22nd May

Watching and waiting. A most exhausting day. I didn’t sleep for 24 hours and ate very little causing M.E. to rear it’s ugly head. I basically collapsed with exhaustion at 6.00am this morning unable to cope any longer… but you don’t raise four wonderful children without them responding instantly and totally when you need them.

So then… Jane took to her recliner for sleep last night having taken all her medicines. Within a couple of hours she was struggling to breathe and becoming agitated so I attempted unsuccessfully to give her Oramorph. What do I do now? I talked and prayed with her and she sort of settled a bit and then the phone rang. A new friend phoned who conveniently happens to be a GP. He had read my blog and was most helpful. I called the out-of-hours doctor and around 3am he called to bring quick relief with multiple injections. Before long a taxi driver appeared to take his prescription for a syringe driver designed to inject Jane continuously with the medicines she needs. Another returned with said equipment before too long and I then called for the District Nurse to come. So by 6am this was sorted… very efficient. And Jane settled for a few hours.

And so did I… horizontal on the floor. Our son who lives with us had already sat with his mum through much of the night whilst I desperately tried to sort my head out and dealt with phone calls so I left him to sleep. I managed to reach our phone and within ten minutes our eldest daughter appeared on the doorstep, followed within a few hours by our other two daughters and a rested son. The four of them have been amazing and sat alongside Jane all day… watching, waiting and looking after us both. I’ve had a couple of hours sleep or so but M.E. isn’t dealt with so simply. I need extended rest and relief from stress… and that’s not just around the corner. Our kids have dropped everything, being fully supported by their own partners, and I have two to help me through the night and possibly all of them again through tomorrow. Marie Curie can provide night sitters with notice.

So today again come lunch-time Jane was becoming agitated and this time the emergency doctor appeared within minutes of my call. Tea-time again she needed more and this time we’d got prescriptions from the chemist so a District Nurse came to inject Jane. The system is brilliant and they seem to have Jane as their number one priority being willing to drop just about everything and come visit. It’ll be a long night again as I expect to need another nurse to visit late tonight and again at 5am to change her 24hr syringe driver.

I’ve been crying all day, even on the phone to the obligatory call centre… they are so kind though. And it hurts so much when a doctor explains once more the obvious fact that Jane is in the final stage of her life. Throughout all this Jane keeps smiling… and I know she feels horrible and at times agitated. But at 4am, even though the doctor had just left her sleeping, she stirred trying to say something. ‘Chocks away!’ she said, which made me laugh and then in my exhausted state I realised she was asking to be moved to our back room which is open-plan with our conservatory overlooking the garden. I took her there and really had to lie down.

1 Corinthians 13:8 ‘Love never fails.’ (NIV)