Wednesday, 19 October 2016

Dysautonomia Awareness Month 2016 Guest Posts: Patti Feeling Lucky. Dysautonomia over 50.


I really love this guest post from Patti for Dysautonomia Awareness Month 2016. Patti discusses her experience receiving a hyperadrenergic Postural Orthostatic Tachycardia Syndrome (hyperPOTS) in her early 50's. We don't often hear of the experience of older patients so it's lovely to be able to share her story. I particularly love the compassion she has for other patients and the way she has reframed her experience in such a positive light. Thank you for sharing your story, Patti.



Patti is a fifty-four year old woman who developed hyperadregenic POTS at the age of fifty-two. She is now housebound and reads, reads, reads. Prior to that she was a map librarian for several years. She then completed a PhD and was a lecturer in Geography. She has always been a mad keen gardener. She lives with her amazing husband and dogs in Wisconsin, USA. She's a lucky woman.


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I feel lucky to have developed full blown POTS at the age of 52. Not that it doesn't suck becoming disabled by something you never heard of before, no matter your age.

I am lucky in that my primary care physician knew me and took me seriously from the beginning. Like many, I developed POTS after a viral illness. Mind-numbing fatigue was the symptom that occupied my mind early on. Being over fifty made him believe me but also never lead him to a diagnosis of a disorder that usually strikes young women or the later diagnosis of pre-lupus.

I am lucky that I was diagnosed in six months. I thought I had Chronic Fatigue Syndrome and read a book that indicated it was an autonomic nervous sytem dysfunction. I found a local neurologist who specializes in ANS disorders and booked an appointment. I was in the room with her for five minutes and she knew what was wrong with me! Some crazy term I couldn't pronounce. I was thrilled, well as thrilled as you can be in a hyperadregenic state. I assumed that there would be a magic pill and I would get my life back! Two years on I am still seeking that magic pill. Aren't we all?

I feel lucky to not have developed this condition as a teenager, young adult or child. I realize I have had symptoms all my life but they were subtle. Who knew my party tricks were really Ehlers-Danlos?  
I am lucky no one thought I was suffering anxiety or panic attacks. I carried the over fifty card where Drs tend to believe you. I can't imagine how difficult it is on younger people merely trying to maintain verticality and then be told it's all in their head.

I am lucky to have developed this after having worked since the age of 14. I have a long, strong work record which allows me to receive a disability check every month. I feel extremely lucky to have Drs who documented everything so that I became eligible for disability on the first application.

I am lucky to have a good Dr and fabulous Nurse Practitioner that care and take time with me.

I am lucky to have traveled most places in the world I wanted to see.

I feel lucky that I live the internet age where research is possible and others with this condition can bond.

I feel lucky this disorder is teaching me patience, something I have always lacked.

I am lucky I have good insurance and am comfortable financially.

I am beyond lucky to have an amazing, supportive husband who retired to take care of me and caring family and friends.

I still can't be vertical for more than 10 minutes but I am so much better off than so many and I am extremely lucky for that. With age comes wisdom?

Patti

2 comments:

  1. I was diagnosed with POTS at 49. Finally have dysautonomia specialist. I suspect that I have autoimmune POTS. Thanks for sharing your story.

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  2. Gosh this lady was lucky not to have been routed down the anxiety path first. I'm 45 and have spent the last 2 years fighting for the official clinical diagnosis which is Ehlers Danlos and trying to clear my record of a psychiatric disorder. It's not been pleasant.

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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