I'm Less Important Than Everyone Else

I have always felt like my needs/wants/desires have been less important than anyone else's.

No, really.

Kind of odd for an only child, wouldn't you say? (Only children are generally characterized as a bit on the "it's all about me" side.)

Marrying the man I did doesn't help.

Losing Myself

I feel like I'm losing who I had been becoming before my husband got so much sicker.

I was an insecure young adult. I met Mark when I was 20 years old and was that clingy girlfriend. In my defense, I had recently become visually impaired and had just left home. Also, my inner child.

Marriage, babies, my 30s, blogging, and some therapy later, I felt like I was finally coming into my own. I felt I had gotten to know myself pretty well. Just Jennifer (my former blog name). The Me I am aside from The Carer of All Things.

Besides WifeMomCaregiver, I am someone who likes to write a blog, make things with yarn, go for walks, watch TV, listen to books and hang out with friends.

How I Do It

I recently shared an article on Facebook about how caregivers aren't superheroes. It asserts that "superhero" isn't a good enough descriptor for a caregiver.

My aunt commented her agreement, and that she doesn't know how I do it.

I am so very appreciative to know that others think I'm doing a good job. Validation, you know?

But then I got to thinking about how to respond.

How do I do it?

A Spousal Caregiver's Battle Cry

You know how last week I said I don't want to talk about it? 'It' being chronic illness and caregiving.

Looking back, at least three other posts I've written since May have shown my struggle with this, both the actual circumstances and talking about them.

1. I Don't Think I'm Doing it Right
2. I Can't Blog...I Haz the Life
3. An Awful, Negative and Ranty Post

After reading last week's lame attempt at expressing myself, another spousal caregiver felt compelled to write to me on his own blog. In his letter, Paul was able to put into words ALL THE THINGS I have been mostly blocked from spilling myself.

I sat at the kitchen table, phone in my hand, slack-jawed, as I read Paul's letter. Tears sprang to my eyes as each and every sentence echoed and validated my own thoughts and feelings.

An Awful, Negative and Ranty Post

I'm afraid to write this and share it because of how I might be judged.

But I think I'm at a point where I don't care what anyone thinks about how I'm feeling. I don't think there's anything wrong with honesty and being real.

Oh the FEELINGS. All the FUCKING FEELINGS!

It's uncomfortable, sure, and everyone wishes the less-than-happy-and-positive feelings didn't exist.

But they do, dammit.

People feel bad sometimes.

I feel bad sometimes.

An Inventory of Feelings

Everything that has occurred over the past year with my husband's diabetes and dialysis complications has caused many changes that we are still grappling to deal with and adjust too.

It doesn't happen over night. Just when I think we might be getting the hang of it, we have a terrible day that feels like taking 10 steps backward.

That may not be true, but it feels that way.

Mark and I are both doing our very best to take things in stride. We can problem solve -- how he will get to and from dialysis or having grab bars strategically installed -- but there are many feelings that come with the physical challenges.

You can't really problem solve feelings. Except maybe to express them, get them off your chest.

Sometimes, though, someone's feelings hurt your feelings.

How I Really Feel About Valentine's Day

When my daughter doesn't like something she says it "can go die in a hole".

Not sure I feel quite that strongly about Valentine's Day, but close.

I haven't always been a V-Day poo-poo-er. Oh no, I I'm usually a hopeless hopeful romantic. When others would contend that couples shouldn't need a special day to express their love for each other, I would think they're just being difficult and contrary. Is there something wrong with buying your love a box of chocolates?

But this year, looking around at all the pink and red, heart-shaped, cutesy, frilly, fluffy sweet shit in every store is....kind of making me what to hurl.

I Promise

As part of adapting to the physical changes my husband has gone through in this last year, and how it changes some things for us as a family, we recently met with a social worker.

She asked several pretty personal questions about our relationship and how it is doing.

Where we stand.

Because oftentimes the significant other of someone with chronic illness decides to leave.

The social worker asked us, "How long have you been married?"

"16 years," I answered. In my head I always add, "Together for 20," because those first four years matter too.

The Caregiving Learning Curve

In the wake of my husband's most recent hospital stay, the wounds left to (try to) heal and his inability to walk, I had a moment when I thought, "Is this all that's left for us? For me?"

Like, is taking care of my husband, accompanying him to appointments, refilling his meds....all the things he needs these days, what my life is now? Am I much more of a caregiver than anything else?

This thought made me sad. For several reasons....

What about our marriage? Our friendship? Being a couple, in any sense of the word? I'm afraid that will all fall away....

I've never felt unfulfilled by "just" raising kids, so why does the thought of "just" taking care of my husband make me feel differently?

It's Not ALL About Me

A couple of weeks ago, right before my husband's recent hospital stay, we had an appointment with his vascular surgeon. He scheduled another procedure for Mark, an angiogram of his right leg, which he never actually ended up having....

But that's not really what I want to talk about.

After seeing the doctor and talking with him about the nasty sore Mark has on his right heel, and what it might mean if we can't get it to heal, that this is another thing, something changed for me.

It has been coming over time, with each new ordeal that crops up in Mark's chronic illness journey....

That he and I are on two SEPARATE paths. Two different journeys.

The View From Here: Blended Family Bliss

For the second to the last week of "The View From Here", I bring you a man.

Lance Burson is a writer living outside Atlanta, Georgia with his wife and 3 daughters.

He's a published author of 2 books, The Ballad Of Helene Troy and Soul To Body,

available on amazon.com for kindle and lulu.com in paperback.

He co-runs the politics and pop culture site, Lefty Pop - Suckers For Politics And Pop Culture

and blogs at My Blog Can Beat Up Your Blog.

__________

Blended Family Bliss

I'm terrible at taking compliments, but my favorite one is when people find out my wife and 3 daughters and I constitute a blended family and say "oh, wow, I could've sworn you guys had been together from the start."

Ask Jen: On Motherhood, Caregiving and Time Off

Reader Question

Asked by Peggy, a fan of the Dancing in the Rain Facebook page: How do you deal with being mom, wife, caretaker, etc, with little to no time for yourself?

My Answer

I saw this on Facebook several months ago:

To which one person replied, "Not if you are a mom!"

It kind of annoyed me.

I'm Having a Hard Time

This is going to be a completely selfish and self-serving post.

I haven't let on much to anyone, but I am having a really hard time lately.

Because my husband is having a really hard time.

The cumulative effect of all he's been through this year is weighing on us heavy right now.

No, there hasn't been any one BIG thing. It's been a bunch of small-ish (compared to, say, being in the ICU with a tube down his throat being told he was going to die) things.

You guys -- you lovely people who read my words here -- know this. You know this year has been all kinds of up and down (and upside down)for my family.

At this time, Mark feels like it's all just down.

He is so frustrated. Downright angry sometimes.

5 Things I Noticed During Our Kid Free Week

Being a mom is wonderful and honestly pretty much everything I hoped it would be.

Truly. I swear. No joke. I genuinely like my kids and think they're pretty cool.

They're not perfect. They whine and squabble and talk back. They don't want to do homework or eat veggies.

But -- and I know I don't even need to say this -- I love my children to the moon and back. And I know my husband feels the same way.

However.....there is absolutely a difference between having kids around vs. not.

First Comes Love

Boy and girl meet.

Flowers, candles and Zima woo.

Girl and boy decide to forge ahead together.

Arguing

“I wish you wouldn’t use absolutes,” I plead.

“Well, your tone of voice sucks,” he retorts.

Good Health Guilt

I'm guessing "good health guilt" is similar to survivor's guilt, only different.

I don't know. I think I made it up. A Google search revealed it doesn't seem to be a real thing.

I have good health guilt because of the stark contrast in how well I am compared to how unwell my husband is.

And lately? Twenty fourteen is proving to be The Year of One Thing After Another. Mark has to have his fistula checked out AGAIN this week because, after two surgeries and an infection, it is flowing slower than the dialysis folks would like it to.

Every time I bound up or down the stairs. Each day I head out for one of my walks. When I lift something heavy and move it without losing my balance.

I feel it.

How much TMI can a marriage handle?

In the beginning of a relationship we try to keep our bodily functions private so as not to come across as crude or unattractive in any way.

Somewhere down the line we get comfortable. Really comfortable.

We no longer close the door when using the toilet. We let farts go without giving it a second thought.

Maybe we'll say something like, "Heehee, oops, excuse me."

But then even the "excuse me"s stop. It turns into, "I can't help it!"s.

Men adjust their junk, women reposition their bras.

Scratching, picking, nose-blowing, pimple popping....coughing, sneezing, farting, peeing, pooping, bleeding (menstrual and otherwise)....vomiting!

Not to mention earwax, eye goobers, scabs, hairs and nail biting.

It's gross. Human beings are gross.

My husband, God love him, picks, bleeds and claims he cannot hold back a fart.

He'll explode or something.

And the bleeding! If for some reason Mark dies of suspicious circumstances and the authorities come into my home with Luminol, I'm going to prison.

For the record, if I wanted to murder my husband, I would have done it a long time ago. Lord knows I've had ample opportunity. Ahem.

When I was pregnant with our daughter Mark thought he would NOT be watching me give birth. He planned to stay up by my head.

He ended up watching, of course. And then proceeded to tell everyone who would listen that he had to get that image out of his head. Then he watched with our son too.

He's also a big baby about me talking about my period.

Oh he has no problem purchasing feminine products, but he does not want to know any details about cramps or flow.

It's TMI, he says.

Yet, his grossness is just another charming part of his sparkling personality.

Well I've decided that I'm no longer into sharing my private bodily happenings. Nope.

I've started closing the bathroom door every time I need to use the toilet. I don't discuss my period with Mark, and I try not to fart in the same room as anyone else.

I'm opting for a little more decorum in my marriage.

The pendulum is swinging the other way for me. Give me my privacy, dear. I'd be HAPPY to give you yours too!

What do you think?

How much TMI can a marriage take before you're just grossed out?

Slowly But Surely

I am nearly 40 years old. I have a little countdown widget over in the sidebar.

It wasn't until right around the time I was turning 39, that a switch finally flipped inside me.

You know the one.

It's the one that has to do with your self-esteem, having a pretty good idea of who you are and what matters to you, and feeling comfortable in your own skin. The one where, once finally switched on, lets you feel your self-worth, lets you know that you matter.

Yeah, that one.

I tell people all the time when describing my daughter that she'll get there, slowly but surely. I've always thought this has to do with having ADHD, that she's constantly getting distracted and is rarely in any great hurry to do anything.

But maybe it has nothing to do with ADHD. I don't have it, and never did, yet I am now thinking the same thing about myself.

I'll get there.....eventually.

Being that I'm one to ask why, I asked myself, "So Jen, why do you think it's taken you so long to feel good about yourself, and have a little more confidence?"

Light bulb!

I think it has to do with meeting my husband at only 20 years old.

Not that Mark has ever done anything to make me feel less than. He is a wonderful man, has loved me well for nearly half of my life. He is a great husband.

However.....

I think attaching myself to another person -- THE person -- at such a young age, made it more difficult for me to discover who I am as an individual.

Not only that, but all of the trauma we've endured together has served to make us each quite damaged in our own ways.

I would in no way take back anything about my relationship with my husband. I've said it before, and I'll say it until the day I die, Mark is the great love of my life. We met when we met; there's no changing that.

I'm just saying that I think when you become part of a couple -- and I didn't see it before now -- there is indeed a tradeoff. You get to go through life with someone you love and who loves you back, but maybe it then takes longer than it might if you were single, to find out who just YOU are.

I was such a control freak in the beginning with Mark. I had to be a part of everything he was involved in. I had to go to every single appointment and know and manage ALL THE THINGS. Mark isn't a control freak, so he let me. I think he also didn't mind the help.

Then I became a mother and had to let Mark take care of his own self more. Then lots of big, scary things happened to Mark and I was forced to see that there's nothing I can do about it. No amount of control freak will fix his health problems. I had to accept that I actually have no control.

As it turns out, learning that lesson was liberating. And then blogging. And then therapy. Oh, the things I've learned!

I found my way to a place -- fighting tooth and nail with myself the whole way -- where, even though I am still married and in love with my husband and he still has health problems....I'm still a mom, still have these people who need me and expect things of me....I am also ME. Jennifer. Jen. Jenni. Mrs. Dancing in the Rain.

It feels good. But man, it was slow!

I can't say I'm not a little disappointed in myself for letting it take so long. I also can't say I am suddenly devoid of insecurities. My eyes will always be a stumbling block for me. Regularly needing to ask others for help when Mark is in the hospital or something, will continue to give me a complex.

Nor am I claiming to have found the magic formula for attaining balance. That is something that each of us has to look for every day. It changes what it looks like every single day.

Perhaps this is a cautionary tale. Maybe what I'm trying to impart here is that no matter who or what are factors in our lives, we must still find a way to be who we are. To figure that out. To embrace it.

And if we can do that, even if it comes about slowly, surely it will.

Because of Chronic Illness

Warning: This is not going to be a happy blog post. But it is a necessary one. Because no matter whatever else I blog about, this is always in the background.

Lately it is in the forefront.

Now that we're past the middle of the month I feel I can safely say February 2014 will probably go down in history as one of the cruddiest and most stressful for Mark and I.

Technically, I suppose everything is really happening to Mark. Seems like everything that isn't a major medical crisis is afflicting him. But see, when you're married, the things that happen to your spouse, happen to you too.

Normally I feel like Mark is being a little dramatic when his attitude turns to thinking the world is out to get him or it seems like nothing will go right for him.

But this month? He has every right to feel that way.

The 3rd, 5th, 6th, 12th, 13th, 14th, and at least the morning of the 17th have all been shit days around here, plus dealing with all the shit the rest of the days.

We have both been worried, stressed, on edge, touchy, frustrated and snappy, but trying oh so hard not to be.

Valentine's Day was probably the worst day of all. Mark was in a great deal of pain from his fistula surgery, we were trying to figure out how to get some car repairs done and then we had to take a trip to the ER because we were worried about enough blood flow getting to Mark's hand.

We argued and I cried. My poor dad had to deal with my scary female emotions when he took me to get a prescription for Mark, and stupid cat food.

I felt like a schmuck of a mom because we didn't get any sort of Valentine's treats for the kids, had to order them a pizza and leave for the ER. I kept calling them to apologize and say I love you over and over again.

My husband is a very unhappy camper right now and I'm having a hard time holding it all together for us both. I'm trying so hard to be kind, considerate and helpful to him, but sometimes he bites my head off and then I feel defeated.

I tell you this because having a chronic illness and loving someone who has a chronic illness is sometimes really damn hard. And I'm just completely unable to sugar coat it.

I can put on a brave face till the cows come home. Mark can be a super trooper all his life. But sometimes it just plain sucks.

Sometimes it's miserable.

And sometimes you really are justified in feeling like the sky is falling, that nothing will ever go right for you again, that all the love you feel for someone doesn't make a damn bit of difference and you just want to crawl under a rock.

This is not melodrama. This is real.

This is part of who I and we are because of chronic illness.