Work going on

I have been quiet for a bit but lots of work has been going on.  Very exciting as we are staying ahead of the drag curve.  Just in some cases.

It took two weeks and a lot of noise but we have a lovely new wet room.  Our en suite has been transformed.  Our son lost 30cm of his bedroom  (he is very laid back son at University so doesn’t mind) and our en suite gained the same amount.  I love it.  It has a non slip floor and a very snazzy mirror you can waft your hand under to get lights.  And the shower is lovely too.  Let me show you.  It comes complete with Charlie, our cat who can’t resist being with people.

So we have a lovely light and bright wet room.  I love it.  We also have a closomat with a rather fetching seat above it to help  me  get off. I can still walk but struggle to get off things without handles! My lovely occupational therapist provided the closomat and seat.  I don’t need the closomat yet but fantastic to have it when I do.

Janice also provided the stilts (I don’t know what else to call them) that gets my sofa higher.  I am so grateful to my husband’s aunt who turned my 20 year old tapestries, that had been folded in a drawer, into gorgeous cushions. A lot of people are lovely to me.

So the work has been done on our wet room. And I nearly have a fetching ramp too.  Builders were at work last week.  I can’t show you the new ramp as it is currently under blue tarpurlin. This is for when I need a wheelchair . Although handy for me now too as I struggle with steps without a bannister

We also have wider doors dotted around.  And excitingly we should get a through floor lift this month. More work required but just great to have.

I have had really gorgeous visitors lately. Not least Gina who I have known since we were babies.  Well I assume so as she certainly features in a photo of my second birthday party. I loved catching up. Then I also saw Anne and most of her family. I have known Anne since we started primary school.  She is a GP now but we didn’t talk about my illness at all. Perfect. I really loved seeing them.

Last week my sister-in-law, Jane, flew up for a night.  I love her to bits. We saw her on Tuesday evening and again on Wednesday morning when she brought along another sister-in-law. It was great to see them. And Robin will come and cook something that my husband won’t ..

My mother sometimes turns up out of the blue and often tells me that I sat on a potty (I am sure I was under two) and said ‘potty wee wee’. It makes me laugh as I am sure I have said lots since!

I have a new symptom now. My head tilts.  This is annoying but I knew it would happen as even before I was diagnosed I was aware my neck wasn’t quite right.

i will show you a photo so you can see my neck tilt. I should get a collar soon.  My MND nurse has ordered one and I should get an appointment with orthotics soon too. I have to say I was taken aback by how skinny I look.  We are all aware I have lost two stone but I don’t often see a photo of myself.

So you can admire my head tilt and possibly be dismayed at my skinniness. But I am alive and that is lovely and I can still move all my limbs.  Yippee.  There is so much to be thankful for.  I am sitting on my riser recliner the council provided.  Brand new and goes with our other furniture.  Just great.

Look around you.  You never know what is round the corner.  There are lots of things I love.  Of course I miss chatting away but my Predictable App is great. I miss eating too but there are little bits I can manage.  I love the friend who says she looks through cookbooks to find things I might manage. Thank you Pam.

My children loved songs with stories when they were a bit younger.  Both are at University now one doing a masters and the other in the first year of his degree. They were not that much younger!

i don’t know if anyone remembers this song but my children loved it. Camouflage by Stan Ridgway.  I heard another song they would have loved. El Paso by Marty Robbins.  They are both tragic but that is what my children loved.  I hope you enjoy them!

About Susan

I am a middle aged woman wondering where all the normal middle aged people are. I don't want to regain my lost youth but nor am I ready to rush headlong into old age. I realise I am oldish rather than youngish but surely not actually old yet. So this is my chance to muse on my middle aged existence. This will save my teenage children from the horror of me musing on age spots or deteriorating eyesight which is surely a kindness. Now that I have been diagnosed with MND (ALS) this blog will have to change a bit, but I AM still middle aged too.

{16} Thoughts on “Work going on

  1. It all looks very nice, especially the bathroom. Have to say you have a great team.
    By the way I loved Camoflage but not sure my children know it.
    Hope the tilty head isn’t too much of a pain in the neck!! I think it makes you look like a wise owl. Reminds me of being a Brownie, with Snowy owl and Brown Owl. Were you a Brownie or a Guide?

    • Someone else said i look intelligent but I think they were wrong. The head tilt is slightly annoying but not bad. I was never a brownie or guide sadly!

  2. Your renovations look great .. you will so enjoy your wet room .. and the fancy lightening ..Posh !!
    Next thing is getting in your new lift which will be a great help ..
    So glad it has all went quite smoothly ..
    David xx

    • It all went really smoothly. We had superb workmen who just got on with it all. And our ramp was revealed this morning!

  3. It’s s nice feeling knowing things that make life comfortable , are all in place. We have done the same.
    I always feel my home is s safe place for me . I am much like you , no voice, very few things I can eat, had a peg fitted as I was losing to much weight.
    I enjoy reading your posts. Nice to see pictures . Hope you keep well as can be .
    Keep on blogging

    Best wishes Chrissie

    • Thank you so much Chrissie. I like having pictures to show what is happening. Hope we both keep really well.

  4. I love ‘Camouflage’ too! Graham Norton has played it on a Saturday morning as a Tune with a Tale. Looking forward to seeing you xxx

    • i love Camouflage. Someone said I should have warnings on songs that get stuck in your head. But not a chance I am doing it. Really looking forward to seeing you next week x

  5. Hi Susan. The wet room looks amazing. I am glad all the upheavals are improving life for you and that your lovely cat approves. Yes you look like you have lost weight but your hair looks amazing. You have always been a wise old bird and now your head tilt enhances that xx

    • Thank you so much Pam. My cat approves of anything. He just loves people. The photo was in the morning before I had my hair cut in the afternoon. Still curly though!

  6. Looks amazing, Susan! So glad are being kept as comfortable as possible.
    As for the tilt, i think you look mildly flirtatious! What does David think? Xxx

  7. Hi Susan,
    Just been reading your blog. The house alterations look super and you will really know a difference with the en-suite. Your cushions were a joy to have done; they were so beautifully sewn. It is great that your old friends have been able to come and see you. Like mine everyone seems so far away. We are both in birthday time so are treating ourselves to a couple of nights away from Sunday – not far away at Coul House Hotel near Strathpeffer. Hope their lovely open log fire will be on. Come and see us again soon; we would love to see you.
    Love,
    Freda and Jimmy.

    • Dear Freda and Jimmy

      Do have a wonderful time away. Surely the log fire will be on and you will luxuriate in cosiness. We would love to come and see you soon. The house alterations are lovely and wonderfully lined up for the future. Roll on the through floor lift.

  8. Dear Susan
    I love your wet room – that looks fab! You are looking as smiling and cheerful as ever. I hope it won’t be long before I can see you again but great to be in electronic touch.
    Lots of love Louisa xx

    • I love electronic touch! My wet room is fabulous and ready for when I am in a wheelchair but we can all use it now too. I hope you are recovering well xx

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