Exhaustion. It can hit out of the blue. You think you’re doing well and handling everything, and you have a hopeful outlook. It’s not always physical exhaustion. It can be mental or emotional exhaustion. But, mental or emotional exhaustion definitely adds to the physical exhaustion. That’s where I am this week. I’m mentally exhausted. I’m tired of struggling all the time. I struggle with a busy schedule…work, managing a household, taking care of kids, being available to my husband for his dialysis or any other medical needs he has. I struggle with worry EVERY SINGLE MONTH on how I’m going to pay everything and still be able to buy a little extra, or do something fun, or be able to pay for something my kids need or want.
Home dialysis was supposed to make things easier for “us.” They told us the machine is the size of a suitcase, and we can take it anywhere, even on vacation. They didn’t tell us we would need to lug 5 large bags of fluid for each day of dialysis (25 bags for a week), saline IV bags, and a gazillion medical supplies with us. They told us you do dialysis more frequently, but for less time. We do dialysis 5 nights a week for 2 1/2 to 3 hours once he is actually hooked up and dialyzing. It doesn’t include set-up time and clean-up time. It ends up more like 5 hours a night. That’s a lot. They said he can do it on his own, but it turns out, he has to have someone here with him to help him hook up and unhook, or be here in case of an emergency. It’s not easier at all. It’s harder.
I’m so tired of worrying about money. I get the summers off, but I end up a stressed out wreck because I don’t get paid when I don’t work. I’ve been applying for other full time jobs that are year round, even though it will mean I will have to leave a job of 9 years that I love. I considered finding something part time that I could do during the school year to supplement my income, and pick up hours in the summer to maybe enjoy them without worrying. But, because of dialysis 5 nights a week, I don’t know how it’s possible to work part time during the school year, after work. There just isn’t enough time in the week.
I’m tired of saying no to things that are important to my kids because I can’t afford them or I don’t have the time or ability to be both at home, and out. People will say, “you don’t have to give them everything they ask for.” My answer to that is that they don’t ask for much, and when they do ask, it’s very important to them, or it’s a life event that they shouldn’t have to miss. I hate that there are times they have to miss out because I’m not available or can’t afford something. I hate struggling to figure out where the extra money is going to come from. I hate that I am the only one who worries about it. It really sucks to keep disappointing your child, when you know you are struggling yourself to accept all of this.
I’m tired of having to keep it all to myself because the person that I’ve always figured this stuff out with is sick. He’s sleepy, he’s medicated, his brain is often foggy. And there isn’t much he can do. He is exhausted, too. His body is failing him, he’s in constant pain, he’s sleep deprived, he’s forgetful. He doesn’t have a solution to any of this. I’m tired of handling it all alone. I have to always keep him and his illness in mind, otherwise I would be overcome by resentment and hopelessness. I keep him in mind because he has enough to worry about. He didn’t ask for this any more than I did. He has it worse. My exhaustion is nothing compared to his.
This exhaustion has come and gone many times in the last 9 years since he got sick. We always rally, we always make it through, we always survive. It’s a matter of plugging along and pushing through. We have no other choice.