Busy doing nothing

I remember Nanny Sands singing this to me when I was very very little.





Busy doing nothing working the whole day through,


Trying to find lots of things not to do.


Busy going nowhere, isnt it just a crime


I'd like to be unhappy but....I never do have the time!





This last few weeks have been a bit like that here. David has been trying to rest his leg as much as possible, often it is too painful to do anything else. He has had to have the wound packed and dressed daily since the draining and it has been excruciatingly painful for him. He has tried to get more mobile but within a few yards he can barely bear weight on it.

So David has been sat on the recliner for the best part of four weeks, which means I have had to do the school run morning and night, have had to do the meds morning and night, all the meals, the washing the dressing the dealing with arguments. The driving to and from hopsital appointements and David's appointments have added to that.

We always try to keep appointments in school holidays to a minimum but half term week we still managed to have 10. two of those had to be in half term and 5 were directly relating to David's leg. But still it was five appointments I had to be able to attend and have care for the kids and David whilst I was dealing with them.

We didnt really achieve much for the children in half term and Christina in particular seemed to find that hard, she was very pleased to be going back to school on Monday.

It is Wednesday evening now...I started writing this post on Monday evening and have only just managed to find time to finish it. So busy yet I have done nothing tangible!

So far this week I have attended over 7 appointemnts, and cancelled on today because I just couldnt cope with it. It wasnt a hugely important appointment one that is overdue, but not one where anyone would have come out of it with anything useful. So it has been postponed hopefuly to coincide with a siblings appointement with the same Consultnt in the next 4-6 weeks.

Tomorrow is an important day for us as a family. For several months now I have realised that when it comes to end of life care for Eve, the last place I would want to be is the hospice we use now. I dont feel comfortable there, I dont feel the children are cared for adequatley, neither the cared for nor the siblings. I dont feel Eve is safe, I must admit I dont have any serious concerns about Rosie's care but as an holisitic family support I just dont think it is working. Joshua and Christina certainly do not feel supported either whilst at the hospice nor when we have asked for help for them outside. So we are going to talk to the other Hospice in our area, we are fortunate to fall between two. The place we use now has many staff who do care, particularly I feel cared about b y the cook! However, I know that I would feel more at peace on the chidlren's ward at our local hospital than I would at the Hospice if it came to end of life issues.

So tomorrow we go to talk to staff at the other Hospice. I am hopig beyind hope that it works out. I am so tired, absolutely wrung out. A friend has a great analogy, I feel like a piece of chewed string! It isnt the kind of tiredness that will be eased by a good nights sleep. It is tiredness that infuses every aspect of my being. I am running below empty on energy, emotion and everything else. There is a fantastic analogy of the limitations of energy in persons affected by Lupus, I think I have borrowed my spoons to the middle of next month!


http://www.butyoudontlooksick.com/the_spoon_theory


On that note I will say goodnight, and for those who I know pray for me and my family regularly thank you.