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There’s a Monster in the House- CRPS Even Affects A Caregiver

Published on October 3, 2017 under Guest Blogger for RSDSA

Stephanie and Valerie are the perfect example of how a caregiver can be affected by CRPS tooBy Guest Blogger Stephanie Umlor

While we live with CRPS daily and can let it take over our thoughts, we often don’t realize how our loved ones are affected. This is a reminder that every caregiver and loved one can be affected by this CRPS “monster” as well.

A reality of anger, hurt, and pain rages havoc on our bodies and minds CRPS is a
methodical monster. Convincing us that we are helpless, worthless, a burden, as well as
unable to to love someone the same way as we did before. Leaving us in an
atmosphere so overwhelming we might as well stay. I call this “ CRPS Pain Limbo;” I
know most medical professionals refer to it as “ The 5 Stages of Grief.” I think with
CRPS sufferers we tend to stay in the anger and bargaining stage more than any other
one that’s why I call it CRPS pain limbo.

What happens if one day you stop and wonder if maybe my spouse may feel the
same as I do? Impossible right? Not at all, CRPS may not impact the ones we love with
constant pain or fatigue but it does impact them psychologically. They feel Helpless,
Worthless, maybe as a burden, and they feel isolated or alone which are a lot of the
same feelings we feel. I realized this year from a situation due to CRPS how my wife(
Valarie) was feeling as devastated as I had been through the last 7 years. I have
accepted that CRPS is a part of me and the perception I believed was reality became
an obstacle I had to go through to be where I am now.

Reality is a hard pill to swallow and I had my dose from Vascular test results that
were given to me June of this year. When the Vascular specialist came into the room to
talk to me I figured he would be like the rest of every doctor, I will admit it he wasn’t.
When he first started talking he sounded like Charlie Brown’s teacher speaking, then it
started to make sense he was telling me I have bilateral Peripheral Artery
Disease(PAD)! He continued by telling me that it was completely neurological and there
was nothing he could do, but then he said,” This is CRPS at it’s finest! I mean This is
what CRPS can do in its truest form.” I know most people probably took that as a crude
statement, when I told Valarie she did but I didn’t. He explained that he had extreme
concerns about possible wounds that could develop on my feet and not heal which
would or could cause an amputation. I let it sink in and then said, “ So I could possibly
lose a toe or my foot, that’s what you’re saying?” The look on his face was unforgettable
along with the words that followed that look, “ That would not be the case in your
situation! Due to the constriction in your legs the amputation would happen either right
below the knee or above it.” My heart sank and continued sinking as I was heading back
to my car. I got into my car thinking I was going to throw but the end result was me
bursting into tears and a quick phone call to my wife.

When Valarie got home from work, I met her at the back door; her eyes along with the
way she wrapped her arms around explained everything I have ever thought or
wondered. Still to this day I have no idea why or how the so called CRPS pain limbo
melted away to let me see how she was feeling through all of this. For many years I
never could understand why my wife was so quiet about certain aspects of CRPS, then
becoming frustrated. I imagined it was because I wasn’t who I use to be physically and I
was just a burden in her life now, how wrong I was! In that split moment of that hug all of
those times flipped through my mind like a photo album and then I said, “ I understand
now and I am sorry.” I went on to explain that during the years I never contemplated
how she was handling everything. She told me she, too, felt helpless not being able to
take the pain away, she felt worthless because I always refused her help, she never
wanted to say was in pain due to how could it even compare to what I feel on a daily
basis, and she felt alone because she wanted to understand how I felt but I just wouldn’t
let her in.

Like I said earlier reality is a hard pill to swallow and CRPS is an intelligent monster
causing catastrophic effects to the ones we love and the ones suffering from painful
sensations. I would definitely go through it all again to be able to feel the calming relief I
felt that day and continue to feel. Learning that communication, involving the people
closest to you, and realizing my wife may not be able to fully understand my pain but
she can relate to the emotions endured with CRPS has created a very stress free life.I
feel strongly that if a CRPS sufferer feels alone and misunderstood their spouse,
partner, or girlfriend/boyfriend [or other caregiver] probably feels the same way. So, please try to
communicate with them because they are our biggest cheerleaders .

1 Comment

  1. Sue

    Hello
    It is Fri 7/16/2021. I was looking for the support group I had joined along time ago and came across this “ spot on” assembly of words that made complete sense of how I have felt & feel. “ There is a Monster in the House”- CRPS even affects the caregivers.
    That absolutely summarized feels when you can feel “ imprissioned” and owned by CRPS , and I know I battle every day having “ my monster” – aka – CRPS for 21 years , just 6 months after I walked down the isle to marry who I thought , was my best friend & soul mate , would be there until the end of time.
    Total we were together 31 years, last August 2020 , during Covid , two days after a tornado ripped through our neighborhood, loosing a lot of items that mean nothing in the big picture, no power for weeks in August 2020 , he served me with divorce papers. After 31 years , child graduating high school and off to college of choice – he was done. Never really took an interest to become familiar with “ the monster” just adapted to it like it was invisible.
    That’s what my monster is anyway- invisible.
    Except it’s mean, unfair, unforgiving, likes making daily tasks difficult, brings emptiness & loss. It tries to control every aspect of you and your caregiver, family & your entire lifestyle. I do my best to give it the fight of its existence with me. In a battle- you do need backup & support, with numbers comes strength. And in battle, there is loss. If you have someone who is by your side , give them a hug or a pat on the back. You want them there for the long haul, because just as you deal with the physical, emotional and mental, they endure watching you hurt and can’t make it go away. They have pain too. The more people who support and include and communicate to others & let them in this tumultuous world we were brought into (not by choice), communication, support and more voices with CRPS get heard. Make those voices ECHO … one day all of us will be rid of “ our monsters” until then stay strong & brave. This is another unforeseen situation that CRPS tossed my way , it just didn’t knock me down. Take care all.

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