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 4th 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 4th 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.
