didn’t really think it through very hard while I was there.  But there is something utterly disempowering about attaching that label.  In the same way, it feels somewhat overegging the situation to attach the word survivor in my case.

So victim is kind of insulting, if I’m honest.

Survivor definitely applies to some, but not to me.  

Most of us just get on with it.  Simple as.  No labels required.

Thanks though.

 

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The one where I move… and maybe write a book

moving house

I’m moving.

Out of the city.

Creating a new life.

It’s time.

If you’d told me when this all began that it would end up with me leaving my life in the city to find a new area, a new home, new job, new friends, and so on, I’d have told you to get stuffed. Mostly because I wouldn’t have wanted to believe that could be the outcome, rather than because it wasn’t true.

But it’s not just the stroke that’s got me to this point.

If you haven’t worked it out already, I live in London. I haven’t named locations much before for various reasons, and I probably won’t blog on where I’m going either. It’s a security thing. London is an unusual place. There are big, huge jobs here, and very expensive housing. It’s brilliant, and there’s also lots of free things to do. But it’s not sustainable for me in the long term.

Even before the stroke, I had a plan to move out of the city “at some point”. At that time I thought I’d commute into town for work for many years before finally bowing out of city life completely. But it hasn’t turned out like that.

As you know, I left my job last April. Exactly three months after I returned to work (part-time at first) exactly three months after my stroke. I’ve never gone into the whys and wherefores, but it’s what happened, and I’ve been finishing an MSc and doing a bit of freelance work since. But the house I rent is being sold and it’s time for me to create some lifelong stability for myself.  So I want to buy a house.

In London houses are expensive. Even with the brilliant salary I had before I was only ever going to be able to buy a cupboard in a location I liked or a small flat in a place I didn’t. To buy a two or three bed house with a little garden means making a big move. And I need that security. And I need a full time job to pay for it because that’s how one gets a mortgage. While my brain works again as it did before in thinking and doing capacity, I do find a need more control over my hours and pattern of work than before the stroke. That doesn’t mean I don’t work as hard nor that I work any less hours, just that I need to be able to have a little control over them. For example, if I have two full days of meetings and/or presenting/coaching/training big groups then I need the third day to be a very quiet one. I can still work but I’m not going to be able to repeat the previous two days that day.

Now, if you’re about to say, “Well I’ve never been able to do that, so now you’re just normal like everyone else,” – please don’t. I might shoot you. I’m so sick of people saying that. I might have always been your normal but it’s never been mine. And it’s my normal that I measure everything against, not yours. Sorry if that sounds harsh but after the 100th person has said it you just stop explaining….

So. The idea is to move out of London. Rent a place while I find a job. Get a job that’s a bit more provincial (and therefore hopefully a little more controllable than the 24/7 on call job of before). Buy a little house. Live. I know, it won’t be that easy, but I’ve worked out that even if I lost a big chunk of my old salary, the combination of my London-sized deposit and drastically cheaper house prices means it’s do-able.

I move on 30 June. For the following few weeks I’m going to take a holiday at the very beautiful and mercifully empty flat of an amazing friend in a seaside town. And then make the move to the final destination.

Oh, and I was thinking, should I turn this blog into a book in the few weeks that I’m there? I don’t know. I can download all the content easily enough…

There are two significant stories that are missing from this blog. The first is about a boy, and the second is the real whys and wherefores about why I left my job and what a cock-up one, or perhaps two, individuals who called themselves HR professionals made (needless to say this wasn’t my boss nor my boss’s boss, who were both 100% fantastic). Never before has it been so satisfying to be able to answer the statement, “Well, you obviously aren’t clear on the HR law around this,” with “Actually, my degree is in HR and I worked in this very department for some time before you arrived,” been so bloody satisfying.

Like I said, there was a lot I didn’t feel I could blog about!  In some cases it was things weren’t my prerogative to share (Liz Jones anyone?).  With regard to leaving work, I didn’t want to taint the innocent, and I wanted to retain my ability to rise above it all and preserve my relationship with an organisation – and many people – that I love. But, in hindsight, the work stuff was actually pretty outrageous and, besides, I might have a way to keep it relatively anonymous… maybe.

Anyway, I think I’ve decided I’m going to write it. Mainly because I’ve been asked to, and the boy surprised me a great deal by saying he thought that I should.

Whether I do anything with it afterward, well that we shall have to wait and see!

Wish me luck with the move!

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Retrograde filling anyone?

It’s no wonder my GP hasn’t got the letter from Dr3.  The copy arrived at my house today, but the original has been sent to a surgery near a place I lived for about 5 minutes, 5 years ago.  Helpful….

It also has jargon that I don’t understand.  It’s not surprising, I suppose, given it’s written for the GP, but it’s unusual these days.  A google search doesn’t even convince me that I’ve worked it out.  I get the bit about having a number of embolic lesions secondary to a left vertebral dissection.  I get the bit about the artery still being occluded.  But what is retrograde filling all about?  Do comment if you know. I can hazard a guess but guessing isn’t hugely wise in this case!

As a p.s. he’s written, “I will repeat the scan when I see her again in May”.  I’ve been emailing the outpatients people to ask when the scan is as, presumably I need that before I see him.  Kind of a waste of both our time to see him and then scan and then see him again, wouldn’t you have thought?  His secretary seems to think that he’ll arrange the scan after I’ve seen him.  I’m thinking I might drop him a note and mention the “new” GP address and ask about the scan timing.  I suppose I should also photocopy the letter for my actual GP, given I have no idea who “Dr South” is.

Still, at least it arrived in time for me to take it to Hospital Number 2 and Dr2 tomorrow… I know I’m supposed to tell him my case isn’t his any more and he’s not allowed to make any decisions, but I suspect he’ll have the answers.

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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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INR = 1.7

My target INR=2.5

My theraputic INR = 2-3

My actual INR = 1.7, down from 3 last week, i.e. it bounces around without apparent rhyme or reason.

Go figure!

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Liberation from the bits I missed

My friend Andy L suggested I sent out a message suggesting more or less the email below.

I didn’t receive a single negative response. In fact, I got positive responses. It feels like partial liberation from the bits I missed!

From: [Me]
Sent: 18 January 2011 09:24
To: [An Extended Team]
Subject: Email advice :-)

All,

I’ve now deleted around 4000 emails.  I’ve read others.  I’ve even actioned a few more.  But I’m about to copy 600 emails into a folder marked ‘should probably read’ and mostly they are from you.  It would take me an awful long time to work my way through these, so…

Could I possibly ask, if there is an email in there containing info that you think is particularly important, could you either tell me to go find it, resend it, or verbally update me over a coffee (which I’m happy to buy!)? This will let me prioritise issues the issues you think are most important while giving me time to do the work for meetings and events in the diary, which I’d otherwise have to cancel/decline!

Thanks lots for your help!!!

There is so much going on at work and it wouldn’t be at all appropriate for me to blog details, so I’ll simply tell you about the post-stroke changes/observations.

It takes me longer to walk to places, like between meetings and to the colour printer which is ages away.  Correction: it can take me the same amount of time, but if I keep powering around my head gets lighter and I feel like I’ve taken a backward leap. So I have to constantly remind myself it’s not a race and I need to walk at a slower pace. Which is oddly frustrating, especially as I keep forgetting!

I answer a lot of ‘how are you doing today?‘ questions, and I have to think ‘how am i?‘ because I’ve not considered it much until someone asks (again). Luckily my team is well over this!  But people always apologise for asking and I really don’t mind: it would be worse if they didn’t care at all!

I’m less inclined to get emotionally involved in what’s going on (or what people think) too: I’m advised by everyone else who’s had a bout of leave that this wears off very quickly, but I’m enjoying it, because I think it makes everything easier for me and probably for everyone else too.  Passion is good, but holding things with a loose grip can also an empowering thing.

So, anyway, enough about me, how are you today?

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Life isn’t fair

No, I’m not whinging that ‘life isn’t fair’, I’m just merely observing that it isn’t.

Bad things can happen to good people, good things can happen to not-so-good people, unplanned things can happen to those that prefer stability, nothing can happen for people who love change.  We can’t control our worlds when sh*t happens, we can only seek to influence them, and chose how to react.

My model for how to act with grace comes from someone called Catherine.  I don’t think she’s reading this, though some of our friends are, and they will know why, even if it was a long time ago.  I have to remind myself to act with as much grace as I can muster on a regular basis and, you know, I usually find it is rewarded (sometimes eventually!) with grace in return.

Why am I waffling? Because I’ve been out of some loops for a little while now and I return to them with slightly fresher eyes.  I have a surprisingly greater tolerance for some things, as a result of time away and what’s been happening, and find I hold some things less tightly than I did a few months ago, and that some things I view a little differently.  Not much differently, but differently.  Nothing has changed, except that it has.

Grace has always been an important concept to me; it’s something I covet even more than patience.  Those of you who know me will know I’ve always wanted patience.  I have a little more now, but only because I still move a little slower, and I suspect that I will lose this slight increase in tolerance shortly.  I just hope the little gap it leaves is filled with grace.

That probably doesn’t make much sense to you, but it’s what’s going on in my head right now, and this is my blog, so I’d love some grace, if you have any going spare.

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The point of an unread book

I have a large pile of blissfully unread books on my bedside table.  See:

Some of them I had before ‘the incident’, (e.g. the Blair autobiography: a.k.a masterclass in managing crises).   One of them I got as a result of the incident (Don’t Leave Me This Way Or When I Get Back You’ll Be Sorry seemed like it might be my kind of book).  Some of them are recommendations for my MSc (e.g. The Psychology of Military Incompetence and The Road to Kandahar). One I got because of a friend in need (Shoot the Damn Dog).  And some are delicious presents. Eat, Pray, Love sent by Claudia who says I finally have to read the book everyone else has read; In Tearing Haste was part of my birthday present from my dad to indulge my forever fascination with the Mitford Sisters (which, if you’re reading, is actually all your fault, Mary V). The others just looked interesting.

The irony is this, of course.  When I was properly sick, and had loads of time available to read, I couldn’t read.  Well, I could read the words and tell you what they meant, but reading the words didn’t tell me the story in the way it usually does.*  When I was less sick I couldn’t be bothered to read because it took too much brain power to do it.  When I was even less sick I had other things to do.  And when I got back on track I had essays to catch up on.  And now I’m back at work, as well as the essays and a pending dissertation, there is a need to turn lights off to go to sleep early without picking up a book which will keep me up until the wee hours.

So the books are still there.  Unread, unloved, and waiting to be read.  I might slip through one or two before the end of the year but, basically, I think my beautiful pile of pages is going to grow right up until my MSc dissertation is handed in.

Until I started my MSc I’d literally read every book I owned, and I own a lot of books, and I also walk to and from work so there is no tube travel time included there.  Now I have little piles scattered across the house, with the plum prizes on the bedside table.

I look at them.  Occasionally I decide I can take one of them to the bath instead of an academic paper and a pen. But I haven’t actually made time to sit down and read them.  There are too many other things to do.

Which got me to thinking, in that existential way that one does at 6am on a Saturday when they are awake, but know that turning on a light and pulling out a book would be a dumb thing to do at that time in the morning when there’s resting to be done…

What is the point of an unread book?

Roll with it for a while… ponder it… see what you come up with, perhaps.

———–

* This is actually quite hard to explain… I could get to page 20 of a book and have no idea what it was about.  I could name the characters and tell you what they were doing. But I would not have thought about why they were doing it in a way that makes the words a story.  For example, I’d have had to go back and look and work out – deliberately – why they were calling the police, even though I’d just read about the discovery of a dead body.  And I wouldn’t even have clocked I didn’t know what was going on, only that it wasn’t having any fun reading it.  Um… does that help explain it?  Who knows, but it’s all I’ve got so…!

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The Follow-up Scan

I’m not even surprised by the chain of events leading up to the scan today!

One of the benefits of the Cadiss trial is a scan at 3 months to see if the artery has healed (and one can come off the warfarin early).  This is what happened over the past few weeks to get to today:

  • NHS Letter 1: Appointment confirmed for 12 Jan
  • NHS Letter 2: Above appointment moved to 5 Jan
  • Conversation: Cadiss contact realises above appointment is for the consultant to discuss the scan, but the scan isn’t booked yet. 5 Jan cancelled.
  • NHS Letter 3: Appointment letter for 26 Jan.
  • Conversation: Cadiss contact says she’ll book the scan for before 26 Jan
  • Text from Cadiss: MRI booked for 14 Jan
  • NHS Letter 4: MRI booked for 31 Jan
  • Text from Cadiss: Ignore the letter re 31st
  • Appointment: Arrive to find they haven’t booked an MRI but a CT.  Text Cadiss contact to say I’m going to go with the flow.  She says she’s sending someone down to sort it out.  Nurses rush around and Cadiss decides a CT will do fine.  CT happens.

Let’s hope the appointment on 26 Jan happens too!

And finally, a lovely pic for you, because if I have to do that stuff then you have to see it (Kate)!  They put a cannula in your arm so they can shoot up contrast dye halfway through the process.  But this time when they removed it we couldn’t stop it bleeding.

That’ll be the warfarin working then.

nice...

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57 weeks in credit

Yep, being back at work is tiring and I’ve not even got into it yet.  Yada, yada, yada.  But then, I couldn’t walk three months ago…

Besides, there are far more important revelations to share.  Oh yes…

I’ve worked in my present job for more than 8.5 years.   Technically, I’m contracted to work a 35 hour week.  Like most people who work there, the “technically” is irrelevant… we all work a lot more than that.  It’s peaks and troughs but I can confidently say that if I said that I worked, on average, an extra hour a day, I would be being massively conservative about the overall impact of that extra-ness.

Why am I telling you this?

Because I keep feeling a tad guilty that I haven’t been there.  But someone told me to do the maths…

I’m contracted to do 35 hours a week.  If we conservatively estimate an extra hour a day, that’s 5 hours a week.  I take 5 weeks holiday a year, and those weeks don’t count.  But based on a 47 week year, for 8.5 years, that’s 1997.5 hours. Which is the equivalent of 57 contracted weeks.

That’s, um, well over a year!

Good thing they’ve never implemented flexitime. I know someone in a government department that works on flexitime and takes, more or less, a day off a week in lieu….

So basically, I’m not feeling guilty any more.  Because really, if I have to think about it that hard because of my morals, well, morally, I guess I’m still in credit.

Along with 2/3 of the organisation.  A proportion of whom put in more far hours than I do.

Of course, this is where someone corrects my maths….

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