Mum text me at 11.15am this morning with the following message - sweating terribly - patch off. I got in the car and rushed home to see she was ok and check her temp as I knew she wouldn't do it. She was fine she was just letting me know that her sweating, which is a part of her condition, had caused her no smoking patch to fall off! As I arrived in the house she was replacing the patch. I took her temp anyway - normal! I was glad I'd gone home though as she is so concerned about her hair falling out that she is thinking of nothing else and had forgotten to take her 10am medication.
We talked quite a bit about her hair and she now seems set to take the plunge and have it shaved off when her hairdresser comes on Thursday. I see this as a very positive shift in her mood. I also spoke to her about the possibility of getting a wheelchair as she is not getting out of the house much and when we do get out we can't stay out for long as she gets breathless and exhausted just walking a few yards. I explained that this would give her an option to use the chair if she got too tired walking and didn't mean she had to always use it. I pointed out that the sorts of things we enjoy doing which tend to be 'shop til you drop!' were no longer viable but with a chair we could keep doing the things we enjoy. A visit to Boundary mill or cheshire oaks. She agreed that she would like to be able to go to these places and that she was fed up being stuck in the house. She told me to go ahead and sort out the wheelchair, another positive step forward.
Not one to hang about I got in touch with her CNS and she is now sorting out a wheelchair. She told Kieran and Charlotte that she's going to have her head shaved when they came in for a cuppa after school, as they do every day. They both said they thought that was best, that they thought she'd feel better once she wasn't keeping finding her hair everywhere and that her wig looked great anyway. In this day and age, when teens often get bad press, these two are absolute stars as it was exactly the right thing to say and they hadn't needed to be prompted. When she said she was also going to get a wheelchair Kieran said that was great as he needed a new shirt and tie for his carol service and, if she got it in time, she could help him choose.
All things considered I would say we've had a good day!
