I didn’t come this far, to only come this far.

Oh my gosh. It has been a long time since I’ve updated this blog. It’s been a long time since I’ve had the chance, but now I do, and it’s probably time for an update. At the moment I am in the midst of a major life change- read on if you want to know more.

I’ve been in hospital for awhile now, last Friday I hit the five month mark. I’ve spent Christmas, New Years, my birthday, my Dad’s 60th, and my Dad’s major surgery, all inpatient with minimal leave. It’s been hard.

I was admitted at the end of November 2019 after I became medically unstable due to my eating disorder, and at around the same time I attempted suicide. Everything was getting out of control and an admission was needed.

The usual cycle with my eating disorder is: I deteriorate at home and eventually become medically unstable, I’m admitted to hospital and am force fed until the “danger” period is over, then I’m sent home on nasogastric feeds to manage myself (something that has become increasingly difficult since my Mum passing in August 2018- I am physically capable of inserting my own NGT and setting up the feeds, I just find it difficult mentally) where sometimes I am okay for awhile, sometimes I relapse straight away, in either case I end up medically unstable again and we just go round and round in this cycle of in and out of hospital.

This time, my treating team and my family made a decision and committed themselves to a new plan- one to get rid of the nasogastric feeds, and to introduce a healthy relationship with food back into my life. It was decided to try and get an admission to a specialist ED unit in the city, and I was accepted and put on the waiting list. This unit is small, and has quite the wait, and it was decided I would stay inpatient at my usual hospital until a bed was available there. So far it has been the five months I mentioned, and it may be many more by the time I am transferred but I have been moving up the list while my treating team here have been in regular contact with and receiving advice and support from QuEDS, and the doctor that runs where I’m going.

Since the beginning of December last year, I have been on a 3 step meal plan, instead of just a feed plan, and it has been very challenging. I’ve had my ups and downs. I get exhausted easily- even just getting up at mealtimes several times a day is new and tiring for me, when I am used to overnight nasogastric feeds, and not having to worry about food during the day. I haven’t managed to do any better than the third step yet (which is my supplements down the NGT) but the fact that I am mostly doing that without restraint now, and managing to come out to the dining room to even sit with my food sometimes (and to manage drinking water- sparkling please- and coffee, when previously even water was a battle) is such an improvement that I have to try and remind myself of that during those times that I want to give up, when I’ve had enough and want to be discharged to become empty again (emptiness brings with it a great feeling of comfort for me) and just give up on this whole “recovery” thing. But I have a lot of support to help me during those down, distressing times. My case manager and my dietitian especially just don’t give up and don’t let me give up no matter how hopeless and helpless I feel. (And I regularly see the security personnel who have had to help me over the years and they often say hi and comment on the fact that I don’t have to have them called very much anymore and that I must be doing a lot better- more proof I have to tuck away to remember during those down times).

During all this, my Dad found out early March that he had heart problems and he eventually found himself in the Wesley for a CABG (quintuple bypass surgery) on the 24th. We had known he wasn’t doing very well but just put it down to his usual complications and feel very lucky to have discovered what bad shape his heart was in before something happened. He is now at home recovering- in isolation because of COVID-19- and slowly getting better. The last two weeks I have earned 2/3 hrs leave off hospital grounds to go home and see him, which (while FaceTime is a magical thing when you have no other option) has been just wonderful. I don’t know what I’d do without my brother and sister in law, they’ve both gone above and beyond these past months. Also, I’m grateful to my treating team here at the hospital who gave me extra time out until Dad was out of the danger zone, considering how worried I was and that I needed family time, especially because I’ve experienced being in hospital while a parent was seriously unwell before, and the emotions that were bought all back up because of that. So now, if I follow some quite strict rules during the week, come the weekend I have 2/3 hours leave to see Dad and of course Calvin, who just keeps getting cuter.

We don’t catch up with QuEDS again until next week, when I’ll find out if I’m any closer to my transfer. Until then, I keep on trying, keep on accepting help when I need it (which is very difficult to do most of the time), keep on trying to improve. I’m at a bit of a low point at the moment and am needing lots of support but I have to try and remember we’re doing this for the right reasons and that it’s not going to happen overnight, as I have been struggling at different levels of wellness with this for the past 20+ years, and accept that recovery isn’t linear. I’m bound to have ups and downs.

Something keeping me down is the fact that I have gone so so very long without seeing my friends. They are very dear to me and I try to see them as much as I can when I’m at home. I missed so much over the holidays and now there is a lot going on that I am missing too, including an engagement (!) and also the fact that my best friend recently got a puppy and I’m seriously worried that I won’t meet him while he’s STILL a puppy. Stay little forever please, Link!

A couple of things that keep me smiling are my godson, Little Dom, who came to visit at New Years- up to Brisbane from Sydney for a week. I had no leave at this point and his Mum and Dad bought him in 3 times! He’s one now and an absolute cutie, and every time we FaceTime it seems he’s learnt something new.

Also something that I’ve found great inspiration from is the poet and artist Morgan Harper Nichols. I discovered her work on pinterest last year (maybe?) and have since signed up for her daily emails, her app and bought her book. She is one amazing, amazing woman. I have my current favourite quote printed out A4 and pinned up next to my meal plan. I also had a smaller version printed to use as a bookmark. You can find her, if you’re interested, here- MHN

I can’t not mention my everyday coffee that gets me through. I’ve been severely restricted by how many shots I can have a day, which sucks, as even just the smell of a strong cup of coffee warms my heart. But usually every day someone (a nurse, my case manager, my dietitian- someone) will take me for a walk to the coffee cart, and that’s pretty much the highlight of my day. Sometimes we sit outside the hospital while I have it, other times I bring it back to the ward to have while I watch something on my phone (at the moment I’m doing a The Office rewatch which gets me out of my head). But yes, coffee is a big part of my life right now! Also, reading. I bought a kindle a couple of months ago which is amazing (but behind the nurses station at the moment as I had some of my things stolen by a roommate and I’m being extra cautious, but also my case manager provides me with “old school” books which sometimes I binge over a weekend, or like at the moment, I get absorbed in a chapter or two just before bed.

Well that’s all from me right now. Congratulations if you’ve read this far! I hope this finds you and yours all well and smiling. I miss you- you know who you are. I look forward to seeing you when I come out the other side of all this x

2 thoughts on “I didn’t come this far, to only come this far.

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