Tuesday, 25 December 2012

What a difference a year makes....

Last year we were here:

this year we're not!

I wonder what I'll be posting next year?

Wishing you all a VERY Happy Christmas and buckets of peace and joy for 2013.

Tuesday, 18 December 2012

Bah humbug

This week has seen me rip the bumper off my beautiful car (which means I can't get to see Jake), the toilet become comprehensively blocked (ewww) and my special 'Christmas Cold' gift arrive.  Frankly I am not feeling all that seasonal, despite having adorned Korving Towers with an embarrassment of sparkly, tacky Christmas tat.

In a vain attempt to look on the bright side I can report that the new bumper will mean I lose the only scrape I had on the car, I know a very cunning way of unblocking toilets without having to call someone out and getting the cold out of the way now means I won't be infecting various family members over Christmas.  Oh, and it's given Jake a chance to be supportive which he excels at and which will make him feel good.

Nope, still feel grumpy!

In other news, work on Korving Towers is moving at pace and the plan is to have the majority of the work done before Christmas.  The builders are working incredibly hard and are cheerful, charming and polite, although I imagine the endless supply of tea and biscuits helps.  They are all sporting Santa hats this morning, so I shall get them some mince pies as well!

Jake is all ready for his move to the student house on Thursday (thankfully we were always going to use my sister's car for that!).  We made a cake together at the weekend to say thank you to the team at the rehab hotel and it took me an hour to clean up the kitchen afterwards; he couldn't quite get that you need to keep the electric whisks IN the mixture,  otherwise you pebble dash everything in cake mix!  I think it turned out OK though:

The main bit of news I suppose is that I have made a decision about the future.  At the last review meeting it was suggested that Jake could be in residential rehab for up to another 12 months.  You may think this is really selfish, but I have asked his team to work on the basis that it will be 6 months.  Jake and I have only been married 3 years and we have spent a year of it living apart since his accident.  He will still be able to access rehab and therapies during the day, but we both desperately want to be back together and so we are working towards him being back at Korving Towers by the Summer; 20 months after his accident.

Life isn't the same without him and I'm sure my seasonal spirit will return on Christmas Eve when he comes home for four days.

I hope you all have a wonderful Christmas and remember to cherish this time with those you love; you never know what is around the corner.

Ho, Ho....no sorry, can't do it ;o)

Monday, 10 December 2012

the patronise trap

As we have travelled along this strange brain injury journey, which has swung from a hurtle to a crawl and back again, I have learnt that you need to be really, really adaptable.  The problem with this is that I, frankly, am not.

I like structure and predictability; processes make me shiver in anticipation and I get no greater pleasure than from creating a task list or spreadsheet; I plan and prepare for everything in minute detail. For example, I have bought and wrapped my Christmas presents, the decorations are up, the cards are written and sent and the Tesco's delivery is booked for the 22nd. I have even planned this blog (I know, hard to believe).

Life in brain injury land doesn't work like that.  Life in brain injury land is like trying to quickly navigate the length of Oxford Street, blindfolded on Christmas Eve and tied to a Japanese tourist who wants to go in Selfridges...again.  You can't plan it or predict how it will work out. Anything could happen, none of the other shoppers are interested in helping you get there and you'd better hope you don't get trampled on or trapped in the middle of Oxford Circus.

So, on I go, bouncing off the shoppers, lampposts and beggars half heartedly dressed as Father Christmas, hoping for the best and keeping my fingers crossed that we reach Marble Arch in one piece.

The latest problem I am wrestling with on this bonkers, unpredictable journey is how well Jake is doing. Ha ha ha - I bet you read that twice!

Yes, I did say Jake's progress is a proving to be a problem for me. I have got so used to Jake needing help.  Until recently he's needed help to; stand, walk, sit, eat, choose, talk, read, write, understand, cope, remember, open and close things, lift and lower things, tidy up, go to bed, get up, get dressed, shower, shave etc. etc. etc.  He still needs support with most of these things, but it is more guidance and prompting than actual help and it seems to have happened when I wasn't looking!

This means I keep getting it wrong, very very very wrong.  In fact, I keep falling into the patronise trap. I don't mean to, in fact I 'mean well'...which is rubbish really.  What makes it worse is that I get seriously aggravated when someone else does this to him, particularly those who should know better; Dr's, therapists, nurses....and, err, well, me.

Jake is understandably irritated by this and it causes untold angst.  The man is a saint most of the time, but even the most understanding and forgiving soul gets pissed off if you repeatedly patronise them. 

So, this is my pledge; I will haul myself out of the patronise trap and will try to remember the extraordinarily intelligent, resilient and determined man who CAN do things for himself, rather than the brain injury deficits and frustrations (not just his!) that trip me up and lead to me fussing and mothering.

If you see or hear me doing this you have permission to kick me in the shins. 

Sunday, 2 December 2012

me, me, me

I am about to be really honest...really, really honest.  Sadly, it's probably just going to sound like a moan but this blog is about sharing the reality of our journey.  So here it is.

In the last 403 days I feel like I have become a non person.  Every part of my life is about someone else.  Every decision made is based on what is best for that person.  I am looked at with suspicion, pity and irritation by health care professionals who seem to think that I should know what I'm doing.  I don't.

I get up on a Sunday morning,  make a cup of tea and shuffle in my PJ's in to the lounge to watch the Andrew Marr show to find that a Health Care Assistant has put Top Gear on...again.  Oh, and they're sat in my spot on the sofa.

I make plans for Christmas dinner with my family which then get debated based on whether Jake will cope by people who will all have lovely, peaceful and private time at their house...HELLO, IT'S MY CHRISTMAS TOO!

I am expected to be able to plan every conversation in advance, anticipating topics and having images available.  News flash - this is not possible.  I am expected to be able to attend any meeting at the drop of a hat and to understand all the medical jargon and options and make sensible decisions.

I can't go where I want for lunch, decide it's a beautiful day for a walk at the beach, sit quietly on my own in a room, pop into Tesco's for some milk or have a lie in.

Recently a Consultant even tried to say it was my fault that Jake's medication hadn't been reviewed.  Seriously, how much are they paying you?!

I have to be a wife, an advocate, a financial manager, a mediator, a housekeeper, a proposal manager (yes, I still have a job). This means I am failing as a friend, sister, daughter, auntie, daughter in law, colleague.

At this point I would like to say that I love my husband more than anyone or anything else in the world.  I couldn't imagine my life without him and not putting him first is absolutely a non choice for me.  That's the easy bit.

I am only human though and, although it probably sounds childish and selfish, I am finding always coming second, whilst being expected to be a constant and devoted advocate and champion, a little difficult.

My switch is always 'on'.  I'm a bit worried that the fuse may blow.