Tag Archive for friends

This one’s for you

I just got off the phone with my friend, M.  M is one of the rather amazing people who, when I was in hospital, received a text that I was ill at about 7am and was at the hospital before elevenses on the same day

M came to the afterstrokeparty on Friday.  She tucked her small people up into bed and dashed out of the house as soon as her husband got in from work, which was really rather late.  When she arrived she couldn’t see me.  As she searched, a woman she’d never met before asked, “Are you looking for [my name]?”  When M said that she was, the stranger pointed her in the right direction.  Then M went to the bar to buy a drink; it was really busy. Another woman also waiting an eon to be served, and again a stranger to M, asked if she’d like a drink while she was ordering a round.  M had met neither of these people before the party, yet within 5 minutes she was in shock at how truly lovely you all are.  She felt so welcome and looked after by that she had enough of a glowy feeling that she had to tell me all about you.  Because we are talking about you, my brilliant, wonderful, friends who look after me but also perfect strangers who look a tad lost or like they’d appreciate a drink.

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Furious and sad, at 3am

Well, I guess the ‘i can’t really be bothered to be bothered’ phase is over.

I’m furious, and I can’t even tell you why.

There is good advice out there for people like you (who are well) dealing with people like me (who are just about well again having been very sick).  Taking this advice can help you to avoid introducing your friend to what it’s like to feel like they’re not trusted anymore, and strip them of the dignity they’ve already had to fight to get back once.

If you’re reading this because you’re dealing with a work colleague, there’s some good stuff on the Health & Safety Executive’s website.  It includes quotes like, “Empowering an individual to influence their return to work can significantly boost their well-being and confidence,” and “Don’t make assumptions about your employee’s situation” .  They’re a useful reference as googling for this on a friendship basis produces little worthy results… I can find useful stuff like, “Ask the person what you can do to help and listen to their answer. Never assume that what you think is helpful is what they will find helpful,” and “They and their condition are always changing,” (which is true every week post my stroke has been like entering whole new era) but they are not official sites and their advice is a often bit muddled.  However, there is one paragraph that means a lot to me, and is my top tip for dealing with me this week:

What is important is that the person who is ill not lose his or her dignity. Illness carries with it a whole gamut of feelings: fear, anger, disappointment, hopelessness, sadness, grief, perhaps guilt or even shame,,, People often feel dependent and often resentful about that dependence. When you are conscious of these issues, you will more likely respond in a sensitive way.

In the whole time I’ve been sick and off, I’ve not been stressed about it for a second.  Now I’m better I’m dealing with people who seem to be making it their mission to decide they know better than me (or my medics) about what is right for me. I know – I really do know – it’s because they care and they want to do the right thing; they don’t want to be seen to do the wrong thing either.

But you know what, when this first happened my dignity went out the window.  I couldn’t stand up, and then I couldn’t balance so you don’t need too much of an imagination to work out some of the things I couldn’t do by myself when I was first in hospital.  But dignity there was neither required nor important.  Well now I’m back, and I’m pretty much back to being as normal as I ever was, and dignity is both required and important.

Please think carefully when you’re making suggestions to friends (or colleagues) who may be in my position: resuming normal life after a period of sickness that was not my fault.  I’ve worked hard to get to this point, to reclaim my independence and my dignity.  Do you really want to take it away from me?  No, I know you don’t; so please be kind and, most importantly, listen. Don’t make any assumptions or think that you might know best.  Invariably you won’t.  Well, not unless you have a medical doctorate.

(p.s. Be very careful re this in a work situation.  For my sins, I used to work in HR (don’t tell anyone) and the whole thing about not making any assumptions is really, really important.  Now from the other side of the fence, I’d say it was kind too.)

I was reminded today of a very special lady that I was fortunate enough to work with a couple of years ago.  We shall call her N, as I haven’t asked if I can include this (though I am certain she won’t mind as her story is already on the net by her own doing).  N has sickle cell anaemia (have a look here and here for two experiences).  For some, sickle cell can cause much pain and inconvenience their lives to the extent that can severely impair the way they are able to live their lives.  Yet N taught me some amazing lessons that I’m only now realising and valuing as much as I should.   I think they go like this:

  • N is in charge of N.  She’s good at it.
  • We’re not in a position to make any assumptions about what sickle cell means to N: everyone’s experience is different and hers is personal to her.  Don’t assume that because you’ve read the wikipedia entry, you know what the deal is
  • The only person qualified to know if N is overdoing things is N.  And her doctors.  Whom she will consult/visit/ambulance to if she knows she needs to.
  • She doesn’t appreciate being second guessed.  A question is welcomed; concern is touching; your non-medical-trained-advice is smiled at, but asking a question is going to work better for you both

They say that 50% of people who’ve had a stroke suffer depression.  It’s probably higher among younger people.  I imagine mostly this is because if it’s really bad, you have lost more than if you’re older (?? That sounds patronising, maybe I don’t mean that). But in my experience the stroke isn’t the problem.  The problems most likely to send me off into depression were (1) the stroke ward after I got out of the hyper-acute unit, because it was mixed with the geriatric unit, and (2) feeling undermined and second-guessed and by people who I’m quite sure love me but are also thinking that they know better than me.  Despite the fact I’ve been living this 24/7, 1440 minutes a day, for 2 months and 4 days.

I know I shouldn’t blog this one.  But I know the main person concerned does not know that this blog exists.  And I’m pretty sure that none of you know them.  So it’s fine.  I’m desperately trying to come up with a way to let them off the hook; for them to be able to move on – with my information rather than their notions – having not backed them into any corners.  It’s hard when I feel backed into a corner myself, but I have to be bigger than that. If I can’t be, how can I expect that of them?

It’s just utterly ironic that the first time I get stressed about anything, it’s about other people’s issues on preparing for the good bits coming back on line.  It’s sad, and funny, and sad again, because I know it’s done in love, and yet all I want to do about it is cry and scream.

Though tears stream my cheeks as I blog at nearly 3am, so I guess I’m mostly upset.


From Germany with Love

I believe I’ve told you before, probably several times, that my friends are gorgeous.  Not only do you show up, but you skype, email, call, send Cherry Ripes from Oz (Kath) and don’t make me feel like a complete cripple.

One friend came to stay from Germany when I’d been out of the hospital for just a few days, with her husband and 9 month old baby (whom I’m still claiming is named after me!).  They very sweetly cooked and generally made sure I hadn’t quietly drowned in the bath, while on their holiday.  It was so nice to have them here, I may have shed a tear when they left.

Today I received a package from Germany and from said friend – see below.  I’d like to point out she proves my point about the gorgeousness.

Thank you Claudia. And everybody else.  Particularly those of you who’ve been here in body as well as in spirit.  For everything.

from Germany with love


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.


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