Tuesday, 15 September 2009

Dysautonomia. Invisible Illness My Arse!

Dysautonomia? Did you make that up? What the hell? Is that a species of dinosaur? A Pokemon character perhaps? Say what?

Has anyone who hasn't got Dysautonomia or a family member living the joy, actually heard of it? The answer is pretty much a big fat NO!, Nyet! Oya! Nda! Ne! Nono!Nede! Na!

There are so many illnesses that receive no publicity.  That aren't sexy or have a great PR/celebrity machine behind them. Unfortunately Dysautonomia falls into this wallflower group. We often don't look sick. We don't have scars and bandages.  Many don't have walkers or wheelchairs. We don't have the external, legitimate signs of illness. But you don't look sick!  Ha!  How many times have I heard that one? We are the supermodels of the illness world! So it's up to us to spread the word. Feel the power of the Pasty Faced Army!!

Dysautonomia. Say it 10 times fast. Remember it. Tell your friends. It's real. It doesn't discriminate. It could affect you or someone you love at any time.

There are many forms of Dysautonomia, some rare and some way too common. It can affect children and adults and everyone in between. One form, Postural Orthostatic Tachycardia Syndrome, POTS, is thought to affect 1 in 100 teenagers, so where are the TV ads, the telethons, the glittering star-studded charity balls??

Even many doctors are unaware of Dysautonomia. It is notoriously difficult to diagnose as the symptoms can be vague or unusual. It can take many years until you get the answer. Many are told "it is all in your head", it's stress or anxiety, before finally finding a doctor who can put together all the pieces of the puzzle.

It's not that those of us lucky enough to have Dysautonomia want your pity, hell that's the last thing we want. What we do want is a little bit of understanding. Just a simple realisation that Dysautonomia exists and it makes life damn hard. A couple of extra research dollars wouldn't go astray either, but it all starts by taking the veil off this disorder and letting people know that its real and can be devastating.

So what is Dysautonomia?

Do you need to concentrate on making your heart beat or your lungs breathe? " Ok heart, now beat, stop, beat, stop, ok little faster now, not that fast, slow down, that's right, beat, beat, beat......". The simple answer is no. It would be impossible to consciously do this every second of every day for all of the processes in our body. Instead our bodies have a network that takes care of this, called the Autonomic Nervous System. It's the autopilot of our body, taking care of all our bodily systems so we can sit back and enjoy our flight. This system makes the minute to minute, second to second changes our body needs to keep functioning. It controls everything from our heart rate, breathing, blood pressure, body temperature, digestion, and so much more, even the way our pupils react to light.

When this system fails or malfunctions, you develop Dysautonomia.

If you look at the list of bodily functions it controls it gives you an idea of the wide range of things that can go wrong. Yet despite all of this we look pretty good, maybe a bit pasty or tired, but that's it. Unless we do our dramatic fainting (I love how doctors refer to it as a "simple faint", it's so obvious that they have never experienced it), no one sees the absolute shammozel that is our innards.

So here's a basic list of the delightful symptoms of Dysautonomia: Tachycardia (fast heart rate), Bradycardia (slow heart rate), Orthostatic Hypotension (low blood pressure when upright), Orthostatic Intolerance (inability to remain upright), Syncope or Near Syncope (fainting), Severe Dizziness, Exercise Intolerance, Exercise Fatigue, Migraines, Nausea, Gastrointestinal Issues, Nausea, Insomnia, Shortness of Breath, Heat Intolerance, Trembling Limbs, Brain Fog, Frequent trips to the loo, Visual issues, Seizures.

I can understand why some people (even doctors) might not think I'm sick. Dysautonomia is obviously a cake walk!.

How to explain what it feels like to live with Dysautonomia? It's hard, words really don't do it justice. Ever seen that episode of The Simpsons where they go to New York and Homer has the lock put on his front wheel. He stubbornly tries to drive the car just like normal but every rotation of the wheel takes out another ear splitting chunk out of his car. This is life with Dysautonomia. You try to keep going despite the obstacles your body puts in the way but each step takes a chunk out of you.

Dysautonomia is damn unpredictable too. One day you can do something, the next day you can't. One day it's your heart rate that's messing up, the next it's your inability to get cool, or shaking and passing out, or a combination of all or one or two or.........

Have you ever passed out? Remember the feelings just before? You get dizzy, feel like throwing up, shakey, greying of vision, wind in your ears, slurring your words... etc. Now imagine feeling like that all day, every day, week after week, month after month, year after year. That is Dysautonomia. Some days it's a little better, some days it's much, much, worse.

There is no cure for Dysautonomia. Doctors don't even know the underlying cause in the majority of cases. There are drugs but these don't work for everyone and the side effects can seem worse than the disorder. There are lifestyle and dietary changes which again don't work for some of us. It's about managing our ever changing symptoms each day and hoping it'll get better some time in the future.

Dysautonomia isn't an invisible illness for those of us who live it. Dysautonomia takes away your independence, it changes your life, it changes you. To go from a fully functioning member of society to someone who can't get out of bed some days is confronting. It's even harder when others don't understand. I would love to go to the movies, spend a day clothes shopping, or go out to restaurant. Hell I'd even love to be able to grocery shop without worrying about whether I'll be able to drive home or go arse up at the checkout. But I can't. Sometimes I can try, but I may have to cancel at the last minute, need to leave after 5mins, or spend the whole time in the loo throwing up. Occasionally I can do these things but no one sees the reality that afterwards I can't string a sentence together, stand or walk in a straight line or may need to sleep for a week.

Dysautonomia may be hard for you to see but for those of us with it, Dysautonomia is a big flashing neon sign, Vegas style, complete with feather clad dancing girls and Elvis impersonators.

All we ask is that you acknowledge that Dysautonomia exists, that you go out of your way to find out a bit more, that you tell a friend about it, or wear a blue ribbon to show your support.

Illness isn't always visible people but it doesn't make it any less real.

Thanks for reading.

Michelle :)

Greg Page, formally The Yellow Wiggle, has a form of Dysautonomia, Orthostatic Intolerance, and has given his support for a research fund at The Baker Institute here in Melbourne, Australia.
Greg Page fund for Orthostatic Intolerance

For more information check out:

DINET (US site)

Vanderbilt Autonomic Dysfunction Centre (US Site)

Syncope Trust And Reflex Anoxic Seizures (STARS: UK site)

Dysautonomia International (US site)

Dysautonomia SOS (US Site)

Other links


52 comments:

  1. thanks for this. now i unserstand more about your illness. the feeling before fainting was a great discription. Basicaly thats how i feel any time i deside i am either medicated enough or feeling well enough to go out on my own to get milk at the store thats only a walk away. IT never fails. i dont faint but have a meltdown.

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  2. Thanks for sharing the abc's of Bob, that A-Hole. PS- not to be a weirdo =), but I dedicated my sauna time today per you comment on my sight!! LOL.

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  3. Thanks Lucy I'll have to enjoy it vicariously. See now that sounds weird to, but you get what I mean! LOL.

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  4. Michelle,

    I've just found your site, and oh my gosh, it's the first one that resonates with me. Your case seems fairly similar to mine, and your sense of humor is WONDERFUL.

    I am so fortunate to have found this blog. Thank you, thank you, thank you for posting as you do. It's helping me explain my disease to my family and hopefully soon, my friends.

    I just got diagnosed in April, but I've been sick for years. I have gotten people thinking I'm faking and thus lost friends and family members' caring, I've lost my job, and a lot more. Thanks for helping me feel less alone.

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  5. Hi Betsy
    glad my insanity could help a little. I decided a while ago that Bob is an absurd disorder so every chance I have to make fun of it I'll take it. It's a hard disorder to live with at a medical/physical level but sometimes the social relationship aspects can seem much harder. You are most definitely not alone. :)

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  6. Thanks for putting symptoms and feelings into words. I am living with Bob in Cullman, AL, as a wife, mom, and high school teacher with twenty-five students watching me pass out from time to time. The fatigue is the worst for me right now, and I am hoping to get in to see a specialist soon.
    Do doctors ever help treat this with medication? If so, what? I'm drinking all the water and eating all the salt I can stand!

    Thanks again!

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  7. sboyd - glad my ramblings could help a little.

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  8. sboyd-
    There is a doctor in Birmingham that treat dysautonomia. I was diagnosed in June and she has me on a slew of meds but I am functioning better. Their website is www.mvprolapse.com.

    Rusty Hoe-
    Thanks for the blog-it's noce to know that your not the only one out there because you do start to feel crazy!!!

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  9. This is SO awesome, Michelle. I would so LOVE for my family and friends to be able to read this, because even after 3 years with 'Bob', they STILL do not really 'get it'. :*(

    Do you ever grant permission to share your work if credit is given to you, along with a link to your blog? I would LOVE to have this on a page in my blog. Your writings are so amazing, but I would completely understand if you don't want to share your work.

    Thanks so much for sharing your talent and heart with us and, most of all, thanks for all the laughs!! I have found that I sure do need them these days.

    {{HUGS}}

    Teresa <><

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  10. Teresa - Thanks so much for your kind words. Go for it. As long as it's credited and linked I don't mind who uses it. If what I write can help someone I'm pretty much happy. I'm in the same boat with few people in my life who really get it, or want to take the time to get it.

    Wishing you more laughs as we all need them. Hope you have a great Thanksgiving :)

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  11. This is one of the best descriptions of 'Bob' I have read. Reading it was like being inside my own head. You nailed it.

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  12. Hi, I just found you via Twitter. I feel a little up to speed now on what you're dealing with here and all I can say is... wow. I've never heard of this.

    Hoping to get to know you a little better over time. And yes, I concur: Have said for a number of years that many things in this life (if not all) can be explained via a Simpsons episode/scene. Too funny!

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  13. Being Me - thanks for stopping by. Yeah it's an obscure disorder, even most docs haven't heard of it. Any fellow Simpsons fan is very welcome. :)

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  14. Hi there Rusty Hoe!

    I've just read your blog for the 1st time, after seeing your winning entry for the Lady Melbourne / Westfield competition. All I can say is Well Done! It couldn't have gone to a more deserving person, I'm really happy for you. I hope you have the BEST time ever!!!

    Your blog reads really well, & gives an insight into what you're going through - I'm sending you good vibes & much happiness.
    - Simone H

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  15. Simone - thanks so much for stopping by and taking the time to read my ramblings.

    I can't wait to go and still can't believe I won. There may have been a little bit of crazy celebratory dancing in my lounge room when I found out last night. I'm very excited about having the chance to meet Lady M. I've followed her blog for ages. The shoes in my header are actually a pair I made after reading her Dorothy Shoes post. All in all, it's made for a fantastic Easter pressie. Hope you're having a great Easter. :)

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  16. Wow, I feel educated, worried, and suddenly in control of my breathing...

    Your jedi mind tricks are powerful, skywalker.

    What a scary disorder. But we're in the 21st century. In the 60's, they would administer shock therapy to help 'cure' you.

    But, on the flipside, if you were in the 40's, they'd be doing that strange 'orgasm therapy' they did back then. Hey, have you tried that? Lots and lots of orgasms? If it works, I'll send you a bill. ;)

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  17. Lost.in.Idaho - My Jedi mind tricks are indeed powerful. Medicine has come so far hasn't it? My neuro actually prescribed the wearing of socks for my numb toes. Medical advancement at its finest. I have visions of lab techs putting tiny little socks on the feet of the lab rats. I think I'd prefer your option B.

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  18. Poor you. It's a bummer having something you have to explain to others. Sometimes having a condition like this seems more than enough without having to educate people over and over.
    I wish you well, (if only wishes made a difference)

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  19. Feather on a wire - thanks for stopping by and reading. Even knowing one more person has heard of it is a start. There are societies in the US and UK, although it is is till poorly understood, but here in Aus awareness is only in it's infancy. So thanks again for taking the time to read. :)

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  20. I've heard of this before, but never truly know what exactly the symptoms are. Gosh, that is such a hard way to live really - not knowing what to expect each day. Hope to learn more about it from you. :)

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  21. Norlin - thanks for stopping by and reading. Great to hear that you've heard of this before as not many have. :)

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  22. Thank you for todays blog post and for the ongoing posts where you teach us all a little more about Dysautonomia.

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  23. Wow, that must be a horrible thing to live with. Even more difficult to explain, though you've dne a fab job of it here. Definitely needs to be more awareness about it!

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  24. Maid in Australia - thanks for stopping by and reading. Even knowing one more person knows about Dysautonomia is fantastic. :)

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  25. It's good to learn about something new, I'm glad I found your blog I have hypothyroidism, which is also not visible at all, so I can understand you, most of people don't know I have disease and even if, some of them try to convince me it's nothing, just because I look healthy outside.

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  26. I just found your site. I've been completely disabled by this stupid disease... And I still cried reading some of what you wrote.

    No one understands, and yet.... here it is. In black and white. (And I won't bore you with how may times Ihad to backspace because my brain and fingers are no longer connected and my certified typing speed of 72 CWPM is now completely worthless while I sit here peck peck pecking hopeing like hell to get the letters in the right order...)

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  27. Vivien - glad you found my blog too. I think all of us with an invisible illness can relate to one another. Disorder may differ, but experiences seem to be so similar.

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  28. Mel - I'm so sorry you're in the same position. It's a hard rode to traverse and even harder to explain to others. Sometimes knowing we're not alone can make all the difference. (hugs)

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  29. Hi there
    I came to your blog via yr article at Ramp Up, not ever having heard of dysautonomia until reading your article.

    My own variety of chronic illnesses are type 1 diabetes and multiple sclerosis. Because I have had diabetes for more than 35 years, there's lots of autonomic malfunctioning starting to go on and, well, ms has a smorgasboard to sample from too.

    Even though there is lots of awareness of the terms 'diabetic' and 'ms' there is lots that is invisible and consequently not acknowledged or dismissed too. The symptoms you describe seem to have a LOT of overlap with the ones I hang out with.

    'Invisible' to me is in the sense that they just don't get 'counted' by most docs and specialists, often cause they are in the 'too hard' basket to measure.

    It's nice to have them articulated like you do hear on this blog and 'Sit Down Cook' is something I have wished existed for a long time :))

    much cheer

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  30. arrrgh
    *here
    ** 'wished existed...' and so thrilled to find it does in fact already exist!

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  31. Che - welcome and thanks for commenting. There does seem to be a lot of overlap symptomwise. I definitely understand having symptoms dismissed by the docs because they are either "too hard" or not in the regular list. It adds greatly to the invisible burden. I know for myself, there have been many times where my doctors have dismissed a symptom, then I get on a forum, ask the question and 20-30 people respond 'me too". In a way I wish the doctors were open to getting on a board and seeing exactly what we are dealing with.

    Glad you like The Sit Down Cook. I think there are a lot of us sitting on lounges, chairs and floors to make dinners. :)

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  32. Why is it that people like us with "bob" have to try to find answers for ourselves instead of trained doctors taking the responsibility for us. I live in the UK and it has taken me over 40 years and thousands of pounds to prove I am not a hypochondriac. I have POTS,EDS,NMH,Visual Verigo etc, etc and been ill since my teens. I have been lucky to have found a wonderful husband who supports me in every way possible but most importantly believes in me. I wish everyone who has this awful illness the best of luck and the strength to fight it everyday.

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  33. Junio,
    Ièm here in canada and its really no better i just happened to have a fierce mom to help me fight through

    though being your own educator seems thats the sad reality for many conditions.
    I have or have suffered from
    - Vaginismus (learned about by fluke googling online, none of the doctors i explained the issues i was having to said a thing about a possible cause, then had to come up with my own treatment plan at 19.
    - interstitial cystitis ( i explained issues to doctors, no one suggested any cause or names or treatments, i researched found out what it was i likely had and demanded to see a specialist. when i did he basically stated he wasnt sure what to do... so then had to research own treatment, and now i in fact make my own medication for it (vaginal valium suppositories) since buying them premade cost to much, though most times use herbal meds that help.)
    -Endometriosis (this i have had doctor help from, my own research has helped but at least this one i had some helpful doctors, just so happens i have some difficult endo that doesn't respect surgery or medications.)

    Its depressing having doctors who are ignorant, but it seems the way it goes and thats why i am always fearful about new doctors (meet my new family doctor soon, and i pray he has a brain in his head, or knowledge about some of my issues.

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  34. Thank you for describing this "mystery" illness so eloquently. There is healing in the sharing of it... you inspire me.

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    1. Thanks for such a lovely comment ZsuZsu. :)

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  35. Thank you so much for this website! By reading your description of Dysautonomia is like reading my life! I myself call it living on the Insane Train for lack of better words.I never know from moment to moment what this out of control locomotive is going to do next.

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  36. I am so glad I found this blog too! It captures the "BOB" experience so perfectly. I'm a 27 year old who only recently got this diagnosis, but I have been dealing with the chronic pains and symptoms for my entire life. I only started to aggressively seek answers/treatment when the condition became so bad that I had to retire from my career as dancer on Broadway (as well as any other kind of work at this point...) Doctors, family, friends, always teased me for being a hypochondriac and I always wondered why I couldn't seem to catch my breath while or after dancing the way my friends and co-workers could. However, now that I have a diagnosis, I find I am slowly making progress using Feldenkrais Method. Anyone familiar with it? Any feedback? Since my diagnosis is so recent, I would love any suggestions anyone might have.
    Again, thanks for the article. I might put it on my facebook page since it gives such a simple, accurate description of what life with the disease is like.

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    1. It is sad that some people have to experience a thing before they understand that it is real. Let's wake up and support the research needed to learn more about this disorder and hopefully find a cure. There really are other illnesses in the world that need our support.

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  37. OMG! So well said! I've recently diagnosed with this. I FINALLY found a doctor that would listen to me. But I still feel like they think I'm crazy. When your body goes haywire and you can't control it, you feel crazy!

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  38. Thanks for sharing a friend of mines daughter has this terrible disease and struggles daily to enjoy lifes challenges . Now I really understand .

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  39. I just came across your blog and by far it is the best thing I have read that really allows others to understand what exactly dysautonomia is!(not to mention helps me describe it to others) I was diagnosed with it when I was 13, 7yrs ago. There are days even months when I am convinced that it has just "gone away" but sure enough as soon as I think that it literally smacks me in the face! I am still experimenting with certain dietary changes but have yet to find anything that truly works.
    Anyways, thanks for sharing its always relieving to know there are others out there who truly understand.

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  40. Thanks for spreading the word about Dysautonomia. I was diagnosed in May 2010. I completely understand everything you spoke about. Sometimes I wish I had a badage or scar so people would realize this disorder is VERY REAL. The fatigue is usually the worst for me. Exercise intolerance and heat intolerance are pretty bad, too. My biggest frustation is the reaction of people who have no idea what I go through every day of my life. They don't understand how I can be fine one minute and then the next I am dealing with a varity of issues from a headache, to nausea, to double vision. I know people think I am crazy because I am always in the bathroom. It doesn't matter if I drink my 72oz of water or not, I am going to visit the toilet. I could go on and on, but I won't. You already know all of this stuff, but I really wish we had some publicity about our disorder. I really wish those who care about us would get on the internet an research what we go through day in and day out. I sometimes think people think if they ignore us the disorder will go away. I also think they feel like if they don't acknowledge it then it doesn't exist. Thanks again for what you are doing.

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  41. My daughter has just been diagnosed which has been a long hard struggle and was made to feel like her symptoms were in her head , your account of this illness was so correct and to the point , her life has become very hard and it seems hard for others to understand , im currently seeking any help and advice to give a 19 year old and it seems a lack of knowledge from our hospital doctors in the U.K on how to treat or recovery of this illness . What a breath of fresh air to read other peoples stories and know its real and others suffer like my child. Getting any kind of help is a battle down to the basic wheelchair that she needs, and to get just the acknowledgement that she is disabled , we still battle for what she is entitled to and will keep battling on until she gets what she deserves . I just wish for a help group and some where to turn too for advise and support , thank you to every ones account its helped us understand a bit more.

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    1. Hi Anon I'm so sorry to hear about your daughter and her struggles, but am glad she has you by her side. There are 2 groups in the UK that you might already know of that may be able to help which are:

      STARS.org.uk
      POTSuk.org

      Both are great groups with lots of information and help. STARS also does a great patient day with loads of information. xx

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  42. YES! This sounds like ME!!!! I have low blood pressure, speeding heart rate, sleep a lot & faint when I have to stand in line or be at work teaching kindergarten. Been on quest to find out what the hell is killing me!!

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  43. Thank you for stating so eloquently what it is we go through. I began fainting when I was 14, but wasn't diagnosed until I was almost 31. Now I'm 45 and am currently having the worst year of my life with this illness that everyone thinks is just me trying to get attention. Bravo!

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  44. Hi Michelle, I don't think a Simpsons reference has ever made me cry before. That was brilliant. I had an "undiagnosed autoimmune disorder" from 2002-2008 and spent most of my sons' preschool years in bed. The times that I tried to work, socialize, parent, or well, walk, felt exactly like Homer driving that car. I was lucky enough to find a way out, but I have a brother and many friends with "invisible" illnesses, which, if anyone takes the time to look, aren't really invisible at all, right? Thanks for your fabulous blog, Janette

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  45. The Prattling Girl21 February 2014 at 07:57

    I've never heard of this disease before, but it sound quite debilitating. I have a set of incurable "invisible" illnesses too (e.g., gastroparesis, Sjogren's syndrome, arthritis, fibromyalgia, sicca syndrome, etc.). Like you, I'm tired most of the time and can't get out much because I'm constantly sick. Those who live in The Land of the Well will never understand what it's like to live daily with a chronic illness because, after all, they are well. I've also observed that doctor's "don't get it" with incurable illnesses either. They know there is not much they can do, so they act "goofy."

    Take care and hang in there! BTW, I love the sparkling red shoes in your blog header. :)

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  46. I love this article. I was recently diagnosed with Dysautonomia. My husband's name is Bob - so I really am Living with Dysautonomia and also Living with Bob

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  47. The only thing wrong is saying that THERE IS NO CURE. Don't settle for that. I got inspired by a guy who cured himself from Parkinson (fightingparkinsonsdrugfree.com). I read everything on his site and it was very inspirational.
    I am employing some of his techniques plus QIgong. Yes, Dysatonomia is not Parkinson, not sure what is worse,but the idea behind the causes of both diseases could be the same.
    Also,when I am ready to kill myself (yes,that crossed my head many times) I listen to Abraham-Hicks on youtube, all recordings about health problems. It helps me live another day.
    I absolutely love your site and you! THANK YOU!

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  48. Been reading all of your blog, and love your writing. Really captures the difficulties of living with chronic illness that never goes away. I've been ill most of my life too, but have trouble explaining how it is to others. And your writing is like a nice clear water.

    Anyway I always have dysautonomia (POTS) and mastocytosis and other issues, but wanted to mention that low dose naltrexone has greatly improved my POTS and digestion issues, even though doctors find that unexplainable when I say that. Just wanted to mention that in case this info helps any.

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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