Still here: Latest blog from: hopegoesupanddown... - Headway


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Still here


Latest blog from: - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain injury.

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!

5 Replies

i would hold of and write when you want, as there is to stressful when things become a chore or an obligation.

as for the reporter name and shame em, scumbags

Sorry to hear about the press intrusion....pity there wasn't a hose handy !

It's a shame about the shunt problem but it's good that you now know the cause of the problems Jake's been having. You sound really exhausted and it's not surprising with everything you've been dealing with.

However, the trike incident sounds's good that you keep creating these diversions ....for both of you.

Happy birthday to Jake for Sunday and I hope you all enjoy your barbecue. :-) xx


Hey there - good to hear that you are OK and that you and Jake are finding some good times amongst the challenging times - the trike must have given a sense of freedom, which must have been lovely......what a fab idea of a birthday pressie, I hope you all have fun birthday celebrations.

Cant believe the press - I don't blame you for your approach to them, they really do not care. Ignore them and report them if they come back to your private property.

Don't ever feel under pressure to update your blog - you have enough pressure already - this site should be an outlet not an added pressure, so never apologise for being away for a while. It is lovely to hear from you when you have time but don't ever feel honour bound...........Rest when you need it, you need to continue your recovery too.

Sorry to hear about the need for further surgery I hope it goes well and improves things.

Take good care xx

hi Dorset Charlie, sorry to hear about about the more recent downs but pleased for the ups in yours and Jakes lives. As for writing, it explains your feelings and experiences to those who read it and hopefully you will benefit from the therapeutic value of getting things off your chest or out in the open

Sometimes KirkF5W says she rambles :-) but I usually feel better for clearing my mind of my aspirations and emotions on paper, as can't do it verbally at present - don't get me wrong, I can talk if there's someone there to talk to - so writing for me is the best alternative. I keep telling myself that one day, when my life settles down will write about my life experiences since January last year! So yes, you do it at your space and will. Shirley xxx

companion cycling are great aren't they I've used them in work, many times they have one trike/bike that can take a wheelchair which is a hoot normally go with a young guy who loves speed and has no fear! sadly I'm in no shape to take him for probably quite a while yet.

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