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.

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. 

Christmas and dysautonomia

Christmas is supposed to be this time of good cheer and happiness and fun.  There are thousands of songs devoted to "the most wonderful time of the year" and whether you celebrate it for religious reasons, as a time of giving, or a massive extravaganza of gift exchanging, it's supposed to be a joyous experience. 

When you have POTS however, the holidays become a test of strength, endurance, mental and physical stamina, and extra management of symptoms.  Shopping for gifts (online of course since walking is out!) and wrapping them, sending cards, getting dressed to go out, cooking food, and visiting or being visited are all activities that are challenging for people with dysautonomia. 

Simultaneously, I feel blue and depressed at not being able to fully participate and having to sit home while knowing that other are celebrating.  It's hard to turn down invitations and to watch how much fun others are having and how many activities everyone has packed into their lives. It's depressing to say once again, "maybe next year" I can do this or that or whatever the activity or party is.

So how to get out of this frame of mind and enjoy the holidays?

I decided to make a list!  Here are my five top reasons that I'm glad I have hPOTS for the holidays:

    5. The inevitable flair up of IBS will ensure that I won't gain any weight.  Heck, I'll probably lose weight!
    4. I will have all the symptoms of being drunk without having to drink anything alcoholic!
    3. Nobody will expect me to help do the dishes after dinner!
    2. Since I will have a little extra time off work, I can catch up on multiple Law & Order SVU all day marathons!
    1. I get to see my newest nephew William!  :-) 

Oddly, I do feel better after making that list!  And there is an SVU marathon tonight so let the fun begin...

I wish everyone reading a very merry Christmas and GOOD HEALTH, happiness, peace, comfort, and prosperity in 2013!

Giving Thanks

All I want to do in this post is give thanks to a few folks who have helped me get through the past year and half. 

My most sincere and heartfelt thanks to:

• My awesome husband, who has stood by my side and has taken care of things too numerous to post here, and who tells me I will get better in my worst moments.
• My mom, who stayed with me when my husband was out of town, who brings me food, and who has helped take care of me at a time when I should be taking care of her.
• My dad, who wants me to get well, who always asks how I'm doing when I call, and who shares sometimes the bad luck that seems to follow me. (I think it is hereditary!)
• My brother and his wife who came when I called, who check on me, and who have given me my nephew.
• My friends who have never wavered in their support, who send cards and emails, who check up on me, and tell me it will be better some day. 
• My cousins, who send me cards and call, who help take care of my mom, and who are always there. 
•  My mother-in-law, who always asks about me in the midst of her own troubles, and my father-in-law, who is in much worse health than I am and who shares "war stories" with me. 
•  My sister in law, who has sent me emails of support.
• And my three sweet, funny, and sometimes annoying cats, who have always been there (not that they had a choice!) when I was lonely or down or sick.  :-)

I love you all and I am so determined to get better so that I can stop being a burden and become the person who is there for all of you.  You have all uplifted me and given me hope in the worst of times this year.

Writing about you has reminded me that although I have a disabling illness, I also am a very lucky woman indeed. 

Thank you from the bottom of my dysautonomial but very grateful heart.  :-) 

And a very heartfelt wish for a good Thanksgiving and good health to anyone who is reading.  If you are sick or alone on the holidays, remember that you aren't alone in your experience.  The day will pass and with tomorrow, there is always hope for a better day in some way. 

Singing the hyperadrenergic pots blues

ba da ba da bum
I get up and fall down
ba da ba da bum
I go back to bed
ba da ba da bum
The room's spinning madly
ba da ba da bum
WHAT'S WRONG WITH MY HEAD??

ba da ba da bum
So I went to my doctor
ba da ba da bum
He said "I know what you gots!"
ba da ba da bum
"Your brain just isn't working"
ba da ba da bum
"You have hyperadrenergic POTS!"

Refrain:
Oh I got the hPOTS blues da dum da dum
Oh yeah, I got the postural orthostatic tachycardia syndrome blues.  da dum da dum
I'm sick all the time
I can't hardly rhyme!
I want to do more
But my brain's acting poor!
Oh yeah, I got the postural orthostatic tachycardia syndrome blues. 

One more verse:
ba da ba da bum
I need to eat breakfast
ba da ba da bum
My cats need to be fed
ba da ba da bum
I drag my butt to the kitchen
ba da ba da bum
And then go right back to bed!

Refrain

This is a really silly posting I know.  But sometimes when all else fails, you just have to laugh or do something absurd. :-)

Please add your own POTS blues verse to the comments if you have one!

My report card this week: 4 D's

Depression, Despair, Down-in-the-dumps, and Dizzy. 

That pretty much sums up the past three days for me.  After weeks of feeling some recovery and feeling stronger, I got knocked back big time and had what I call a POTS "attack".  For me, this is where my blood pressure races out of control and I lose all strength in my body so I can't stand or function.  And recovery is slow...sometimes weeks, days at a minimum.  I spent 48 hours bedridden, barely able to get up to do the basic things like eating and going to the bathroom this past weekend.

I think what set it off for me was four stressful events:  having to get out of the house to visit someone (which I wanted to do but any external event causes me extreme stress since I don't know what my body will do), having a stressful event at work, having an argument with someone close to me, and having visitors to the house for the first time in a year.  All of this occurred within a period of a week and half.  It turned out to me too much for me and I was reminded that although I'm getting better, that things are still pretty fragile. 

Homeostasis.  As defined by wikipedia:  "In simple terms, it is basically a process in which the body's internal environment is kept stable."  

I want homeostasis for my body.  I want to live a normal life again.  I'm so tired of having to muster every bit of mental and physical strength just to do something simple like leave the house. 

But I don't have a choice in that matter right now so I am once again resorting to every last mental and physical trick to try to recover and get sort of back in the saddle.  I have learned that I need to continue to be careful and that recovery will be slow.  But I was getting better and I believe I will continue to do so.  It was just a couple steps back this weekend after several steps foward, that's all.  At least that is what I'm telling myself.  :-)  And yes, I can still smile, at least on my blog and in real life also.  :-) 

If you are reading this, I am asking something of you this time.  Please wish me strength.  I believe there is power in collective thinking.  Please send me good "vibes" and thoughts of health and strength.  I will do the same for you. 

Motivation

For those of you who are regular readers, I'm sorry for the lack of postings lately.  Along with having hPOTS, I am dealing with some issues in one area of my life right now that have negatively impacted me.  I can sum it up briefly by describing these issues as "mean people".  And I will leave it at that for now other than to say that I haven't felt motivated to write for a while. 

However, I did want to share with you something really really good that has happened, and that is the birth of my beautiful nephew William! 

William has been a strong positive motivation for me to get better and in one of my very few social outings this year, I went up to the hospital to visit him the day he was born.  I was able to get to his room with the help of a wheelchair and my husband who kindly pushed me around in it. 

My first impression of William is that he seems to be a calm and laid back little guy.  He let lots of people hold him and pass him around without much fuss on his very first day of life.  He cried a little when he didn't like something but then he got over what bothered him and just enjoyed laying around wrapped up snugly in a warm blanket. 

I'm going to try and take a cue from him and not spend so much time fussing and worrying about things that aren't worth any time fussing and worrying about.  And maybe I'll keep a warm blanket close at hand during the day.  :-)

Something I am looking forward to

I'm going to be a new aunt in a couple of weeks.  This will be the first grandchild for my parents and my only "blood" nephew (I am lucky enough to have seven awesome nieces and nephews via my husband). 

I am really excited and very much looking forward to meeting him!  In fact, in some weird way, I already feel a connection to him.  Living with POTS can be so depressing.  As I find ways to cope, my nephew has been like this beacon in the dark for me.  He has given me a renewed sense of motivation.  I want to be well so that I can get to know him and I am so happy for my parents who will now have a grandchild. 

I have conversations with him sometimes in my head and I like to think that in some cosmic way, he can hear me.  Even if that is completely implausible and silly, it makes me feel happy to talk with him.  I'm sure I will be his favorite aunt once he really can hear me.  :-)

Wouldn't it be great if babies were the cure for POTS?  :-)

The good, the bad, and the REALLY bad

I've been down for a year and a half now with my most recent attack of hPOTS and thought it would be good to reflect on what has helped me during this time and what has not helped so here goes:

MEDICINES (in order of starting to current):
1. Metoprolol (a beta blocker):  GOOD.  Helped lower my blood pressure but made me sleepy.

2. Norvasc was added to the metoprolol help lower my blood pressure.  This was a REALLY BAD medicine for me which made me swell up and I had to stop immediately.

3.  Cymbalta and celexa:  REALLY BAD.  Made me feel HORRIBLE.  Increased dizziness and fatigue.  Felt like I was half dead.

4 .  Bystolic:  GOOD Prescribed to replace the metoprolol.  Helped a lot.  Lowered my BP but not enough and I still had attacks of the "dizzies" so the doctor added:

5. Clonidine:  Although this is supposed to help hPOTS, it was REALLY BAD for me.  I was bedridden for two weeks and then spent the next 10 weeks barely functional.  It felt like gravity was pulling me down constantly and I was extremely fatigued and vomiting so much that I had to take medicine to control it.  Clonidine did take away my dizziness but I could not function.  The doctor FINALLY agreed that although I was "safe" (my blood pressure was more stable), that having having no quality of life or abilty to leave the house was not acceptable and took me off it.  Hallelujah!  The withdrawal took 2 weeks since the dizzies came back in force for a while but the fatigue finally lifted. 

6.  Bystolic at a higher dosage.  GOOD.  I'm not ready for prime time yet but so far, I am feeling the best on this drug.  I am able to get in to work half days, can take brief trips out (as long as I can sit), and occasionally, I actually feel "normal" for a few hours. 

DIET AND EXERCISE
1.  Exercise.  One of the most difficult things about hPOTS for me has been the inability to exercise.  I was previously athletic and exercised daily.  The inability to stand up or walk has been one of the most depressing things I have ever faced.  I did find however, that I could still exercise by using a recumbent bike.  It has literally saved me from despair because I could move and as it turns out, exercise is GOOD for hPOTS!  My doctor suggested adding aerobic exercise to my day, so I have increased the resistance on the bike and started lifting 2 pound weights as well.  It's tough and sometimes I get very dizzy but overall, I think it is starting to help me get stronger.  And mentally, it helps me to stay positive.  I highly recommend a recumbent bike to anyone who has hPOTS and can't walk. And my personal belief is that exercise is beneficial to any situation.

2.  Diet.  I find that eating a protien and drinking fluids several times during the day...literally every 2 hours, keeps me more stable.  If I don't do this, or if I eat too much sugary food, I feel like I'm having a diabetic attack.  I get dizzy (or dizzier), shaky, see black spots, and my BP gets erratic.  Non-processed foods, protien (lean meat), almonds, and just generally a well balanced diet eaten in small portions often seems to work best for me.  I have to watch my weight more since I'm not as active but I found that it is critical to how I feel each day to eat well.  My weakness is ice cream unfortunately, but if I allow small portions, it's OK for me.  There's not much fun in having hPOTS so I think the joy of ice cream once in a while outweighs the drawbacks.  :-)  

3.  Not exercising, laying in bed all day and eating badly  =  REALLY BAD.  I physically feel worse, and find that it quickly leads to depression to not get up even on the worst of days. 

EMOTIONAL AND MENTAL WELL BEING
This is personal for everyone but here are things that help me:

1.  Staying in touch with friends and family.  This is hard since it takes energy but due to technologoy, I find that I am able to keep in touch via email, blogging, and phone.  Sometimes I can't do any of those things but I make efforts to as much as I can.  And I have been so lucky that I have had many friends and family stand by me during this time. 

2.  Finding things I can do that I like.  One of my salvations has been reading.  I also rediscovered crocheting which I do for others.  I like to write and usually write these blog entries when I feel sad and it somehow makes me feel better.  I've discovered that there are many things I can do sitting down.  I REALLY want to walk again some day but if I can't have that now, then there are things that I can still do that are fun. 

3.  I avoid negative people and those who bring me down.  This is not always possible but I try.  Some people have good intentions but say things that don't help.  I understand and accept this; it's hard to know what to say sometimes when people are having problems.  Unfortunately, I have also encountered people during this time who have intentionally tried to hurt me (I will write about this in a future blog).  I have learned to find much inner strength during this time but it takes a lot of energy so I just avoid these people as much as I can. 

4.  I find something in every day that makes me smile OR I remind myself to be thankful for something every day.

5.  I pseudo-meditate.  I don't have the patience to do meditate very well but sometimes if I am stressed or feeling bad, I take some time to think positive thoughts.  I have no training but I use my own thoughts based on readings and past experiences with yoga and exercise.  I am able to lower my blood pressure at times and believe/hope that being mentally strong and at peace helps recovery.

I am interested in hearing what has worked or not worked for you so drop me a line or respond to this post if you want to share. 

Why do bad things happen to good people?

My doctor sent me a book called "When Bad Thing Happen to Good People" by Harold S. Kushner.  Kushner is a rabbi with a son with a degenerative disease who would die young.  He wrote the book to try to help good people who encounter bad things try to make some sense of it all.

The book has somewhat of a religious bent but it is also philosophical and I'm finding it helpful to read a little every now and than.  I'm one of those people who do not follow any organized religion but I consider myself spiritual in that I feel a connection to others and  I think there is something more to us than just our physical bodies.

Throughout my life, I mostly followed the train of thought that if I lead a good life and treat others with kindness and respect and that if I take care of my physical body, that the fruits of my efforts should pay off in some way.  Until I got hPOTS, I believed that I had more control over my destiny than I actually do.

I have come to believe in more randomness and that bad things just happen sometimes and they can happen to people who are good.  And the converse is also true; I have experienced this year watching a very bad person have very good things happen to him.  Life isn't fair and balanced but I admit I have spent some time since becoming ill asking "WHY ME??".   What did I do to deserve THIS?  And the answer I have come up with is...NOTHING.  I did nothing to deserve this.  And many other people who are suffering and have suffered, some much greater suffering than this, also did not deserve what happened to them. 

So why be good then?

This is something I have asked myself repeatedly.  I even sometimes joke with friends that instead of leading such a good life, that I should have been drinking and smoking and cheating and lying all along and maybe I would be healthy and wealthy instead of sick and not wealthy.  :-)  

For me, it comes down to this:   I have to be true to myself.   And that means that I think we should all try to be the best we can be.  I think we should treat our bodies well.  We should be kind to others.  I believe in the power of thankfulness both for what I have and for what others do for me.   And I still believe that good trumps evil.  It may not manifest itself in material wealth, material comfort, or good health, but spiritually in my book, good is better than bad.  I cannot be bad or hurt others just because choosing good does not guarantee some sort of "payback" of goodness.

It has taken a long time but I have learned that being angry about having hPOTS and asking why this happened is not helping me.   This sucks to be sure and a lot of bad things that have happened to others people sucks.  But if I spend the rest of my days living in anger, then I am wasting my life.  Anger is such a destructive and difficult emotion.  I don't want to spend my limited energy asking why any more.  I will do what I have always done; continue to treat my body well and to treat others well, to be thankful every day for all that I have, and to focus what energy I do have on positive endeavors. 

I haven't finished the Rabbi's book yet so I don't know if he will ultimately tell me the answer in the end.  I hope that if you are reading this blog that you didn't expect that I had the answer.  I can only say that I am beginning to find peace within myself somehow and my hope is that this may help my recovery in some way.  Perhaps if my spirit heals then my body will follow. 

Stay tuned...

Courage and dysautonomia

To paraphrase Mark Twain, "Courage is not the absence of fear but the ability to act in spite of it."

When you have dysautonomia, having courage is a given because it can bring much fear into your life.  When you don't know how your body is going to behave, it can be a terrifying and anxiety ridden experience to go anywhere in public.  My own personal outings have included collapsing alone in a Walmart, sitting almost prone in work meetings because I was so dizzy I could hardly sit upright or stay conscious, and not being able to leave an event because became I too weak.  These are all humiliating experiences and real confidence busters for going out! 

This week, I'm switching medicines for the fourth time since my current protocol isn't working well.  It took me a week to work up my courage to do this.  Every time I try a new medicine or withdraw from one, it causes an immediate 2 week period of complete collapse followed by a slow recovery.  Extreme dizziness, fatigue (where it feels like gravity is 100x greater than normal is pulling down on my body), and stomach issues (vomiting, etc) are the norm for me during each medicine trial.  To get out of bed is an ordeal and I usually have to crawl to get from room to room.  This makes is extremely discouraging to keep trying things to say the least.

All this has also wreaked havoc on my job which creates more fear.  And then there's the fear of never getting better, the fear that friends will tire of you, etc.  The list of fears can be endless and overwhelming. 

It just occurred to me that having POTS is like it's Halloween every day!  :-)  (because of the fear...)  I know, another bad joke. 

So I come back to Mark Twain's quote about courage.  I think to live successfully with POTS you have to learn to accept living with fear, but you don't have to let it defeat you.  Living with POTS takes courage, lots of it!  In terms of POTS, I think of courage as being to get out of bed on a morning when you have extreme vertigo.  Courage can be taking a single step, or maybe on a good day, courage can be making a short trip to a grocery store. 

In other words, courage with POTS is really just carrying on with life sometimes.  POTS sucks... there you have it, and it causes all kinds of fears.  But this is the life I have to live and I choose to get up every day no matter how bad the day and do as much as I can each day.  I also try to find something every day to be thankful for, no matter how small.  Today I saw a hummingbird moth and I took it as a sign that tomorrow will be a better day.  Probably wishful thinking but it's OK to indulge in wishful thinking.  :-)

My wish for anyone living with POTS would be for it to disappear!  But if it won't, I wish you the best day you can possibly have each day and applaud your courage in living with dysautonomia. 

Dysautonomia: it's not for the faint of heart!

I had three good days in a row this week!  Woo hoo!!  Each time that happens, there is a little voice in my brain that says "Maybe it's really going to end!".  But so far, it hasn't and yesterday, following the three good days,  I had a REALLY BAD day.  My blood pressure was high and erratic all day, I had extreme fatigue, had the dizzies, and threw up in the morning.  I managed to drag myself into work in the afternoon but almost collapsed several times.  In addition, it was one of those work days where things didn't go smoothly. 

But when I got home, there was a little gift waiting for me from a friend (and fellow Toledo POTS lady). I opened the box and this pin was inside:  

And although my day was so very very bad, I laughed out loud at the pin and immediately attached it to my top.  It reminded me that humor can be found in the darkest of times, and also that people who care and good friends and family are the best medicine there is for the soul.

I plan to wear it often.  

Thank you Christina!