Our boy has not had a good day, he's continuing to battle sky high strep levels, and these are now taking their toll. Our treatment plan is progressing but it takes time. We should be used to this now because PANDAS = waiting.
He's been so distressed all day, and his distress has really highlighted to me today the difficulties he has. It was 3 very ordinary & everyday tasks/conversations that put him into a spiral. Unfortunately we are still out of our house, the repairs will take another 5 weeks at least. However, our temporary accommodation is full this weekend with prior bookings so we've had to pack everything up and move out (AGAIN - I'm a pro now!! Lol) however he has not handled this well. We have come to the cottage for the weekend. Arrival at the cottage, brought another crisis that broke the camel's back. As he sat with his head in his hands sobbing, I just looked at him, so frightened, confused and distressed, and I honestly felt physical pain......
Because we have got used to adapting our daily lives to coping with PANDAS, (what we can & can't do. Where we can and can't go. What we know he'll cope with and what he won't) you get led into a sense of false security. Then, when things crop up that you have to deal with (I'm talking everyday things you take for granted that we try to stay clear off as much as possible), as much as you try to approach them cautiously, trying to protect him, it's not always possible.
For example, his brain sequencing has been badly affected by his brain injury, some of the tasks he has great difficulty with are - he cannot put clothes on a hanger, fold them or pick clothes out. Attempting any of these will put him in a terrible state. We have installed a bookcase in his room where his clothes can be kept so he doesn't have to use the wardrobe or drawers. Even when he's having a good day, I'll say to him do you want to pack your bag for Nana's? Thinking, he's having a good day, he'll manage it. However minutes later, he's in a terrible state, I'm unable to calm him and he's either punching me, heading for the knife drawer or trying to throw himself down the stairs.........
Today's 3 triggers were
1. A conversation about organising my birthday present. 2. Choosing & packing clothes for the cottage.
3. The grass at the cottage being waist high.
It would take you to see the sheer panic, fear, distress & pain that these 3 situations created for him, before you would believe it. Unfortunately, after the 3rd crisis, he's started to become physically aggressive and I had to sedate him........ this is the point of no return, he's too big now for me to restrain him on my own and I have Annie to consider so it's my only option. I honestly don't know how we would manage him without the drug regime he's on.........
"My everyday life with PANDAS" xx