Welcome to a Secret Subject Swap. This week 8 brave bloggers picked a secret subject for someone else and were assigned a secret subject to interpret in their own style. Today we are all simultaneously divulging our topics and submitting our posts.
My subject is: Tell us about your life at home. What is your family like? What do you do for fun?
It was submitted by: https://wanderingwebdesigner.com/blog
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--I have a chronic illness that makes me housebound most of the time or pay dearly for getting out.
--I also have way too many pets. Several have special needs including a diabetic dog that needs insulin every 8 hours and really limits what I can do away from home even on good days.
--I have an extremely dysfunctional family.
--My kid has hit puberty, and that has been one of the most difficult things I have ever faced in a lifetime full of difficult things. Haha. But no really…
And here we go with the rest of the story.
Around this time of the year 3 years ago, I had what I thought was a viral sinus infection, and I never really got better. For months, I ran a fever, had swollen glands, caught every bug I came in contact with, could barely move around… I felt like I was drunk with a virulent strain of flu all the time, and it’s only gotten worse since then.
I have what’s called Chronic Fatigue Syndrome here in the United States, but in other places, it’s often referred to as myalgic encephalomyelitis (ME). The symptoms are wide-ranging involving several different body systems. I have pretty severe gastroparesis and the symptoms that come with it which means I can no longer digest most proteins or vegetables/fruits. I can tolerate a few veggies from specific families and a few fruits, but they have to be cooked to the point they mostly lose their flavor. I’ve lived off rice, pasta, and potatoes for quite a while now. It’s a common issue for people with cfs/me. I have the joint and muscle aches that go with it to the point that even getting around my house is difficult sometimes. My energy is like a broken battery. At best I can expect to wake up at 50%, and that’s only if I have gotten a good bit of rest, but that rarely happens since insomnia is also an issue. Every single task I do during the day takes away from that battery, and if I overdo it, I pay for it for days or even weeks. My immune system doesn’t function the way it should and reacts to any stressor disproportionately resulting in constant swollen glands and fevers. I have trouble regulating my body temperature altogether though. My allergies are worse than ever and allergy attacks also trigger bad days. But the worst of it is probably brain fog. That’s an umbrella term for cognitive issues and for me it looks like not being able to recall words and actually say them. I know what I want to say, but I can’t actually say it. I lose track of what I’m doing much easier. Things take a lot more focus. My memory is shot, and I have real issues concentrating. I’m sensitive to sounds, smells, and lights. My migraines worsened.
And like now I can’t even talk about the full extent of it because I feel like people are reading this and rolling their eyes at how much I’m complaining, but this is my fucking truth, and it sucks. It sucks living like this… It’s not even living.
I exist.
I exist to push through as much as I can and take care of as much as I can while being invisibly disabled and being surrounded by people who refuse to understand or even acknowledge I’m not well. I’m expected to show up regardless of how I feel or what else I may have going on and then treated terribly when I have to be late. It’s one thing to be this sick. It’s another when even your own damn family doesn’t give a shit. The people in my home get it because they see it on a daily basis, but even then, even when I’m visually and obviously struggling to even walk, I still have to ask for help. So this illness is a big factor in how things go at my house. There’s no cure for it. This is my life now. Period. It’s difficult. I’m proud of myself for not giving up or giving in and for still managing to take care of myself and my home, but that doesn’t mean, at all, that it doesn’t weigh on me every single day of my life and nearly every single moment I’m awake.
Between rescuing, fosters, foster fails, and an accidental litter I have animals in the double digits that live with me. It was a lot of work when I wasn’t sick, but now? Oh boy. I have two cats with vision issues and anxiety. I have several with allergic skin conditions. My dane has an allergy issue as well. My chiweenie is old as Moses and needs glucosamine daily, and my staffie mix has severe diabetes. When she first showed signs, her blood sugar levels were over 500 when tested. And for months even with insulin, changes in food, more changes in food, and even more changes in food, it stayed in the 300-400 range. I was ready to pull my hair out when I researched more on my own and figured out that most dogs metabolize insulin faster than humans, so now I’m beholden to dosing her every 8 hours. It’s 9 a.m., 5 p.m., and 1 a.m. give or take 30 minutes. She isn’t great with anyone else doing her shots. She’s not really a people person at all. So…yeah, even without the cfs being a hindrance to going out and doing fun things, it’s hard to plan around that schedule. And no matter how many times I tell family and others that I can’t just let her go without or move it up too much too soon, they still make plans at times I can’t be there then get angry that I’m “late” even when I explain, again, that it will be an issue for me. You know, I get that people can’t always cater to my schedule even though I’ve always made changes to work with theirs. But to also get angry over it? That’s too much. I’m not going to risk my dog dying (and yes one missed dose causes a huge spike) for any reason much less a dinner or a party that, by now, people should know I can’t make it to at the time it starts. I love my animals. It’s not their fault I’m sick. I don’t want to find homes for them, and I’m certainly not going to neglect them. Sometimes it can be extremely frustrating, but more than that, they give me the kind of unconditional love and laughs I don’t get anywhere else. And when I can’t find any other reasons to keep going, I know I’m the only one that knows their medication schedule and they need me. Maybe that’s a bit dark, but it’s true. Holding on to the little things helps so much sometimes.
I guess you can see why the family is dysfunctional already, but I’d be lying if there wasn’t more to say. I want a peaceful life where I can be sick and have a bad day at my own home without someone taking it as abandonment. I want to be able to go to my mom’s house and NOT have my sister in law purposefully ignore me and not speak for months on end then get angry and throw a tantrum when I stop trying to make any effort. How many times do you have to show up at someone’s house with crafts in hand only for them to run off to their bedroom and slam the door before the problems aren’t blamed on you anymore instead of them? I’d really like to know. For the rest of my life, my family, the very little I have left, will always think of me as the depressed 16 year old dealing with sexual assault related trauma, abuse trauma, depression, and PTSD that made their life inconvenient. I’m 30 fucking 7 but I’m still treated like the misunderstood kid that didn’t clean her room and hated everything including and especially herself. No matter what happens, any tension with my sister in law will always be my fault because I was “tough to handle” as a teen. A bitch. She will never have any responsibility in it because that’s “just how Jenniy is.” It’s absurd. People grow up and change. I’m not even close to the same person I was that long ago, but I can’t escape it. And the kicker of it is….I SHOULD HAVE BEEN TAKEN TO FUCKING THERAPY not shit on for having a dirty room or not loading the dishwasher correctly. I shouldn’t be called “lazy” because I was a depressed teen and that somehow suggests that I can’t actually possibly be really for real sick with a chronic illness. I’m still “lazy.”
And then I have my kid’s father who lets his wife call our son “princess” because he doesn’t meet her definition of manliness, who won’t take up for him because he’d rather his child have to deal with her than argue about it. I refuse to discuss my son’s personal stuff here even with a made up name, but generally speaking, his father decided it was best to hide some things from me that could have led to serious consequences just to have one over on me, I guess. I’ve literally begged this man to spend more time with his kid, so if he really wanted to have a better relationship with him, he’s had ample opportunity to do so in a way that doesn’t include A—keeping secrets and B—treating our kid like his buddy instead of his son, but he’s never done so, and my kid shouldn’t be put at risk because for once he knew something that was going on and I didn’t. By chance. Who does that? Who puts their own kid at risk just to have a fucking secret then gets to call me angry and a shitty mom when I call him out on it? Am I perfect? By no means. But I would never dare put my own ego over my kid’s well being. And I damn sure wouldn’t do it with a partner I didn’t even want to be with and talks terribly about all the time. I’ve had to be contacted twice for a “reference” from child services for these people because her daughter from a previous relationship lies about them when she is angry, but when my son tried to explain something she had done to him recently on the very same day I was contacted by child services, HE is the one who was aggressively called a liar and even when proven, his stepmother refuses to apologize, and his dad won’t say a word about it. When I pointed out that he gets treated differently, I was told, if anything, he has fewer rules. Yeah, I fucking gd know. That’s part of the problem. Going down there with a dad who treats him like a friend instead of being his actual dad, who has no chores and no rules set for him means I get that much more attitude when he comes home and I do have more of a routine. I’m his teacher, his parents, his counselor, and his confidant. But I’m not his buddy. We have a good relationship even through the teenage attitude. I love him. We talk about things and work on art together, but we aren’t besties. He has his own friends. What he needs from me is love, support, and guidance. He needs the exact same from his dad. Not friendship. So not getting treated differently means he has no rules but gets bullied by his stepmother and his stepsister gets away with everything. Cool. Cool, cool, cool.
I think that because of my own issues with my mom that I thought so much of our strained relationship was due to her own mental health and mine as well, and I guess I expected none of the attitude and tension that comes with raising a teenager. AND BOY WAS I WRONG ABOUT THAT. That was kind of my bad though. I underestimated the full veracity of puberty hormones and the changes that come with that. We get along fine most of the time. We had some issues for awhile, but a lot of that was deeper rooted, and we’ve talked it out and been more open with each other. It’s not perfect. I don’t think there is a way to refer to life as a parent as perfect when you’re raising a teen especially when the other parent isn’t doing their part and never really has, but considering we’re around each other all day every day because I homeschool, we do alright. It’s hard not to take the attitude and the angst personally sometimes though, and I have unabashedly cried in the shower many a day.
My home life, then, has been less than ideal especially considering I don’t have a lot of outlets because of my illness and needing to be around the house every 8 hours. I can’t go on vacation to escape it for a little while. I can’t even be gone for more than a few hours at a time without paying for it for days afterward. I can’t even go out to eat at a restaurant because of my food issues. A lot of my living is done through social media and books (when I can focus on reading). What fun I do have is time spent online with people I’ve never met who are more considerate of what’s going on in my life than most people who’ve known me my whole life. Funny how that works.
To end on a better note, though, I have started some art stuff and my own etsy shop selling enamel pins. I used to think I could screw up a stick figure, but it turns out, I’m not all that bad for a beginner. I’ve collected enamel pins for a long time now and really enjoy them. I wear one every time I leave the house and make it part of whatever outfit I have on that day. It gives me an extra way to express myself through style and show off some of my geekier tastes, but I had some trouble finding things I really wanted, so I decided to try and make my own. I have a manufacturer that actually molds and produces the pins themselves, but they’re completely my design, and having people buy something with my artwork on it has been a lifegiving sort of feeling. It’s amazing. I don’t really think I can put it into words. I love when people connect to a piece I write, but I’ve always been scared to put myself out there more than a blog or occasionally a free e-zine. This is something different entirely. I’ve laid my own creations out there for people to buy and review, to reject or love, and they’ve kind of been a big hit so far. I’m over the moon about it, and honestly, I need this. I need something in my life I can sink into and be proud of right now or all the bullshit from everything else gets too heavy.
Here’s my shop if anyone is interested in looking:
Thanks for letting me vent. I was dreading this when I first got the prompt but I think I needed to vent more than I realized.
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Baking In A Tornado https://www.bakinginatornado.com/2019/06/fill-er-up-secret-subject-swap.html
Wandering Web Designer https://wanderingwebdesigner.com/blog
Cognitive Script https://cognitivescript.blogspot.com/2019/06/pet-peeves-sss-june.html
The Bergham Chronicles https://berghamchronicles.blogspot.com/
Bookworm in the Kitchen https://www.bookwormkitchen.com/
Never Ever Give Up Hope https://batteredhope.blogspot.com
Part-time Working Hockey Mom https://thethreegerbers.blogspot.com/2019/06/secret-subject-swap-step-up-guys.html
Wow, the challenges you have to deal with are incredible.
ReplyDeleteIs there a silver lining? The pets don't talk back? ;-) Trying to make you smile here, does it work?
hahaha. yes at least I don't have to hear "MA I NEED MORE FOOD" 50 times a day because one cat ate 10 little pieces of kibble and the rest are in panic mode. I'd really lose it then.
DeleteI hope that getting it out helped. I have written blog posts that never get published, I just needed to get it out.
ReplyDeleteA also have chronic issues that limit my abilities and sometimes it can be so overwhelming. I wonder if anyone has ever done a study to see if these illness aren't created from dysfunction.
ReplyDeleteI think of you whenever I see your name (facebook, etc) and wonder how you are doing. You are such an incredible trooper! Thank you for sharing this.
ReplyDelete