Unfiltered Thoughts: Log #1

Good morning! Happy Wednesday, friends, whānau, and any other lovely people who happen to stumble across my blog. Welcome to another one of my daily rambles, which I am now calling my unfiltered thoughts - I hope you enjoy!

Fair warning: I do get a bit grumpy throughout this blog, so I hope you don't mind - it's just a way for me to process my emotions.

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Unfiltered Thoughts: Log #1

It's 10:33 AM on Wednesday. The sun is shining outside my window. We live in the suburbs in Melbourne, and today it's quite quiet. I'm enjoying the peace because a lot of days someone is always mowing their f*cking lawn, and I hate listening to it every single day. I guess that's the problem with working from home and being self-employed, haha! And don't worry, it's not all bad. I love being able to work for myself and make content. I feel really passionate about writing.

The WiFI isn't working on my laptop for some reason, so I'm having to hotspot from my phone, which makes everything super hot to touch. I can't go and reset the router right now because Luke is in meetings for work. I did make myself an iced vanilla latte, though, and it was delicious.

I felt like writing a daily blog today because yesterday I had my 7th appointment with my exercise physiologist regarding the POTS/dysautonomia stuff, and she is just so weird. I got a call on Monday saying that she would be working from home, so my appointment would be online instead of in Heidelberg. It was 11:30 on Tuesday, and so exactly at that time, I logged onto the weird webcam thing. Anyway, she was over 10 minutes late, and I was just sitting there staring at myself in my webcam, which isn't flattering. Anyway, she finally shows up. Refuses to call me by my preferred name, Ash, even though I've told her a few times that I don't wanna be called Ashleigh. I feel a bit off because she doesn't even say anything about "oh, thanks for dealing with the change". Ugh, am I just a b*tch? Am I the problem here? Anyway, we went over stuff, and she said that because my dizziness has improved, I've "obviously" changed my medication or gone onto an anti-dizzy medication. I haven't. My Visible app has been giving me a lot of 4s, and my HRV is higher on the Visible app than my Garmin watch, but HRV is getting higher on Garmin (it's not the best, but it's improving). The EP said my HRV needs to be in the 80s for a woman of my age (not taking into consideration whatever is going on with my blood markers because she doesn't believe they are anything to worry about, and she's not even a doctor!!!!) I feel like Visible only gives you a snapshot of what's going on because you self-report x2 a day, and also, it only measures HR and HRV x1 a day. No shame to the Visible app, it's helpful in some ways, but as an OCD girly, all this data is A LOT. Ugh, I'm already grumpy writing about this, but I think it'll help me process the situation. She also said that when my in-laws get back, I'll probably have worse symptoms. And yes, sometimes they do stress me out, and I'm sure they're aware of it, but you can't just blame that (and there are days when I have a really good time with them). Like, I feel like I'm putting in so much effort into my health, my social life, and like the general hierarchy of needs pyramid thing (sorry Maslow, I don't have time to go off on a psychology tangent, but hopefully you know what I'm getting at here).

I was also told that now I'm not doing enough walking (60 mins per day isn't enough to get fit, apparently - even though my GP said this was all I needed). She told me point-blank that this wasn't good enough, and I don't have enough cardiovascular health and that walking was only good for mental health, not cardio (WTF?). So she said I MUST join a gym JUST to go and use the rowing machine, OR I could buy a product that was $250 to use, and I was like "well can't I just replicate the rowing machine with the resistance bands?" "No, you can't". I was like, well, gyms are expensive, and I am spending most of my disposable income on my health specialists. I also wanted to say, stop selling me sh*t because exercise should be free. Anyway, I felt my voice change, and she didn't notice that I was getting annoyed. Then she was like, "Well, go swimming then, it's only $8 a week". I was getting frustrated at this, but anyway, she was like "well, fine, we'll up your walking intensity then, so now you have to do X amount on walks and interval training on walks". I don't get why she didn't ask me what equipment I had at my disposal? Doesn't that seem like the best thing to do? Don't sell me a new product every time I see you. Like, I get that the products help, but WTF who has ALL this money to spend on stuff that "might" work? I don't think there's been an appointment where she hasn't recommended a product. Like appointment #1 was Sodii electrolytes, appointment #2 was Ancient Lakes Essential Electrolytes, appointment #3 was a book, appointment #4 was a yoga ball (which I did buy because I saw use for it AND resistance bands but I was like I have my own, appointment #5 was I'm not sure, appointment #6 was a neck fan, a ice cooling puffer jacket, and a sun umbrella, and appointment #7 was either join a gym, buy a rowing machine, buy a seated bike like a peloton, pay to go to the pool, or buy a bike pedal thing that costs $250. And I think most of them are affiliate links. Oh, and her appointments went from $200 up to $220, and no one told me. And I bet a lot of the people she sees don't have full-time jobs or a lot of disposable income.

In these moments, I didn't feel human. I felt reduced to nothing. I felt like it wasn't me who was putting in the work. I felt like a small child who couldn't stick up for herself. I didn't tell her about the extra exercises I put in - all I tell her about is that I do a 60-minute walk 6/7 days a week and my strength training x 2 a week. I don't tell her about my walking pad weights workout or my extra fun cardio workout I do. I can't tell her because she'll be like, "Well, that's not good for POTS, it must be recumbent". I think I've discussed what other stuff I've been doing in previous blogs, and yeah, I get that recumbent exercises help with the tachycardia, but I also need to do it for me. I am learning to listen to my body more because that is really important. She's also told me before that she hates core workouts, but to me, core workouts are really important, as a strong core acts as a second heart muscle and means less pain in my back. Like none of the exercises she gave me targeted core muscles, they target legs and arms, so I just had to add in my core exercises because I need those. Shouldn't a dysautonomia exercise physiologist be promoting core work??!

We then start to talk about anxiety stuff and what she calls DIMS/SIMS, as in "Danger in Me" and "Safety in Me". Previously, she's told me I need to get rid of ALL my anxiety (wut?) I don't know heaps about this stuff, but she was like "oh, you must have negative thoughts about yourself". "Why don't you make your condition your whole personality?" GAH. So the DIMS categories are as follows:

• Things you hear, see, and touch (environment)

• Things you do

• Things you say

• Things you think and believe

• Places you go

• Things happening in your body

  
  

And then you have to reframe the danger as something "safe". So the EP's example was going to the dentist with the drilling sounds for the environment, and to make it feel safe, she doesn't go as much. I was like I don't like those sounds either but I still go to the dentist every 6 months - I AM not going through a root canal again. Anyway, she put me on the spot to answer the first two. I struggled with the environment one as I didn't want to tell her about my OCD - she doesn't need to know that, and I didn't wanna have to explain why I'm scared of the doorbell because of the guy who tried to break in and gave me PTSD. All I said here was that I didn't really have environmental cues like this, and she went, "Well, you're lucky then". It just doesn't feel like a comfortable environment to open up. I kinda like to compare the EP to my psychologist, who put in the work to get to know me and make me feel comfortable. Like, wouldn't the EP have so many trauma patients that she should do at least some trauma-informed training?! I managed to come up with one example for "things you do" which was "I don't like walking at night by myself" and "I don't like walking through the creek trails by myself because there have been reports of men filming women, SA's, and other stuff" and he response to that was "well you could just take Luke with you or wear a head lamp to be safe". It feels like she's so removed from reality sometimes. Like what? A literal man is SA-ing and filming women, and your advice is to wear a headlamp, take a man with you?! I wouldn't be surprised if someone told her that they got r*ped and her response was "well, what were you wearing?" Just a really weird view on things IMO. She also talked about how what we say can affect our nervous system, so we shouldn't say things with anger or frustration. I don't agree with that. I think emotion is important. We can't be happy and positive ALL the time, otherwise we wouldn't appreciate when we are happy and positive. I get that trauma has a correlation with developing POTS, but it can't be the only bloody reason.

My brain likes to block out some stuff from the appointments with the EP now, too, but I remember her asking me about the negative stuff I say about myself, and I was like, "But I love myself, why would I be saying this?" And randomly she told me to give up my photography on the side and that my deadlines don't matter (yes, I know this is out of context here, but they were weird things to say).

I am really struggling with this DIMS/SIMS stuff, and I gotta fill it out for my next appointment. I just find it a bit jarring because I don't go out of my way to put myself in "danger". Yes, I have a theme in my life where I don't always feel safe, but it doesn't stop me from living my life. I'm scared of heights, but I still go up tall buildings. I don't like ordering coffee, but if I have to, I'll do it. And yes, I'll admit that there definitely have been times when I've frozen in places, but I've gotten through it. Avoiding dangerous situations doesn't really feel like the answer here. I also don't really go out of my way to put myself IN dangerous situations, but I don't avoid them either.

I'm going to look up more information about DIMS & SIMS. According to "this source", DIMS and SIMS were created by exercise physiologists Mosley and Butler, who say ", You will have pain when your brain concludes that there is more credible evidence of danger in me than there is credible evidence of safety in me." So it's to do with pain? The only pain I get is back pain. I used to get A LOT of PEMS when I was doing HIIT workouts or doing too much in general, which stands for post-exertional malaise and is very common in chronic fatigue syndrome (or ME), but as I've changed my exercise and am doing it more, I don't get as many PEMs. I've had DOMS, but that's because I've been using weights, and that's normal. It's good pain!! I also don't associate my slipped disc in my back with something dangerous. My gut feeling about this whole situation is that whatever is causing my crazy blood markers (high platelets that keep going up, high white blood cells, high red blood cells, and high CRP) is the main cause (A) of what's going on in my body and perhaps that the POTS symptoms (B) are secondary and caused by A.

I am struggling with this programme. I have one more appointment with the EP, and I cannot wait until it's over. I wish I could tell her how uncomfortable she's made me, and my psychologist has encouraged me to with my boundary-setting work, but I just shut down sometimes and don't feel like I can stick up for myself with her. Maybe it's because I know it's not going to do anything. I just don't want other patients she sees to have the same experience. A friend of mine told me I should make a complaint to the board, and I looked it up, and you gotta have a lot of proof - like this is just my word here. You also have to ask for something like an apology or compensation and prove that there was damage caused by the medical professional. So you can't really stay anonymous, and if I do see the specialist doctor at the same clinic in December, it might become an issue. So for now, I'm dealing with it by bitching about it on my blog and to anyone who listens, ahah (no, it's not my whole personality - I AM more than my health). I just think it's important to talk about this stuff.

Luke also heard some of the appointment because I didn't feel like wearing headphones and said she sounded like a reporter who has no rapport with the person she's interviewing or empathy. I feel so bad venting about this, but it's just a lot for someone with so much going on. In reality, I'd love to be able to afford to go to the gym. When I had a free gym at uni, I went so much and was SUPER fit. I loved being fit and strong. I feel like now I am slowly getting my fitness back, and I think choosing what works for me is important. I think this must be an OCD thing, trying to convince myself that I am doing the right thing while feeling guilty about not doing fully what the EP has advised. I also feel like making use of the equipment you have is good, instead of just spending so much money (soz if that's repetitive, but we're in a cost of living crisis goddammit!)

Like changing my electrolytes to a homemade one with coconut water has been SO much better on my IBS-sensitive tummy, strength training + core workouts have made me want to exercise more and most days I wake up wanting to exercise (I didn't have that for a long time and I LOVE exercise), eating my overnight oats with chia seeds has also helped my tummy and my energy levels, and doing my walks is good. I've also been WAY more social, and I think I am realising how much of an extrovert I really am. I still love alone time, but talking to people is fun too. I went out with one of Luke's friends and their new partner - and asked lots of questions. We had dinner at Penny Young. I'm also seeing one of my kiwi mates tomorrow, and I've been talking to our neighbours more and even participating in Reddit discussion threads for TV shows in real time. Like it's not heaps, but when I lived in CHCH and was at uni, I knew everyone. I have also been cooking more, and food is really important to me, so when people like the EP accuse me of having an ED, I get a bit f*cked off. I have such a healthy relationship with food, and now I am scared of developing an ED. My body image could be a bit better, but I still love myself.

Gah, I sound so conceited here. But like a lot of days at uni, I would go for a walk, and I would ALWAYS end up talking to someone, whether it was a student, a professor, a friend, or someone from a first-year class. One of my friends back in New Zealand pointed something out to me a few weeks ago. She said that I am not as much of a social butterfly anymore, and I got a bit offended and was like, "I still do XYZ", but in reality, she was probably right. I don't socialise as much now. I get worried that if I go somewhere, I'm just gonna get covered in sweat or be embarrassed if I need to sit down. I used to go out dancing every week - sometimes with alcohol, sometimes not. It was fun. Ironically, I said happy birthday to someone with whom I took a linguistics class in like 2015 on Facebook a while back, and she was like, "I've been reading your blogs," and it was just the most unexpected thing to me. I was like omg, wow, okay, thank you. I hope that when she is in Melbourne, she reaches out for a coffee catch-up. It reminds me of one of those books I read last month, and how it said: "You never really know the impact you make on someone's life". I think in the book the example was that the person's mum had just passed away, and there was someone they didn't recognise at the funeral, and they went up and asked how they knew their mum, and the man said: "I didn't really, I saw her picture in the paper and wanted to come, I didn't even know her name until now". They were talking, and I am already tearing up writing this because it's such a wholesome story. Anyway, the mum and this man were talking on a bus, and the mum turned to him and was like, "You look like you need to talk, what's going on?" And so they talked about how the man's life wasn't good at the time, and that was a day he was thinking about ending his life. Anyway, because the mum talked to him, he didn't end his life, and he wanted to pay his respects when he saw the picture of the woman in the paper. It's just such a nice story, and I like to remind myself that maybe I've had that sorta impact on someone and I just don't know it.

It's also important to be kind to people because you don't always know what they're going through. Maybe someone doesn't smile back at you - maybe they didn't see, or maybe they just lost someone who had a bad day. I have such a bad habit of getting grumpy if someone doesn't smile back at me, and it's so stupid because I don't know what's going on in their life, and I know how awful it is when an older man is like, "smile more, you'll look more appealing/attractive". I've never told anyone that myself, but it's been said to me so many times. It makes me grimace or give them a creepy smile, and they usually get uncomfortable and walk away. I think more women should make men uncomfortable. I would like to live in a world like that one day. On behalf of ALL women, we've had enough.

And damn, this blog got very long. I've been writing on and off all day. It's now 1:48 PM, and sometimes I worry that I am always rushing to get things finished, but I gotta remind myself that it's okay to slow down. The WiFi is back up and running, thankfully, and I stopped for lunch and decided it would be a good idea to bake Russian Fudge in the middle of the day. I hope it works. I haven't made it in over a year, but it's one of my favourite fudge recipes. I don't really know why it's called Russian Fudge when the recipe comes from New Zealand lol (love you, Edmonds - the cookbook, not a person, that would be weird). I was worried that I couldn't do it for a minute or two, but I managed. It even took a while for my heart rate to get over 100, although it was at 96 for most of my baking time. Standing in the kitchen can be hard, but as I said earlier, food is something that gives me joy, making it, eating it, going out to eat. It's just so fun! And if we're going back to Maslow, being able to make food again is helping me reach my self-actualisation level.

Anyway, I think I should stop writing, otherwise things might start to not make sense anymore. This afternoon, we need to take Benji for a walk, and I think Luke wants to make some sort of chicken taco bake thing for dinner, so I am looking forward to that. I am also looking forward to this week's episode of Gruen. That's a show that I'd love to be on, but I don't work in advertising HAHA.

If you've made it this far, thank you! Let me know how your day is going in the comments below.

Ash xx