Friday 24 May 2013

Still here

I realise that it has been over 3 weeks since my last blog post.

Many of you have contacted me recently to check I'm OK, so I'm sorry if I've been a bit under the radar and thank you for all being so lovely.

When I started to write this blog its main purpose was to enable me to keep people informed at a time when I was too overwhelmed to talk.  Over time it became a welcome outlet for the dizzying range of emotions and challenges that having a brain injured husband brings.

Recently it has started to feel as though it doesn't belong to me anymore, but rather is a service I provide to others.  I get that this is inevitable to a degree, but I got to the stage that I felt that I HAD to write it, rather than wanting to; it became a chore.

Add to that the roller coaster of events recently, both good and bad and I'm afraid I withdrew, battened down the hatches and waited to feel ready to write again.

I'm going to give it a go today and I suppose the best thing I can do in this blog is to update you on the last few weeks.

It all started to go awry on the 1st May with the news that a major London newspaper had picked up Jake's story from court papers and were going to run it the next day; did we want to comment?  This is absolutely the last thing we wanted and our solicitor stepped in and we hoped that it would run and then go away.  Which largely it has, with the minor blip of a bloody cheeky journalist wandering into our back garden to see if I wanted to comment as 'it's all in the public domain now Mrs K'.  Snotty cow, off she went, with a flea in her ear!

That weekend we went to stay with friends where there was some much needed silliness.  It also saw us take Jake to a charity in Bushy Park that provides a wide range of companion bikes and trikes to see what would happen.  I went without expectation, as the nature of Jake's accident and his lack of confidence meant that we didn't know how he would react.  Well, he surprised us all by hopping on a trike and peddling off, albeit very ungainly and slowly.  Bloody brilliant!  You'll never guess what we're getting him for his Birthday next week?

There have also been some concerns about Jake's health which has seen trips to A&E, finding him dazed, confused and bruised on the bathroom floor in the middle of the night and the regression of both physical and cognitive abilities that culminated in a CT scan and other tests.  The upshot is that his VP shunt has an intermittent fault which means that he is experiencing occasional recurrence of the hydrocephalus that kept him in a minimally conscious state for the first few months of his recovery.  This will require the replacement of some or all of the shunt and although I am glad we have an answer and a plan, I am gutted that he will need another surgical procedure.

Other notable events have included a bout of man flu (Jake's not mine!) and a failed attempt to take Jake off the anti-emetics.  As a friend who saw the results first hand commented, it was like "a Roman banquet at half time".  Life in brain injury land is certainly never boring!

That said, there is much to look forward to, with contracts due to exchange on the new Korving Towers next week and Jake's Birthday BBQ on Sunday; even the weather forecast seems to be on-side.

That's it for now; I don't know when I will blog again, but I'm bound to at some point, so bear with me!

2 comments:

  1. Well, I certainly empathise with the feeling that sometimes your blog isn't for you, it's for other people, and I can only urge you to seize it back for yourself. Don't let go of that feeling of exhaling because you have managed to articulate something you've been wanting to say for a while, or lose contact with all the people who have turned from strangers into loyal supporters. THinking of you and sending you lots and lots of VOLE.

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  2. I'm glad you're still writing, and it's your blog so it's first purpose is to help you in this crazy, uncertain, frustrating, exhilarating, unpredictable mixed up Brain Injury world. It's good to have an outlet, give & receive support, and, in time look back at progress. It gets to be what you want and need it to be.

    I think, for each person who shares their (or their loved one's) journey with TBI, this makes a world of difference. It's one more light, one more voice added to the collective souls finding their way through. I for one am grateful you're here. Thanks for sharing your light and journey with us.

    Blessings, Love & Peace,
    RH

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