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Tag: myalgic encephalomyelitis

unrest…

unrest…

In this post, I’m actually going to talk about an illness I don’t have: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Prior to my postural orthostatic tachycardia syndrome (POTS) diagnosis, I was diagnosed with ME/CFS because many of my symptoms were the same: extreme fatigue, muscle pain, post-exertional malaise (worsening of symptoms after activity), sleep difficulties, autonomic symptoms, headaches, sensitivity to light, etc. When you compare the symptoms of POTS and ME/CFS, they’re actually very similar. However, POTS can be diagnosed with…

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lymphatic drainage…

lymphatic drainage…

The immune system is my favorite system (with my least favorite obviously being the nervous system. Stupid autonomic dysfunction).  I like the immune system because it’s like an army, fighting against pathogens found within the body, and each little lymph node is like a ninja.   You may remember that in my last post I mentioned that my lymph nodes were sore and swollen. After that post, I received an email from my  friend, Jen, with some great suggestions for lymphatic…

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a dysautonomiac walks into a gym…

a dysautonomiac walks into a gym…

I have talked about the difficulties of exercising in a previous post, and as it’s a constant battle, will probably post many more.  I have put on some weight since my dysautonomia diagnosis from a combination of inactivity and medication.  In fact, when I stepped on the scale just a few weeks ago, I weighed more than I ever had in my life.  Besides feeling like it wasn’t helping at all, weight gain was one of my motivations for stopping…

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sick on top of sick…

sick on top of sick…

Don’t get your hopes up – this post is not about sick people…you know, getting “on top” of sick people. Sorry if you were kind of excited about that. I must be allergic to New Years’. You may remember from last year that I spent the first few days of 2013 with a migraine and vomiting. Unfortunately, this year isn’t off to a much better start.  I woke up on New Year’s Eve with whatever cold/flu/plague that’s currently going around….

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chronically ill holiday guide 2013…

chronically ill holiday guide 2013…

I posted this guide for people with chronic illnesses and their loved ones last year. I wanted to share it again this year, as I have made a few updates. I realize Hanukkah ended last week, so I apologize to my Jewish friends for not getting this up sooner. The holidays are a wonderful time of togetherness, but can also be a time of stress and frustration as well. If you’re already dealing with the stress and frustration of a…

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massage without the happy ending…

massage without the happy ending…

As I’ve mentioned previously, I’ve been experiencing more pain than usual in my back and neck. At least part of it is caused by the golf-ball sized knots I have.  My dad kept encouraging me to go get a massage, and I kept making empty promises that I would. It’s not that I don’t like getting massaged. Lying naked on a bed in a dim room with soft music playing while getting warm oil rubbed over me by a perfect…

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something, something darkside…

something, something darkside…

A good friend of mine wrote a blog series for the Spirit of War military blog about suicide in September for suicide awareness month.  As suicide has been an important issue in the military community for decades, her blog series was both relevant and timely.  The blog posts acknowledged the stigma surrounding suicide, then advocated for ending that stigma and opening up the discussion. There is an emotional darkside to illness.  The pain, loneliness, difficulty coping all can lead down…

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flights are like doctor visits…

flights are like doctor visits…

…even when they’re good, they’re still really bad. I never loved air travel prior to dysautonomia, but it’s no secret that I now loathe flying.  Airports and airplanes combine some of the most symptomatic inducing experiences – lots of standing, altitude changes, dryness and increased dehydration, carrying heavy items, noises, lights, vibrations and unexpected movement. I had posted previously about some tips for flying on a wonderful blog post over at With a Side of Salt. I knew this was…

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invisible illness week 2013

invisible illness week 2013

This week is National Invisible Chronic Illness Awareness Week! In observance, invisibleillnessweek.com offers some great articles and podcasts for those with chronic illnesses and their caregivers. I encourage you to check it out. Invisible Illness Awareness Week also encourages bloggers to complete the “30 Things About My Illness” questions below. I participated last year, and some of my answers remain the same. 30 THINGS ABOUT MY ILLNESS: 1. The illness I live with is: dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS), Myalgic…

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the heat is on…

the heat is on…

Holy Heatwave, Batman! We have been having an unprecedented heatwave here in southern California.  Certainly this time of year, temperatures are expected to rise – that’s no surprise. In fact, I don’t even think we have broken any records. The highs have been in the 90’s Fahrenheit (about 32-35 C for my international readers), lows in the 70’s. Having grown up in the desert, I’ve lived through much worse. Even since I’ve lived here, I have seen hotter days. Almost…

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