I feel calmer today. Phil is off work.
A simple thing such as changing GP seems to have caused me a lot of stress. I guess because medicine is a huge part of my life now and collecting prescriptions, keeping stocked up, ordering tube feed supplies etc is a daily thing. I like to be overstocked if anything so you know you are prepared. Some of the meds come from hospital, some from pharmacy, some meds are controlled meds and can’t be ordered online, and some meds need special training and to be pre draw and taken everywhere.
I sometimes genuinely wonder how on earth I filled my days before we had Amy.
My nightmares are still really bad. When all signed up for the GP I need to try and tackle it. I’m waking up panicked and exhausted most days. Last nights one (the bits I remember) were sort of hilarious in a way. I dreamt it was my dads’ Birthday and that to celebrate we staged a zombie escape day. There were 100 “zombies” (people dressed up) and 50 civilians (i.e us). Annoyingly the zombies could track us on these infrared tracker things.. we only got 10 seconds to get ahead of them and they weren’t allowed to run. I refused to do it saying my anxiety was too bad so I stayed at this lodge thing. As the game went on, more and more people returned to the lodge missing chunks of their arms, limbs, all sorts. I started to realise it wasn’t just a game. This then turned into me genuinely fleeing into the forest searching for my family in a frantic panic. People were hiding inside man-made logs unaware that the zombies could track them. It was petrifying. The night before was some sort of torture escape one, and that one really was scary.
Irony by the way – I just had a call asking if we need any feeding supplies. Ha. A while ago I did actually tell them to stop calling.
I overdid it with the lifting of Amy over the weekend. Did lots of helping her walk by fully supporting her body and shifting her weight on each leg so she sort of walks. It’s hard work for both of us but it’s nice I can give her that sensation and also physio recommends it. But my back is paying for it two days on!
Tomorrow I start doing some mystery shopper typed things. I need the spending money.. every time I get a phone bill it’s like arghh. All carers allowance and DLA goes to paying bills and also to all the extra things we need to buy for Amy (probiotics, bibs, gtube pads, stuff like that). Phil works so many hours and that pays for the petrol and all the bills and rent… but I hate feeling guilty if I want a coffee somewhere etc. Working full time weirdly gave me a freedom I never knew I had. Hopefully I’ll hear about the voluntary work soon too.
Anyway. Sort of just checking in. Amy has her EEG today. Her first day back at school after school holidays and the poor thing gets dragged out to have probes put on her head. I am part nervous, but mainly expecting her to not be having seizure activity. I think the big one she had is either a one off, or it will happen in a few weeks or so and therefore not get picked up on. We shall see.