Do you ever just get a booming tension headache from it all? Well now I’ve placed myself in a predicament… writing tends to alleviate frustration for me as it provides an outlet to spew out all of those thoughts and feelings… HOWEVER, the screen is only adding to my headache.
Anyway. I think tensions are running high for me right now as Amy is due her first stay at a hospice without Phil and I there.
I know it probably isn’t a big deal. The rational side of me is saying she will have fun, it will give her some independence from us, she will enjoy the bath and sensory room, it will be a purely positive experience for all.
But the other side to that is the intense guilt you feel when you finally get that break you’ve been so desperate for. Guilt for needing the break. Guilt for getting what others probably wish they could have. Guilt that we can’t do all of this ourselves and need the help.
I am so scared that she will feel lonely, confused or abandoned. I want her to know that the moment she isn’t with me.. she doesn’t leave my thoughts. I worry about what if people aren’t kind to her, what if they don’t understand her, what if she wants to tell me something but can’t because she’s non verbal. We are essentially trusting a stranger with our entire world. The more you think about it the more you think no I can’t do this and you want to cancel. But you can’t. Others do it, others cope. Why can’t I just switch off and be calm and casual about it all.
The other thing is the packing. Oh the packing. It has taken me half of today and I am still not done as there are things I can’t pack until tomorrow.
I started making a list, I got so far with it and thought this list is too long I haven’t got time for this. Inhalers, neb ampoules, suction catheters, tube pads, rescue meds, bloods stuff (lancets, finger pricker, ketone strips, glucose strips), medicines (several) chargers, feeding pump, flexitainers, drainage bags, giving sets and so on and on and on.
I had to go to the hospital the other day to get two meds relabelled as they faded. At the start of the week I requested one med to be re-issued with her new dose on it. I had sent emails from neuro and got our keto team to send it to the GP to send to the pharmacy. It all arrived tonight with the WRONG dose on it still. Initially I was calm. But then my rage and frustration grew. I pre-empted this. I had taken many steps (more than I would like to) to try and ensure that this wouldn’t happen. So now my options are 1) have them give her the old dose and hope that the side effects aren’t too horrible 2) turn up 6 times to do the med myself (how is that respite though) or 3) i dunno. So I have emailed the hospice the letter from neuro with the new dose on it on a whim they might be able to give it (they won’t I’m sure of it) and will see what happens.
I guess ultimately, in the wider scheme of things.. no one will die. It’s fine. In a weeks time it won’t even be an issue probably. I think what gets me is that I have run myself ragged to ensure no issues and yet things are happening outside of my control to make things not right.
I think most parent carers would tell you the main things that upset us are 1) feeling out of control 2) admin 3) people not doing what they said they would 4) chasing things up and having to constantly be vigilant about things
I will miss her sorely. I just hope she has an amazing time. It’s the first time in 2 years with her being that far from me for so long. The thought of not making up her feeds for a few days feels so foreign to me. I even got phil to print out her feed regime as last time they couldn’t open my email attachments.
I think I have done all I can. I must try to breathe and stay calm. And trust others. And not call every few hours to check on her.
Today I had worked hard on getting jobs done and also calming my mind. I even sat down and watched an episode of queer eye (it always makes me happy). All of that mental work I had done seemed to unravel when I saw the incorrect label on that medicine.
I had a blood test today. For some reason i often faint/blackout when i have them. It’s weird as i dont fear them, they dont hurt, and I’ve had loads of them. I dont know what happens. It seemsT inescapably physiological. Anyway it only took two attempts. The nurse is amazing, she always does such a great job and really puts me at ease.
My eczema has been sooo sore this last month. I ordered more cotton gloves and have started using washing up gloves more. Drawing up 20 something meds a day/constant hand washing etc is taking a toll. Plus the change in weather/heating being on more. It’s hard to apply the creams as much as i should as you end up greasing everything up!
We went on an amazing walk the other day. It was recommended on the local accessible walk group. Would you believe we bumped into the very family that recommended the walk to us!? Such a small world. Lovely family too. I was at a park the other day and it felt more like that time of year when spring feels close.
What else what else. We had a great christmas. Our longest stint of not being in hospital we’ve had in ages. I think prophylactic antibiotics have really helped this time round. 2021 involved 5 or 6 chest infections/pneumonia cases for amy, but strangely since september things (touch wood) have been so much better. I guess also distancing/masks etc too will have helped as well. We are all jabbed/boosted here except amy (shes only 7).
My poor dad has had covid. He’s okay to go out now which is good. Phil full of a nasty cold that i hope we dont all catch! Mum’s art is doing well..need to do a post about it really. Im so proud of her. Saw my friend danielle and her boyfriend guillame the other week. She has lived in france for 10 years now. It’s always so great when she visits. We had a really memorable time.
There is loads more to say. But I shall leave this here for now.
melodramaticpumpkin 