Lost For Words

Photo by ZoofyTheJi

It is not really true that I am lost for words. I could write about Robbie's missing pants (again), he got so wound up about two missing pairs of black pants yesterday. One pair wasn't missing at all, they were folded in the pile of laundry that I had taken up to the bedroom the previous evening. Apparently I hadn't folded them correctly and on the way to the station he patiently explained how to fold his underwear and amazingly he survived - I must be mellowing in my old age!  The other pair of favourite pants were not far away either, he 'found' them this morning and stood there waving them at me triumphantly in the style of a bull fighter - it isn't the best sight first thing in the morning! 


I could write about the roof leaking when we had torrential rain last Saturday night. It dripped through the ceiling on to Robbie's side of the bed, it ruined some of his precious railway books and it spoiled the covers of some of his vinyl records. He was so angry about it. After rescuing his things and finding a container to catch the water he stormed off to sleep on the sofa and I was left wide awake worrying about how much it is going to cost to fix the roof. It will be a huge amount because it will require scaffolding. 

Photo by Laura Jones

What I really want to write about is how much I love Robbie and how useless I feel sometimes. I am not a soppy, sentimental sort of person but I do care deeply about him and I have been terribly worried by the level of pain that he has been experiencing in recent months. Pain is exhausting and constant pain can be really lowering because it affects everything you do and it changes the way you feel about yourself. Robbie is so strong and so determined to be 'normal' (in his own unique way) but it gets him down when his back hurts and his legs misbehave. I can't take his pain away but I can be strong and help him to accept the need for more effective long term pain management. I can make sure he takes his tablets and help him to cope with the rather unpleasant side effects. The tablets make him very tired, waking him up in the morning is like trying to raise the dead. Sometimes he gets very cross with me and he has been known to tell me to go away in no uncertain terms, but I don't take too much notice of that. One way or another we will get through this. It will take a long time and a lot of trial and error to find the correct medication and the correct dose to manage the pain without devastating side effects. I need to be strong, I will not let him give up.