A Mask And A Tube And A Machine That Beeps

I wake at 5.30 am. It's light. I get up because I can and my time is my own today. I write emails and feel alive.

9.30 am -  I lie on a massage couch and my cranial osteopath, the man with the magic fingers, releases the bumps and knots in the muscles in my shoulder, my back, my hip.And prescribes stretching exercises to keep them smooth.

Over the years he has worked on both of us many times.  Last summer he was the one who alerted us to the tremors in Robin's arms - knowing that they were neurological symptoms of something other than a frozen shoulder. It took months before we finally saw the consultant. Now I think I should have gone private to get a diagnosis sooner. But it probably wouldn't have made any difference to the outcome. Just saved some of those anxious waiting weeks.

When I arrive at the hospital this afternoon Robin is sitting in the chair, dressed in the same clothes he's worn for 3 days.  But at least they shaved him at last. He's attached to the drip so we can't go for a  corridors walk and play endless games of solitaire on the iPad instead.

 The lovely  senior African nurse says he didn't eat any lunch and he has been following her around all day asking questions. He says she's so beautiful and a genius and she laughs and hangs another infusion  bottle on the stand.

The Occupational Therapist puts her head round the door and asks to talk to me. She comes to show me how to work the other machine standing in the corner of the room. It's a cough/saliva clearing apparatus which involves Robin breathing in to a mask on the end of a wide tube.  It pumps air into his lungs and out again - I think. We will need to take it home and use it morning and evening to help clear excess saliva or if he gets a chest infection.

He says he doesn't need it. He says no a lot now. No to a drink of water. No to clean socks.  No to lunch. No to breathing into a machine. 

Suddenly it's all much more real. I  try and  imagine this breathing machine in the house. And a hospital bed and someone helping Robin to get dressed who isn't me. The visible apparatus of illness. Up to now it's just been him and me managing  -  with lots of wonderful people supporting us  - but  all looking, if not sounding, pretty normal on the outside. A mask and a tube and a machine that beeps - that I have to learn how to operate. That spells Oh Shit.

But tonight I'm not going to think about it. I'm not going to look at the long complicated forms lying on the dining room table that arrived in the post yesterday. Lots of questions to answer  about applying for PIP ( Personal Independent Payments) instead if Disability Living Allowance, and another horrible form from the DWP about Robin's eligibility for work which means assessments and interviews and proving that he deserves to have or keep the benefits he already has. Even though he's worse than he was.

I make my favourite supper instead - grilled asparagus and egg on sourdough seeded toast and avocado ( because I bought too many and they are all ripe at the same time) and read my book at the table with the sun still bright on the page at 8.30. Relishing the lightness of my freedom.

 Early the other morning I snapped the Robin and this magpie on the telegraph wire in the alley way at the end of our garden. A bird on a wire always reminds me of our friend John Crabb who takes the most amazing photos of birds, often in flight   - and now also paints them - beautifully. They are extraordinary  - a treat not to be missed.

 You can find him here.  See below the photo....

You can find him here www.johncrabb.co.uk