Saturday, August 17, 2013

When The Caregiver Is Sick Too: Living the "In Sickness" Marriage Vows

When my husband and I married a little over 10 years ago I was on disability for a back injury,
ME/CFIDS/Fibromyalgia and had been for 7 years. My husband married me knowing whatever he could really “know” in the short time we were dating, but he chose to ask me to marry him and I accepted. We both had been divorced and not married for 13 years at the time. He had been in several serious relationships. I had been in just one. Either way…there we were married and I discovered that being examined when I am at my sickest was very, very difficult for the first couple of years. I had kept that pain and struggle behind closed doors all those years, so having someone see what actually happened to me when my illness took a downturn was hard for me to adjust to. I did finally begin to allow him in to nurture and comfort me when I was at my extremes, but only after 3 years of being married. And by the 7th year his status as my caregiver was firmly in place.

He worked fulltime so I had all day alone on weekdays to regroup and retreat. We each had our own car so I was able to drive anywhere I needed or wanted to go. I’m not going to say I didn’t struggle but his contribution to helping me when I was at my sickest did help me and also firmly cemented those feelings of love, gratitude and respect for him deep in my heart.

And then it happened. An RV accident, where we rolled our motor home into back of our Prius on a steep hill in near the Oregon coast.  He was just stepping out the side door when I yelled that we were rolling.  In an act of pure panic and ridiculousness I tried to stop the rolling Beast by handing onto the sideview mirror.  That of course didn't work.  Walt quickly turned and jumped back in to try to get to the brake to stop the rolling behemoth but he didn't make it in time.  As the front of the motorhome smashed into the back of the Prius he was standing up with his foot almost to the brake.  He suffered severe whiplash and neck trauma from the impact, which resulted in surgery to put two artificial disks in his neck.

This, in addition to the stress that our abrupt move to fulltime life on the road, coupled with an exacerbation of my illness (also related to stress), triggered an auto-immune illness for him too.  The same diagnosis as I have Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).  My illness has never been acknowleged by the medical community to be contagious but it is actually quite common for more than one person in a family unit to have the illness.

The trauma from the accident and his fight to stay healthy and awake would eventually lead to him needing to retire on disability. He lost his lucrative computer programming job and now is severely compromised due to his illness and pain. I also suffered a severe and slow healing knee injury just as he was transitioning from working and our car was reposessed.  We had tried every way we could think of to refinance or sell the remaining Prius but we were upside down on the payoff so we had to let it go.  We were without wheels for almost two months.

 He has struggled, as I did and actually still do - even after 18 years, with the withdrawals of not being able to work.  This process is not for the weak hearted as we have both found our very identify and self worth tied inextricably tied to our work.  His challenges with fear and anger have been exquisitely hard on our marriage and the organization and clean factors in our household.  His self worth had so plummeted that he applied an almost daily attempt to sabotauge the marriage.  Because I had been through what he is going through I was able to see these attempts for what they were - an attempt at a geographical/relationship cure for the pain.  For the last 18 months I have carried our marriage by myself.  That has been a heavy weight.  My ability to carry it was not complete or perfect but somehow we seem to have made it through the toughest part.

In addition to his illness I went through menopause, lost my mother to a stroke, tore my superior quad tendon on my right knee - rare and slow to heal injury.  And my CFIDS didn't go anywhere - except for worsening.

We do okay with the basics when one or the other is having a good day. But if both of us are down for more than one day the management of our empty nester life falls apart. I describe it as feeling like we are walking along, walking along, whistling – things are good. Things are okay. And then I randomly fall in hole which I then have to “choose” to climb out of. And the climbing out again and again is excruciating.  That is my process.  I'm able to be more cognitive about it because I've been going through that process repeatedly for 18 years.  Deciding to climb out of the hole is much easier now that there is general recognition that I have a physical illness rather than the previous belief that it was all in my head.

I’m excruciatingly sad for my husband that he is SO ill. I would not wish this illness on my worst enemy and yet here the man I love beyond measure has somehow acquired it as well. And I’m sad I can’t be consistent to help care for him when he’s not doing well, the way he was able to help me for all those years. Or likewise. I’m on my own mostly with my own illness now. The bills, meals, the yard, cleaning - it all just stops in its tracks when we are both sick and when we raise our heads up out of the goo – the house is in piles and shambles. So we have to literally “dig out” to get things back to a functional order.

Three things we have learned that might help people who are facing these same challenges:
1) When you’re sick or not feeling well communicate with your partner about exactly how you're feeling. Don’t expect them to read your mind and don’t take it for granted they will be there. If they are feeling well enough they will be there for you, but otherwise, not so much.
2) Take care of yourself. Manage your illness in a responsible, adult way.  It is especially important to avoid taking advantage of your partner's support and to avoid playing the victim role. And if you take any meds that affect your mood, clarity, memory, etc then retreat while they are working and let your partner know that you are retreating and why.
3) Being this sick causes SO, SO much loss and emotional pain in addition to the physical part.  This will trigger feelings of fear and anger. It is hard to get some space from your partner when you are both sick but they are not the “cause” and they need you to work on your fear and anger with a neutral person so that you can each be in your living space together to recuperate.  It is very easy to project these feelings onto your partner even if they aren't the source, just because they are near.  Unexamined fear can lead to mean spiritued actions and anger projected at the your partner just adds to both of your illnesses.

I will mostly likely be writing more on this subject just because there seems to be so little support in place for people in their 50′s.  We are in the no-man's land of support.

Today we will be paying a young man to come over and help us put mulch down.  He mows the lawn when I am not up to it.  We are counting our pennies so we have to prioritize what we have him do.

Feeling SO, SO grateful for my husband today.

Thanks for stopping by!

Peace be with you and all that jazz.

Copyright (c) – 2013 – Chardale Irvine. All rights reserved.

Saturday, August 3, 2013

Why I Always Click It - A Seatbelt Parable

Years ago, when I was living in Ogden Utah, married to my first husband with three toddlers, our lives and perspective on seat belts would change one day with a knock on the door.

I opened the door to find two of our friends standing there, a couple married just a few years. They were two people blessed with beauty - a mix of ski bum and beach bum - blonde, blue eyed - model types.

It was odd to find them at our door. We'd known them socially, as we travelled in the same circles, but they had never been to the house. But there they were - so I asked them in.

They were quick to let us know they were on a "crusade' to talk to people about seat belts. Nine months earlier they had been driving home at night after a movie. It was dark. They were in their neighborhood so were going about 25 miles per hour when the car hit a manhole that the city workers had failed to put the cover back. It was like hitting a solid brick wall.

Neither was wearing seatbelts and both had their faces thrown into the dash causing major facial damage.

Nine months later they stood there. After multiple surgeries they were back in life. She was nearly finished but he faced multiple other surgeries to piece his facial structure back together.

And they just wanted to remind their friends of how crucial the simple act of clicking that seatbelt can be.

It was a turning point. No more trips were ever taken without a seatbelt.

Here is an even better and more current illustration of this concept:

I've heard recently that seatbelt usage is up to 80% now.  This is amazing! And yet I still run into people who are adamant about not using them and insistent on explaining why. And then I gently tell them my story.  I don't know if it ever changed anything for anyone other than myself and my family but I still feel a need to tell it sometimes, humbly and with gratitude because really, regarding my Odgen friends' experience, there but for the grace of God go I.

Peace be with you and all that jazz!

Copyright (c) 2013 - Chardale Irvine. All rights reserved.