feeling like a pawn in the multi-hospital consultant chess game of bed politics....and aiming to escape home before it is won or lost!

(edited post as for some reason my picture disappeared!!)

Humming the Great Escape Theme..... I'm bidding my escape bid...... 

We'll see if it works...

Sorry for abandoning you for so long, there's lots to update you on. 

I'll do that when i get home! :) 

Back soon (I hope!!)

Random (very) early morning philosophical mutterings...

Having spent over 11 months in hospital as a  patient out of the last 13months, I've had quite a lot of time to think about things, and have learnt a great deal, particularly about myself. 

I've realised just how much we take our health for granted, and also - had time to think about who and what are the important things in life. It's at times like these that you learn who your real friends are. 

I'm pretty ashamed to look back and think about what things that I used to get wound up about, whilst not really making the time or taking the effort over the things that actually matter. We're all so caught up on the treadmill / hamster wheel of life - and that's a situation we should try and avoid. I'm certainly trying to change my ways.

I got sent this poem a while back...  I think it sums up what I'm trying to say far better than I'll say it! 

Have you ever watched kids on a merry-go-round?

Or listened to the rain

Slapping on the ground?

Ever followed a butterfly's erratic flight?

Or gazed at the sun into the fading night?

You better slow down.

Don't dance so fast.

Time is short.

The music won't last.

Do you run through each day on the fly?

When you ask how are you?

Do you hear the reply?

When the day is done

Do you lie in your bed

with the next hundred chores

running through your head?

You better slow down.

Don't dance so fast.

Time is short.

The music won't last.

Ever told your child

we'll do it tomorrow?

And in all you haste,

No see his sorrow?

Ever lost touch,

Let a good friendship die

Cause you never had time 

to call and say 'Hi'

You better slow down.

Don't dance so fast.

Time is short.

The music won't last.

When you run so fast to get somewhere

You miss half the fun of getting there.

When you worry and hurry through your day

It is like an unopened gift.....

Thrown away

Life is not a race.

Do take it slower.

Hear the music

Before the song is over.

I'm afraid I've no idea who wrote it... but I think it is beautiful...

Counting Sheep....Peace and quiet all around, as everyone is 'asheeping'! lol......

How can nights be SO long, and I be SO tired...yet still not be able to sleep? I'm sleeping a bit better than I was in hospital, but it is 3am - and thanks to feeling rough and a bit... um... meh - I'm now awake, and unable to get back to sleep.I must have half of Europe's sleep shortage!

After laying there with my eyes closed- trying to wish myself to sleep...

I've tried all the usual - music, warm drink, reading....  

ended up trying the old trick of counting fleecy farmyard creatures... 

But sadly all with no success...

So decided to hop online, and say hello!

It's eerily quiet, as everone else is asheep

 (oops, sorry... I meant... asleep). Even Frerbert... 

He's tucked up - with his teddy! ;)

Right - think it's time to try inspecting the inside of my eyelids once again.....

wish me luck.... more in-depth post after some ZZZzzzz's :)

xx

Wahoooh! Celebrations!!

Well, Many apologies for the lack of posts lately....I promise I'll try and do a 'catch-up' post explaining my lack of communication.... but it's not due to me being re-captured.... 

Because actually, I'm still at home!  Things aren't great... but I'm just pleased to be out!

Friday marked 4 whole weeks out of hospital, which sadly... is a bit of a  record for me lately, or maybe even this year! (Oooops... Bad Body!)

So...I thought a little Celebration is in order! (Or more precisely...two....) as I couldn't decide between the original 1980 Kool and the Gang version....

or the 1992 Kylie video from TOTP....

Apologies for my indecision. 

I'm also not quite sure what's worse.... The fact I had already been born for the first.... or that I was 13 and can remember watching the second! Am certainly feeling my age! lol.... ;)   But either way.... am glad to be doing that from home! yay! :)

Will try to be a better blogger soon! x

a long hard day....

Well - apart from the pleasure of catching up with a few friends, and some people who've looked after me in one way or another so much that they know me pretty thoroughly.... who it was nice to say hello to whilst I was on my 'tour' of Derby for out-patient appointments ....... I almost wish I hadn't got out of bed today. 

I had two hospital appointments today...neurology and ophthalmology...and a more spontaneous meeting with the resp consultant.

The ophthalmology consultant told me that I've probably got damage to my optic nerves.... caused by the reason I that I'd needed the brain surgery in the summer (high pressure arround my brain, probably caused by the steroids I've had to take for my asthma over the last few years) .. which explains a few things.... why my visual fields have got constricted causing a reduction in my peripheral vision, why I'm having problems with my vision itself, why my pupils don't do the right things in response to the light from a pen torch (a relative afferent pupillary defect (RAPD) for the medics amongst you)........and for the non-medical people - normally you get them both constricting to a smaller size as the torch is shone in either eye.... but in me-one of my pupils actually gets bigger after the torchlight is swung on to it, the light moving across from the other eye. This is a positive swinging light test - and why I was loved by the medical students last time I was an in-patient... ironically I don't think I've ever seen an RAPD, yet frustratingly for me...it can't be seen in a mirror, as you need to see both pupils at once..and I don't know if you've tried comparing both of your own eyes in a mirror.... it's a tad tricky!! 

Anyway - after finishing at eye clinic... I hopped on the hospital shuttle bus, lugging my multiple volumes of hospital notes all wrapped up in big envelopes (see previous post about me wanting a time machine!...as my second appointment was on a different hospital site on the opposite side of the city, without sufficient time to give medical records time to transport them between!) and to my pleasant surprise met up with one of the resp ward sisters on the bus... so had a nice chat, and was relieved of the burden of carrying my notes :) Thanks SrU! 

The neurologist was lovely, but sadly didn't have a lot more productive information to add to what ophthalmology had said. Basically, I've got to just wait and see what happens.... keeping my fingers crossed that things improve...otherwise things like driving are going to be out of the picture in the future, for longer than the 6 months after the operation that I'm currently banned for. 

Quite thoughtfully though - my next appointments with both consultants have been arranged for the same morning in the New Year! Odd to think that 'Next Year' is only a couple of months away!  Where has 2008 gone? I know I've spent the vast majority of it cooped up in a hospital bed... but still..... ? 

I carried on with my social tour... and popped down to the MAU (Medical Assessment Unit) to say hello to a few people, who were just to be honest.... pretty overjoyed to see me in a situation when I wasn't being admitted, or already admitted and really unwell! I was approached by the resp consultant who'd be down there for some other reason, and had seen me. He wanted to discuss a couple of things.... my lungs, and the one thing that came as a bit of shock.... potential return to work date.... well, to be precise.... not the topic..... more the dates themselves...which were up for discussion. It was pretty much a case of his best case estimate was what I'd been preparing myself for as a total worst case, latest possible return to work date.  :oS 

I was very glad to be being driven home by a friend, as a fair amount of de-stressing went on.... and discussions of the consequences of me of being told that potentially it will be August before I'm going to be considered well enough to think about getting back to work.... and maybe quite a bit longer. I love my job, so the thought of being away from it for so long is pretty unbearable.... I've already been off almost 14 months. 

I know I've been really sick, and had a tough couple of years - and guess this might sound a little silly as I'm talking as someone who felt like celebrating on Fri, having been out of hospital 2 whole weeks...but couldn't because I was too damn tired(!!)... but.....I just had NO idea he was going to think I'd need to take that long off work...so it came as a real shock.

Oh well --Guess, I've just got to take things one day at a time for now......

0600hrs..... As in the movie lyrics say - what's the '0' for? 'Oh' my god its early!!

Wow! what a shock.....

I'm having to get my lazy butt over to Derby today for a couple of hospital appointments (Well, am actually being driven over - so cant complain!)..... the first one being at 08:45 - so my alarm went off at 06:00hrs..... urghhhh! having been a lady of leisure [hmmm - that almost sounds wrong!! ;o)] at home for the past 9 days, I've been living life to my own clock, which has rarely meant getting up before 10am! 

So, 06:00hrs - a BIG shock.....  especially when we've got no milk for breakfast... so we're possibly going to have to subject ourselves to a  McBrekkie en-route!

My chauffeurs are dropping me off in Derby then heading off to somewhere near Sheffield to go paddling (that's kayaking to those who don't know me and my housemates..... not dipping their toes in the Sea!)

I'm very grateful for my lift - as with the appointment being so early.... trying to get over to Derby by public transport would be pretty hard. The reason for the first appointment being so early....

..... my lack of in-built time machine. Initially, I had one appointment at 11:00 at one hospital in Derby, and the next..... fifteen minutes later... across town, around the ring-road at the other hospital!!! Thankfully, the eye-clinic and neuro clinic appointment staff at the hospitals saw the impracticalities of this, and were willing to swap a few things around for me!

Right - I best go and get on, as  I don't tend to manage things quickly at the moment! 

Home sweet home....and time to swallow my pride....

Firstly, apologies for the delay in posting.....  but I've been somewhat busy, doing that exhausting activity of being at home! :) 

As always - I couldn't wait to get discharged, but I've had a few niggling concerns since my last patch at home - when I took a few tumbles down the stairs due to generalised weakness, double vision, poor balance and in part, my brain thinking it was still controlling the fit strong body it used to! I'd found being at home surprisingly difficult - even just in doing simple things like standing for a decent length shower, or just doing day-to-day activities like preparing a simple meal.  That's a pretty hard thing for a 28 year old to come to terms with - especially this one.... who's fiercely independent and in a not so distant past was more often than not found with her bum sat in a whitewater kayak! So....the concept of a stair assessment, and having to chat with the occupational therapist about the things which were going to be difficult and what i might need some equipment at home for. Hmmm....  think it is definitely time to swallow my stupidly large stubborn sense of pride and accept whatever is going to help my recovery.