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.

.....one step back

I know that I've been doing too much. Not enough rest and pushing for just a little more energy. I did sit between jobs yesterday and I did rest, but I guess not enough. That little nebulizer machine is my friend and constant companion. I am almost out of the medication they sent me home with, but I'll cross that bridge as I get to it. For now, it seems to be my life line.

The medication makes my shakey, but that is a small price to pay for a deep breath. I've finished with the steriods, and so I am hoping that my eyesight improves and I'll be back to my normal in just a couple of days.

I've been doing a lot of cleaning and wanting to declutter even more. My sister wants me to come live by her and sometimes I think that might be the best option. No matter what my decision is, I still have way too much stuff to deal with and I need to be able to get rid of a good part of it.

I want to start decorating the house today. I am so anxious to get started, thinking it might make me feel like something is normal.

Normal is highly overrated and rather denotes a lack of courage.
So be it

As Days Go….

The day yesterday was not all bad. I woke up hours before I wanted to be up, but that gave me extra time to rest before I got dressed and to make sure I had a breathing treatment and food. I very much need to learn self care. To an extreme level.

The funeral was not uncomfortable either. I think most of the family, although sad at the loss, was ready to let the pain go. A strange sort of relief, prayed for endings that you really don’t want.

We are not meant to live forever, and so, somehow, an end must come.

Most everyone was conversational and the visitation went well. Becca was gracious enough to leave right after the service to get me home. I was able to rest before a shopping trip this evening, but I do think that was my downfall, two outings in one day was much too much and now I am beyond exhausted and sad.

During the visitation, as is usual these days, there was a slide show of pictures from the life and lives touch by this man. It was interesting to see my children so young, interacting with others around them, and left me feeling reflecting on an easier time. We didn’t think it was easier when it was happening, but it certainly was easier then than what we are going through now.

Decisions still have to be made as to the future path I am to take. I would rather just sit and let the future happen, but I do know that it isn’t right to do so, and taking an active role in ones own life is the only way to insure that it goes in the direction that you desire.

Be careful with your words. It seems that you never know who is listening, or reading, what it is that you say. When you wrong someone, apologize from the heart but do not expect forgiveness to happen. That is a gift that is not always able to be offered. Some words change relationships forever.

I've been reading 7 Habits.... and one of the things that he says really hits home with me lately. Something about energy banks, although that is not how the author phrased it, life is a two way street. And if you lie to me, or even lie by omission, simply not telling me the truth about what has happened in your life, my energy for you, and my relationship with you, has changed. Sometimes this changed cannot be reversed. So before you cut someone out of a part of your life, perhaps you should make sure that you want them cut out of all of your life. Before you say words that can not be taken back, be sure that you mean what you are about to say, in all of its context. Write it out and re read it later. Practice in front of a mirror. Think about what the other person is going to hear, and how that is going to affect your relationship with that person. Listen more than you talk. This is more important than most of us think.

Today

....is the day that we say our final good byes to Donald Welch. He, and therefore his family, have suffered for many years through strokes and many medical complications. Cancer was the final straw and he is no longer in pain.

I think this makes me even more mindful of how fragile life is. To be trapped inside a body that no longer allows you to do the things you used to do. To be trapped inside a mind that is no longer healthy. Those of us that are able to tend to our own chores, self care, exercise, we are the lucky ones no matter how we feel about that particular part of our day.

My sleep schedule has changed quite a bit and I'm not really enjoying the change at all. I rather enjoy my long mornings in bed, and although I have a very busy day, I'd rather still be in the comfort of the warm flannel sheets. Instead I am starting my day, feeding cats, sorting papers and starting back to my exercise routines. It won't be long, maybe three more weeks, and I'll be able to start pushing again to see how much health I can regain. In the meantime, I am counting my blessings.

That, and a nice warm shower to wash away the last of the fuzzy brain.

Decisions

Some decisions are easy to reach, even for those of us that have a very hard time with decision making. Some, on the other hand, just take forever to make and then are filled with doubt and regret.

Yesterday was like that. There were several things that came up at different times during the day that were very uncomfortable and I certainly was not ready to face them.

For the most part, I am propped up in bed, or on the couch, with a basket of knitting, a book and my laptop for company. I'm really not good at being sick or inactive, but it is needed right now. I can wander downstairs for some food or I can get someone to bring me something. I did do a couple of loads of laundry and more a couple small baskets to begin getting ready for the Christmas wrap and pack.

My lungs are doing so much better (go take your steriod right now), but from sitting so much, my back is beginning to hurt alot. My shoulders ache and the back of my neck. These are such small prices to pay, when I remember how those nurses and doctors rushed around me, trying to get me stable and .... stay alive.

Life is fragile. Treat it with respect. Treat those around you with respect. It may be at some point that you can't take back what you had said in haste. Those quickly spoken words often destroy a relationship beyond repair. I feel lucky to be able to be surrounded by people who love me, and who I love

Getting Healthy

....is just hard work. I have so many things that I would like to be doing, but there is little I can do but sit and knit or work on my classes. It seems that because my oxygen level was so low, I am going to have some trouble thinking for quite a while, and so while I am catching up on the classes I missed while I was at my sister's house, the work is harder than it had been and sometimes I am reading a sentence several times before it makes any sense at all. I got two classes finished last night, current to this point, but on the third one I had to stop with only a few more questions to answer.

Writing is getting easier and so I know that I am doing better. I am able to think some things through and make some plans.

As I was falling asleep last night, I realized that for the first time in many years I don't Hate my life. Now, that is not to say that this is the life that I would have picked for myself, but all the same, it has settled down into a routine that is comfortable. I have plans for the future and things are going alone rather nicely.

I'd like to get back to some chores today. It is time to get some of the Christmas out and start some rearranging to make the best use of my space, such as it is. I am wondering right now how much I can do without pushing myself, and how much will have to wait for another day.

All of the people of your life have been called to you for a reason. What that reason is, is sometimes not clear until much time has passed. I have decided how it is that I will be treated, and how I will treat others. Making those changes has been heartbreaking and the changes are forever ongoing, but this is the step that my heart tells me I must take. Perhaps in the future I can take a different step and have the things in my life that I thought I wanted to begin with.

Almost Alive

Today is the first day in several weeks that I have actually felt like doing something when I got out of bed. It is so exciting, because the list of things that need to be done is of course ever growing and I am so ready to get started on it>
A shopping trip this morning should take care of the energy for the rest of the day, but I have my knitting and my classes to keep me seated and comfortable. At least I will not be bored, if restless. That's okay. From where I was, this is such an improvement.
I've finished my antibiotics and today is the first day I didn't have to rush to the neb machine for a breathing treatment before I could go feed my cats. It is such an amazing change that I have to hold myself back from being too excited.
Becca and I are going to start some of the shopping. If I can do just one family a week, I'll be fine. It will be a small Christmas from me, but that is what it is. This year is the last year that it will be this bad and I can feel corners being turned every where.
More planning. More finishing. More ideas. Just more. Period

Donald Welch died yesterday. My children and that family are deeply inpacted by a long awaited, and yet painful death. Grief is difficult. Works do not come easily. My heart goes out to each and every one of them, in different ways. One of my favorite mentors has lost her husband. They had a very long life together and I am sure she is feeling lost and over whelmed as she must face the rest of her life without him.

I'd like to get myself a car, in part so that I can be of some help to her if she should like that to happen. I know that driving has become increasingly difficult for her, and it is time for some one who has the time to attend to her needs, after these many many years of attending to her husband and her family.

Setting my "get well" schedule is going to be just a slight step up from my "sick" schedule, allowing just a bit of sewing time. Maybe two sets of an hour each. I am looking forward to things returning to something close to normal, and by the first of the year, I plan again to start game nights and social gatherings.

I am so thrilled to simply be alive!

Another ending

It has been a sad day at my house today. My ex-father-in-law was taking to Hospice late last night and is not expected to make it through the pain much longer. This is good for him, but of course not good for those left behind to fill the void and learn how to move on without him.
Brett has joined his family at Hospice, and is doing what he can to aid and comfort.
Becca is trying to keep busy, keeping the thoughts from her head. Megan, far away, is keeping in touch as she can from Japan.

I'm having a rather rough day with the stress of the season upon me, wishing that I was either further along or well enough to do more sewing. I need to be able to get many more things done, there are several people on my list that I've not even begun to buy for.

It takes rather an act of congress to get into the gift closet and sort the things that are in there. Everything was left out for me to put away so that i could settle and watch tv tonight, and that was just way too much work to do. I feel exhausted, angry and resentful. I need to get things moving in the right direction, not just saying the words, but acutallly meaning what I say and getting things done. I've already realized that I am missing a few item that I've bought and I'm hoping that they were put in the attic during the grand clean up when Sue and Bob were here.

My lungs are doing better, but this has been replaced with an ache in my back and a sharp pain in my chest. It makes doing anything at all uncomfortable and honestly, I'm ready to call it a night and wake up sometime in January.

This morning was spent doing some lists to get some of my Christmas in order, and tonight I hope to finish that and move on to actually getting something done and marked off the list.

I guess it's hard to feel like doing anything at all when the world is on hold around you

Back To Healing

The cold didn't get worse, but it certainly did affect my lungs. I ended up in the hospital at 3 in the morning, not a good night at all. By the time Becca got me there, I couldn't get a breath at all, let alone be able to talk about what was going on.
I was soon surrounded by doctors and nurses, resperitory therapy was in, EKG, heart monitor, blood draws, medication via IV, more breathing treatments, and by then it was clear that they were keeping me at least for a while.
I was moved to ICU at 5 in the morning, with more breathing treatments and more medication. Because i was the only "alert" patient on the floor, my nurse loved me and I was comfortable sending Becca home to get some rest and pick up a few things for me
By 4:00 that afternoon I was released to a regular floor where I spent the rest of the day and night, breathing getting easier all the time. It was a very scary time and I certainly recgonize that it is not over yet, but the end to this one is in sight and I think I am getting stronger.
I didn't feel that was yesterday, but after going 12 hours without a breathing treatment over night, I feel hopeful today that this won't last much longer
I came home with some many instructions and new meds, that I wrote everything on my bathroom mirror with a glass crayon. It is working really well to remind me what I have taken and what I have skipped.
I feel a little stronger today, but no more "awake" than I have been. The antibiotics must be clearing the broncitis, but everything else is achy and oh the pain when I cough.
Plan for the day: turn on my podcasts that I don't get to listen to very often and finish Liam's sweater. That will be good for me, I'm sure. I'm getting anxious to move on and start some new things, but right now I must stick to the plan for finishing and getting things done that have real due dates.
Every time I get sick, and most especially when I get this sick, I wonder if I will ever be close to 100% again and I feel like I should have followed thru and filed for y SSI. I know it is not too late to do this, but I really need to put some thought into what I want and need to be doing. This life, the way I am running it, is not working very well. There need to be some changes made, and of course, the sooner the better
Now that I am having to take so much time off to be sick, my Christmas sewing is going to have to be pushed even further to the back burner, and perhaps not be done at all this year. That would be sad, but a good inventory of the gift closest will help make that decision, and then by the time I have some money, I'll be able to make that decision for sure. There are a few small things that I should be able to make and if I work at knitting instead of sewing, perhaps all will be fine

HO HO HO