I haven’t been at my best lately. I don’t know what I can contribute this to…the weather? Chronic pain levels that seem to grow higher each day? Horrible, depressing situations occurring to someone within my social circle? The loss of control [all of it] in almost everything?
Truthfully, I haven’t felt control in so long. It’s hard enough, having no control when it comes to pain, but also…being a stay-at-home-parent. You relinquish a lot of your control to, well, almost everything. You’re no longer in control of when you wake up, or in control of exactly how your day goes. If I’m having a bad day and need a nap, I can’t just take one, you know? Aside from that obvious one, I could expect a certain thing, and that likely wouldn’t happen. If there’s something I detest about myself, it’s my hang ups on what I want and expect to happen verses what does, and how I handle myself in those moments.
I have only myself to blame. I get so worked up over little things that aren’t really that important. I don’t handle stress or anxiety very well (although I try to put a brave face on for it). It’s like a fast moving river, I can’t seem to stop the torrent of water from going downstream.
I’m trying not to do that today, I really am. I don’t like being on edge, anxious and frustrated. I don’t like worrying about things far outside my realm of control. But I do, and that is the icky truth.
I feel like I’m not doing enough though. Even on my good days, although the feeling of not doing enough is definitely increased tenfold. But my good days are not nearly enough, pain wise, and even when I have them…they don’t mean I can do a whole lot more than I can usually, on bad pain days. I need to be careful, to not use up all that good day on things, because the next day will be a really bad day if I do.
Good days and bad days, I feel so limited with that life. I don’t want to worry about good days and bad days. I don’t want to not do something because the repercussions would be too great.
Excuse the whine I’ve put on today, I just needed to get it out…somewhere.
I took Nolan to a doctors appointment yesterday, to have our family doctor look at his legs and get us an order for an x-ray. Sick Kids won’t see him earlier until that’s been done, until our family doctor sends them a rec again.
When I was kid, all my parents had to do was call Sick Kids and book an appointment. Now you have to jump through so many hoops to just get an appointment. You can’t just call the orthopaedic floor and book one. You either wait for your schedule appointment (every two years…when I was kid, it was every six months…) or you have your family doctor check it out, order x-rays and send another rec in for every individual site that’s bothersome.
Nolan’s knees have been causing him a lot of pain the last several months. They’ll lock up on him, making getting dressed, walking around, and playing difficult. He tried to get out of bed one morning and ended up falling to the floor screaming and crying because it hurt so bad. Thankfully, that’s only happened once so far – that fall to the ground, screaming and crying thing. It was scary and heartbreaking. Worse? I knew how badly it hurt, because I’ve been there. A bonus was I knew how to fix it. Massages, warm blankets, Rub A535, Tylenol and cuddles. It doesn’t take the pain away, but it eases the sharpness of it.
So, we’ve got the order for x-rays, and we would have taken him in last night but we had to wait over an hour to even be seen by the doctor, while Archer slept in the truck and Matt hung out with him. But by the time we left the doctor’s office, Archer was miserable and awake and the line up for x-ray was really long. Matt’s going to take him today, then drop him off at school.
Truthfully? I’m feeling a lot of guilt about the fact that both our sons inherited my MHE.
When I was a kid, I used to wish that someone in my family had MHE, just so that someone would understand and know what it felt like. Just so I’d have someone to talk to. I felt lonely and isolated. I was the rare, genetic mutation. Nobody in my family had MHE at all. It was until I was in middle school did I learn about the MHE and Me support group, and start talking to other people with MHE…other kids like me. That desire to have someone in my family with it went away, because now I had a whole group of people who understood what I was going through…even if they were miles away.
But I can’t help but feel like that wish when I was a kid is the reason both my sons have MHE. I know, that’s stupid. Genetics is the reason both my kids have MHE. Still…guilt is a funny thing, isn’t it? It’s not exactly rational.
So, there you have it. That’s what’s been going on in my head lately. Exciting, huh?