Tag 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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Dear Headache. Please leave.

I’ve had a terrible headache starting yesterday afternoon, and it wouldn’t go away with ipbrofen and paracetemol. It lasted all night and consequently I had a pretty crappy sleep. But I still have it! And its really starting to get on my nerves, because I cant figure out why I have it – I haven’t fainted and hit my head recently, I have already withdrawn from coffee, and it wont go away with regular painkillers!

So I’m feeling pretty lousy today, I need a shower, but I can’t be bothered, don’t feel like eating, feeling nauseated because of this headache, and the back of my eyes hurt. Rarrr. Plus, I have a sore jaw on one side, which feels like it might dislocate itself if I am not careful.

Oh and my new sleeping pill to replace the other ones that have stopped working? Even worse. Didn’t feel sedated at all and had a really bad sleep.

I’m going out with a friend soon, and I am feeling a tad nervous about it, because… ya know, general anxiety about going out into the real world. But shes a very close friend so hopefully it will be ok. We are apparently going with her little boy to see a robot dinosaur.. whatever that is. Sounds like a laugh anyway.

I’m sorry to all my readers who have left comments that I haven’t got around to reading yet – Its feeling a bit overwhelming at the moment, but I will read and reply when I am in a better state of mind. I promise 🙂

Better go get myself ready. Love ya and leave you all 🙂

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!

 

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.)

 

Not Fasting

So all my hype of fasting for 40 days… yeah…. i came to my senses. I didnt eat for two days and realised how i was inevitably going to end up in hospital whether i liked it or not. But more what prevented me was that i KNEW that i would actually only be making myself fatter by doing that.

So im eating. i am only eating at night time though, one meal a day, and i will have whatever i feel like. I have been really stingy on money lately, so im just managing to create things out of my pantry. I havent bought food in weeks!! I will have to soon though.

Emotionally im a mess. Theres just too much going on. My evil flatmate came back from her holiday the other night and said to me she thinks i should still be living at home with my parents. She thinks i cant cope with life, and im too immature. She even txted my mum saying that she doesnt think i can hold down a job and should go home. Then she sent me this bitchy txt moaning about me not putting dishes away or putting the rubbish out type thing. (really im not that bad… but im not a mid 30s perfect housekeeper) then she made “rules” that i have to do all the dishes and clean the kitchen including wiping the table down, and underneath it before i go to bed everynight. Aka perfection. I barely have enough energy in the evenings to even make dinner, let alone clean the kitchen! So its almost easier to just not eat! I have been really upset over how she views me. She basically thinks im useless, selfish, lazy, immature… the list could go on! I HATE living with her, but i cant leave. I am stuck in a lease for a year. And i WISH we could have a third flatmate so i could afford life better. But oh no! She needs the third bedroom for an office! Which she only pays 60 dollars per week for. NZD. And she has the biggest bedroom as well. And she makes all these rules that i have to abide by. Im not even allowed my friends in the house, yet shes allowed whoever and however many she likes. Its so unfair. Im so anxious living in this house, Everytime i hear footsteps or a door open or shut etc – basically ANY noise, i start freaking out – hyperventilating, unable to move, or unable to breathe, tight chest … close on a panic attack.. not quite, but near. Thats no fun all of the time! She also judges all the food i eat, giving me condescending looks if i dare eat something like white bread or white rice, or any budget brand or NORMAL food, while she snootily eats her organic wholemeal type grossness! 
On top of that stress, I then have all this business with my old sexual abuse coming up from the authorities that want me to be reassesed, so im having to read old reports and accounts of what happened, and my counselling reports from when i was a kid. So thats rehashing up some dreadful stuff, which is hard to cope with. And it makes me realise how much i cant remember. I have actually lost a large proportion of my childhood memories. And also the counsellors report was a load off bull**** But i cant talk to anyone about any of this stuff because its awkward. well i can talk to my neighbour/bestie … but i havent seen her in ages, shes been busy and i dont want to disturb her with moaning and needing help all the time. And my therapist i cant talk with properly, because she always cuts the sessions short, and mostly asks me how the weeks been at the start – i always say “ok” and then some minor insignificant things that have been happening, we talk about it for a few mins, then she goes on to teach me some mindfulness exercise or something. which is useful, i agree, she knows what shes doing. im just not getting that release from things that are majorly stressing me. maybe because theres too many things i need to talk about at the moment, she would have to listen to me all day! And my case managers good about letting me rant about stuff, and tbh i feel more comfortable talking with her.. but i havent seen her in ages, because i had to cancel an appt because i had concussion and needed to go to the doctor. so its been maybe 5 weeks since i have seen her. 
And continuing my rant – because i need to get it all out- Im feeling sick all the time, feeling really fat and not able to lose weight like i used to which is really frustrating! So the eating disorder continual stuff is rearing up, im wanting to self harm but trying to avoid it. Some PTSD flash backs, and randomly feeling sad for no particular reason, just overwhelmed with everything. and holding back tears most of the time, whilst pretending to the world that im fine and couldnt be happier! Because, you know, cant have them think im not coping because that makes me weak and incapable of living away from my parents.  

Im also feeling bad for not being able to do as much bible work as i used to, and feel like everyone is judging me because of it. aka im not good enough. 

Works another bitchfest but hey, i think ive already moaned about that.

Alrighty, im gonna sign off now.

 

Ta ta!Image

Day one

Image

So today is day one of my fasting. Ive not at all been hungry, and mostly feeling really good apart from headache and nausea from my concussion. I  woke up at about 8 and forced myself to go back to sleep till 10 – got up and scootered down the hill to catch the bus to get to therapy. So another 45 mins later the bus arrives, and I get to the waiting room, to find that the receptionist is on the phone… and she remains so for 15 mins… so my therapist doesnt know im waiting, and probably thinks im a slacker and am late! 
In therapy we practiced mindfulness – but this time instead of focusing on the breath, we were focusing on an object. I was super good at it, and didn’t get distracted at all. 😀 Yay for small wins! But before we did that, she opened my sensitive claim from when i was a kid, and i also got sent one to my house – it talks about all the abuse and counselling i had when i was a kid. It really upset me. Ive been at home in tears for the last hour over it. 
Im going to use it as motivation to not eat though. No way hosea am i going to eat. I just watched super skinny me on youtube, and now i feel the need to go out and exercise for 2 hours, and i feel bad for being in bed! I did scooter for about 45 mins today though so theres some solace. The problem is, i really want to exercise, i have the energy to for once, BUT im not allowed to! 😦 How important is it with a concussion not to exercise anyway?? I think i will just get back into it anyway. i cant handle not exercising. Plus, my metabolism is going to slow down majorly if i dont. so i have to right?? 
Another question – how important is it to take anti inflammatory pain killers or paracetamol with food? Because my headache is killing me, but im not going to eat. can i still take my meds?

Day 1 is so boring, i wish it was day 14 right now, because then i will feel a sense of achievement and awesomeness. Day 40 will be even better, but i bet i will be feeling so sick. I dont even care if my heart fails along the way. as long as i get skinny. Besides, so many people have managed 40 day fasts without ending up in hospital, so i am determined to not be pathetic, and just get over myself. I do not want another ED trip where a doctor says there is nothing wrong with me go away (how embarrassing!) – that was from pots though, not eating stuff, and the doctor did not know anything about it.

Right, im seriously rambling now. So i had better stop.

Luv ya all xx

Eating up all the food!

Im trying to eat up all the fresh food that i have in my house so that i can go on my fast. I feel so full! But i really want to start tomorrow… Which is prob not gonna happen as i have sooo much food left arrrgh! (hey at least im saving money no? :P)
Today i have eaten 1 ginger kiss, about half a loaf of olive and herb specialty bread, 3 kiwi fruit, 1 banana and 2 oranges – well not quite, but im getting there! Oh i forgot. also this morning i had a small apple pie from maccas, and ive had 2 hot chocolates with soy milk. Heaps of food ae!! Sigh.
My only dilema with this fasting business is my mum – she threatened to come up as soon as i did it again. Last time she wouldnt leave for 2 MONTHS!!!! It was a nightmare! So i need to be subtle about it so my flatmate doesnt let her know. or my other friends that have her number now -_- Oh and that not eating makes POTS and dysautonomia  MUCH worse by about 1000X… but oh well. at least im used to it.

Bring on the:

Shakes, palpitations, extraordinary tachycardia, dehydration, inability to even lift arms or fingers (about 2 weeks in), numbness and tingling in arms legs and face, extreme fatigue, blood sugar levels through the floor, blood pressure also through the floor, weakness, extra dizzyness and blackouts, nausea, headaches, awkward tummy grumbling (the type that sounds like its from a giant) stomach pain, loss of hunger(no complaints here), but instead extreme cravings for random stuff that i usually hate – like peanut butter (no im not pregnant??!)

Then theres the mental things:

Thinking about food all the time, hiding away from any social event or your friends so as to avoid food, or awkward questions suspicions or lectures, being so sick that work is nearly impossible and you are like a zombie! (i take solace in the fact that i was still able to work 6 days somehow magically right up until i was hospitalised at the end of the 2nd week. I freaked out at my symptoms and called the doctor when my heart rate was going over 200 bpm in the shower. Now i know that that in itself isnt too bad, and ive done a weeks fast since then. That first one i was still over exercising for at least the first week – aka 3 hour runs no stopping in the evenings after 4 hours of swimming, and 4 hours of walking. So i will try to be less active this time. work i have to stand up all day, and i usually go to the gym everyday for a couple of hours, but because of my concussion i am not allowed to exercise, and i want to make 40 days this time, so i will take it easy. not too easy, but easier.

Im guessing my start date will be thursday, if i can get all this food eaten tomorrow 😛

Oh the other stink thing will be work – its hard enough already without all the extra symptoms. but at least doing this will take my mind off all the nasty people at work, and i wont care too much or even notice if they speak to me in a mean way. What WILL be awkward is them noticing. Because they already ask me EVERYDAY if i have eaten breakfast. If i say no, they almost try to force me into it, or question me about what im having for lunch. Hmmm. I cant directly lie… but i need some subtle discretion here! Thoughts anyone?

Thats all for now!

 

Love you all! Hope everyone is being a much better person than i am 😛

I give up!

Image

 

Im such a failure at life. I want to give up! Because of stupid Dysautonomia/Pots I am too ill to do anything properly, i cant do the things that i enjoy, everything is being one by one taken away from me. Im not a fighter, im a failure! And to top it off, im the fattest ive ever been in my entire life for no particularly good reason! I hate it all and im sick of it! I GIVE UP

I am not talking suicide. Im not that angry. I am going to stop eating entirely. not today and not tomorrow. When I have finished all my fresh food in the house (i hate wastage i feel too bad for children in africa) which shouldnt take toooo long, maybe a week or less, then i will start. No food, no calories whatsoever. just water. I will refuse to go to hospital at any point. I want to do 40 days fasting then a few days off, then repeat the pattern. I dont care if i die. Because what kind of life am i living anyway??