Wednesday, 29 August 2012

desperately seeking motivation

Currently I am experiencing a serious lack of motivation.  I seem to have run out of steam.  There is still plenty happening, I just don't seem to be able to get excited, I feel a bit flat.  I am neglecting everything; the garden, the house, my course work, friends and family, my book, my get fit regime. Clearly I need to do something about this or I'll be as useful to Jake as Robert Mugabe at a peace convention.

My sophisticated plan to combat this can be summed up very simply; get a kitten and book a holiday. So that's what I've done!

Merkin (snigger) is a 5 month old black kitten who spends his time shouting, annoying our other cat Milo and racing around like a loon.  He took to Jake immediately and the two of them spent last weekend amusing each other.  He's cute isn't he?

Puerto Banus is where I am going for four nights in mid September.  I am going completely on my own (eek) and plan to spend my time lying by the pool, reading, sleeping and walking.  This is all a bit of a revelation as there is absolutely no way I would have been happy to leave Jake for this long 8 weeks ago.  It's a real testament to how amazing the team at the rehab hotel are and how happy and settled they have made Jake.  A huge thank you to the friends and family who are going to spend time with my Jake that week so I don't need to worry about him.

In other news, I start work again on the 1st October for 20 hours a week and the few adhoc hours I have done over the last couple weeks have reminded me that actually I do have a brain and it is good to use it!

Hopefully all this will help me to get back to being me so I can continue to be useful to my gorgeous Jake and keep on keeping on.

As I sit here writing this I can hear banging, crashing, swearing and some hilarious singing along to the radio.  Yes, I've got the builders in.  I have, sadly, had my last, long soak in our bath which was ripped out yesterday to make way for a wet room that Jake can safely use. I have spent many happy hours choosing tiles and fittings and generally irritating the builders by repeatedly changing my mind; it's almost like having Jake here to annoy!

That said, I am still able to annoy Jake on a regular basis as I am at the rehab hotel at least twice a week and he usually comes home for 24 hours each weekend, so plenty of opportunity to be irritatingly wifely.  

The good news from the rehab hotel is that Jake has been assessed as ready to transfer off the behavioural pathway and onto the mainstream rehab pathway, which means stepping up the therapy and hopefully the progress.  As a non medical professional I am still regularly wrong footed and upset by some of Jake's behaviour, but they continue to reassure me that it is perfectly normal for someone with Jake's deficits and they will continue to work with him to help him to manage this.  

The most upsetting aspect of this is other peoples' reaction to Jake's outbursts; people who don't understand about brain injury and assume that the behaviour is the man.  This led to me wanting to repeatedly smash a haughty, thoughtless receptionist's head against her desk at the ortho clinic we visited yesterday.  Apparently Jake's behaviour would 'frighten the children' they sometime have visiting and it 'wouldn't be fair' for them to have to be there at the same time as him.  Well guess what; there is nothing 'fair' about any of this.  Jake didn't choose to be knocked off his bike by a careless driver, he didn't choose his severe brain injury and sometimes he is so anxious, confused, fatigued, overloaded and frustrated that he looses control.  No, not fair at all you snotty cow.  Thankfully I'm a big believer in karma, so I'm confident that she'll get hers.

I suppose these are things we will need to get used to; rest assured I will continue to fiercely protect my beautiful boy from these idiots; he deserves so much better from the world.

Maybe that should be my motivation?

Sunday, 5 August 2012

Noughts and bollocks

Well people, its been another roller coaster week.  You'd think after nine months things would have evened out and, as a rule, they have.  Every so often though we are reminded that this is no ordinary situation and standing in my PJ's at 11:30pm on Friday night chatting to three paramedics was a fine example of this. 

Jake has a UTI (bladder infection to you and me).  The good news is that they no longer overwhelm his body and he copes much in the way we would.  The bad news is that any infection can trigger a seizure; we haven't had a seizure for months and were all hoping that they were either easing off (as they sometimes do), or at least being managed by the cocktail of drugs Jake has to take.  Sadly this was not to be and so, in bed on Friday night, Jake began to spasm on his left side. Bugger.  

A seizure wouldn't normally require an ambulance; we are lucky in the fact that Jake's seizures tend to be short lived and self terminating and the treatment is nothing more complex than lots of rest.  The problem is that Jake's difficulties with language mean that getting a clear response to a question is difficult. So, when Jake clutched his chest and was asked the question 'do you have chest pain?' his answer of 'we think so' put together with the spasms being mainly in his left arm and his having an existing heart defect, was sufficiently worrying that we didn't mess around.  

The ambulance arrived within three minutes and the crew were absolutely fantastic.  Lots of tests confirmed that thankfully it was 'just' a seizure.  Jake was brilliant up to the point when I needed to pull the ECG pads from his body.  Apparently this hurts quite a lot...apparently he doesn't like me very much!!

Ho hum, thems the breaks!

But wait my hopeful friends; there's plenty of good stuff to report as well.  Three excellent examples being;

1. Jake no longer suffers the extreme distress we experienced on the journey to and from home at the weekends.  The psychologist travelled with us on Friday and is happy to conclude that this distress was triggered by over stimulation and not trauma as we had feared.  Now that he understands where we are going he no longer has to focus on it, reducing the stimuli and making him calmer.  

2. The catheter is coming out (woo hoo!!!).  The bladder retraining has been going really well and they are going to take advantage of the antibiotics he is taking for the UTI, which will help him heal and manage the change over.  Fully continent people, oh yeah!

3. The bit of his brain where humour lives has decided to rejoin us.  Sarcasm is making a particularly spectacular return, most notably in my direction!  

My favourite example of Jake using his special brand of Korving humour is from a therapy session with his fabulous key worker Sarah (I am hoping to adopt her).  During one of his regular sessions in the standing frame Jake was being distracted by a game of noughts and crosses (apparently standing in a frame for 15 minutes is pretty boring, no matter how good it is for your ankles).  The frame has a table attached to enable this kind of distraction and two games had already been played.  Starting to tire, Jake was encouraged by Sarah to play 'just one more game'.  You can see Jake's response to this request below.  Yes, that's right, he wrote 'bollocks' in the square.  

He may have dysphasia, but it seems that he has no problem communicating when he really wants to!

He's pretty amazing, isn't he?