The day after….

Yesterday went pretty well.  I felt okay getting the bus uptown for Sara’s court.  I gave myself plenty of time to rest before we had to walk the rest of the way to the court house, and the same thing on the way home. 

My downfall, of course, was adding an afternoon shopping trip to the day and not taking a nap.  That was a mistake that I am paying for today.  Now I am so tired that I feel like it is difficult to breathe.  My head is aching and I just want to sleep.  I know that if I lay down, sleep doesn’t come, and I feel no better when I get up.

So I need to plan this day more carefully.  I have some errands that have to be done and a few that I can put off for a little while.   I am hoping that when Becca gets up, she’ll be able to take me to the store and I can get at least that much done. 

Still thinking about moving to New York and taking that job there.  It certainly is not what I want to do, and I can see that in doing that, I’ll just create another issue to deal with, but I am not finding work here and I’m running out of time, putting people off and rotating who gets paid this month, who has to wait. 

Christmas shopping as been difficult with such a small budget.  I am so lucky that I put so much away last year, I really didn’t have all that much to do this year.  All the same, here it is, just a few days before Christmas and I still have a list to deal with.

Waiting for test results is a little bit like waiting for oil paint to dry.  You know full well that it doesn’t dry as fast as acrylic, but still you have to test it every little while just to see, and yup, it’s still not what you need it to be. 

I don’t know if I’ve ever been so glad to see a year end.  I do think I’ve said that every year for the last 10 or so. 

Lost Days and Choices

 

The appointment on Friday was not quite what I had expected.  More tests and more confusion.  Most of me is sure that, as usual, nothing will be found.  Of course, that does not make any of the symptoms lessen. 

We are going to try a different drug.  I need to start keeping better track of what I’ve tried, and then of course, why it didn’t work. 

I feel so tired all of the time.  My days are running at about 40 per cent.  I had been doing so much better.  Although I am sleeping much of the day, my days still feel so long and empty.  Not being able to work had been hard on me, and I am so hoping to get more done this week, and begin working my self back to my normal. 

I don’t want to try any more drugs.  I don’t want to be tired any more.  I want to be able to work and get the me that I like back.  I thought that after I had finished my caregiving, that my health would slowly return.  I’m sadden that it has not been true, that in fact, if anything at all, I am worse now, and slowly getting much worse.

And so then come the decisions.  What next, and how, and of course where.  A new plan.  Catching up on “lost time”.  Trying to create something close to a normal life and most of the time wondering just what that even is.  What changes can I make that will make this next set of time easier to get through.  Should I try to make any changes at all.  The only thing that is deeper than the confusion right now is the depression.  I’ve begun to wonder if either will ever go away.

Today....

..... I have my after hospital re-check. I guess I'll have a good list of questions to be asking, although I already know the answers to most of them. There simply are no answers.

I've had to cut way back on what I do during the day since I got sick, and because I was gone before that, I am just so anxious to get back into full routines and back to work. The lack of things to do and the lack of money is really getting to me. I'll be so glad to be able to start adding back, one thing at a time.

I did get to sew yesterday, for almost an hour. Only one nap yesterday, but then I had to go to bed early. I feel trapped inside this body during these fibro crisis days, and restless for something to do. I have plenty of quiet activities, but of course a nice long day out is what I am longing for.

I'll see what the doctor says today. Maybe finally she'll let me try one of the other drugs and see if we can get more of my symptoms under control. Until then, happy knitting!

tied up and twisted, the way i'd like to be

Altho I shamelessly copied all of the lyrics to this song here, that was in part because it is such an amazing song. What struck me about the song this morning was that dashed hope that we all have, and know that we have to let go of in some way. Dreams that may or may not have been ours, that are just not going to become reality. The "what-ifs" don't even matter. The fact is that sometimes no matter how badly we think we want or need something, it is not to be. Crumpled bits of page filled with imperfect thought.....

Every generation
Blames the one before
And all of their frustrations
Come beating on your door
I know that Im a prisoner
To all my father held so dear
I know that Im a hostage
To all his hopes and fears
I just wish I could have told him in the living years
Crumpled bits of paper
Filled with imperfect thought
Stilted conversations
Im afraid thats all weve got
You say you just dont see it
He says its perfect sense
You just cant get agreement
In this present tense
We all talk a different language
Talking in defence
Say it loud, say it clear
You can listen as well as you hear
Its too late when we die
To admit we dont see eye to eye
So we open up a quarrel
Between the present and the past
We only sacrifice the future
Its the bitterness that lasts
So dont yield to the fortunes
You sometimes see as fate
It may have a new perspective
On a different day
And if you dont give up, and dont give in
You may just be o.k.
I wasnt there that morning
When my father passed away
I didnt get to tell him
All the things I had to say
I think I caught his spirit
Later that same year
Im sure I heard his echo
In my babys new born tears
I just wish I could have told him in the living years

Mondays and Goals

The saddness of last week lingers today. A short night is going to make for a long day. I'm sure there will be a nap needed today, but in the mean time I may as well get started and do some things. The morning routine is not so difficult by the end of last week, so I have high expectations for this week as well. Things are getting done, which is really nice.

The idea is to set a goal for each role you play in your life, and I'm not so sure that I do that every week. This week is going to be just as one sided as usual, with emphasis on work and house and not so much on anything else.

I was able to re start my yoga routine, and although I've got awful muscle aches today, I hope to get at least a short work out in.

I, of course, I way behind in my classes and that needs some attention. I have three classes on Monday, and they all three need catching up. I think that might be a good goal for the week, Monday classes current and the rest of the classes not further behind.

My sewing has taken the biggest "back seat" and that needs to change today. I have so many things I'd like to have already gotten done, not only sewing but knitting as well. It won't take that long to get some things off the list and that will look so much better.

What other roles do I play right now, and how comfortable am I with them? I think this might be a good question to ask in my private journal, it certainly needs some thought.

Living "alone" has been good and bad at the same time. I've become less and less of a social animal and most of the time I am fine with that. I really don't want anyone around me, judging me, critisizing me, or even telling me all of their problems. I do need a social outlet, but I do not think that I am ready for that quite yet.

Christmas bins to get out and some decorating to be done. The decluttering needs to continue and a bit of furniture moving to be done. One of my sewing machines has stopped being usable, and so I would like to move it around so that the workspace is more comfortable. If I can manage just one or two items a day, I'll be fine. It won't take that long to get everything the way I want it to be for now. Until the next crisis that needs to be worked through......

Today is cut day. Fabric needs to be auditioned for a couple of items, and the fabric bought for the sleep pants needs to be cut and I hope sewed together. I wonder if I can manage to get a few more things cut today and ready for the next sewing sessions. Resolutions can be made every day, not just at the new year. What is it that I want the new year to bring to me?

And of course a set back

Part of it the physical things that I have been doing, and part of it a restless night, and part the very sad news, but today is a hard day already. The pain is almost overwhelming me and I need to be very careful today to be especially good to myself.

Karl Rudat died on Tuesday. He didn't follow his own advise, and we have lost a great doctor. I have my appointment with him in January for my follow check up, and we have lost him forever. The sadness of this news stunned me. I almost asked for him while I was in the hospital, just because I wanted to see him, but I did not, and that is a regret that I have now. That funeral I would not have been able to go to. "It's been a pleasure doing business with you" he said to me after Antonio was born. And it was, always a pleasure.

And so today I am more mindful than ever about that subject of words. The very thought that I have was expressed well in the lecture I was watching last night.... "The message you intend to send may be very different than the message that is received by the other party"

Lets try to make ourselves clear to the people that are so very important to us.