A day in the life of a POTSie...

Over the past few months, I've spent the majority of time on this blog writing about chronic illness in general... But today, I thought I should go back to talking about my specifics, i.e. POTS (postural tachycardia syndrome). For those of you who have not been with us from the beginning, I have POTS, which is a dysfunction of my autonomic nervous system. Basically, my autonomic nervous system does not respond appropriately to most tasks asked of it; for example, when I stand, my heart rate skyrockets and will keep rising the longer I am upright. I am on multiple medications that are designed to help with this problem, like a beta blocker to reduce my heart rate, and midodrine, which raises my blood pressure in general so that theoretically my heart rate will not need to rise as much to compensate for my standing. There are a lot of other problems associated with dysautonomia, such as being unable to regulate my body temperature (if I have a cold drink, I am freezing and have to put on a blanket even if it's 80 degrees in the house), difficulty digesting many foods, blurred vision due to increased pupil size (among other issues), fatigue, fainting, etc. Not a fun disorder to have to say the least!

One of the most difficult problems, of course, is the lack of control I have over my heart rate. I thought a lot of you would find it interesting to see exactly what kind of heart rate changes I am talking about. Below I have a graph that shows my heart rate while wearing a continuous heart rate monitor during the day (I chose an hour to show the changes in bpm enlarged). A normal person's heart rate would barely fluctuate at all and would stay relatively consistent. The low points are when I am lying down, trying to recover from standing, and the high points (upwards of 120 bpm) are when I am standing or walking in the house. This graph is only while I am in the house on a normal day...no extraordinary activities here at all (unless you consider doing a load of laundry extraordinary). You can see that the instant I stand, my HR skyrockets and stays up until I sit or lie down. When my heart rate gets very high, I get extremely dizzy, disoriented, and feel faint. If I stayed standing long enough (more than a few minutes), I most likely would faint, as I have in the past.

Keep in mind, this graph is while I was on a beta-blocker (obviously it wasn't working as well as it should have been), so it would be even worse on no meds. Needless to say, not the easiest problem to have and the polar opposite to being able to function normally...

Undiagnosed Diseases: NIH

As many of you know, I went for years without a diagnosis for my debilitating illness despite visiting as many doctors as I could find (over 30 in fact!). I was very excited to find that the NIH has finally set up a program for patients languishing under the "undiagnosed" category. This program should be a huge help to many people and, hopefully, keep others from going as long as many of us do without a diagnosis. I have posted a copy of the information about the Undiagnosed Diseases Program below. If anyone knows someone or has a loved one with an undiagnosed disease, please share this program with them to see if they might be able to qualify. In some cases, the NIH will actually cover all the costs of travel to and testing at the NIH!! Very exciting news indeed.

"Undiagnosed Diseases Program

Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program pursues two goals:

• To provide answers to patients with mysterious conditions that have long eluded diagnosis
• To advance medical knowledge about rare and common diseases

The program is trans-NIH in scope. It is organized by the National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases (ORD) and the NIH Clinical Center. Many medical specialties from other NIH research centers and institutes will contribute expertise needed to conduct the program, including endocrinology, immunology, oncology, dermatology, dentistry, cardiology, and genetics, which are represented among the dozens of participating senior attending physicians who may participate in the program's clinical research.

Any longstanding medical condition that eludes diagnosis by a referring physician can be considered undiagnosed and may be of interest to this clinical research program. Of the total number of cases that may be referred to this program, a very limited number will be invited to proceed in the study at the discretion of the program’s medical team.

For more information please call (866) 444-8806

Please do not send Undiagnosed Diseases Program-related email or submit medical records to the NIH Office of Rare Diseases. All communication should be handled through the Undiagnosed Diseases Program staff at the NIH Clinical Center."

NIH-NORD Undiagnosed Diseases Program

National Invisible Chronic Illness Awareness Week

Okay, so all of you know that I recently did a "mini-series" of sorts on Invisible Illness. Interestingly enough, this week is National Invisible Chronic Illness Awareness Week (Sept 8-14) at www.invisibleillness.com. They are sponsoring 20 free online seminars on Chronic Illness, featuring guest bloggers daily, and have articles to read, among other things. The theme is "Living with chronic illness is a roller coaster. Help a friend hold on!"

As you'll see to the right, there is a new widget that I have added to support this week. As it says, Nearly 1 in 2 Americans has a chronic condition, and 96% of them live with an illness that is invisible. Now, of course, not all illnesses are disabling, but all people need love and support when going through a tough time. Paul J. Donoghue and Mary Siegel, co-sponsors of the week and authors of Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness say, "Invisible chronic illnesses (ICI) have symptoms that are difficult to see and impossible to measure such as pain and fatigue. So those with ICI frequently encounter not compassion and support but impatience and skepticism from physicians and loved ones."

If you know someone who suffers from or has a loved one who suffers from a chronic illness, be sure to check out the website and pass on the word.

Life Is Fine

This is the best poem ever. Truly inspirational to anyone facing a difficult time in their life.

Life Is Fine

I went down to the river,
I set down on the bank.
I tried to think but couldn't,
So I jumped in and sank.

I came up once and hollered!
I came up twice and cried!
If that water hadn't a-been so cold
I might've sunk and died.

But it was Cold in that water! It was cold!

I took the elevator
Sixteen floors above the ground.
I thought about my baby
And thought I would jump down.

I stood there and I hollered!
I stood there and I cried!
If it hadn't a-been so high
I might've jumped and died.

But it was High up there! It was high!

So since I'm still here livin',
I guess I will live on.
I could've died for love--
But for livin' I was born

Though you may hear me holler,
And you may see me cry--
I'll be dogged, sweet baby,
If you gonna see me die.

Life is fine! Fine as wine! Life is fine!

Langston Hughes

· Invisible Illness Part 3: The Push-Crash Cycle

From CFIDS Suggestions for Friends (cfids.org):

Friendships may become strained, may be strengthened, or may dissolve in the face of chronic illness. The give-and-take in a friendship becomes unbalanced when one person is ill. Many ill people become reclusive and distant, especially during relapses, as spending time with people requires energy. Since energy is in short supply, your contact may be less frequent than in the past.

* Recognize that although the person may seem "normal" when you're together, you may not see the relapse which follows activity. Many people with CFIDS want to function at their best when with their friends, but privately pay a price later.

You can pretty much guarantee that anytime you see a friend that has some type of severe or debilitating chronic illness, they look better than they feel. For some reason, unknown even to ourselves, we always brighten up & act healthy as can be when were around friends, family, even doctors. So if a person w/an “invisible illness” LOOKS sick, you know they’re in really bad shape. Most of us wish that there were a way to convey how bad or ill we feel, but in many cases we’re just so happy & amped up to be around other people that we seem almost healthy. The real problem w/ this cycle is that it often gives people a false idea of how severe our sickness is: “Well, she was sitting up & talking to me, so she must be doing really well” or “she came out to dinner with us, so she must be all better”, or “I saw him at the store the other day, so I don’t see why he can’t work” or “ if she can do___, then why can’t she___ (drive, work, babysit, etc)”. I am TERRIBLE about acting nice & healthy at the doc or around friends but then being unable to get out of bed for days as a result of my excursion. In many cases, we actually have to concentrate so hard to keep from seeming sick that we push ourselves farther into illness.

It’s a strange paradox: we want people to know we’re sick, but we often don’t want the public stigma that goes along with it so we go out of our way to act as healthy as possible. In a way, people with chronic illness are “masters of disguise”: disguising their illness, disguising their fatigue, disguising their pain. I know countless examples of people who should be using a cane or a wheelchair in public places (including myself), but refuse to do so out of embarrassment & to avoid the stares of strangers wondering “What’s wrong with her?”. Many of us find ourselves avoiding going to stores or on public outings b/c we don’t want to be seen in a wheelchair. Or we feel self conscious using our handicapped sticker b/c we look young and healthy but can walk less distance than an 80 year old. It’s a terrible shame and ridiculous in a lot of ways, and it’s something we have to fight against every day. As a person who was always in control of myself & my own destiny before my illness, it’s agonizing to have to be pushed around the grocery store in a wheelchair. I know I often push myself WAY beyond my limits (and then pay for it later) just to avoid feeling weak & dependent on someone else. It’s an endless struggle.

What is also important, however, is to hold on to a certain amount of your own stubbornness and independence. You must spend most of your time working within your limits, but cannot allow yourself to atrophy & give in to sickness & despair. lf you do not know how far you can go (and have a drive to constantly work to increase that amount) then you will have a much more difficult time improving & dealing w/ your health problems over time. For example, I am now doing Physical Therapy once a week to build up the muscles around my joints because I keep dislocating them. It is thoroughly unpleasant, and makes me feel worse in general, but it is a necessary evil and may eventually increase the amount of activity that I can do.

One more interesting description of how difficult it can be to manage the small amount of energy you have throughout the day is called The Spoon Theory by Christine Miserandino. The theory explains how a person with a serious illness must have extremely good "energy management" skills that allow them to make it through each day. I recommend anyone that knows someone who has a serious illness check it out to get a bird's eye view of how difficult it can be to do even the most basic of tasks when disabled.

I hope that everyone has found my little Invisible Illness series interesting and useful. I have lots of ideas for future posts, so you'll just have to wait and see what comes next! :)

Intermission

Just writing a quick note before the final Invisible Illness entry in my "miniseries" to let you know that I added a list of some of my favorite books on Chronic Illness that links to Amazon. I have a short blurb written by each one to give you an idea of what I think about the books. It's on the lower right hand column for anyone who is interested. As I read more of them, I'll add them to the list.

Also, I plan to add some slightly more upbeat topics in the coming weeks so that it doesn't feel so serious around here all of the time! Hope you'll hang around with me as I bungle around with blogging.

Invisible Illness Part 2: What NOT To Say

A woman that I met through the Dysautonomia Information Network (dinet) has a great explanation of things that can be difficult for people with severe chronic illnesses to hear. I received this list from Melissa Mambort, aka Sunfish, who also has autonomic dysfunction (severe progressive autonomic neuropathy). She has a great website on which she shares many of her struggles and ideas at http://www.freewebs.com/sunfishoutofwater/adayinthelife.htm.

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A few things NOT to say/ask (pretty please?)

I realize that 99.9% of the time the things I'm going to list are NOT said with any malintent. People may simply be trying to make conversation in a difficult situation.

I am posting this to let people in to a bit of my world. To raise a bit of awareness and educate people about how certain things that may seem benign can actually sound on the receiving end.

Here goes:

1. "Are you feeling better?" When asked generally, this question is particularly tough for me. Because my reality is that I don't even know what it means to feel "better." If asked in the context of something specific, i.e. a recent hospital stay, a particularly bad day, a certain situation, etc. that's entirely different and fairly easily answered, but often it's asked in a general sense because people want to hear me say "yes." I would LOVE to say "yes" and have that be the truth. But that's not the truth and after years of decline and it's not likely to be anytime soon, if at all. If I were better I wouldn't have had to stop working, stop even part-time school, move in with my parents, etc. You get the idea. But trust me...if "better" enters into the picture, I will be shouting it from the rooftops.

2. "Stay positive/ hopeful, things will get better..." Most people who know me well tend to say I'm a pretty positive and hopeful person. I'm also stubborn & determined & have thrown in some denial over the years to keep going at times when my body has vehemently protested. I will never give up hope of improvement(s) - however small or large - whether via medical treatment or a miracle. I wholeheartedly believe that anything is possible. But my current reality is that there aren't any promising treatments on the horizon for my overall health. And to be truthful thinking on a daily basis that things will get better when it is very possible that they won't is more difficult than trying to move forward as best as possible within the actual limitations of my body.

3. "I know exactly how you feel (regarding fatigue, nausea, moving home, etc.)" Whether in the context of chronic illness or anything else this is dangerous territory. There are many realms wherein I would have no place saying this to another. And, however well intentioned, it's a hard thing to hear when one knows full well that it's not true. The few people who really can say this to me in my life because they have in fact been where I am in some way are precious, but the reality is - thankfully - that most people haven't been. Because being fatigued, even if from illness that is more short-term, isn't the same as being fatigued all the time. Having a stomach bug that limits food for a few days isn't the same as not being able to eat at all for months on end. And moving in with parents for various other reasons isn't the same as moving in because of not physically being able to live alone any longer. So while empathy can be a great thing, the good intention can end up hurting more than helping when the comparison isn't really comparable.

4. "It must be great to not have any schedule/ commitments" It IS great when normally one's schedule is packed and it's for a weekend or even a few weeks. But it is NOT great when it's because it is physically impossible to keep a schedule or honor commitments. I would love to be able to know that I can do anything at all in a given day much less schedule anything and feel confident that I would be able to be there.

5. "I wish I could sleep/ rest that much" Much along the same lines as the above sentiment, it's a situation of something being a choice or a luxury rather than it being a mandate. Excessive rest and/or sleep isn't enjoyable when the body refuses to do anything else.

6. "Are you glad to be home?"/ "It must be great to be back home" This issue is a double-edged sword. As I wrote a bit about in the update about the move (10/30/06), it's in truth very difficult. I am very thankful to have a place to come home to. It is a safer place to be in the midst of ever-evolving medical sagas. And since we've known the move had to happen it's good to have it behind us rather than looming ahead. But that doesn't make it great or something that I can get excited about. I'm almost 27 and had lived on my own for over nine years. I never could have imagined moving back in with my parents. Coming home to visit is one thing but moving in indefinitely because I physically can no longer live alone is entirely different and more than a little difficult.

7. "You don't look sick" To be honest I'm thrilled that I don't look as bad as I often feel. There are times when I don't look well at all but most of the time - if I'm sitting or lying down & you can't see my IV lines - I don't look sick. But hearing "you don't look sick" can feel like doubt or disbelief when the reality is that no matter how good I look, I am.

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The comments from Melissa's list that have been most difficult for me are #3, 4, and 5. I had a few people saying that it must be nice to have a “vacation” and sleep and rest. One said that now I could be a "Lady of Leisure". Another friend had someone say it must be nice to stay home and “eat bonbons all day”. Wow. Is it nice to be able to sleep when you have the flu? No. Is it nice to not be able to stand or walk or drive? NO. Is it nice to be forced to stay home when the only thing you want to do is work? NO. So of course it isn’t nice, it’s terrible. Thankfully, most people weren’t that insensitive and realized how difficult it must be to be that sick.

So, does this mean that we don’t ever want to talk about our illness or how we’re feeling? Not at all. It is a huge portion of our lives that cannot be ignored. It is fine to ask how we have been feeling or how our doctor’s appointments are going or what we’re up to during the day. In fact, we appreciate that. What we don’t like is people acting like if we have a day where we are not close to comatose then we are all better, or thinking that they understand how we feel. No one who hasn’t had their life completely taken away by illness can understand what we are going through. BUT, don’t be discouraged or scared about what you say every time you are near a sick person. If you truly care about and love that person, they will understand what you are trying to say. Just try to apply a version of the golden rule: If I were in that person’s shoes, what would I want to (or not to) hear?