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Hi Elfie,

I'm sorry you're feeling like this! It's always a tough decision to make - I decided about 12 months ago to stop work and pack up life where I was - from my parents place it was a full day travel (2hrs by plane, then another 2hrs by car) - and move back home to have a break from the 9-5 routine and study for 12 months (so I could change career into what I was more interested in.) For me personally, it was the best thing to do in terms of improving my health. Luckily, there is plenty of space here in terms of privacy and the climate is heaps better than where I was working and I like being in a more rural area. My family know about dysautonomia and if I mention that I don't think I'll be able to do something, they're ok and pretty understanding. My health has improved so much that they kind of forget it can still be an issue at times. My dad also doesn't really get it, but he understands there is something wrong and it's not just in my mind so I just don't look to him for active support. Either way, he's still there and it's nice to be around family a lot more of the time, even when they drive you bonkers. Studying online definitely has it's benefits, especially if you have a pretty decent group of friends in your hometown. lol, I did that fulltime this semester and that did send me a bit crazy and was way too much time in front of the computer. And careerwise, transferring sounds like it's the way to go - experience and internships are so valuable in terms of looking for work later on. Go with your instincts though, they're usually right. Maybe if your family is driving you too crazy, you could stay with a friend for a few days every so often?

I would LOVE to be able to sleep more. I struggle to sleep more than about 7 hours, 8 if I'm lucky. But yes, lack of sleep is bad in terms of triggering symptoms, especially in the morning.

If I'm sitting in a chair, I like it to have armrests or something solid to balance against. I always have my feet up on the seat too - on the rare occasion my feet actually reach the floor, it's ok for a while, but usually they don't and then I feel blah pretty quickly.

Nic

I forgot to ask as well, do you know what triggered your dysutonomia? Is it possible that a parasite/neurotoxin-secreting-little-critter could be part of that? I just say that bc after an insect bite (their venom is a neurotoxin) and treatment with a large dose of antivenom, that was when my health took a turn for the worse

I went to see a nutritionist for the first time a few weeks ago and she did iridology, which was SPOOKY. She went through all of my organs and described how they function to a tee and even described parts of my personality. I had nooo idea the eyes could tell you so much. She gave me a range of supplements to take, and after three weeks, I actually think I'm feeling consistently better than I was before. More tolerance to light, the adrenaline surges aren't as bad, less irritable, concentrating better (yay!), sleeping better (double yay!) and even standing is easier. I figure that even if it doesn't 'fix' me, having your body in balance and improving digestion can only be a good thing and will ease the stress it's under, which should improve dysauto symptoms. What treatment is he recommending? Let us know how you go!!

We had pet rats and although there were no pet mice, we had a few mouse plagues when I was growing up.

This isn't rodent-exchange-of-fluids related, but I think my dysauto is due to or has been exacerbated by a redback spider bite and the large dose of antivenom I had.

I guess there are lots of avenues how weird and sometimes nasty chemicals can get into our bodies.

Hmm..... I can do fish ok, but fish oil or flaxseed supplements make me feel pretty crook so I avoid them

Hi Tilly,

I totally sympathise. One of the hardest things about pots is that you often look really healthy and well, even when you feel like absolute death, so people who remember you fit and full of energy forget that you can have trouble doing the most normal activities, let alone exercise. THe amount of exercise I've been able to do has improved a million-fold so I hope you get some improvement too soon. I found that gradually increasing the amount of walking I did was very helpful. Bushwalking is probably the best thing for me at the moment since it bumps up my heart rate more that just walking on a flat surface. Pilates and yoga are very good for muscle tone, maintaining core strength and improving circulation. I love swimming so have been able to work back up to doing 1-1.5km at a time. For everything it's been a process of finding the balance of just extending myself, but not overdoing it. It might be a good idea to limit any adrenaline-producing exercise like aerobics for a while. I can swim for 45 mins or so, but 5 minutes of running and that's it, completely stuffed for the day. It sounds like exercise has been quite a social event for you in the past, maybe you could get a group to do yoga with you once a week? I was quite self-concious when I first found myself so physically limited, but you've just gotta do what's best for your body and the people who really matter will understand and support you regardless.

Thank you everyone for your awesome responses!! I was planning on just black ink, which I've heard isn't reactive - hadn't heard you can get an allergy test though so that might be a good idea. I've never felt off after having a blood test, but vaccinations and insect bites can make me feel icky so that's why I was concerned any injection of a foreign substance might trigger a response.

As for the pain...... hmm...... it'll be on my shoulder and apparently that's not too bad a bad place. I might even be able to lie down! It?s more anxiety/bright lights/hot weather that exacerbate my symptoms. It's hard to know having not had any painful experiences lately. I have piercings in the top and bottom of my ears and I don?t remember getting light headed or anything like that- they were all done well before I got sick though. A good friend is going with me so there will be help available if I feel really crook.

Cat Lady, what type of tattoo are you thinking of?? 5? x 8? is pretty big!!

I realise this is a topic that some people have quite a strong opinion about, but it's something that I've put HEAPS of thought into and what I would like to get is very meaningful to me and pretty much sums up my approach to life, wanderlust, love of reading, the usual life obstacles and dysautonomia and how I've been working to improve my health. If these 7 words were in a dictionary, my pic would be right there. So just to say up front, I fully realise a tattoo is permanent, but I believe that even in 50 years I will still love and adore this phrase.

I was wondering though, if anyone had any experience getting a tattoo and how they reacted both the the procedure and to the ink itself? I know that pain can exacerbate symptoms. I've never had any issues with needles while I've been sick, but they're usually over pretty quickly. And the ink, do you think there would be some kind of immune response or weird reaction to it??

Thanks for your help

I used to smoke pot every so often a few years ago. I suspect that I developed a mild form of POTS or dysautonomia in the midst of this because there was a change in how my body responded to the drug - would get nauseus, have absolutely no coordination, head spun, heart would race, really really dry mouth, and had noooo concentration and couldn't focus on a conversation. Sounds like POTS hey? I'm not sure if it was the tobacco my body was responding to (don't handle being around cigarettes well now) or the cannabis, but it wasn't much fun.. and hence I stopped smoking it. Lol, and now green tea is my drug of choice when I have a queasy stomach - how rebellious!! So, from personal experience.... I wouldn't recommend smoking cannabis because it seems to exarcebate auto symptoms, even really mild ones.