Sunday, October 15, 2017

Chronic illness and the loneliness it creates

This post is one that I have felt needed to be written for a long time. But I have avoided writing it for a number of reasons. I won't go into the why nots, but I will go into the reasons I feel like it needed to be written. To start the "whys," I will explain why I write a blog. There are 2 main reasons I blog, the first is rather selfish - it is therapeutic to me. I can't explain how or why, but it is. The second reason is really 2 fold - 1) it may help others by reading it 2) it may help others to help me. This will likely be a longer post that usual. You've been warned.

It may seem to odd to people that someone who is has been happily married for almost 10 years and has a child could ever feel lonely. Perhaps someone reading this is currently or has gone through a similar situation where they have a chronically, seriously ill spouse. If you are or have been in that situation and never felt lonely, I commend you and ask for your secret. If you are someone who is and has been in that situation and yourself has felt or is feeling lonely, thank you for understanding me! To me, it is a lot like experiencing depression from the inside v. the outside. I never really understood depression myself until I started to experience it.

Trying to explain either of these things to describe what it feels like to be depressed would be like trying to explain the taste of salt to someone. "Is it bitter? Well, not exactly. Is it sweet? Well, no, but it brings out the sweetness in things. Is it sour? Not exactly...." Trying to explain the loneliness, helplessness and overall sadness that accompanies us caregivers for chronically ill spouses and be a bit like that to explain. But I will make me best attempt here.

How does one get off writing about their own struggles with a sick spouse when the spouse is the one who is struggling? How dare I play the pity card when I'm still healthy and strong!?

Those are fair questions. And, to be honest, those are part of the reason I have been hesitant to write this. But to answer them both as best I can:

  1. I feel terrible for even feeling bad for myself when everyday Ariana just feels worse than the last. She'll be better for a day or 2 and then right back to where she began. But, while my struggles aren't the sames as hers, it is still a struggle for me. Try to watch someone you love be sick everyday for 5 years and not let it get to you too.
  2. Not all illness is visible. And sure, generally speaking, I'm pretty healthy. But I wouldn't say I'm strong, at least anymore. I used to think I was a pretty strong person, both physically and emotionally. But I think I've been trying to be strong for too long. Sure, you cross me too many times and I'll still break your legs; but the internal pain and weakness is deep and it's strong.
I have never once claimed to be an easy person to live with; I guarantee I'm not, as any of my college roommates or mission companions can attest to. And I don't doubt that has exacerbated Ariana's condition. I try every day to be better than I was the day before and 9 times out of 10, I fail miserbaly. But I look back and photos of us dating, or our engagement or wedding photos and I remember how happy we were. We aren't that happy anymore. Any young couple understands that marriage is hard, having kids makes it even harder, well then add a chronic illness to the mix. We don't go on dates. We can't make big plans to go anywhere because we never know if she will be feeling up to it (and, long car rides are horrible for her). We can't be very affectionate like old times because she just feel terrible, all the time; she is never comfortable and trying to cuddle or kiss can be excruciating because it hurts to move, it hurts to sit, it hurts to stand, it hurts to lie down.

Ariana has been dealing with my depression for the last few years and I may be starting to understand a little bit of what that feels like for her. I can try to do everything I can to help her, make her comfortable, help he relax. But I can only do so much, and in the end, she still feels like crap. What makes it worse is that it absolutely breaks my heart to see someone who deserves nothing more than to be healthy, strong and happy feel so miserable. This couldn't happen to a sweeter, kinder, better person. I think of myself and wonder why I'm not being punished for all my faults, and my shortcomings, and my failures. Why is she being punished when she is about as faultless a person as I have ever met?

I will never forget coming home a few months ago and having to listen to her crying out in pain that just wouldn't subside. Lexi was hiding out in her room crying and Ariana was lying down in the front room screaming and crying. I called an ambulance because I didn't know what else to do. She just needed to not be in so much pain. This happened again a few days later, luckily, this time I was home. Lexi just kept telling me "I want Grandma!" We are blessed to have one grandma close enough that she was able to come get Lexi while we once again rushed Ariana to the Emergency Room. I've never thought I'd have to hear the person I love more than anything in the world say that she is just done. She didn't care what happened from this point, she just needed to be done- done with the pain, done with the constant nausea, done with having her daughter standing outside the bathroom door just bawling because momma is throwing up again. She was done with it all. There was nothing I could to help her. I had to stay strong for her, and for Lexi. But the 2 worse sounds in the world are: hearing your child crying from getting hurt, and hearing your wife crying from pain that won't stop. And Ariana is a way stronger person than I am. And she has a way higher pain tolerance (what woman doesn't?). 

I know a lot of ridiculously strong people (those who remember my brother know that there wasn't a weak muscle in that guy). But everyone has a breaking point. I don't care who you or whether your strength is physically, mental, emotion, spiritual or whatever - we all at some point crack. Sometimes we crack from trying to be strong for too long. I try to in control of my emotions and pretty level-headed, but turn on a Nicholas Sparks movie and that all goes out the window (which is why, ever since "The Notebook," movies based on Nicholas Sparks' books are no longer allowed in our house).

I am not one to ever give up. I know I can do hard things. I'm not very talented, so there a many things I attempt to do (namely sports) that I should've given up on, but I don't give up. It's just not something I do. I blame this on my dad. And I try my damndest to do everything. But I can't do it all, try as I might. I commend single parents or really anyone who can manage all the demands on their time. I try to work, go to school, serve on non-profit boards, stay involved in the political community, take care of Lexi, keep the house up (laundry, cleaning, etc), be involved in church. How do I do it all? I don't. This just adds to the depression I already feel about everything else. I am trying to balance all these different priorities but really failing at everything single one of them. To quote Michael Scott from The Office, "Somehow, I manage." But I really don't, I'm just squeaking by. And "squeaking by" is not something I am ok with. This is completely unacceptable to me. My grandpa taught me when I was really little that anything worth doing was worth doing well. Well, I feel like everything I am trying to do is worth doing, but I am not doing it well. I can't think of one worthwhile area in my life that I am doing well.

All in all, I'm tired. I'm worn out. I'm drained. Quite frankly, I'm tired of trying to be strong. I want someone to tell me "It's ok. Everything will be alright. We'll get through this together. It's okay to feel drained. It's okay to be sad. It's ok to cry." And, above all, I'm lonely. I'm trying to be that person who says all that to Ariana, but I can't keep being that person. I need someone to tell me that. To quote the t.A.T.u song (and one of my favorites), Gomenasai:
When I wanted to cry
I couldn't cause I
Wasn't allowed
...
I never needed a friend
Like I do now

As I type this, I realize my initial hope was that this would help someone who is in a similar situation, but its now quite clear that probably won't be the case. There is no advice in here about how to deal with this. I don't know what the answer is. But just maybe reading this will help someone realize they aren't alone. Feeling alone is one of the worse things you can feel, in my opinion. Unless, of course you are in the dark woods, then feeling alone feels way better than feeling like someone else is there, somewhere....

My advice to everyone is, call up a long lost friend (or, these days, just send them a text) to say hi and ask how they are doing. I think everyone feels alone sometimes. And with as many people as there are in the world, no one should ever feel alone. And I will tell you, as my friend, call me anytime. And I mean this is all sincerity, I don't care what time it is (I'm usually awake anyway), if you just need someone to listen, I'm here. If you just need a shoulder to cry on, I'm here. If you need a hug, I'm here. If I need to get in my car and come bring you a Dr. Pepper and give you a warm hug, I'll get in my car right now. If you don't have my number, send me a private message and I'll give you my number.

Unfortunately, I am a terrible friend when it comes to just knowing if someone needs something and what they need. But I hope somewhere at there, either reading this or just somewhere out in space, there is someone who needs me. What hurts more than knowing a friendship is over is knowing that your friend never valued the friendship as much as you did.

More on this topic to follow, but I think I'm done for now. Until next time, thanks for reading! I apologize for the language in the meme below. So if that offends you, stop reading here. But this pretty much says it all.


3 comments:

  1. First i just want to say thanks a lot for making me bawl my eyes out! But it's really nice to know that I am not the only one struggling like this! It's always and emotional and physical roller coaster. And I wanting off the effing ride! I'm with you, on the one hand I know Mike is struggling, but he has no idea the toll his illnesses are taking on me. We've been doing this basically our entire marriage. Anymore I rarely can even muster the energy to feel bad for him. And that's awful of me i know. But I'm just so tired. I miss being able to be home with my kids and have time to take care of my house, and cook dinner, and still have a few min left for me. I wish I didn't have to worry that everything was going to be ok when I leave our kids with dad, or that I didn't have to teach my kids how to call for help if dad gets in bad shape. I wish I could remember a time when we weren't constantly drowning in medical bills. I wish I had the time time I mom things with my kids, and not worry that they aren't getting the things that they need because dad forgot and/or threw the paper away so mom didn't know the school was celebrating Halloween on another day, so kids were the only ones with out their costumes on. A lot of the things are little but just seems to always add up. I literally can't do it all. As much as I wish I could, I barely stay above water with what I do manage to accomplish. Mike has been to the point twice where he has wanted it all to end too. My son got to see my husband and I fight over a gun as he was wanting to shoot himself, and thought that I wanted to shoot daddy. Maybe someday life will get easier. Luckily I do have lots of family that is there for me/us. But I don't think any of them truly understand what it's like. I'm so sorry that you are going through a similar situation. You are definitely not alone!

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    1. Thanks so much for responding and sharing your feelings! It is great to know that there are others who not only read my blog, but who actually understand what I am going through and/or why I feel the way I do. Thanks so much!

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  2. I feel able to relate so much of your post and feelings. having rheumatoid arthritis and being in constant pain for the last 14 years trying my best to cope with it the best I can. At times having it be so bad suicide has crossed my mind many times. I've even thought about how much I will miss out on my grandson growing up my kids calling to tell me about their life Adventures. I'm not suicidal, and I have so much to live for and so many memories to make, but there's a level of pain that just becomes intolerable. I get so tired of being tired. feeling like nothing I do is worth anything anymore. I know how hard it is being on the side of someone with a chronic illness that causes so much pain. as well as having a spouse with depression bipolar emotional trauma left undealt with. seeing them suffer just wanting to feel better but choosing the wrong path and continuing self-sabotaging. it breaks my heart but I've had to give up on my current legal spouse. I can't take it anymore it hurts my body to stress about their problems and unstable Shenanigans the cause chaos in mine and my children's lives. I too wish I could have someone just tell me everything's going to be okay. that it'll all work out and that the pain will be worth it. but I have started writing senators I believe physician-assisted suicide should be an option in all states. Not just for terminally ill but those in chronic pain who find themselves in a position where nothing can help and nothing relieves it. I know it's very controversial subject. But if I ever reach what I call suicide level pain and it's consistent and unmanageable for an extended period of time with no hope in sight I won't stay alive through it. And I would rather be able to say goodbye to my family and close friends and go out in a way with dignity. and not leave behind the Miss and pain suicide causes among loved ones. I pray I never get to that point and that I'm always able to find some way to get through those days or weeks of Intolerable pain. And that I have more good pain days then the worst. it gets to be quite depressing trying to explain to people I look normal but I'm so tired sometimes I can't keep my eyes open. I went from working 65 hours a week to having to take a leave of absence in order to slow down my body to keep me from killing over. but no thanks to corporate Walmart refusing my short-term disability pay while on leave of absence. I've now exhausted all of my savings and gone into further and further debt paying medical bills on my credit cards as well as my insurance premium so that I can keep my coverage. I just wish they would Grant my SSI sooner than later so I can try to do the best I can to get that to work part-time. I know I'll have to work in pain the rest of my life I just can't do it the way I need to do to take care of my daughter. over the years I've suffered with depression I've had chemical imbalances and taking things to help balance things out. I find this depression is different the situational depression. Just one thing after another not going in any right direction gets to be overwhelming. thanks for being so open and sharing your feelings sometimes it's just nice to relate. To know somebody is going through similar things.

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