Saturday, October 2, 2010

Rambling a bit

Many good things have happened. There have been times of real grace from Hashem.
Robert commented on how a few things have really given him lots of happiness these past few days... one being that when he got home from shul on Friday night, the table was set beautifully, salads were out, kids were playing nicely and I was relaxing on the couch learning the Torah portion. He has missed that. It used to be my regular operating system. Now, for these past three years, it is rarely that way when he comes home. Often I am in bed, recovering from Friday, table not set at all. So, he commented a few times on how nice that was for him.

Then when he came home this evening from shul, at the end of Shabbat, I had things pretty well organized, and had dinner already planned and set up to serve right after havdalah. So, this, also was a pleasant surprise for him. Again, often I am in bed, or for a zillion other reasons unable to hold the fort down and be organized.

So when this evening, after the kids were all in bed, Robert said to me how nice it was to experience these things again, I felt pressure. Like maybe I'm supposed to be consistent in reproducing this again every Shabbat now. I have good days and bad days... indeed good hours and bad hours. I feel that I can't live up to "milestones", rather just to current accomplishments. Things are so incredibly inconsistent still.

On the subject of inconsistent, I'll mention here the category of sleep. I sleep sooooo much. It is like the sleep of six newborns. Eat, sleep, repeat. Sometimes skip the eat part. On Wednesday (erev Simchat Torah) I slept ALL DAY. Good thing my husband cooks. There are quite a few days in which I sleep till one or two PM. Yup, you read that right. Again, thank Gd for Robert and his acceptance of my situation. But, what is going ON here? Why so much sleep? I want to listen to my body, but I don't understand what it is telling me with this. So I'll take a blood test to rule out the obvious things (but my diagnoses traditionally haven't been of the obvious nature), and after that, we'll see. My doctor suggested a sleep clinic evaluation. Maybe I'll do that, dunno.

Maybe it's because I still have a great deal of pain? Oh, and what's the deal with *that*? It may be my imagination, but it seems recently to be getting worse, not better. The main pain is still from the recent hernia/mesh surgery. I feel that one screw like a hammer and chisel still (but less frequently and less strong than at the start), and the pressure from the mesh is at times quite urgent. So I'm still taking the Voltaren. My doctor strongly suggests to try to get along without it for my own sake, but it's not an option yet.

Secondary to that is the ongoing thigh joint pain. It's very stiff and has limited range of movement. I need to get back to the pool now that the holidays are over and work that puppy. I hope that is the only issue. And I hope I'm not pushing it when I shouldn't. Again, I don't totally understand what my body is telling me here.

Underlining this all, for me, is the feeling of frustration that it's not OVER yet. And with that the fear that it'll never be over. Of course, that begs the question "what is my definition of 'over'?" For me, 'over' means no more surgeries in the foreseeable future, regaining my lost strength, and no significant pain. I gotta say, looking at that short list, I still don't actually believe we'll get there.
I'm sorry guys, but I just don't see it. Please see it for me.


  1. Robert is communicating with you, appreciating what you did right now, thankful that he's getting to see something "normal". Try not to look at it as pressure. Try to look at it as an accomplishment. You may not be able to do it consistently but when you do, it makes you all happy and he appreciates it. It's all about baby steps. It may be a while before you can do it again. That's ok. When you do it will be appreciated again. Just remember, when someone compliments you you say "thank you", not make excuses for why that wasn't really something to be complimented on. Tell him thank you for the nice remark and enjoy the evening.

  2. I see a Sarah with a new normal. Not the Sarah from before NF -- but a new Sarah with perhaps some limitations, but not constant pain. That is my prayer for you, that the pain will be worked out somehow and you get to where you can go through a day without it.

    Hugs, Jackie