Category Archives: Dysautonomia

Holiday

So I’m on holiday at the moment. So far I have survived the flight, and managed the supermarket with mum and Tayla. I even went to get a haircut with mums hairdresser at her house,  which was actually really good, because she didn’t have a mirror sitting in front of me, and mum did all the talking so I didnt have to! Plus she did a good job! She works for a fancy salon but also does some on the side at home. Its so much cheaper here than in Melbourne! 

I also went shopping with mum for a pill box – we ended up getting one that fits all my medication boxes etc. The other is an organiser, so I can remember whether I have taken my meds or not. Its proving very handy, but I feel like such an old lady. Damn dysautonomia problems!

Today I chilled at mums house,  and some good friends came to visit. So I didnt have to leave the house which was nice and relaxing. It was nice to see some old friends.

Anyway thats about all thats interesting about me at the moment. Hope you are all well xx

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Vivid visions of my own demise???!

Today I woke up feeling grumpy with the world that I had to be alive. I tried to sleep for as long as possible to delay the living part of the day. A politician came to the door mid morning which woke me up, and I couldn’t get back to sleep after that, as I was kind of eaves dropping on my flatmate Kaitlyns conversation with him, while I lay in bed trying not to be anxious about it. 

grumpy poo

When I finally got up, i was in such a gloomy grump. But i made myself go and say hello to Kaitlyn, or else I would have spent the whole day in my room by myself, and probably would have made her feel like I was grumpy with her or something (which I wasn’t). Funnily enough I ended up hanging out with her pretty much all day watching Out-lander and doing my crochet. 

outlander

So I started cheering up a bit being around Kaitlyn, didn’t want to be a grumpy pants for her all day. Still had a lot of very intrusive thoughts though, which made it very hard to concentrate on the movie. I had to stop and ask what was going on so many times. But she was lovely and was happy to pause and explain it to me. She must think I am really dumb/ slow! 

I tell you, I am usually reasonably bright and able to comprehend things easily. But it feels like lately half of my brain power has been taken away from me. Its like a big fog in my mind. Either that state of blurry nothingness, or a rampant trail of intrusive negative thoughts and images, that I cannot, no matter how hard I try, get rid of.

technical difficulties

For instance, while watching the movie, about 5% of my brain power went into my crochet, 15% into the movie, and the remaining 80% was imagining my own gruesome death, or cutting major arteries, or watching my friends and families reactions after my death etc etc etc. It is so incredibly vivid, that I feel the emotions, imagining what it would feel like at every stage of my death. But then also, encompassing the raw emotions of the aftermath in the feelings of those who know me.

This kind of thinking goes on almost all the time for me. I have only just realised, that in reality, i spend pretty much 24/7 thinking about suicide. Or at least, major self harm.

over thinking

 

I imagine myself in the shower, cutting, and accidentally (or not so accidentally) hitting an artery. I watch the blood spurt up to the ceiling and make a right mess. I watch myself scream out to my flatmates to call an ambulance, whilst trying to control the bleeding, and failing. Trying to wrap a towel round myself, and then regretting calling out to my flatmates. I then imagine what would happen if i hadn’t called out to them, and picture myself crumpled naked in the shower, surrounded by my own blood. I see my flatmates knocking on the door, wondering who was in there. I watch them wait, impatiently, and then get concerned. It takes them over an hour before they go to the measure of trying to get in through the window. Then they see the horrible frightening scene, and totally panic, screaming, crying. 

At this point, i start feeling guilty, and then i feel embarrassed at the thought of anyone seeing me naked. But the vision goes on. I jump to seeing the rest of my friends, and my family, absolutely distraught and very angry. I see them trying to make funeral arrangements, but nobody wants to take it, because it was a death by suicide. When they do finally find someone, they have to be very careful about the wording of the talk, because there’s no promises for those who commit the sin of self murder.

I could continue on, but I think I will stop there. 

stop

I got a letter in the mail, mid afternoon, and it pissed me off to no end. I read it, then in a moment of rage, furiously scrumpled it all up and threw it across the room. Giving Kaitlyn a heck of a fright. It was a letter from the hospital saying I had a cardiology appointment with this dumb arrogant doctor. The one who wrote to my psychiatrist and said that he doesn’t think anythings wrong with me, and that I don’t have POTS (which I was diagnosed with a year ago). Now in the letter to the psychiatrist, he said he wasn’t going to see me, nor was my POTS specialist, who also apparently now thinks i don’t have POTS and that I was just lying about stuff. I have actually never seen this cardiologist before, so i don’t know why he has now made an appointment to see me. I bet its to “explain” all of the correspondence and their thoughts about the POTS thing. Which will make me SO angry that its not funny. 

Even after just getting the appointment letter today, I was really angry. Still am! 

angry

So right now Im in a bad state, really really really feel like cutting my arm. Which for some reason feels preferable to my leg right now, as its a different kind of pain sensation that I’m after. But cutting my arm is no good, because I cant stitch up my own arm. So I would have to go to ED. Which totally sucks, and I really don’t want to spend the night there.

I think Kaitlyns worried that I might self harm, she keeps coming in and checking on me and saying “don’t do something stupid”. Which is the exact terminology I used to explain it to them the last time I cut my arm and had to be whisked off to hospital by ambulance. My flatmates don’t know that I have been self harming since then.

Anyway, I’ve just realised this post has become very long (sorry)! So congrats and thank you if you have read it this far! 

Passing out in public.. I don’t recommend it!

Today I managed to accomplish quite a lot in terms of my anxiety. I went to see the volunteer coordinator to tell her I couldn’t continue – she said they were not going to accept me anyway, because of my past. Don’t ya just love rejection? And I managed that without tooo much anxiety. 

Then I chilled at home for a bit, and got my inner nana on – and did a bit on my crochet. Then my lovely flatmate dragged me off for a walk to the warehouse, which I really really didn’t want to do, but mum and H ganged up on me, so I had to go. Anyway, I was a total anxious mess, and I don’t think H really realised how bad I was going to be. Because I wasn’t breathing very well, hyperventilating and whatnot, plus my bodies lovely relationship with gravity – I ended up passing out in the middle of the warehouse. How embarrassing! Then H felt bad for making me come out, then I felt bad for making her feel bad, and for scaring her. And then we walked home. So much stressss! 

Then I went out to my friends for a Bible study session, which I do every week with 3 close friends. So they picked me up and dropped me off, and it wasn’t too stressful.

And now, I have to try and go to sleep (sleep hates me at the moment) because I have to get up really early to go to Nanas on the train. So I will update more later.

Thanks all you lovelies who read my blog and comment, it really means a lot to me.

 

I need sleeeeep!!

Oh my, I am struggling to stay awake

sleepy

Every inch of my body just wants to lie down and fall asleep. 

I did go out this morning, then went to the supermarket, and taxied home. I am quite proud of my efforts actually! Helps that I went out with very supportive people who picked me up, and were good at making me feel relaxed and comfortable. They dropped me at the supermarket afterwards, where I bought way too much food! 

Having too much food is probably a good thing at this stage though, because hopefully it means I won’t need to go to the supermarket for ages. I don’t usually shop like this, but I got heaps of pre-packaged microwave type meals, so that when I am too anxious to cook, or leave my room etc – I can still have something to eat for dinner/ lunch. 

groceries

My list that I made last night, of course, did not make it into my bag, and half the things I had planned to get, I forgot about. Typical.

All of that must have been far too exhausting for me, because when I got home, i accidentally fell asleep for about 3 hours… until a politician came and knocked on my door and I had to get up, and politely tell them, that no, actually, I didn’t want a huge sign advertising their party on my fence thank you very much.

So since then I have been resisting the urge to fall back asleep, because I want to be able to sleep tonight!

 

Calling the Parentals…

I just talked to mum on the phone for ages. Shes kinda freaking out a little about my state:

  • Too anxious to leave my bedroom
  • Too anxious to feed myself – apparently surviving off coffee, more coffee, and toast doesn’t count? Who would have known!
  • Missing important appointments and not realising, because I’m just consumed with my anxiety/fatigue
  • Not getting out of bed/not showering/not really functioning..
  • Self harming
  • Going from talking really fast non stop one day to being miserable and crying the next

There’s probably more I am forgetting. But I didn’t really put two and two together and realise, actually how low functioning I am at the moment!?

Then she started telling me that it wasn’t acceptable and that I should just pray more and I would be better. Sorry mum, but I’m already doing that quite a bit, and I’m not saying that it doesn’t help it does , but I still have crippling anxiety and self harm behavior. It’s not really a matter of, just try harder. It doesn’t really work like that!

So I’m feeling pretty miserable right now. Like a complete baddie failure at life. I also need to get up in the morning unfortunately. And I’m already freaking out about having to go out. 

If I’m this bad after two weeks of no mental health support… how am I going to manage the next 6 on my own???!

10 ways to tell if you are allergic to gravity!

Today is a POTSie day

You are probably thinking – What on earth is POTSie? Well, fair question. It’s a bit of a slang term commonly used by those of us lucky enough to be allergic to gravity – or standing up! POTS – aka Postural Orthostatic Tachycardia Syndrome is a chronic autonomic condition that I have to fight everyday. 

So, here’s 10 ways to tell if you are allergic to gravity:

  1. You feel like you have been running a marathon all day. All day yesterday too. And the day before that…tired
  2. You randomly feel the need to sit down in the middle of the supermarket, on the street,or anywhere else for that matter (insert embarrassing place here)
  3. You have a love hate relationship with exercise… well, mostly hate. Lets be honest people. After 2 minutes, this is you:

gym

 

  4.  You need to drink an entire swimming pool a day to even vaguely survive!

  5.  Salty food is your best friend, and you regularly get disapproving looks from others when salting your food…

  6.  Sometimes you feel like this man here:

pill man

  7. The floor is your best friend:

fall

  8. Sleep is your second best friend… when you can catch him

sleep

 

  9. Your heart rate could be likened to the speed of a Springbok

springbok

  10. You’re not a quitter!!

 

Keep hanging in there my fellow POTsies!!

(I was sitting here feeling pretty yuk, so I thought I would pop on my heart rate monitor. Aaaaand sure enough, my heart rate is being screwy! 100 sitting… 150 standing sigh.)