Wednesday, 3 April 2013

#HAWMC Day 2: Helpful Posts



Topic: Share 3-5 of your old posts (or posts from other Health Activists!) that you think will help the newly diagnosed.

When you are newly diagnosed or in the diagnostic process it can be easy to end up overwhelmed by the whole process. Initially you are excited and relieved to finally have a diagnosis. Especially with something like Dysautonomia. In the seven years since I first became ill the story has rarely changed.

Most patients are faced with dismissal and sometimes outright contempt by some medicos. It's all in our heads. How dare we ask for a particular test? We found out about a diagnosis on the Internet? What a joke? Dysautonomia is notoriously difficult to diagnose and few doctors can put the pieces together. Often even following diagnosis there we are faced with doctors that have never heard of the condition or are sceptical of the specialist's conclusion.

Patient's are left feeling adrift and confused and the post-diagnostic high starts to lose some of it's gloss. Being ill, often for a protracted period, with a confusing and complex illness can leave a patient feeling overwhelmed. I know it was the case for me. There have been many ups and downs over the last seven years most of which I have documented here on the blog over the last almost-four years. I tired to think of the things that may have been most helpful for me back then and this is the list I came up with.

5 Tips for the Newly Diagnosed Dysautonomia Patient

Sometimes you just want to know that 1) you're not crazy, 2) you're not alone, 3) it can be scary at times, 4) it's okay to say it sucks, and 5) you're going to be okay.

"....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....." (3rd October 2012)

Dysautonomia: what you need to know in 5 minutes or less.

Explaining what you've been diagnosed with can be difficult when you don't quite understand it yourself. Sometimes it's handy to have a quick guide to refer to and give to people. This guide also includes a list of organisations that specialise in support, research and awareness of autonomic conditions.

".....Like symptoms and causes, long term outcomes vary. Some patients will recover, especially if younger and if their symptoms began after a virus. Some patients, will have a stable but chronic pattern. Some will have a relapsing remitting profile similar to MS. And yet others will progress over time....." (21th october 2012)

My life with Bob: The ravings of one slightly deranged woman in her mid-thirties living with chronic illness - composed over several long months.

This is my first post. I wrote it back before I started the blog. It chronicles a lot of my early experiences from getting sick, to diagnosis, leaving work, and the all the emotional ups and downs that accompanied those early days all in one neat post.

".....For the most part you can be ill in private but every now and then Bob raises his ugly head in public. I dread these moments. When you’re trying not to throw up or pass out in the local ice cream shop the last thing you need is a gaggle of people asking you if you’re ok. Of course I’m not ok! I’m pasty and sweaty, my head is between my legs and my face is an inch away from an old bandaid, a piece of used chewing gum and a decidedly iffy short curly black hair. I’m using every ounce of concentration not to throw up on your shoes so don’t ask me questions or you’ll wear it. I live in a relatively small community and privacy is a rare privilege. Everyone soon knows you as that weird, pasty, angry woman from the ice cream shop who nearly threw up on their shoes...." (19th July 2009)

Waiting for the storm

One of the hardest parts of this illness is it's unpredictable nature. It can leave you always waiting for the next bad patch and leaving little time for appreciating the good times. This post explains a lot of my philosophy on how to make the most of those good times no matter how big or small they are.

"....You take on the role of plate spinner in a bizarre circus troop.  Constant alert, waiting for the first plate to show a sign of the shakes.  Never knowing which  will be the first to fall.  Rushing from spike to spike in a desperate attempt to keep all in a state of equilibrium.  Failing time and time again, no matter how hard you try or how closely you adhere to the rules.   Fear becomes your permanent state, only the degree ever varies...." (11th August 2010)

Acceptance is not giving up.

This is a hard concept for many. It is often a state of mind that doesn't happen for a long time. There are times where you fight 24/7 and there are times where it is okay to sit back and take a breather. There comes a time where illness can rule your every waking thought and when it can be dealt with, put in it's place so you can move on and enjoy the life you have. Living life is just as important as fighting whatever illness you have otherwise you can miss so much that is good in life.

"....Acceptance is a dirty word for many. But I find it quite liberating. It gives me much needed balance, and I am certainly happier for it. It doesn't mean I've given up, in many ways it means the opposite. It means I have chosen to fight for me. And damn it, I'm worth it...." (17th January 2013) 

So there you go that's my Top 5. I'd be interested to know if these are the 5 posts that my regular and long term readers would pick or if there were others that stood out as being really helpful.

Cheers
Michelle :)

11 comments:

  1. Sending this to my POTSY son. Thank you. I'll take a macaron; not a fan of cupcakes.

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    1. Hope it helps Plyle. Macarons are always a winner :)

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  2. I was diagnosed 6 weeks ago. This has made me realize that I am not alone in this and these feelings are natural. A big thanks to you x

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    1. Sorry to hear about the diagnosis Gemma but hope it can lead to better treatment and management for you. Glad my ramblings can help. Often knowing you're not alone is so helpful in dealing with it all. :)

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  3. Folks with autoimmune problems often turn to the internet because help/support from the conventional places is lacking. The good part about this is we can help/support each other. It occurred to me that although people with different symptoms (fibro,pots, IBS, diabetes, alopecia etc) can find their own forums, we'probably, at some fundamental level, all have the same thing (autoimmune/inflammation/nerve signaling/something or other). That means advances and treatments in one field will probably help us all. So there is reason to pay attention to the whole AI community, and to hope/expect a breakthrough.

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    1. I think you're right. Research in one area could definitely help in others. There is so much crossover with all these illnesses. I know when I first got sick I was so excited to find the first support group as I felt so alone, especially being here in Australia there was very little information at the time. Thankfully that is changing and there are so many more resources now. And lets face it the difference between the clinical information and the real life implications of that information can be huge, often it is only other patients who can help you navigate through it all. :)

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  4. Oh - and in the spirit of your post I DO plan to write an essay (eventually) at my own blog and share it here. I just need a "good day" without nerve pain.

    IN the mean time in the spirit of HOPE, have you read about the Microbiome Project? It's a spinoff (I think) of the Human Genome Project. Targeted treatments for a variety of auto-immune problems are about a decade away, we just need to hold out that long!

    A few good articles about the project:

    http://www.economist.com/node/21560523
    http://phenomena.nationalgeographic.com/2013/04/08/bugs-as-drugs/
    http://www.bbc.com/future/story/20120412-the-beasts-inside-you
    http://www.nature.com/news/microbiome-sequencing-offers-hope-for-diagnostics-1.10299

    (and yes, those articles sent me searching for the right probiotics for my own symptoms))

    Also, have you heard of Dr. Murad's work? He specializes in hydration and water metabolism at the cellular level. He would agree with you that drinking a lot of water is pointless, because even a healthy person won't get much benefit from it. Here's a press release on a recent study he did with middle-aged women: http://www.businesswire.com/news/home/20120712006350/en/Water-Study-Results-Murad-Research-Labs-Busts

    He also wrote a book called The Water Secret. I haven't purchased it, but I might. I already tried following his central tenet (eating my water and drinking my foods) and although I still pee like a racehorse and have trouble remaining hydrated, things ARE BETTER than they used to be when I tried to hydrate with water. It just stays in me longer.

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    1. Thanks for all the links Pinky. Will check them out! :)

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  5. Thank you for putting out the call. I finally wrote something!!!

    http://letteradicorsa.wordpress.com/2013/04/24/with-dysautonomia-your-mileage-will-vary/

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    1. OMG that is great. Love it.Though in truth you had me at the Liz Lemon GIF!!!

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  6. Thank you for this post. You have captured so succinctly many of the issues of dealing with any chronic and fluctuating illness. Like you, I found acceptance liberating, it opened a space to explore other ways of being and dealing with it all.

    And then there are the public and private aspects/lives and those spaces in between, and those freaky times where in public the private does (or looks like it will) take over- Aargh the horror! And the stories!

    One way I get by is to spend a lot of time 'living in the moment' though not perhaps in such a deep and meaningful way as it may sound. Usually brain fog and a non-existent memory leaves this as my only option!

    Finally, one of the really important things is a heightened sense of humour. Sometimes it is the only thing to help me and others around me get through an event. And its one of the reasons I so enjoy reading your blog and timeline about situations I so readily relate to.

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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