I can’t do it any longer. I can’t put off updating things because I don’t like what is going to be said. As my dad and I remind each other constantly, it’s okay to not be okay. Cheesy af but true.
Starting where I left off (waiting in Logan Hospital for nine months for a bed to become available at the RBWH), one day at the end of August 2020 they came to me and said that today was the day, and the transfer was made. While I’ve been here I’ve received a lot of support from everyone and I have made progress but it’s happened nothing like I’d dreamed it would and it’s been very slow and arduous. The team have tried so many different plans and approaches but at the end of the day we’re just going around in circles. I’m attempting meals and snacks when I’m up to it but it always ends up in a feed which makes me feel terrible. Because of certain incidents it’s security numerous times a day. I have tried (and achieved once when all the elements came together) to have at least voluntary feeds but I’m finding everything extremely difficult. Everyone is out of ideas, and have come to the realization that all we can do is press on.
In July of last year, after an earlier complex case review, my situation was taken to the Ethics Committee where it was decided that I should stay in hospital until I am safe and able to manage my nutrition in the community. A result of this meeting was shared care between the RBWH and Logan Hospital and as such, having been here for just under 17 months, Logan are preparing for me to transfer back there for awhile. They are going to try to manage my care as closely as possible to my routine here and it’s probably going to be another decent wait until everything is worked out. Covid is also making things difficult at the moment for both hospitals.
My self harm has also reared its ugly head and I struggle to keep myself safe from my own thoughts, the many things that are going around and around in my head. Things have settled a bit now but there’s been a couple of times I have needed surgery. They were very low points and I’m not wanting to get to that point again. It doesn’t just hurt me.
Depending on how much Covid is being a bitch, I’ve had leave to go on drives with my Dad, movies and eats with the whole family, even a couple of parties and a concert (Kate Miller Heidke) with friends and family. I’m very appreciative of the treating team pushing me to pursue some “normal” aspects of life and be a little social.
Whilst I’ve been here it’s been an excellent opportunity to meet a couple of really well matched support people through my NDIS plan. When leave is happening (whether it’s Covid or my medical stability affecting things- sometimes it doesn’t happen) we’ll go out and spend a few hours off the ward or just get a coffee on hospital grounds which is great.
Dad’s health is up and down but he has been such a great support to me, coming in and spending time with me (even though alot of that time at the moment has been in HDU) and bringing coffee and my latest online order! We much prefer it when we can have leave but any time together is blessed and even sitting in silence with my head on his shoulder is bliss. My brother and sister in law are amazing with the time they get away from work and I really value (and often need) their wise & sensible way of looking at the reality of how things are, even when it gets bad.
All of my friends, new and old, and even if I can’t see them, are so supportive and make me smile. To those that are able to visit, and those that can’t, thank you from the bottom of my heart.
The end of this month brings a lot of changes for me, even if the impending transfer to Logan takes longer. Yesterday my case manager, who has been my case manager for 10+ years, came to visit to say goodbye. When I first met her I wouldn’t speak to her, we would sit in silence. Now, she’s the person I turn to when I really need help and support. At the end of this month, she is moving on from QLD Health. Also starting a new journey and leaving the treating team is the consultant here, who I have grown to work well with and respect (except for when she makes a decision I don’t like!). If I’m still here when she leaves (which looks likely, this transfer has the potential to take awhile) I don’t know what I’m going to do. I feel like I’m losing everyone and that brings things to the surface.
There’s really only one thing I can do at the moment- take things one step at a time. There’s so much going on, I just need to slow things down and breathe. It turns out I know what I need to do, it’s just practicing it that’s the trick!
I hope 2022 brings health and happiness to all of my friends and family and strangers in the street. We’ve had it tough for awhile, it’s time for a break.