Days 40-42 of 100 – #100 day project

Day 40 of 100 (Day 15 of writing) – Monday 10 April 2023 – 7.45 am

It’s Easter Monday, and I am enjoying not going out to work on a public holiday! After several years being locked in to working in a mall where I have had to work Easter, Labour Day, Queens (now Kings) Birthday, Anniversary Day, Boxing Day I actually get paid for having the day off. That feels liberating. Of course, it is a day off paid work, but not a day off caring – there is never really a day off that.

Mitch had 3 nights at Wilson Home from Friday to Sunday, coming home yesterday afternoon, and then being a cheeky monkey and not sleeping until 2 am this morning. Thankfully, we had our new girl, who handled him pretty well, but Phil still stayed up until he went to sleep as he can be a 2 man operation when he is out of sorts. Holly has also been home for the weekend, so we had a full house last night. It is now school and uni holidays, so Mitch is home for 2 weeks and Holly will be coming and going from her flat to home as she chooses.

Saturday we went down to Waitoa, near Morrinsville for my niece’s engagement party, which turned out to be her wedding. I was not surprised as had an inkling this might happen, as the start time was 2.30 pm and on the invite it had a comment that there was to be no ‘plus ones’. To me, a couple of indicators that it might be more than an engagement. So, I put on a dress (in case), and when Phil asked if he would be okay in a polo shirt, I said maybe too casual, put on a shirt. He chose a hawaiian one and matched it with his shorts and jandals. Not quite what he would have chosen for a wedding, but so be it when it is a surprise! Oh, and btw the wine glass I am holding has zero alcohol wine in it. Just in case you might think I had fallen off the wagon. One more month and I will be 5 years sober. 🙂

  1. Grace as the beautiful bride. 2. Sharyn, Mum and Neil (my brother). 3. Phil and I. 4. Phil, Brett (middle brother) and Cam (nephew). 5. Mum and I. 6. Phil and Brett. 7. Holly, Mum, Cam and Madison (niece).

Day 41 of 100 (Day 16 of writing) – Tuesday 11 April 2023 – 9.34 am

Feeling lethargic today. Just finished doing Yoga with Adriene – Day 13 of Center – Trust. It just felt too tough, maybe I am still sore from yesterdays 20 minutes or just generally feeling flat. Can’t be a box of birds all the time. Today I have an ultrasound for my ovarian cyst and a meeting with Taikura Trust, so maybe that is why I am feeling less than 100%. Not a lot of fun in those two appointments.

Finished Stolen Focus by Johann Hari, my only criticism would be that he must have said ‘when I interviewed x’ about one hundred times. I get it that he met and interviewed a lot of people to research his book, but it kind of came across as ‘and here is another person’ that I met. Perhaps I am being picky. As with his previous book, Lost Connections, I like reading about his point of view that to fix our problems (eg. attention deficit in this case, depression in Lost connections), that we must fix or reform society in general, the marketing, the web influence, societial norms and expectations, we can’t just medicate. It is not the solution. I agree with most of that, and believe he is not saying that medication does not have a place, it is just that we should be looking at why there are increases in ADHD, Autism, Depression and anxiety. I certainly feel that medication is prescribed as the only or main way to deal with our problems, rather than counselling, therapy, fixing connection, belonging and seeking help to solve the issues that are causing us to feel these ways.

Mitch slept most of the day yesterday, and is still sleeping again this morning. It’s peaceful but worrying that the medication he is now on is making him too sleepy. Although he didn’t sleep until 3 am yesterday, so we will give him that one. We have asked for a referal back to his psych doctor to review and possible reduce his current meds. Such a fine line with keeping him calm, and making him sleepy. After what I just wrote above about overmedicating, it makes me sound like a hypocrite to be giving him medication. But after many years, it feels like a last resort to keep him from both harming himself and us.

Day 42 of 100 (Day 17 of writing) – Wednesday 12 April 2023 – 7.26 am

Yesterday was difficult. After writing my short post, I got ready to go to Horizon Radiology in Sylvia Park for my ultrasound. My appointment time was 11 am and I had decided I needed to leave at 10.20 am to make it on time. I was also dropping Holly to the train enroute, which would add 5-10 minutes. We ended up leaving around 10.25 am and I made it to the Sylvia Park car park right on 11 am. I started to feel stressed as I really don’t like being late. I didn’t know where the clinic was except that it was located on the 1st floor. Sylvia Park is one of our biggest malls here in New Zealand, and not one I visit that frequently. I decided to park in the middle car park, thinking I would hedge my bets. Couldn’t find a store map (guess I should have gone modern and used google maps but I find this stupid for a walking map), I tried to phone the clinic to ask for directions, and of course got a call centre and a phone answering system, which kept me on hold for the next 12 minutes, by which time I had found the clinic. I was sweaty, nervous and feeling yuck by the time I arrived. Having an internal ultrasound winds me up something awful, so being late and having to go to a new place made it worse.

I arrived and the receptionist asked me to wait while she checked with the sonographer if she could see me. The answer was no. Oh boy. I have been waiting for this scan for some time – it is an annual check up, which I normally have at the superclinic, but the last one didn’t happen after a series of missed phone calls and messages that I left that were never returned – I was bumped off the list. Like everything in the health system the list is crap at the moment and you don’t miss an appointment or you are knocked back. My lovely Family Planning Doctor was not happy with me being bumped and had done another referral, this one had resulted in my going to Horizon (which is a private clinic). It appears that Te Whatu Ora (MOH) are outsourcing to help catch up. That’s good but it does mean you can end up anywhere in Auckland. I mean if I had a choice, I would not have a trans vaginal ultrasound in the middle of a mall. I know I am making it sound dramatic, but I don’t find it relaxing to go through a mall to an appointment such as this. So, I was turned away for being late. I started crying – obviously I am in need of some self care, as this shouldn’t upset me like this. But I have had this dumb inner dialogue going on in my head that something is wrong for a while now, and it probably is just nonsense, but I didn’t want to have to find another time. Finding time, between work, home and caregiving is difficult. I rang Phil for a little bit of support and he told me to run with the appointment offered at 2.15 pm – the alternative was a 2 week wait and going to Northcote. It meant I wouldn’t be able to meet Taikura in full but maybe at least half of the appointment.

I went home and texted our case manager at Taikura to see if she could come a little earlier – she obliged! This is a new case manager for us and we hadn’t met her, so the main purpose of the visit was to get to know each other and build a bit of a relationship. She arrives and says ‘just need to let you know that I have resigned’. Oh shit, here we go again. My immediate reaction is that I can’t be bothered talking to another new person who is about to leave -when I voice this she simply says ‘I will take notes and hand them over’. I have heard this so many times before- it just doesn’t really work, no one has time to read the extensive notes that are already on file. I am now just feeling like this meeting is pointless. Of course, we now have to follow through, but I don’t hold out any hope that this girl has any answers for us either. I ask the same questions I have asked before – can you tell me of any respite providers who will take Mitchell after he is 21 years. I get the rolled out answer that she can look into it, but 8 months into the job, she doesn’t know this much. I don’t blame her for leaving, I wouldn’t want to do that job either, but it feels depressing. We get the meeting over and done reasonably quickly and I think at age 19, it might be the first time anyone from Taikura has actually met Mitchell in person. I could be wrong, but usually he is at school or we have done the assessment over the phone. Not a lot of self direction for him there, but what are we supposed to do when this is how a system runs and we don’t have a relationship. Mitchell is not exactly going to sit down at the living room table and suddenly talk and say what he needs.

I head back to Sylvia Park after the meeting, arriving 15 minutes early and get the ultrasound done. I am sure it will be fine, but I will need to wait a few days to hear.

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