Cathedral Ceilings

Have you ever heard someone say that so and so is going to “hit the ceiling”? Well, somehow mine must be a mile high because I have no idea how I didn’t have a full-blown meltdown this week. I haven’t been especially ill this week or anything; no issues with my medications. I’ve just been EXHAUSTED. Exhausted and stressed beyond belief are one hell of a combo let me tell you. And to make matters worse my toddler has been acting extra toddlerish (my made-up word). As I’m writing this, she runs up the stairs and into my bedroom and instantly begins trying to press the keys. Mind you, she’s already cracked the screen on my new work laptop. Once she realizes that she can’t play on mommy’s laptop, what does she do? Kicks me repeatedly in my ‘bad’ arm and kidneys. Needless to say, she got a nice swat on the butt for that one; not a proud moment.

I hate admitting this, but Ava has been a huge source of stress for me lately. I don’t know if she’s going through some phase or if this heathenism is ‘normal’ for her age, but good lord. I can tolerate the defiance (because after all she is a toddler and my child) but it’s the physical part that I’m having a VERY hard time dealing with. I don’t have an appropriate word to ‘call’ what she’s been doing…I don’t want to say violence because that just sounds so ugly. She’s constantly slapping, kicking, biting, and throwing things when she doesn’t get her way. I would say, 75% of the time I can deal with it without having to spank her. The other 25%…like today…I just react, and she instantly snaps out of whatever mindset she’s in. I don’t ‘hit her, hit her’ but she’ll get a spank on the butt or the hand and if she bites me hard enough I’ll bite her back. I absolutely hate using physical punishment; I swore to myself that I would never ever hit her. It makes me feel like a monster and a horrible mother sometimes. I have a freaking degree in Psychology and Marriage and Family Therapy, I know how ineffective physical punishment is and how damaging it can be; I should know better.

Dealing with her (pretty much) on my own 24/7 has taken a HUGE toll on me. The only “break” I get is when I go to work. You would think that on the two or three days a week my husband has off work, I would get some reprieve, but it doesn’t feel that way at all. I have to give some credit, he does let me sleep in and nap a little longer than she does. On days (like today) when I feel especially blah, he’ll take her out of the house, so I can have some quiet. My problem with him doing that lies with the places he takes her. They’ll go to the park or the mall to play; things I miss. I already miss out on a lot so when he takes her somewhere and gets to spend ‘fun’ time with her, it makes me sad and a bit angry. When there are dishes and laundry that need to be done and the option to go out and be productive (like going grocery shopping) is there, why would you choose the latter? And what happens? I wake up from my nap, see that the living room is a mess, the dishwasher hasn’t been emptied, there’s dishes in the sink that need to be washed, laundry that needs to be washed and dried. They’ve been sitting there all damn day, so I guess I’m going to be the one to do the ‘dirty work’ (like that’s anything unusual) while my husband is off making memories with our daughter. It makes me resent him.
I was reading a few articles about how having a chronically ill spouse and parent takes a toll on the family. I was surprised that most of the posts stated that the ‘sick person’ should put their needs above their child’s and spouses…that doesn’t seem right to me. I understand that when you’re sick, you need to take care of yourself but to put yourself ahead of your family…I don’t know about that. Aside from that tidbit, one of the most common changes the authors suggest is that the family routine be altered to give the ill family member more support. That I agree with and that is also something I do not have. I love and appreciate the hard work my husband does to provide for our family but the jobs he chooses have the most inconvenient hours and schedules you can imagine. My parents help as much as they can, but dad is basically me (or vice versa rather) and my mom has her hands full with him much of the time. They aren’t exactly spring chickens so it’s not easy for them to keep up with a rambunctious toddler, multiple days a week just for my sake.

I have a total of three people in my life right now that help, but it’s not enough. Having to watch Ava 10+ hours a day, for much of the week is literally killing me. Aside from taking my medication as directed, going to doctors’ appointments, and complying with any ordered tests, I don’t take care of myself like I should. I have no time. Between taking care of Ava, the house, the finances, and this medical bill bullshit, when am I supposed to relax? Two of the things that make the symptoms of MCTD worse are smoking and stress…I’m almost at a pack a day and if not for Ativan I would have snapped already. I’ve cried more times this week (like right now) than I have in the last month. I’m so frustrated and angry and disappointed and alone. I hate this disease. I hate what it’s taken from. I hate what it will continue to take from me. I hate that it’s made me a shell of my former self. I hate that for whatever reason, I had to get this disease. Why me? Is it genetics? Is it karma? Or am I just one of the unlucky ones? Sometimes I wish it were possible to make a deal with ‘the devil’; I’d trade anything to be rid of this disease and have my old self back.

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