One Day

Almost a month since I last posted.  I have excuses, but they're still useless.  My little sister got married Saturday to the guy I would have picked for her.  She was a stunning bride of course and I was so honored to be asked to be a part of their day.  I had so much fun (too much fun if you would've asked me the next day) that I was actually a little bummed it was all over with. 

As a caregiver, we become so wrapped up in that role that it quickly becomes our identity.  For me, it is even greater of a struggle because I find myself neglecting my own needs as an amputee patient.  And my mental health needs as well because let's face it, that is the easiest thing to dismiss for us, right? 

Mental health will forever be a subject I am completely engrossed in.  It is such a major part of every single facet and part of us and everything we are and we do.  And it is such an important part of our physiology.  Why do we go to the doctor for help when we are injured or have strep, but refuse to get help when our psyche is not up to par? Why do we never question someone getting treated for cancer or epilepsy, but we silently put walls up when we hear they are seeking treatment for mental health reasons?

I understand that it's actually a two-fold answer.  First and obviously there is the stigma.  But for me, it isn't about the stigma.  It's much like a co-dependent substance relationship.  I know that for myself, to keep me mentally fit and at my best, I have to be very guarded with who I allow into my smallest social circle.  You've likely heard it said that if you want to become rich, surround yourself with rich people.  The same is true for mental health.  You can't improve your mental health if you are only ever around those who are not mentally healthy themselves.  It's just like a drug addict. It's SO EASY to stay there. 

I was bummed the wedding was over because I realized now I have nothing to hide behind in my own mind anymore.  I have nothing to preoccupy or distract me from something that is totally unrelated to my own family and our own struggles. I have nothing that is just mine, that I don't have to feel guilty about leaving them to deal with without me. I am feeling lost in the caregiver role.  I feel like it is the driving force behind everything I am and do now. I feel like a part of who I am as an individual, slips away with each wheelchair load, or each question. And it also feels daunting.  When I was the patient and he was the caregiver, we knew this was not going to be our life forever. We knew there was a change.  I would die and he would be able to move on.  Or I would live and get better and we would be able to move on.  But with him, we don't know what the future could be.  And that scares me.

He has now received four doses of weekly steroids.  He thinks his legs are getting stronger and will try to stand.  I remind him gently (sometimes, others not so gently) that is how he has fallen almost every single time - trusting his body when he knew it wasn't trustworthy.  He still has not regained any sensation in his right side and sometimes it frightens me how little he can control his right side.  His left side often and randomly feels "weird, but not the way the right side does." While the apparent strength in his legs does give us hope, even he freely admits he feels a bigger struggle cognitively and mentally.  I can see it wearing on him physically now too.  His eyes don't track together, he looks confused at times and I wonder if he knows what we are actually doing and if he is frightened about his confusion but is also too proud to ask me any questions.  His mood swings have been a lot to handle lately and they definitely take their toll on us all, him included.  I find the well of strength I used to dig down to refill from is quickly depleting.

I still struggle with balance.  In every way: walking on my own, 😆 being caregiver vs wife.  Being caregiver vs mom.  Being caregiver vs patient.  Being caregiver and working or "taking care of myself".  I have always prided myself on the load I can carry and my pain tolerance, both physically and emotionally.  But tonight, tonight I feel tired. Tonight I wear my frustration on my sleeve like an ugly reminder of what our daily life has become.  I chastise myself for being angry and not being stronger.  For not keeping it together better and the house in order more.  But a very new and very dear resource and friend who has literally been on this same journey told me I need to give myself permission.  Permission to mourn the loss of my marriage and my husband as I knew them, even though he is still physically here.  And that concept alone will take time to absorb.  In the meantime, I do what everyone else does - one day at a time.

How I haven't broke (yet)

I am often told, "you're so strong".  But guess what? I feel anything but. I'll share some of my "secrets" to how I keep it together as much as I do. Which let's be real honest, some days is not very much at all.  I mean some days I have laundry done, dishes done, supper ready, kids and hubby cleaned, dogs played with and other days I keep finding pretzels all over my floor, I don't know what that is on my shirt, and there's toilet paper garland at about the 2 1/2 foot eye level because she thinks it's just SO fun! (She's so lucky she's cute.)

The biggest thing I can say and will always say is a mindset.  This is by no means easy.  It takes determination and constant awareness and honesty with yourself about where you are at mentally and what you need to do better.  And you'll never stop doing this.  It's a daily, sometimes hourly thing for me.  But the more you do it, the easier it becomes.  To start, read some self-help/improvement books.  There are several.  And most of the ones I love are geared towards direct sales, but can totally be applied to life in general.  Some of my top picks are:

    
(Side Note - those are affiliate links. Which means if you buy from clicking here, and then purchase as normal, I actually get a percentage of the purchase from Amazon.  So that's awesome too!)

Alright, so you got the books, now you have to read them.  Not a reader? Most if not all of them are available in an audio version or Kindle if you are techy. I prefer a physical book.  Nothing beats feeling a book in your hand and the smell of new pages! But there are no excuses here - read the books! Can't afford them, borrow from a friend or hit up your library.  (We still have those!!)

Which leads right into the next secret, accountability. You have to find a way to be truly accountable.  This means total honesty, even in the ugly parts. So if you have a bad day, slip on your diet, don't do something you said you would, you have to own it.  It's totally liberating. You are human. You will slip up.  Just the way it is. So however you are going to be accountable, a close friend, a journal, --whatever it is to you, be honest about it.

Next secret, Embrace it all. We all focus on "The Big Picture" or only the highlights and good times.  When in reality, the little things are just as important if not more.  Life is short. And nothing is promised except taxes and death.  So you have to find a way to find joy in the mundane.  And it starts by unplugging for a period of time. Trust me, just try it, for a while.

Which you guessed it, my next "tip" - don't try something and give up.  Giving up will always be the easier way. But nothing changes unless something changes.  Dr. Phil says you don't just try something for 2 weeks or 30 days.  If you really want to change, and it's really important to you, you try it until.  Until you reach your goal. Until you change your ways.  Whatever it is you're working on.

Next - take life as it comes. All you REALLY have to deal with is today.  No matter what.  Bill is due next week and you have no money? Loved one is terminal? You have a big surgery coming up? None of that is happening today.  So today, you do today.  Make small steps today to improve today.  And then tomorrow.  And work from there. 

And about today, today is 24 hours. And a lot can change in 24 hours.  So if 24 hours is too much and too hard to process and handle.  Then take 12 hours at a time.  Can't do that either? That's ok, because you're being honest! So then take one hour.  Sit down and honestly say, what do I need to do THIS hour to survive this? And then do that. Maybe that is talking to a trusted friend.  Maybe it's crying.  Maybe it is sleeping.  Sometimes, truly and physically surviving is all that we are capable in that short time frame, and sometimes, that's ok.  After you survive that hour, ask yourself what you need to survive the next hour. And before you know it, you will have done what you think you can not.

My last "secret" is to find the fun.  There is always joy and fun in everyday life.  And if you can't find some, make some. Because I'm telling you, no matter what is going on in your life you have SO many reasons to still smile.  And if you don't think you do, I honestly implore you to find some help.  Because the dark hole you are standing next to is a deep one that is hard to crawl out of alone. Go take a silly snap chat picture. Go sit at a park and listen to the children playing.  Sit in the grass while you feel the sunshine warm your skin.  Find some joy!

We often forget to deal with what's in front of us first.  We can't just go run a marathon tonight.  We have to train and learn how to run a marathon, even though we all know how to physically run.  Life is no different.  Train to be the best you for life.  And don't stop training.

Mom, you're doing just fine

"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love." - Washington Irving

If you listen to me long enough, you'll know quotes are big for me. And this one plays in my mind like a broken record. Especially today. Growing up things were not always as easy or nice as they could and should have been. I felt like tears and crying were showing whatever the evil was, that it was winning. So around age 10, I just started to do everything I could mentally to never cry. I thought crying was perceived as a weakness. And I HATE feeling weak.

Now that I'm an adult and I know better, I still "can't" cry. I am not sure if this will come out right, but my tears are internal. My pain is inside and doesn't come out in a physical manner that others can see, like tears. It comes out in other ways, frustration, mental fatigue, severe back pain (like muscle knots and tension) I wish it came out in tears because we all need to release our emotions. All of them. Think about it. We smile when we are content, laugh when we are happy, yell when we are angry, scream when we are in pain (usually). Even an infant knows to express their emotions.

Today was a #MomFail! I had 3 alarms set because I had 3 things to do this AM. But Emma told me that she didn't need a ride because Grandma was giving her one. So my brain apparently heard, 'you now have absolutely nothing to do today but sleep in and miss every single thing you needed to get people too.' Olivia didn't get to Plainview with her sister, despite asking me if she could. Jeremiah was 40 minutes late for infusion and I forgot my wallet at home, of course, so didn't get milk for cereal at noon because that's just how we roll around here. I left the house already behind for a very important appointment with 3 kids crying, lots of swearing and Jeremiah thinking "he's fine, he can do it himself" I told him the stubborn thing is getting old and just not the time. To which he replies, "it's not my fault it comes with the last name". At least his wit is still intact 😉

My "tears" today were for feeling like I let my family down, again. For the 89.00 gas tank fill. (Gas is just so expensive! Why can't they make a car run on my family's gas, because we would be all set if they could....) For the lady at Bennett's (the grocery store in town) - I don't know who it was, Olivia wasn't sure, who paid for the kids donuts. And whoever put the $450.00 in my People's Checking. I'm 98% sure I know who you are, but the bank didn't identify you. You don't know how you helped. You kept my insurance paid and that's crucial right now for obvious reasons, and my cell phone bill paid - which again, is our lifeline right now. These are blessings, my friends. Despite all of our trials these days, we are still, so. very. blessed.

My message today is for all of you mom's out there. I feel you. You are wondering if you are doing it right. If you are a "good mom" If you yell too much. If you buy too much. If they love you some days... I'm here to tell you if you think any of those things, then chances are HIGH you are "doing it right". It's like I tell my Pampered Chef Team, if you are worried you are being too pushy, then you aren't. The salesman who is actually too pushy, never questions if they are. It's the same for being a mom. All any of us can ever do, is our very best. As long as you are honestly giving it the best effort you can, you're good. Each day, try to be better than the day before. Because forward progress of even the smallest amount, is still better than no progress at all. So if you are aware of being a good mom, then you are. 💓 And, it's ok to cry!

Getting all Dr Phil on ya

I'm a HUGE Dr. Phil fan.  And if you listen to his messages, you might be too.  Some of my favorites:
- "we don't burden children with adult issues.  They can't change it, they can't fix it and it makes them feel helpless" Plus, it scares the hell out of them.
- "No matter how flat you make a pancake, it still has two sides." just like everything in life.  And the truth is usually somewhere in the middle.
- "The best predictor of future behavior is, past behavior." want a new future predictor? Change your behaviors and over time, you have a new past, that predicts the future behavior you want.
And my favorite -- "In life, you generate the results you think you deserve"

Today I have an overwhelming urge to talk about self-talk.  What we tell ourselves.  Because you might think it doesn't matter.  You might think no one else knows the awful things you tell yourself.  You might think you hide it amazingly well.  And you may.  But you don't really.  Someone in your life, maybe your spouse or child, maybe the gas store attendant - but someone knows.  If you don't love yourself, how can you expect anyone else to?

Many people who suffer from depression or anxiety are often told, 'just get over it' or 'just be happy'.  But what mentally healthy people do not understand, it isn't a choice.  They don't choose depression.  Trust me, they damn sure do not choose anxiety.  Anxiety attacks, real ones, big ones, yeah they feel like you're dying (I'd imagine) Mine are similar to what I think would happen if a stroke and a heart attack had a crack baby.  That's not funny, but it is legit physically paralyzing. My chest is so tight I can't take a breath, and because it's tight and I'm in full on panic mode, I can't speak.  But even if I could, it wouldn't much matter - what should I say? I'm just having a panic attack.  That by the way, I didn't "bring on myself" True panic attacks usually just happen.  It's not because your thoughts forced it to happen.  (although your thoughts and stress levels surely do not help anything here)

That all being said, what I want EVERYONE to understand is that the negative self-talk is so crucial to your overall life, yes, overall - not just mental health, but your physical health, your entire life as a whole, including what you do.  Hear me out here.  If I tell myself, "OMG, I'm so poor, I can't afford anything!" I will be poor and not able to afford anything.  I will subconsciously make choices that keep me in that state.  I know it sounds crazy. But if I tell myself, "I'm a Pampered Chef ROCKSTAR and I will reach all of my goals." and "I have plenty of money for all the things I need in life" I will start to see things differently. Which will change the choices I make and thus create a different result that works toward the one I want.

We have always told our kids, "instead of worrying about what you DON'T have, try being thankful for what you do have." My kids can't "compare" to many of the kids in their school.  But you bet your ass they look pretty freaking amazing next to the kid in the shelter.  Or the kid who has to walk to a lake for water. Life is really about perspective.  And how you see things will affect every single area of your life.  It's been proven. There have been MANY medical studies that have proven that what I'm saying is true.  That your mental health, and your attitude or perspective about things will domino affect nearly every single other thing in your path.

To get you started, and I hated this activity at first too - write down 10 self-positive affirmations.  When I was down and out, I actually created a visual for myself because that's how I learn. (and one of them is listed twice on purpose ;) ) I posted it in my office, in my planner, it became my wallpaper on my ipad and my phone.  I sent it to people that I trusted and wanted to hold me accountable to myself to be more positive! I'll show you mine.  But if you need ideas for what your 10 things are, google ideas.  Look on Pinterest. There are so many wonderful ideas to get you started! Then read that list.  Over and over. Read it so many times you can recite it word for word at any time.  And then once you can do that, keep repeating them to yourself. While you're driving. While you're in the shower. Or trying to fall asleep.  Repeat them while you're smiling and nodding at pre-teen drama - (just kidding, I always listen intently to my children.) You NEED to make those 10 positive things automatic thoughts. Trust me.

I encourage everyone, mental health aside, to watch these Dr. Phil clips where he explains the science behind this and why it isn't a 'choice'. (Turn up your speakers, he was sick that day!) Click Here!

After you watch that one, watch this one on how he explains how to eliminate negative self-talk

Let's get REALLY real for a bit...

As news of Jeremiah's illness has spread, I am getting so many messages asking what can people do to help, and how am I doing.  Well, to help, host a virtual show with me (100% Shameless plug there! But seriously, I'm a hoot! And you get free stuff. I mean, come on!)  But pray. Just pray for him. For our kids.  We joke because that's how we deal. But in all honesty, we are scared.  We were told a few years ago that we needed to prepare for the fact that eventually, his MS would progress and not stop.  He wouldn't recover and it wouldn't really be managed like we were used to.

That being said, let's discuss how I'm actually doing. I don't try to hide this side per say, I just learned a long time ago that I can not keep my mental health where I need it to be if I stay in the red zone too long.  If I stay in the bad, negative, mindset, I can't move forward, be optimistic or hopeful or productive for my family.  So I don't talk about it so as a way to stay mentally strong and fit.

But sometimes we need to talk about it.  I have struggled my entire life with depression and anxiety.  I am on medication for it.  And on my medication, I function very well and am very mentally strong and able.  I know from experience I can not function without my medication at the level of wife and mom and human being in society that I want to function at.  And that's ok.  Other people have strong feelings against medication, but that isn't up to me or anyone else.  We all have to do whatever we feel is best for us.  Notice I didn't say right.  I don't think there is a right and wrong. Every person and situation is unique.

So how am I doing? Not well.  I take my medication so I can get through the day. Which is exactly the answer to your next question, how do we do it?  We do it one day at a time.  And when that is too much, it's one hour at a time.  Do what you have to, to make it to the next hour.  One hour at a time.  And before you know it, you've survived the day you thought you just couldn't.

My mental state is being rocked on an hourly basis because I am afraid.  I am scared that this is the attack the doctors have been telling us to prepare for.  That at 34 years old I am watching my incredible husband deteriorate. His cognitive ability is being attacked hard.  He can't stay awake for more than 20 or 30 minutes without needing a nap and falls asleep randomly.  He stays in bed usually until noon, when he gets up to move to the living room.  He usually goes back into bed around 1 or 2 for a nap.  Comes out for supper and asks to go to bed around 8.  He struggles so much in so many ways.

I tell you this not for your pity because we can't do anything with that. I tell you for your awareness.  The things we think are hard in life, are generally not the things that are actually hard in life.  Getting our card fixed, getting our bank account out of the red, finding a new job that pays more - these are not the hard things.  The hard things are things you simply can not do a damn thing about.  Watching a loved one suffer from an illness, not being able to shield your children from the hurts,  these are life's actual hard things.  But what's that saying, without the storms, we wouldn't see the rainbows?

I borrowed this obviously real photo without permission from here.  Just keeping it real.