Wednesday, 3 October 2012

5 Tips for the Newly Diagnosed Dysautonomia Patient.


Dysautonomia has been a major part of my life for the last eight years. What I have recently realised is now the majority of my 30's (yes, I'm slow on the uptake). Those early days were scary. Even as a well educated woman, working in health care at the time, I felt alone and overwhelmed  Not a experience I would wish to repeat or wish on anyone else.

Whilst, it is now easier to get clinical information about the various subtypes, diagnostic testing and treatments, it is still the information about what actually living with Dysautonomia is like, that is still lacking. And a quick scan around the forums tells me that many of my early experiences are still being repeated with patients all around the world.

So what do I wish someone had told me right back at the beginning? So many things come to mind, but these are my top 5.
  1. You're not crazy.
If I had a dollar coin for every time a fellow patients said, "my doctor told me I was just anxious", well I'd have a really large pile of sparkly coins which are too heavy for my arms of patheticness to carry. Intellectually I knew that I wasn't imagining my symptoms, and I knew I didn't have a mood or anxiety disorder. Yet, the words "it's all in your head" said by one callous doctor, sat in the back of my mind long after I had my diagnosis. Damaging words, and it took a long time to work past that self doubt, even when I had clear test results that confirmed my diagnosis. It's hard to admit that, but it's the truth and it's taken a long time to take my power back from that one cold medico.  I've written about the conundrum that is the ANS and psychiatric diagnoses before so I wont rehash it here. But I want you to know that YOU'RE NOT CRAZY.

Dysautonomia is a difficult collection of illnesses to understand. It is unpredictable and frequently undetectable, by the standard battery of investigations. Symptoms wax and wane. We have a good day followed by a bad. What we could do one day we can't do the next. The permanent Fight or Flight response we live with, leaves our body on permanent high alert. We startle easily and over-react to any stimuli, be it anything from sound to fragrance. And the ultimate joke, is that the brain fog that plagues us thanks to poor cerebral profusion, means we are often unable to articulate exactly what we are experiencing. Search for a doctor who understands Dysautonomia and is willing to work with you, even a single doctor who is willing to learn will make all the difference. Just because a disorder isn't well know, or easy to identify, doesn't mean that you have a psychiatric or psychological problem.  Dysautonomia is a physiological malfunction through and through. I've been there, and so have the majority of patients. Trust yourself and what you are experiencing. You know the truth of your experience better than anyone.

    2.  You're not alone.

When I was first diagnosed I knew of no other patients. Even having worked in neurology I'd never really  heard of Dysautonomia or the majority of it's subtypes. Eventually, the Yellow Wiggle, Greg Page, came out to say he had Orthostatic Intolerance and bringing some awareness to the disorders, but still I had no contact with other patients. Then I discovered a support group, and with it came relief. I wasn't alone. There were other people all over the world who were going through the same issues, and they understood. They understood the stress of the diagnostic process, the absurdity of lying down in the middle of a shopping centre, or planning trips by public toilet availability. They understood the tears and the laughter and the weird thoughts you have that you could share with no one else. Accurate statistics on Dysautonomia are poor at best. It is likely there are millions of people world wide who experience some form of Dysautonomia, especially when you consider that in the USA alone it is thought that over 500,000 people have, Postural Orthostatic Tachycardia Syndrome (POTS), just one of the many subtypes. We are far from alone in this struggle. Whilst social media, such as FaceBook, Twitter and blogging has shown just how many of us there are, the medical fraternity and statisticians have yet to catch up. As my friend Claire says "Dysautonomia isn't rare, it's just rarely diagnosed". There is a whole community out there to stand by you through this, come and meet us. 

   3.  It can be scary at times.

Dysautonomia can be damn scary. I don't care who you are and how stoic you may generally be, crushing chest pain beyond anything you have ever experienced can give you pee-in-your-pants levels of fear. "Am I dying?" "Is this a heart attack?" "Oh God, I'm going to die and leave my kids and husband".  I've had that conversation in my head on more than one occasion. These days I know my normal, which is highly abnormal to regular folk, but in those early days I really didn't know what to expect. Back in 2006/2007 I was nearly blacking out when I was driving, my doctor started mentioning more serious and life threatening diagnoses I needed to rule out, more and more symptoms started developing. Fear of death was pretty high on my radar. These days it takes a hell of a lot more to worry me. Crushing chest pain? Meh. Pain radiating down my left arm? Just another day at Chateau Rusty. I still have fear at times, it's a natural reaction to living with a stressful and unpredictable illness. Most importantly, if you are feeling scared see Point 2, you're not alone, and there are many safe places to discuss your fears and understanding ears to listen.

   4. It's okay to say it sucks.

Being ill sucks. Being chronically ill sucks donkey balls. It's hard. It's unglamourous. It stops you from doing all you want to do and changes who you are as a person. I am generally a happy person. I find the funny in the most unfunny of circumstances, but there are times where I just want to look up at the sky and say "WTH Universe?" As humans we have a range of emotions for a reason. Permanently perky is just as destructive as permanently pessimistic. In both cases you are stuffing down your emotions. We are all going to have bad days. The important part is to acknowledge what you are feeling, work through it and move on. If you keep stuffing it down you will reach a point where you explode and find yourself hysterically crying and screaming at your husband because he brought the wrong toilet paper. Which is totally disproportionate to the non-issue of the toilet paper (though in my an unnamed wife's defence, some brands are like sand paper and you really don't want sandpaper going anywhere near your tender parts). But you can only stuff down those emotions so long before they begin to eat you up inside.  It sometimes takes more courage to say it's hard, than to put on a false veneer of happiness.

   5. You're going to be okay.

Those first days and months are hard and scary and lonely. But you'll make it through. You think you wont. You'll want to throw in the towel and scream "No more!", but you'll make it out the otherside. And you'll do it again and again. I can't predict how your symptoms will pan out over time. We are all very individual. Some will get better, some will have symptoms that wax and wane, some will have a chronic but stable process and some, like myself, will progress. Your body may still be broken, but your ability to deal with it, will get better.  You will find your stride. You will find the things and people in your life that matter and make you happy.  You'll be able to breathe, even when it's bad. It wont be easy but you'll find that your ability to cope and your acceptance will grow. Your spirit will heal and you'll find direction you never imagined. You are filled with possibilities and, if you give yourself permission, you'll find them. Being ill can give you a freedom to explore yourself in ways you never thought possible. Life with Dysautonomia or any chronic illness, is a life changed, but sometimes that change is a wonderful thing.

No doubt after I push publish I'll think of more tips, but these are the basics. Just know, it gets better. Not in the Disneyesque sense of shooting stars and rainbow farting unicorns. But in the real world sense  where you're battered and bruised but you're stronger than you thought and more at ease with your life. It takes time, and there will be tears and disappointment and setbacks. But one day you'll turn around and realise that somehow you made it through, and no matter what your body is or isn't doing, you're okay.

Be kind to yourself.
Michelle :)

October is Global Dysautonomia Awareness month. Take the time to raise some awareness. 

33 comments:

  1. Rusty,
    As I read this I was thinking "Where was this 6 years ago when I got diagnosed?" I went through all the scary tests (most of which while I was pregnant). Sitting there not knowing if myself or the baby was going to be OK. I had a great OB that really helped me find the right doctors, and supported me even after I had my son.
    It's amazing that this late in the game you still go through all those emotions regularly. Even though you know it's unknown, there are people out there (you're not alone), it's not in your head... you can't help but fall back every now and then. My most recent setback has been a simple case of pneumonia. No biggy, right?! As if dealing with multiple personality Bob isn't bad enough, add a 5 year old that just started dual language kindergarten, pneumonia, and a boss that politely pointed out yesterday that "you've had some health issues lately"... This man has seen me pass out on numerous occasions and is well aware of what my "issues" are, I am at a loss of what to say.
    I am thankful for those of you that understand and are supportive, and for those few precious friends that have stuck with me over the years, even though it sucks big most of the time.

    Sorry for the ramble. Just had to let it out.
    Best,
    P

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    1. Ramble away Portia, we all need to let it out and everyone here understands. xx

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  2. I Love your blog! You are, quit simply, amazing! Strength, resilience, intellegence and humor with a splash of reality! I don't think you can possibliy imagine how much your words and your ability to express yourself impacts other! You were really struggling a few short weeks ago and here you are back, and seemingly as strong and courageous as ever! You are so gifted!
    Cheers,
    S

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    1. Thanks S. It's always lovely to hear that I can still have an impact. When I left work all those years ago I thought it was all over (bit of a drama queen at times). So to know I can still have an impact even when pretty much housebound is really nice xx

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  3. Another great post from my favorite dysautonomia blogger! Thanks.

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  4. YES!
    It's been 24 days and I still feel like my heart is split wide open. There has been more then one occasion over the last 3 weeks when I've asked myself, "Seriously? Are you crazy? You honestly can't believe coping like that would be good for your mental health???" I'm trying to learn how to shut up that little voice in my head, but it is hard.
    Your post gave me a little hope that maybe I'm not the only one out here experiencing all this.
    Thank you for being out there and blogging to bring a little smile to my face on my darkest days, and for giving me the hope that I will get through this, no matter how unbelievably cruel it seems at the moment.

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    1. You're definitely not alone Alisha. Even now heading into my 7th year, I still fall back to those old thoughts every now and then. It is hard to shut up those voices but you do get better at it over time. Hang in there :)

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  5. Thank-you, Rusty. Although I'm at about the same stage in the game, this is so good to hear. So much gratitude for you.
    As always,
    Gangster in America

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  6. Thank you for this post. It is exactly what I needed to hear. I'm not exactly new to having Bob but it's been rough lately and I feel as though I have no control over my body.
    It's nice to see someone verbalize it. I feel like I constantly need to be strong and optimistic, but it sucks a lot of the time (and man it feels good to say that). It's scary at times but I'm going to be okay.

    Thank you, thank you, thank you <3

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    1. Being strong and optimistic can be exhausting at times. It can be hard when others have expectations of how we should act, and even harder when you look at our own expectations of ourselves. I know early on I thought I should be strong and perky all the time. Hell I used to be a psych I knew the theory, had worked through it with my patients, but when it came to me it took a long time to give myself permission to just feel what I was feeling. Made things a lot easier when I did.

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  7. Thank you for this post. I have been battling this for two years but still need to hear that I am not alone and there is a purpose to this madness. You have an excellent humor that always brings me back to your blog.

    Wishing you good health!

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    1. Thanks SimplyK. No matter how long you've been dealing with it I think it's nice to hear that others understand and are going through the same things. Hang in there :)

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  8. Dear Rusty,
    Your words are like a beautiful light in a dark lonely pots cave.
    Thank you for making me feel a little less alone in this.
    When your husband and mum think your a hypochondriac and everyone else coudn't really care less and yet you have to stay strong and research everything yourself because doctors are about as helpful as a pile of you know what. Well let's just say i think I need to tattoo these headings somewhere. God bless you x

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    1. Hi E. I'm not above writing messages on my mirror to bump me up when I need it. I'm so sorry to hear that you have so little support. It's so hard when those nearest and dearest to you don't get it. Are you linked in with some of the main support groups, there may be someone in your area who can at least recommend a good doctor for you, or even meet up for a coffee.

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  9. Ah! Yes, yes and yippity YES! Thank you Rusty Hoe. You are something wonderful.
    I often have the internal self-doubt shuffle. Then I get slapped over the head with another big fat wet-fish symptom... and the self-doubt is silenced until I am having another (better) day.
    It's a conundrum. I have sometimes wished that the 'better days' weren't interpreted by everyone as 'she's better'; I guess that is just how people want it to be? But damned if I am going to mope around on a better day just so I fit their paradigm! The challenge then, is not overdoing it, cos there are so many things to catch up on and I am bingeing like a crazy person on the freedom of being able to move around!
    My yardsticks traverse vertical miles on a minute by minute basis. Some days I am so happy to be able to have a two-load wash run without flaking out. Other days I am happy to take less than half an hour to get from horizontal to vertical. Imagine us all doing these things in unison. Tee hee!
    Hey, we should run our own paralympics! We could have some classic events: The 2m Toilet Dash n'Crash from a sitting position, The put on the compression stockings sprint, the locate the logical thought hunt, who-can-lose-it-the-craziest rant, and my old favourite the tummy-bloat brouhaha! Ah, the visual images of all of us in unison make me smile. [OMG: am I having in-jokes? Could it be that I am part of a cool crowd?! Rusty Hoe, you are the most popular girl in school and I wanna be in your gang!]
    Thanks so much for your words and your wisdom. I like this place.
    Rach

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    1. Thanks Rach. Love your idea for our own special Olympics. Ugh, the better days = she's better. That drives me batty. Even having been sick so long and having constant ups and downs, people still ask if I am better, when I can actually do something. My heavily sarcastic reply of "Why yes, I'm fricken fantastic. It's a miracle" seems to go right over their heads.

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    2. you guys are so fun, funny and helpful. Questions I get asked...why didn't you go to church today. Answer: because i took a shower. Now no one else but us would get that!

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  10. girl,
    i applaud you from underneath my blanket. You're sending perspective out into the world. Now i wish you the all the warmth i'm feeling right now.
    ps. you're copyright warning is hilarious. hehe :p

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    1. Thanks Anon. Some people get my copyright warning is tongue in cheek, others take it very seriously. :)

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  11. Your blog has really been amazingly helpful to me over the last year and a half that I have been diagnosed with Dysautonomia. It is so good to know I know not alone even though it can be lonely.
    Carrie (Just Mildly Medicated)

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    1. Thanks Carrie it's always nice to know I can still help. It can be a really lonely journey at times so it's always nice to connect with others in the same boat or read about someone else who just gets it. It's why I love social media so much.

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  12. This was an amazing blog post! I just wanted to let you know that I greatly enjoyed it and shared it on my page for other newbies to learn from. Thanks again!!!!

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    1. Thanks Stumbling xa And thanks for sharing :)

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  13. Thank you for mentioning the brain fog. It's important because it means that when we're in a bad way, we don't have the cognitive werewithal to remember the important self-care techniques.

    When I lived alone I had no one to tell me things were going downhill, so I started leaving notes around the house for myself. My favorite was taped to my bathroom mirror: BREATHE. And a note below it stating: "Laugh at this, it's really very funny." The body "forgetting" to breathe, ha ha!

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  14. I managed to live 40 years with this going undiagnosed. I have always been "different". I have always struggled. I have had so many BS diagnoses from ADD to chronic fatigue. This disease has wrecked every part of my life on numerous occasions yet it went without being properly noticed. My primary care Dr. believed it was anxiety and depression. I was just diagnosed this week by an endocrinologist and now the pieces of the puzzle are fitting together. I don't feel like I have the energy or will to fight this right now. I am completely isolated and can't do squat about it. Pity party whaaaaaa...

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  15. thx Rusty,You echo so much of my experience over the last twelve years. I have found many things within myself where I am probably reasonably comfortable with my life ,unpredictable as it is.An unsatiable curiousity of life and people is what sustains me .

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  16. Thank you very much for this post. I have been struggling for years and no single doctor could tell me what I had. I then moved to England and found this beautiful person my cardiologist is and I am being diagnosed. Feeling so weak all the time makes me sad at times, and I had become depressed in the past months. Now even if I get diagnosed the battle will continue. My boyfriend doesn't cease to repeat that I have nothing, that I am depressed and that I have symptoms because of that. He says, when you are happy you don't get dizzy or almost faint after standing up from a chair. Maybe it's just that when I'm feeling better I am happier?? THANKS FOR THIS. Have a wonderdul day. You are great!

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  17. I finally got partially diagnosed! I have some form of dysautonomia, something more severe than POTS related to vasovagal syncope(which I am not having). More medical tests to go. So who can now tell me it's all in my head!

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  18. WOW. Was just diagnosed today- and although the relief of an answer made a quick difference, the fear set in- and after reading this post, with tears in my eyes- i feel so much better by just outloud articulating, "i knew i wasn't crazy"..thank you thank you thank you for making me confident that i had to trust my instincts- something WASN'T RIGHT! i know i will be ok , but this blog helped me reinforce that. here's to today being a "good" day. thanks!

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  19. I am Stateside, and newly (under) diagnosed with dysautonomia and autonomic/polyneuropathy. Struggling with a lot of symptoms and really very scared... Michelle, these words of encouragement are so welcome... but I'd really like to know how you make it through the hard days? How do you learn to laugh at new symptoms instead of freak the almighty fuck out? Every new and terrible thing my body does activates the "You're gonna degenerate and be bedridden, eating through a feeding tube and pooing in your pajamas" mental spiral - aaaaaand then I pretty much hyperventilate. So how do you do it? How do you keep a cool head and a I'm-not-gonna-die, I'm-not-gonna-poo-me-pants attitude?

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    1. To be honest I'm not calm about it sometimes. It goes up and down. I think though over time it becomes easier, but I do always recommend seeing a psychologist or another counsellor to work through it all. Chronic illness is exhausting mentally and physically. It changes us and our relationships and interactions with the world. It's a lot to process on top of the scary symptoms. When I had to leave work I was in counselling for a year and it was the best thing I did for me. I have another post on here "The Long and Winding Road to Acceptance" which probably explains how I deal with it all. xx

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx