The long path to acceptance

I haven't written in a while. I don't know why. I'm lucky enough to work at a place that accommodates my disability which I am grateful for,but my job takes everything out of me. I'm tired often and let myself get distracted by books or television or sometimes nothing at all. I guess those are some of the reasons.

I also have been feeling depressed at times...not clinical diagnosed depression, but the depression of living for years with a chronic disability which has so greatly impacted my life. Simultaneously, I have felt a pulling back of many people I know or used to know. I don't know if it is just that I can't see people often so they forget about me, or if there is something about me now that repels people. Is it that I am sad and angry and that shows though in normal conversation? Even when I think I am being kind or sociable or even helpful, I often find that I have said something wrong. Have I lost all social skills during this long stretch of abnormal living? I honestly don't know.

This is difficult and a somewhat new experience that I am struggling with. I want to live a worthwhile and productive life. Although I can't do much due to this awful illness, I want my life to count for something. I want to be thought of and remembered for something good. I want to be helpful to someone but I seem to be the opposite...either a burden, or when I try to help, I go about it the wrong way.

So this all has sometimes just propelled me into a state of inaction. I don't want to write because I don't even know where to start. I also don't want to add to anyone else's depression. If you are reading this and can relate to feeling worthless, I do not know what to say to help you. I believe that everyone is worthwhile and has something to say. I just can no longer seem to find that part of myself.

My hope is that by brute force, since I propelled myself to write SOMETHING after a long break, that it will break this downward spiral I find myself in. A perpetual funk. My body is somewhat stronger this year but now I am hit with an emotional quicksand that paralyzes as much as my dyautonomia sometimes does. Will there ever be an end to this? Sometimes I think back to the funny girl I used to be who liked absurd jokes and activity. I loved the sun and being outdoors and felt joy in being able to walk or do housework or visit a restaurant. Where did she go? Is she still there? Or is she gone for good?

I don't know.

Is it trite to say that sometimes what saved me was this twitter account? It's true. People I've never met have at times given my life meaning and hope. They listened to me and I listen to them. I have some people in my “real” life also who haven't run for the hills. I am so grateful for them. I am working hard on trying to be thankful and grateful for what I have. Perhaps that will be how I find my way back. I do have much to be grateful for. I just have grown weary of the tremendous effort it takes daily to focus on those things while also finding the daily strength to get out of bed, and fight sometimes just to stand up.

I'm so tired. I want to be normal again. Maybe it's just taken this many years to figure out I will never be normal again. I will never be who I used to be. Is acceptance a stage you go through like a stage of grief? 

I thought it was giving up to accept things. But after all these years, it seems like the right thing to do. 

Here's to my new normal, no longer with a hope for recovery but with the beginning of peace in accepting what I am today. 

Twitter Heroes

Today was a bad day for me.  I've spent the last 3 weeks in the grip of a dysautonomia set-back, which for me means mostly, but not limited to: disabling vertigo, severe digestive upset, disabling fatigue, and a variety assortment of other unpleasant body rebellions.

Today is a clear and beautiful sunny day, and how am I spending it?  Doing the "usual" dysautonomia activity of laying in bed in a dark room.  Something I have gotten very good at over the past several years. Trying to read yet another book through a headache haze or watch another repeat of Law & Order, SVU.  Looking at my unvacuumed carpet and trying to muster up strength so I can get through a shower tonight. Trying to limit my multiple trips to the bathroom to be sick because getting there requires walking which increases the dizziness. Listening to people doing normal things outside that I can't do.

Just another regular day in dysautonomia land.

Most days I am not this depressed but I think when the physical stuff is really bad for a prolonged period of time, it wears me down.  There are days when I'm not this sick and it's easier to have a better outlook and even hope sometime that this hellish journey will actually end.  But it never does; it always comes back.  Sometimes a stressful event or other illness will set it off.  Sometimes, there is no reason at all; one day is OK and the next day is not. 

All this to say, I have been feeling really low lately from this latest lengthy bout and am worn out by it all.  And it is hard to find relief or help to get out of the low frame of mind that it causes. I call my mom once a week and it upsets her when I am very ill so I pretend I am doing OK when I talk with her.  I have a few friends who are still around but they don't understand entirely and it's not easy to call someone and say "I'm in the depths of despair because I have a chronic illness that will never end!"  How can anyone understand THIS?  And sometimes I can't bear the good intentioned remarks like "There's a reason for everything." or "You have to stay positive!"

So I go where I often go when it all seems hopeless: Twitter!  Yes, you read that right but I'll say it again:  TWITTER. 

When I started this blog and later a twitter account, I did it because the writing was therapeutic for me and because I hoped that sharing my experiences would let others know that they were not alone. What I did not expect is that I would find the most supportive and understanding group of people I have ever encountered in my life.  I went online to GIVE support and what I found is that people gave support to ME.  When I am very depressed and I post a tweet about it, almost always, somebody tweets support, hugs, friendship, and comfort.  And it is other people who are also chronically ill, who understand the despair and loneliness and utter weariness of the strength it takes to carry on.

What I also found was that there are so many people much worse off than me who are so uplifting and giving.  I found them to be inspiring and I found purpose in helping others who needed help.  When all you can do is lay around, it is hard to feel there is any purpose sometime.  But it does feel good to help someone when they need it.  And in return, I also learned...and am always humbled...when someone offers me support.

Is is weird to feel close to, and a sense of friendship and connection, with a group of people I have never met?  There was a time I suppose I would have thought so.  But as my physical world has changed and become much smaller, the virtual world...a world of real and wonderful people I would add...has become larger.

This blog posting is dedicated to all of my friends on twitter who lift me up when I am down and who give me purpose and strength.  Thank you all of you (and many of you know who you are!).  I would like to say that you have saved my life in a way; you save me when I am lonely or when I despair.  Today I was feeling sorry for myself and feeling depressed and hopeless.  But then I got online and although I am still really sick (and OK, yes still feeling sick of being sick!), I feel better emotionally and feel happier.  Thanks to you all; this one is for you. 

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.