Irked

I don't normally like bitching about my life because in all honesty there's very, very little to bitch about. And I don't normally see much point in it but today I'm going to need to get out the bitch because...well...I need to and you're kind enough to indulge my whims.

For the most part I take care of B alone. I am the one who feeds him and washes him and fetches things for him and sits him up and puts him down and turns him and on and on. And that's fine. It's what I do. I don't expect pats on the back for it nor do I expect people to be in awe of me or think I'm some hero. I'm not a martyr. I'm not up on the cross because, frankly, we need the wood too much for that.

However I would like some understanding from the world at large that since I have a quadriplegic in my home that I take care of every single day that I don't live on nor am able to keep up a life and schedule like everyone else. Almost every thing I do I do for two people and frankly it takes time. And my priority is to first care for my husband and for myself.

Today is a holiday in Germany. I mean a real holiday where stuff is closed and people don't go to work. This means that today I don't have to worry about physiotherapists coming over or me having to go to the store or running to fetch the mail or anything. It's on these days where I like to keep my schedule as loose and free as possible. We wake up when we want, eat when we want, bathe, tidy up, whatever, when we want.

So we did sleep in today and had a late breakfast and I watched TV with B for an hour. Afterwards I rode my stationary bike for forty-five minutes and I sorted some laundry. It was now after 3:30 and my plan was to take a shower at 4pm and bathe B at 5pm. His baths can take any amount of time between 1 and 1 1/2 hours to complete and should it take even longer, that would be okay. My MIL usually comes down each evening around 6pm to visit for forty-five minutes or so and if I wasn't done with B's bath, no big deal. Point is it's a day that I wanted to take my time with stuff and not feel under a time pressure.

As I was sorting the laundry my MIL called and said that Wolfgang was coming up to see her at 5pm and they'd both be down sometime after that to our apartment. She had something she'd brought from her old summer home that I wanted and Wolfgang was going to carry it for her.

I did not want Wolfgang down here today. I didn't want to rush my shower or B's bath and I didn't see the point of him carrying this thing - it's a large laundry hamper actually - when I could have come upstairs after baths were done to carry it down myself. With Wolfgang showing up it meant that I had to get all bathing for the both of us within the next two hours because God knows I had to be available to greet the delivery of what essentially is an empty box with a lid.

B said to my MIL that he still needed a bath and her response was that we had plenty of time for that. I emphasized that I needed a shower as well and it didn't a whole lot of reation from her. Finally I said to her that they shouldn't show up a minute before 6pm.

It just irked me. I didn't want to have to rush through everyone's bath today. I wanted to take my shower and take my time with it and then do B's bath and not worry about having to finish by a certain time. Were my MIL coming down alone it wouldn't be a big deal because if I was still bathing B it would be okay. Now I had to do his bath first so that if I did run over on time he wouldn't be having his privacy compromised by Wolfgang like it was two weeks ago and then with my own shower I'd have to hurry as best I could to get done before the invasion.

I know I shouldn't let this bother me and I do understand that in the grand scheme of things it's not that big a deal. As it turned out I got it all done before 6pm. Got done at 5:58pm, actually. I was slinging washcloths like a woman posessed.

But here's what is actually irking me. I don't get days off. I don't get sick time. I sometimes get a couple weeks vacation every few years. I take care of B by myself the vast majority of the time. I have to practically jump through hoops to carve out enough time for me to get out of the apartment by myself so I can do something on my own. And I'm not complaining about this. I don't want a new life and I don't resent B nor do I find what I do for him to be a burden. All I ask for is that on holidays I get the opportunity to take it easy. I want the chance not to live by the clock and to do what I want when I want and not worry about guests or doctors or therapists or anyone else popping in like they do on normal days.

And what I want most of all is for people to simply understand that B and I don't have a life that's anything like theirs. I keep a different schedule than many people and my priorities are not going to be the same as many people. We work with what works for us and it has to be that way because we're different than other families. I know it sucks that we need to be called before someone visits but there are times when we just can't tolerate any surprised orchestrated by someone else. Sometimes I can be flexible but sometimes me being flexible causes me a whole lot of stress.

Okay. I guess I got it all out of my system. Thank you for indulging my little hissy fit!