I Get By with a Little Help from My Friends

The past couple weeks have been stressful for me for a number of reasons and as expected, the dysautonomia has kicked up a few notches.  Run-away blood pressure and pulse, alternating with extreme low blood pressure, dizziness, brain fog...the works (!) has resulted in my having to spend a lot of time in bed.  It's disheartening because I felt I was getting stronger but the slightest stress or trying to push myself through one or two events can undo months of good. 

Unfortunately, life can't remain even and stable all the time or even for very long.  Stuff happens.  So there will be setbacks.  It has been over two years since I've battled my way through a severe episode that left me disabled for a while and now partially disabled.  I talked with a friend the other day who has a daughter with POTS.  She said it took seven years for her to finally reach a point of being able to live somewhat normally so there is hope.  But it is a long, arduous, painful, and lonely journey with a yet unknown ending.

Throughout the trip, one thing I can always count on is three particular good old friends.  I'm posting a photo of one of them below:

This guy is actually very old...14 years, which is probably around 100 in human years!  But he is the sweetest cat we have ever had and I'm proud to say, one of my most faithful and trusted companions and friends.  He actually exhibits empathy for our other cats as well as his human friends.  When I am feeling low, he is always there, quietly but firmly at my side.  He has some serious health issues of his own so we often hang out together.  When I cry, he will sometimes reach out and put his paw on my hand.  When I am lonely, I can count on him to stay with me.  He is a true blue friend, and his indomitable spirit and persistence of being with me...even when I am very sad and sick and not very good company...warms my heart.

In the sometimes hellish world (or prison as some call it) of dysautonomia, I am thankful for the gentle and funny, sometimes annoying ...but always loving company of my three hair balls.  They bring me comfort when I am hurting, they make me laugh when I cry, and no matter what I say, they listen without judgement.  I love seeing their faces (as my husband will attest to the tons of iphone photos I am always sending him!) and they bring me joy at a time when joy can sometimes be rather scarce.

When you are feeling low and lonely, remember that friends can come in all shapes and sizes, ages, and even species.  :-)  They can come through twitter or facebook or "live" and be transient or lifelong.  If you are reading this and feeling lonely, you can think of me as a friend at least in this moment and perhaps it will help get you through a rough patch to know that I understand the suffering of being chronically ill and you are not alone.

Offering comfort and friendship to all fellow dysautonomiacs and others with chronic pain or illness.  

I am Dysautonomic, Hear me Roar

I am dedicating this blog post to an old song (1972) by the great Helen Reddy "I Am Woman".  You can view and hear her sing it at: http://www.youtube.com/watch?v=MUBnxqEVKlk.  I can think of no better anthem for dysautonomics, and those of us who are also women (but men too!) who have been dismissed by doctors, not listened to, and just generally beaten down by a chronic illness.  I'm also a fan of  Kelly Clarkson's "Stronger" but Helen's song is pretty darn cool.

I've posted the lyrics below. In my head, I replace the word "woman" with "spoonie" sometimes but I like it also as an anthem for women.  Either way, it says, "This is who I am, I am paying a price for it, but I am wiser and I certainly won't let anyone bring me down on account of it."  Thank you Helen Reddy!

I Am Woman, Artist: Helen Reddy
Words and Music by Helen Reddy and Ray Burton, 1972

I am woman, hear me roar
In numbers too big to ignore
And I know too much to go back an' pretend
'cause I've heard it all before
And I've been down there on the floor
No one's ever gonna keep me down again

CHORUS
Oh yes I am wise
But it's wisdom born of pain
Yes, I've paid the price
But look how much I gained
If I have to, I can do anything
I am strong (strong)
I am invincible (invincible)
I am woman

You can bend but never break me
'cause it only serves to make me
More determined to achieve my final goal
And I come back even stronger
Not a novice any longer
'cause you've deepened the conviction in my soul

CHORUS

I am woman watch me grow
See me standing toe to toe
As I spread my lovin' arms across the land
But I'm still an embryo
With a long long way to go
Until I make my brothers understand

Oh yes I am wise
But it's wisdom born of pain
Yes, I've paid the price
But look how much I gained
If I have to I can face anything
I am strong (strong)
I am invincible (invincible)
I am woman

Sticks and Stones Can Break My Bones, and Words Can Always Hurt Me

It is often a lonely road living with dysautonomia when you can't leave the house and the number of social events you've attended in the past two years can be counted on one hand.  Hyperadrenergic POTS is such a weird thing and difficult for people to understand. When I do make the extreme effort to get to an event, I am always disheartened to get the inevitable "But you don't LOOK sick!" or "You look so good! I'm glad you are getting better!"  comments.

It's hard to be lonely but even harder to be in a crowd where my daily suffering and extreme efforts are dismissed in one fell swoop by a comment about how I look.  I want to say "I'm chronically ill folks. I may look normal to you but I am sick. It took me days of mental prep, hours of mustering up strength to groom myself, and I had to take extra medication to control my IBS, nausea, heart rate, and vertigo to be able to make it here.  After I go home, it will take me hours or days to recover. Please do not diminish me by telling me that I don't look sick. "  

I know that most people don't realize how hurtful their comments are and in fact probably think they are making me feel good by saying I look fine.  However, I also believe that there are others who think to themselves that I have some sort of mental illness, or worse, that I am faking being ill just because I don't look like what they think I should look like to be so ill.  Either way, I have learned to smile as I say "thank you" but inside I grieve with frustration.

I know many spoonies write about this so at the risk of being redundant, here's my list of things I wish people wouldn't say to me when they see me.  And what I'm thinking sometimes when they do.  ;-)

My list:
"You don't LOOK sick!"  
What I'm thinking:  "And you don't LOOK insensitive.  But that comment feels like you do not believe that I am indeed suffering with a chronic illness.  I wish you would recognize and acknowledge what tremendous effort it took for me to be here instead of making a comment on how I don't look like what you think a sick person should look like."

"You must be doing better!"
What I'm thinking: "Really, must I?  You have no idea how I'm doing and your words diminish the hard reality of what I live with every day and what it took for me to be here. It is OK to ASK me how I am doing if you want to know but please, do not make observations and judgements. They hurt.  A lot."

"There is a reason for everything." or "It's God's will."  
What I'm thinking:  "Honey, I'm here to tell you that there is no good reason for many things.  There is no reason for chronic suffering, period.  I don't need to have my strength tested or learn anything from pain/illness.  I can learn and be strong just fine without it, thank you very much."

"I hope you feel better soon!" 
What I'm thinking:  "I'm chronically ill!  I am not going to feel better soon!"  I know this phrase is meant well and that people really do want me to feel better but it's still hard to hear.  I wish you would say instead:  "I hope that today is a good day for you."

"You have to stay positive".
What I'm thinking:  "I have lost the ability to do almost everything I love doing.  I am sick every day.  I can't walk.  I have a genetic condition that has left me disabled and I will never be the same again.  Unless you are walking in my shoes, please stop telling me how I should feel."

"You should do this or try that, etc."
What I'm thinking:  "Please do not tell me what I should be doing.  Trust me; I am doing everything in my power to be well. I have seen umpteen doctors, researched incessantly, tried multiple medicines, diets, activities, desperate bargaining, and positive thinking to name just a few.  If I want your opinion or advice on my illness, I will ask.  If I don't ask, please keep it to yourself."

So that's my list. 

I want to qualify this post by saying that I believe that most people are good folks and have good intentions.  Their comments are not offered with malice.  If you are healthy and happen to be reading, my hope is that this post will make you think before you speak when you know someone who is ill.  And for those who are ill, I hope it helps to know that someone understands and shares your frustration at just another aspect that makes a chronic illness difficult and complex to live with.

To be fair, I should probably write now what is GOOD to say to the chronically ill, but because I'm ill, I'm too tired to make another list!  Instead, I'm copying a list posted by someone I follow on Twitter (thanks to @LilacZebra and it looks like it comes originally from a place called highanxieties.org). 

In addition to the list below, I would add that  HUGS without words are always welcome. :-) 

The Dark Side of the Spoon(ie)

One of my very good  old friends who is also ill wrote something to me a while back that made me nostalgic and happy and sad all at the same time.   She said "In my dreams, we are still young and healthy." 

I cried for a while after that because it made me think of how much I have lost with dysautonomia.  I used to walk and garden and dance and shop and lot of other things, but I can't do them any more.  I wish I could be one of those people who are chronically sick who say things like "My illness has been the best thing that ever happened to me!" because it has made them thankful or stronger or for some other reason. 

I admire them greatly but for me personally, at times I confess to thinking, "Who are they kidding?!"  I have learned much from being chronically ill but am I thankful for the experience?  Heck no!  I think I could have gained plenty of experience and wisdom if I were perfectly healthy. 

I have tried to be strong and to stay positive but sometimes I'm not strong or positive and I think it is the set backs that really get to me.  I might get a day now and then where I almost feel normal but then it always comes back.  Two weeks ago, after having had almost a week of sort of feeling normal (and feeling a twinge of hope!) I had a complete collapse and became bedridden again followed by the long slow climb of recovery to partial functionality. 

So I pull out my arsenal of tricks to stay positive, such as the "There is always someone who has it worse than you" trick where I remind myself that there are many people in the world who have it worse than me and thus, I should quit feeling sorry for myself.  Or I try all the physical things such as drinking tons of water, trying to calm my mind to lower my blood pressure, etc, etc.  But after all this time, I am so tired of having to go through this.  I'm depressed by what I've lost and tired of having to muster up the extraordinary mental and physical strength it takes EVERY DAY just to get out of bed.  I'm tired of the set backs; sometimes I think it is worse to have a good day because when things get bad again, it seems so much more awful. 

People think it is helpful to encourage me to be positive about what has happened but I think that sometimes, it is beneficial to face the dark side.   Not the evil dark side like in Star Wars (!) but the darkness of being chronically ill...the depression and anger and grief.  

So tonight, for one night, I'm going to accept my sadness.  Sadness have at me!   Here's how I feel right now:  I want to be young and have my pre-dysautononic body!  I want to be mischevious and RUN and not be responsible!  I want to do something fun that involves MOVING!  I want to walk normally, to leave the house without hours of vertigo and weakness and stomach issues. I want to magically be transformed into a healthy being again!   

And tonight, instead of fighting the good fight to be productive, I'm going to get back in bed and remember in my dreams what it was like to run and dance and have a pina colada.   Tonight I will escape and walk on a sunny beach with my husband and pick up sea shells and eat whatever food I want without getting sick! 

Is this called the acceptance stage of grief?  I'm not sure but I have found that by allowing myself to sometimes feel the emotional pain instead of always fighting it, that I actually do feel better once I get to the other side of it.  

Tomorrow is another day and I'll put on my happy face again.  I haven't lost all hope and do not always feel like this but I wanted to get it out for myself and for others who suffer to say that you aren't alone, and that it is OK to feel the pain once in a while.

For all who are reading, I wish this with all my heart:  good health and strength and whatever gets you through the day, even if it is just writing a blog posting  to fellow spoonies.    :-)

Color My World

I have been thinking lately, if I could express dysautonomia as a visual, what would it look like?  Is there an image or a series of images that would convey to any who saw it the awfulness of dysautonomia?

So I started asking myself, what should be conveyed?  The emotions I associate with it are:  anger, depression,sadness, and loneliness.  The physical things for me are extreme fatigue, dizziness, stomach issues, and weakness. 

And what colors would dysautonomia be?  For me, they would be grey, red, and black.  (As an aside, whenever I have a bad day, I try to do some visualization to help me gain strength and for some reason, the colors I imagine for strength are blue and white.)

I wish I were an artist so I could paint something myself.  What comes to mind are mostly either abstract paintings of greys, reds, and blacks, and photos of people. 

I did a little web searching and found plenty of depressing art.  Enough so that I decided to stop looking because it started making me feel more depressed!!  Here is one image below:

Despair by Joyce Ann Burton-Sousa (from the Brooklyn Art Project):



I also sometimes think of the Franz Kafka story "The Metamorphosis" where a man wakes up to find that he has changed into a giant cockroach.  I haven't read that story in a while so my memory is probably suspect but I think the story represents someone who has discovered that he has become a burden.  Sometimes that aspect of dysautonomia makes me sad...that I can't be of much help to others and instead, I sometimes have to rely on others to help me.

Anyhoo...I guess I am feeling both creative and sad tonight and that ended up as this blog posting.  :-) 

I am very interested to hear from anyone who might be willing to share your thoughts on what a good visual would be for dysautonomia.  Or a story or song maybe.  Although we can't move around much, we can still imagine and create. 

Wishing creative thoughts and imaginings to all fellow dysautonomics.

The Dysautonomic's Basic Guide to Grooming

Before I had hPOTS, I used to get up every day at 5:30am, take a shower, and spend another 45 minutes styling my hair, putting on make up, dressing, and doing all of the activities it took to groom myself for going out of the house for work or otherwise.  Some days, after work, I took another shower and went through the whole process again if I was going out that evening.  I loved the relaxing activity of showering and the feeling of being super fresh and clean.  And I'm not young and not naturally beautiful.  I'm not one of those women who can run a brush through her hair, put on some lip gloss and be ready for prime time.  Getting ready for public display took TIME!

Enter hyperadrenergic POTS, and BAM!  Oh how things have changed.  Grooming has now become a dreaded, exhausting, laborious activity that sucks all the energy and life out of me.  My routine now is that I shower in the evenings and not every day.  After I shower, I drink a couple glasses of water and lay down for an hour before I can get up again or sometimes I don't get up until morning.  And instead of the long hot pleasant relaxing and enjoying experience it used to be, the shower is now a frantic race to just get it done so that I can make it without collapsing or having to endure hours of vertigo. 

That is step one of my new grooming routine. 

Here are the other steps I go through when I have to go out.  I call this the "Dysautonomic's Basic Guide to Grooming":
1.  Shower is done in the evening as described. 
2.  Drag self out of bed in the morning, wash face and plug in the curling iron.
3.  Lay back down for a while.
4.  Brush teeth and curl hair.
5.  Lay back down for a while.
6.  Put on make up and get partially dressed.
7.  Lay back down for a while.
8.  Finish dressing.
9.  Lay back down for a while.
10.  Drag self up to leave the house.   Keep fingers crossed that socks match and that make up is actually on and that clothes are zipped and buttoned (sometimes things do get overlooked!). 
11.  Repeat as needed when going out in public.

Sometimes I think that perhaps I should just give up on grooming and not do it at all.  That way, my "look" will match the way I feel AND I will have more energy because I wouldn't have wasted it all on grooming!  I will be more productive at work and be able to attend more social activities.  :-)  Of course, nobody would want me at work or at any social event if I stopped grooming (and my husband probably would not want to bring me to anything) but that's beside the point...

Just in a ranting mood tonight.  Plus I need to take a shower.  Sigh...

Wishing all of you living with dysautonomia, the strength and energy to get through the normal things! 

The Long and Winding Road

I'm pretty sure that the Beatles weren't writing about dysautonomia when they wrote this song but some of the lyrics resonate with me and the mood and meloncholy of the song capture for me what it is like to have POTS.  If I had to pick a theme song for POTS, this might be it.

The road I've traveled for the past 18 months has been about as winding as one can get.  Some days are horrifically bad where I feel like I'm trapped at the bottom of a vortex in terms of vertigo and fatigue and can do almost nothing but lay there in dizziness with no strength to get up.  Some days, I am able to do some normal things. I can be really bad one day and OK the next or vice versa.

Many times I've been alone and many times I've cried
Anyway you'll never know the many ways I've tried

A couple weeks ago, much to my surprise, I broke down in tears when my dad stopped over.  I try to do my crying when I'm alone but it had been a rough and frustrating day and I just lost it when I saw him.  I felt terrible.  Did I mention that my dad is 79 years old?  I should be taking care of him now and yet there he was taking care of me.  Although I felt like a heel, in some ways, I think it made us both feel better.  I learned that it is OK to show when things are bad and I think my dad was glad that I needed him a little.

The wild and windy night that the rain washed away
Has left a pool of tears crying for the day
Why leave me standing here, let me know the way

I hope some day that someone somewhere develops a cure for dysautonomia.  Until then, no matter how twisty your road is, remember that you are not alone and that tomorrow is always another day. 

A Lesson from a Deer

"A wounded deer leaps the highest" 
Emily Dickenson

A few days ago, a deer walked out into the middle of a shallow point in the Maumee River.  It has been unseasonably warm here, and the ice on the river was breaking up.  Unfortunately, after he got half way across, the river refroze around him and he became trapped in ice up to his knees.  Local rescue groups could not help him; they didn't have the equipment needed and it would have put lives at risk to make the attempt.  Food was thrown to him but birds got it before he could.  It was agonizing and heartbreaking to watch his struggle and to see him get weaker.  The situation seemed hopeless.

The next morning however, much to everyone's amazement and happiness, the ice became slushy, and the deer was able to break his way free and make it to shore.  After 36 hours of no food and standing in freezing water, the deer somehow mustered an inner strength and saved himself.  My husband texted me: 

"Even with great struggle and despair, there can be hope!" 

That deer and my husband's words sort of symbolized what it is like to live with dysautonomia. Somehow watching the deer struggle under the most dire of conditions, and knowing the inner strength and resolve it took for him to fight for his life gave me a feeling of renewed hope at a time when I had started to lose it and  to think that this ordeal with POTS will never end.

I have been thinking of that deer a lot since then and telling myself to "Buck up!" (pun intended!) and re-focus on what I CAN do and quit feeling sorry for myself because I have a chronic illness.

I tried to come up with a clever line about how a deer and my dear (husband) have inspired me here but I have POTS brain tonight and nothing is coming to mind! 

If you are feeling low, I hope you'll remember this deer's story and be inspired.