Sunday, May 17, 2009

So, where have I been?

Well, on April 30th, we finally sold our house. The weeks leading up to that day were fraught with millions of tiny little details that had to get attended to, more than one overly emotional scene, and an impossible to measure amount of exhaustion. I'm sure that this is true for anyone who is selling and moving out of their family home, but I have to say that, for me, it was both surprisingly easy in some unexpected ways and intensely, intimately difficult in others. But by the time we finally got to the point of passing the papers (2 days and 1000 little-things-going-wrong-at-the-same-time later), I was ready to be done. I had said my goodbyes and packed up all my memories along with my belongings, and I was ready to move on.

Since the 28th of April, and the final big cleaning push of the old house, I've been staying - gladly and thankfully - at my grandmother's house. I've had a (mostly) fabulous time, getting to spend time with Grandmother and UJ, watching Lil Girl get to know them better - and watching them enjoy her as much as I do -, and just really enjoying my visit. But that's the thing - it's just a visit. I'm not home. I'm not in my own bed, with my own things, in a place where it's ok to just lie still all day without setting off all kinds of alarm bells for other people. (Mum knows that on bad days I don't so much as roll over: Grandmother thinks it's cause for emergency interventions, and should she call the doctor?)

It's just not my place, and the longer I stay - and I'm nowhere near the end of my stay, as illness and injury, as well as a few siblings who seem to have forgotten our new address, have contributed to the new house not even being a quarter of the way ready for me to move in - the harder it becomes for me to keep up the energy required for being in proper 'guest' mode. It's exhausting just to deal with my normal pain, and then you have to add in the fact that there are no showers here, so there's none of that temporary relief (though I did escape last week to a hotel room for a shower, and I'll do it again next week too), plus the fact that I'm sleeping on a pull out sofa bed, which isn't exactly the leading contender in comfort; plus all the additional work I have to do to get myself through the day - breakfast at the table, getting to the bathroom on my own, transferring from the chair to the couch to the chair to the bed a lot more times a day, the fact that any of the stuff I have to do is just a little bit more complicated because none of the things I need are set up to be right on hand, like they are at home: well, it's been a challenge, is all I can say.

And, yes, I know that I don't have to be in 'guest' mode all the time, but it's what I do. I'm surprised at how much I manage to 'hide,' about how much I feel I have to hide, so that nobody knows how bad it really is. This might be ok if I'm only seeing people for short periods of time, but long term? It's impossible. And I'm finding it scary, how vulnerable I feel, even though I know that Grandmother and UJ love me and they're my family. I don't know why it's so hard to show them how much pain I'm really in, but it is. It's like I'm letting them down, not being the person they expect me to be, or like I'm hurting them by showing them the truly overwhelming nature of my illnesses.

I've had to cut out things like my breathing doctor appointments, because trying to get in and out of the house once a week - which means climbing down 3 or 4 steps, into and out of the car here and there, then there and here, then climbing back up the 3 or 4 steps - was just too difficult and cancelled out any benefit I may have been getting from the appointment in the first place. I've learned that there are somethings I thought I couldn't do that I actually can - hello, idiot: If you have smaller containers of orange juice or soda, you can pour them for yourself, and not have to wait for somebody else to do it for you! - and somethings that I need help with that I just am too embarrassed to have anyone but Mum do (and that I totally need to get over that).

I'm pretty sure I need to find another PCA, too: to handle all these little things I need help with when Mum is too busy to do them. Of course, this is, in effect, demoting my mother, and I haven't quite figured out how I'm going to do that yet, so that's obviously easier said than done. But there are a lot of things that are falling through the cracks because she's busy with the remodeling, and they are things that would make it easier for me to function, so I should be at least attempting to find somebody to cover for her. Instead, I'm trying to struggle through on my own, and I'm not sure how much longer I can do that.

But, that is where I have been - struggling to get through the everyday a little bit more, which means that my google reader has read "1000+ new posts" everyday since I've been here, that my gmail has gone unanswered, and my blog has been neglected. I do think I'm doing better at hiding less, not trying so hard to make it seem like I can do things that I really don't have the energy to do (Basically because I hit a wall, which is not unusual for me - push too hard, hit an impenetrable wall of fatigue and pain. Repeat as necessary until you get it through your thick skull that you JUST CAN'T DO EVERYTHING YOU WANT TO BE ABLE TO DO, you dope. Oh, and also? You have no immune system, so stop pretending that you haven't caught that sinus infection - you have. It's living in your face. Call the doctor and get a Zpack already. KThnxBye!) This should translate into a schedule closer to what I'm used to - which means more puter time, because I don't have any energy to do anything else.

Although I'm not passing up on the hour long talks with Grandmother & UJ - one of my favorite low/no energy activities, and one which I'm happy to be able to indulge in to my heart's content right now.

1 comment:

Sue Jackson said...

Wow, I really feel for what you're going through. I can't imagine moving with CFS, but I do know how exhausting it is to stay in someone else's home. None of my family lives nearby, so to see them we usually have to travel and stay at someone's house. It really wipes me out to be a guest...and that's something other people in my family really don't get. They take it personally that I can't manage more than a few days with them.

Hang in there and rest as much as possible.