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.  

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!