Sunday, April 27, 2014

Autonomic Chaos

Okay, so maybe I'm exaggerating a  little, but then, I was sweaty & hot 10 minutes ago, now my feet are icy, even under the blankets! Having the worst POTS flare in years; tons of almost fainting, fluctuating heart rate, higher than in ages, low bp, even chest pain, and my personal favorite, that feeling that someone is choking you around the jugular.
Eating makes it act up, not to mention my stomach itself keeps spazzing out. I either feel like I just ate a rock, find myself in excruciating pain, have to run to the bathroom, or if I'm lucky, just feel queasy.

Getting tired of not getting things done. I need to find someone to help me, AND, I guess, a roommate.

Got really weak in the arms & out of breath (for awhile) just adjusting my pillow, which seemed ridiculous & has been happening a lot, anytime I raise my hands above my head, they get heavy and weak, and was comforted to find a post on Prohealth about plenty of ladies with FM/CFIDS having the same issue, struggling as much as I do, to do stupid things, like hanging clothes, putting their hair in a pony tail, or showering. It really helped me feel a little less like a loser, being reminded that it's really NOT just me, that all of us with these illnesses struggle with the same thing. But sad, too, that things are that bad and I'm on my own. But just for a second, because that's nothing new.

The roommate thing fills me with anxiety, considering the luck I've had, and I wonder if I ever will get to just truly rest....

Oh well. Maybe if I go get a saline IV tomorrow, it'll help. I wonder what caused this flare? Change in hormones? 30 mins on the treadmill twice this week? Some chronic infection coming out of hiding and taxing my poor body? Who knows. I should probably go get more testing done, but I think I'd have to go out of state.

Part of me just wants to run away, somewhere far, but l've made my home so cozy for myself, I hate to leave now...

Ugh, I'm hungry, but afraid to eat! Hope you all are hanging in there!

Wednesday, April 23, 2014

Invisible Illness, Apocalyptic Laser Surgery, and Gratitude

I am hoping you all enjoyed the article I posted yesterday. I thought it was a very well-put explanation our experience with an invisible chronic illness. It reminded me of a really annoying post I read recently where this lady was complaining about how we are a nation of handouts, specifically talking about a "friend" who was on Disability due to back problems and who "seemed just fine" and his daughter who, like me, was appealing her disability decision for the zillionth time, and how she had it so much worse than them and didn't get all the benefits they did because she wasn't poor enough. My, my. I just thought it was interesting how she just decided they weren't that sick or disabled just because they seemed alright to her! (Oh, and yes, there's so much more wrong with all that, but I won't go there.)

Speaking of appearances, I'm stuck wearing glasses for two weeks until I have my Laser Eye Surgery. (Something about allowing your eyeball to return to it's natural shape so the correction will be as precise as possible.) Ah, glasses. I've hated them since I got them at age 10! But these, these are really something. Big old cheap clunky Buddy-Holly Plus black frames that I had to order online a few months ago, before my Disability came through, when I didn't have enough money to buy contacts (old glasses were broken) and actually went around blind for about 10 days! I'm not even talking about the cute trendy nerd-chic black rectangular shaped ones, these are huge. (The downside of buying glasses on the Internet, they looked way smaller on there, but they were cheap, and I needed to see!) To make matters worse, some people look fine in glasses. Me, I'm not one of those people. Anyhow, the effect is amazing. I just got back from doing a little shopping at my local TJ's, and ouch, it's amazing how such a little thing can make you suddenly invisible to the opposite sex. It's like some imperceptible sensor got turned off, and guys no longer perceive my presence. Sheesh. (At least last time I experienced that it was at work, so my clients suddenly thought I was older and smarter and trustworthy and became more willing to trust me with their money; not a bad tradeoff!lol)  Hopefully soon I will never have to experience the awkwardness I feel in glasses again, not to mention the fabulousness of being able to see in the middle of the night, not groping around for my glasses first thing in the morning, interrupting a delicious sleepiness to remove my contacts, and of course, not worrying about running out of contacts to loot if I survive the (fill in the blank) apocalypse, lol.
Although I have had to admit to myself recently, with all my health issues, it's not like my chances of survival are very good anymore anyways, ha!

Man, I miss my old tough self! How I struggle with that still! Just today I was contemplating running a marathon if I ever got better, and then I realized, umm, seriously girl? Even though you were a long distance runner in Track, don't forget you had to quit Cross Country cuz your knees couldn't take the impact, how smart would it be to run that long on pavement? DUH! Ok, so maybe part of it is just the natural process of aging. But not all. I still struggle A LOT with what I "should" be able to do and what I actually can. It just seems ridiculous to me still, what little I can manage.  (And then, alternately, I feel ridiculous for not doing enough!) I put myself into an excruciating flare a couple of days ago from trying to put together my bed's rails to get it off the floor and sleep like a grownup again...they didn't seem that heavy, I had no trouble carrying them, but I guess between moving them around and holding them up while I first tried to put them together in a space too small got me, because I was stiff and in pain the next day, had to take pain meds, and then took it the pain to another level when I forced myself to do just a little more. (The cleaning lady was coming, and since I can do so little when I'm facing reality and not hurting myself, well, I find myself having to tidy up so she can do her job! Ugh. (Oh the joy when she left and my home was all shiny and clean! That totally helped me deal with the pain, along with some Lyrica, an anti-inflammatory, muscle relaxer, and Epsom Salt bath!)

But yes, still trying to get someone to come help me out regularly. This week has been really frustrating, because I seem to be dealing with a sort of chemical depression, I think from getting off my birth control (which was actually meant to medicate my Endometriosis and stop all the extra grief with the POTS during my cycle, but seemed to also be making me quite angry, and not really controlling my cycle after all). When I say "chemical depression" what I mean is not that I'm blue or hurting emotionally, but that I just have no motivation. It's like all the symptoms of Depression, but not the actual, my life sucks, I wish I were dead stuff. All I want to do is sleep, watch TV, not eat, or eat junk food, and not leave the house, and I was out of my wonderful TJ's salads, which had helped me lose 10 lbs, and w/o which, I have rapidly been gaining it back, I fear.

 It would have been very helpful to have someone to tidy up for the cleaning lady (or to have kept it tidy) make me eat a good breakfast, and run to the store for me, because it takes a humongous effort for me to do anything but lie there. (And this was before and after my flare,'s not pain-related.) But it hasn't worked out, so today I finally made it out myself. There were things that needed to be mailed, and I realized if I do gain that 10 lbs back, then I WOULD be emotionally depressed, not to mention, sabotaging my health, so, there was no way out of it... But now that I'm all stocked up, I'm going to go get my nifty tablet and beam me up some episodes of The Mentalist onto my (sometimes)SmartTV. And realize what a lucky girl I am to be getting to rest in my cute ( think) new living room on my comfy sectional. Even if just for this evening, I am a very lucky girl.

Tuesday, April 22, 2014

Six Common Misconceptions A bout the Chronically Ill

Psychology Today

Six Common Misconceptions about the Chronically Ill
By Toni Bernhard, J.D. on December 5, 2013 - 9:59am
More often than not, chronic illness and chronic pain go hand-in-hand, so when I use the term “chronically ill,” I’m including people who are in chronic pain. My hope is that it won’t be long until these common misconceptions become uncommon ones, as people become educated about what life is like for those who suffer from chronic illness (130 million in the U.S. alone).

Misconception #1: If people look fine, they must feel fine.

Whether healthy or sick, it’s good for most people’s morale to try and look nice when they go out. I go out so seldom that I make an effort to look my best when I do. Sometimes I feel like a young child again, playing dress-up. That said, I always hope that if I see people I know, they’ll remember that looks can be deceiving.

I’ve had people say to me, “You look great.” I know they’re trying to be nice, so I make an effort to respond graciously (with something other than, “Well I don’t feel great,” spoken in an irritated tone of voice). But the truth is...there I am, “looking great,” while my body is pulsating with flu-like symptoms, my muscles are aching, and my heart is pounding so hard that sometimes it feels as if it must be visible to others on the outside of my body!

When people see someone whom they know is struggling with his or her health, I hope they’ll remember that they have days when they leave the house looking great but feeling terrible, perhaps from a bad night’s sleep or from lingering symptoms of an acute illness. If they understood that this is how most chronically ill people feel all the time, this common misconception would be well on its way to becoming an uncommon one.

Misconception #2: If people’s illness or pain were truly physically based, their mental state wouldn’t affect their symptoms.

If you’re not sick or in pain, I invite you to try this simple two-part exercise, so you can test this misconception out for yourself. Part One. The next time you feel under stress—maybe you’re angry at someone or worried about something—stop; close your eyes; and pay attention to how your body feels. Can you feel that your muscles have tightened? In addition, your heart may be beating faster and your whole body may be pulsating. You may even have broken out in a sweat. These are just some of the ways that mental stress manifests in the body of a healthy person.

Part Two. Keeping that stressful mental state in the forefront of your awareness, now imagine that you suffer from chronic pain and/or illness. What would happen? Your body would respond to the mental stress the same way it did for you as a healthy person. But now, that response would be in addition to your chronic, everyday symptoms. And if those symptoms happen to overlap with the physical symptoms that accompany mental stress—tightened muscles, racing heart, pulsating body and maybe even sweating—you can see how a person’s mental state can easily exacerbate the physical symptoms of chronic illness.

This is why keeping mental stress to a minimum is so important for the chronically ill. It’s important, but often impossible. Why? Because we live in the same stressful world that healthy people live in.

Misconception #3. Preparing for an event by engaging in “radical rest” will assure that when the occasion arrives, the chronically ill will be in better shape than had they not rested.

I can “radically rest” for several days in a row before a commitment (I’ve had some events for my new book that I’ve been doing this for) and yet, on the day of the event, feel terribly sick. Resting may increase the odds that I’ll be less sick than usual on the day of the event, but it’s no guarantee.

When my granddaughter, Cam, turned six in September, I asked my husband take me to her birthday party for a short time since it’s only an hour’s drive away. It would have been a treat to watch her interacting with her friends (something I rarely get to see) and to meet their parents. I rested for four days before the event. But that morning, I called my son in tears to tell him that I was too sick to attend.

This misconception can lead to serious misunderstandings. For example, a week later, I was able to attend an event for my book. This could make it appear that I was choosing the book event over my granddaughter’s birthday party, but I was not (and thankfully my son understood this).

The truth is that the same amount of resting before each of the two events simply did not yield the same results. That’s the unpredictability of living day-to-day with chronic pain and illness. Not only can it be a source of disappointment and sadness, but if we don’t treat ourselves kindly and with compassion, it can lead to self-recrimination and be a source of terrible guilt.

Misconception #4: If chronically ill people are enjoying themselves, they must feel okay.

When an important occasion arises, people who are chronically ill have learned to put up with the symptoms of illness, including terrible pain, so they can try to enjoy what they’re doing, especially the enriching experience of being in the company of others. Please don’t assume that a person who is laughing is a person who is pain-free, ache-free, or otherwise feeling good physically.

Misconception #5: Stress reduction techniques, such as mindfulness meditation, are a cure for chronic pain and illness.

Stress reduction techniques can be effective tools to help with symptom relief and to help cope with the mental stress of ongoing pain and illness. However, unless a person suffers from a distinct disorder called somatization (in which mental or emotional problems manifest as physical symptoms), stress reduction techniques are not a cure.

Misconception #6: Being home all day is a dream lifestyle.

This misconception arises because, when healthy people entertain this thought, they’re not contemplating being home all day feeling sick and in pain! Put another way, would they say: “I wish I could be home all day with pain that no medicine can relieve”; or “I wish I could be home all day with flu-like symptoms that keep me from being able to read a book”? I doubt it.


My heartfelt wish is that people will become educated about what life is like for the chronically ill so that, some day soon, we can say these are six uncommon misconceptions.

You might also like "Confessions of a Sick Person."

© 2013 Toni Bernhard

Thank you for reading my work. My most recent book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow.

I'm also the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers.

Using the envelope icon, you can email this piece to others. You can also subscribe to my blog (see the choices below my picture). I’m active on Facebook, Pinterest, and (to a lesser extent) Twitter.

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Tuesday, April 1, 2014

Concise Article on Treatment of POTS

I had never heard of the cold water thing, totally trying that tomorrow, since I can't do salt or Mestinon right now, and was already having a bad flare. (I think cuz I stopped taking my Adrenal supplement last week. Can't remember almost blacking out so many times in one day for ages!) But yes, this is a good read.