Grief

In the past I’ve tended toward the conservative side in what I post online.  I mean, the first the face book world knew of me having any medical problems was when my husband posted that I was in ICU needing surgery due to my new pacemaker puncturing my heart causing bleeding into my pericardium.  So this is all kinda new and awkward for me.  And this here is raw and I feel really exposed posting it.  It’s a total Debbie Downer.  (Bet your dying to read on now!)  But I also believe that those of us with POTS and Dysautonomia need to open ourselves up.   Then perhaps, people who are fortunate enough to actually get a diagnosis won’t continue to be told, “It’s only POTS”.  Perhaps they’ll be better informed from the start about what they are facing.  So here goes… Debbie at her worst.

Grief.  It isn’t only limited to death.  And it can sneak up on you ever so slowly or pounce suddenly.  Either way, it’s crippling. 

I always push through.  Life has been incredibly stressful for the last 6 years for many reasons.  Blessed but very high stress.  Even before Dysautonomia hit me, it was very hard to keep up.  Life was stressful and intense even when I was healthy.  I have a wonderful husband and 3 precious children.  But our family also has special challenges that are physically and emotionally exhausting to us all. 

I started having health issues 5 ½ years ago that were mild.  The last 2 ½ years they have really escalated.  But I always push through.  I’ve always prided myself not only on hard work but fast work, accomplishing a lot in a short period of time.  Now I am so slow to accomplish anything, but I push.  I do all I possibly can.

Yet with all the special challenges in our home and my health and physical limitations, nothing has crippled me like grief.  It snuck up slowly and then paralyzed all at once.  I’ve mentioned before a quote from the book POTS Together We Stand.  It talks about the small and big losses with POTS that cause grief on a daily basis.  They cause you to grieve the loss of who you once were.

This week it was one “small” loss that spiraled me downward into grief.  We had a warm day.  A high of 64 degrees in January!  The Dysautonomia has caused small fiber neuropathy which has caused an inability to regulate my body temperature.  So I can’t stand to go out when it’s cold.  I wear layers inside all winter and I still feel like I’m freezing.  So with one warm day and baseball season approaching, I was determined to go out and throw a ball with my son.

What I didn’t figure on was the higher temperature causing a drop in atmospheric pressure, which triggered faster heart rates and a migraine.  By the time we finished morning schoolwork I couldn’t even glance out the window for the brightness, much less go outside.  The kids went out.  I struggled through laundry and fixing lunch.  When I called them in I collapsed on the couch with sunglasses and noise cancelling headphones, waiting for the Motrin to kick in.

And I was devastated.  The one day of the whole winter that I had a chance of going outside with my kids and I couldn’t do it.  That sorrow just triggered all the emotion that I suppress to keep pushing through each day.  I thought of all the ways I am not the mom I used to be, not the person I used to be.  All the ways I feel like I fail my kids.  I thought of our 4^th child that we were never able to adopt, but I still wish for.   I thought of how different all of our lives would look if I were well.  I was overcome.

But I still had 3 kids to finish the days schooling, so I pushed through.  Noah was particularly struggling that day in many ways.  He couldn’t focus.  I said, “Buddy, you did so well doing your school work with Daddy the other day.  How come you were able to get so much done with him?”  With his answer he spoke truth like only a child can, and it was as though all my fears about who I have become as a mother were confirmed.

“Because Daddy’s face smiles when he does schoolwork with me.  Daddy tells me, ‘good job’!  And your face just looks like that (pointing to my face) and you don’t say anything or you fuss at me.”

It was like a knife to my heart.  Who is this person I have become? 

Every day things happen that remind me of my limitations, but this week they just spoke more loudly than usual.  I got a text from my sister who is skiing in Colorado that it was -14 degrees there!  It reminded me of when they first thought that I may have MS.  I got a sudden, strange, definitive thought at that time.  I thought, “Well, if it’s MS, then I’m going on a ski trip this winter with my siblings.”  Sounds weird, but I love skiing with my siblings.  And I had a great trip to Utah with my brother and one sister years ago.  My other sister couldn’t leave her small children at the time.  I wanted to relive that with all of us while I still could.  Well the diagnosis wasn’t MS, it was “only POTS”.  So I didn’t plan the trip or ask my siblings to do this for me.

Well it hadn’t occurred to me yet, until I got that text about the -14 degrees, that I’m not sure that I can ski anymore.  Even if I could medicate enough to keep my heart rate down and breathe well enough to do it, even if migraines didn’t interfere, even if I could balance myself and wasn’t dizzy, temperature regulation is a huge issue.  And now I feel hurt and angry.  Not at anyone in particular, but I guess at the lack of knowledge and understanding about Dysautonomia and POTS.  If I had been given a diagnosis of MS I would have known to go and do as much as I could while I still could.  But with POTS, it’s all so vague.  No one really has a clue.

 And I’m left feeling like I missed my only chance.

So I don’t really have a nice bow to wrap this up with.  I guess I just want people to realize the depth that this illness has to it, especially those in the medical community.  Don’t pass it off as “just Dysautonomia” or “just POTS”.  Patients need to know what they are up against.  I wish I’d been forewarned and had some time to do the things I love to do, at least once more.  I’m still just really sad right now.  There are far more losses than I could begin to write here.  I’m tired of viewing every opportunity and invitation through the eyes of POTS, knowing so many things are not possible or too risky or too energy consuming to try.  I haven’t been able to even talk about it, but I can write.  It’s too raw and tears spill over whenever I try to talk.  

But I know I will eventually come out of it.  In the meantime I am still pushing through and trying to focus on the blessings.  5 years with Carrington this weekend!!  I am so sad that we didn’t adopt our 4^th child, but man, am I thankful we adopted her.  Even in the midst of my grief, I am not naïve to how good I’ve got it in the grand scheme of things.  There is always something to be thankful and give praise for, even if it comes with a lot more effort than usual.

Debbie Downer.  Over and out.