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!