better late than never

I have been very busy and been neglecting the website for too long, Internet troubles are only partly to blame.  The extension is complete and I am waiting for blinds and curtains before I can move the bed in (we still only have a single bed because the authorities will not fund a double bed and the cash for that as well as everything else is not freely available).  I have been having showers in our wonderful new wet room in the Sahara themed tiled environment (sandstone style titles with Moroccan coloured mosaic border), and the kitchen with its solid beech worktop, cream-coloured units and brown mottled kitchen tiles above a Oak styled vinyl flooring.  I persevered with wanting carpets in both bedrooms (one for the carer) and so we have a lovely brown patterned carpet covering underneath our wonderful ceiling track hoist leading into the bathroom.  The walls are in satin rose (pink… ahem, at least Ellenwill be happy in the bedroom) the corridor and kitchen walls are in white and the entrance hall is in a slightly pinky off-white colour called Blossom White.  Overall it is an amazing, spacious and warm environment with an incredible patio outside narrowing to a path leading to the pavilion which is under construction now and should take only a few weeks longer.


I have been battling with more uti infections, and looking forward/been nervous about the new job starting in October 6th.  I have to learn a lot about wireless security different types of networks and the new long-term evolution (4g) Telecom standard.  My home wireless network is getting increasingly complex and are now looking at ways of mounting my mini 9 inch laptop onto my wheelchair and powering it and my wireless headset from my wheelchair battery.


I have had incredible luck with allocated carers, the most recent live-in carer being Candice a wonderful, listening warmhearted soul who is endlessly tactful and looks after my every need.  The previous one was Rachel, a down-to-earth strong and bubbly character with a quick wit.  Hopefully I will see both of these in the future if I’m lucky.


Still battling for various bits of equipment and working hard at keeping myself healthy, one of the biggest annoyances at the moment is the length of time it takes me to get up in the morning.  I seem to take a while to acclimatise to being upright, and my shower chair is completely unsuitable and provides skin problem risk.


I have been to various weddings and birthday parties recently and spent every possible moment in the sun when it decides to appear as well spending a lot of time sleeping.  Off to bed now as it’s getting late, I might read a page or two of my book about the American physicist Feynman, fascinating.

5 thoughts on “better late than never”

  1. Tom
    That’s great news – finally able to use the extension – maybe even the bedroom by now, if blinds and curtains are in place. Wonderful! I hope Ellen enjoys the choices you guys have made, too, though I guess she’s probably off in C’diff a lot at the moment.
    Good luck indeed as the Roke Park thing comes on – very tough for you and a b—- of a commute, but it’ll do wonders for your head to be stretched and exercised by the challenges of work. Hope Suze likes your boffin colleagues – how will you structure that bit – will she always accompany you to work, or will you rotate that job, too? What about the “second able body in the van” thing – are you all now comfortable enough with it to be able to dispense with the second person?
    I’m sorry we had so little overlap while I was visiting – though at least I got to see you – missed Ol altogether – passing like ships in the night.
    The other thing was – it was really good to see you being so busy and occupied and the way you are bending the situation to your will. Once the extension and the Pavilion are both up and running, it’ll be fun to drop back in and see how it all works out.
    It’s good that the other helpers are working out well, and that you’re getting out and about lots. Keep up the battle against the bugs, and do lots of sunbathing.
    What does that last bit of your second to last paragraph mean? What is a “shower share” and how can we address it?
    Ah – questions questions – I always have so many, but let me end this note by sending you all of our love and best wishes for the challenging times coming up.
    xx Felix

  2. Dear Tom,

    Congratulations to you and Ellen about the new place. We have been following your posts from over a year, although this is my first post. We are sure you’ll beat those pending health issues. Do not worry about the time it takes you to get up in the morning, think about how great is to be awake. We are having a baby in January. We’ll keep you posted. Let me know how we canshare a picture of us with you.


    Ana + Jesus

  3. Hi Tom,

    Thanks for posting some news after a stretch of busy silence. I take it as a very positive sign that you have been so involved in organizing care, home and job that you did not find time to write. You are taking back more and more control over what’s going on in your life, which you should.

    Maybe you could post some pictures of the annex for your curious readers?

    Best of luck as you start your new job — stay healthy and keep us posted!


  4. Delighted that webmaster Tom is back at work.
    Really missed the absence of postings on both sides of the blog.

    Guy Fawkes Day as all the British community know is celebrated in England the 5th of November.
    I think it’s a strange coincidence that ISMA U.K. is having a National Stress Awareness Day to show how unproductive the worry habit can be ( this is for me of course!) Just think of all those bomb fires and fireworks!

    At work I started giving out their list of ” Top ten stress busters”.
    French colleagues including the doctor were quite perplexed with number 8.
    “What does hugging mean Marie”?
    In fact I didn’t know the French equivalent which is “étreindre qn.”

    Please go to Home page where you will find a delightful stress relief game called Poppit Stress Buster which involves popping balloons which even Marie can do!

    Please print the Top ten stress busters.
    Please permit me Tom to give you a big hug.

    Fusspot Marie

  5. Dear Tom

    I mainly wanted to send you massive amounts of good luck for the start of your job next week. I know how hard it’s been for you to find time to think about the project, but I’m sure that you’ll do fine. For one thing it will be much easier to think constructively when you’re actually at Roke, meeting people and getting feedback, and bouncing ideas off colleagues.

    I’ve been picturing your slightly pink, sandstone-ish, vaguely brown decor. It sounds great! I happen to love pink and shades of brown together. It also sounds as though the builders have made great progress with the pavilion since I saw it. All very exciting.

    I do hope that you’re feeling well and that you’ll manage to beat the UTI infections soon. I’m so sorry that you’re having to cope with infections still, even though the ones due to the metal plate have been abolished.

    One last thing – you mention reading a page or two of your Feynman book before you go to bed. How are you reading? Have you got a new gadget for turning pages? (Or is the gadget one of your lovely carers?!)

    All my good wishes


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