Are you a patient Patient?

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Hello Everyone.  I saw my doctor again yesterday, and I am now on an antibiotic for ear infections.  I have been a sick puppy.  I had a swollen sore throat that felt much worse than a CFS sore throat.  So maybe this is it -- me on the mend.  Thank you for all the sweet notes, thoughts, and prayers.  I am going to be trying to gradually slip back into a routine, and I hope to bring you all along with me. 

From time to time, people with chronic illnesses get viruses and other types of problems on top of The Chronic Illness, whatever yours happens to be.  It's not fun, and it can be discouraging to end up with illness on top of illness.  In fact, my immediate reaction used to be depression over such things.  It would make me frustrated and angry to have  setbacks, because  I knew it was always hard having to get back on track, which never fit my idea of what "being back" should look like.  What I found out is being angry or frustrated over having illness on top of illness does not help me get well any faster.  In fact, it makes recovery time drag even more. 

Yesterday, I wrote paragraph #1 and #2.  I suppose that was my first effort in getting back into routine;  however, I can tell you now that not much is going to happen in that area.  I am still sick, fighting infection, and my body has become weakened from all that.  I did surprise my DH last night by having spaghetti sauce on when he got home last night and the water gradually heating up for the pasta.  All he had to do was bring the water to a full boil for the pasta and cook a vegetable.  Otherwise, we would have had frozen dinners -- so glad we didn't.

Today, it is obvious that "normal" is not happening here very soon.  Therefore, I may as well make the best of it with the occasional quick cleaning of an area in the bathrooms or changing the sheets.  Dusting is absolutely out right now.  In fact, I will probably use a mask or bandanna to keep that dust out of my sinuses when I finally do it.  Quiet activities are hot around here now:  reading, watercolors and sketching, puzzles, and TV.  Going with the flow is the wisest thing for me.  

To return to what I was able to do before I got sick, I will have to take one baby step at a time.  From experience, I know it will not be possible for me to get back to my prior schedule at the same place I was.  It takes time to build lost muscle strength after a period of inactivity, as well as rebuilding energy.  I will have to work on some habits I have let go while I was sick.  That is just the way it is.  There is no point in berating myself or throwing negative thoughts in my path.  It will hinder, not help if I become obsessed with "catching up."

Final words:  it is tough when you are a mom who has a chronic illness.  I have to admit to wondering how you do it sometimes.  I realize that part of being a mom is doing things you don't feel like doing all the time.   However, having been a mom of three children, I do remember pushing myself because I had to.  Maybe, I am paying for that now:  I don't know.  When I had children at home, I was healthier than I am now.  It takes longer for me to get moving now -- that is fact.

Moms and grandmothers who are caring for grandchildren, how do you do it?  What basics of life come first in you to-do list when dealing with being sick yourself?  If you don't share, I will give you my picks in the near future;  however, I would love to hear from you.  If you do not want to leave a comment by name, email me at deborahb.blogs@gmail.com and let me know how to credit your email response in my blog:  example -- mom of 3, Birmingham, AL.

Risking The Truth

Have you ever felt like you were putting yourself out there when admitting to your own weakness?  Isn't that how it feels  when you have to admit to someone, who does not quite understand your illness, that you  cannot do something or go somewhere?

When you get to the point you have to tell someone, I  do  not have the strength or the energy to go on a trip,  take that job, go out  tonight, teach that class, or volunteer in that organization -- it often feels like a huge decision, especially if it is something you  want to do.  One finds himself pulled this way and that.  Sometimes, it feels like a weight on the chest that sits there, until one is brave enough to admit this is not something he or she can do.

And then, there is the issue of being honest to help someone who suffers like you do.  The best example I can think of is what I wrote in "Digressing from Needing a Vacation." A synopsis of what I wrote goes as follows:  when you are constantly ill for years, there are moments when you might feel like you cannot take another moment of this.  This can lead to thoughts of suicide, but suicide is not the answer.  If this is a thought that plagues you, you should have psychological counseling.  It is worth the risk of being honest to tell a therapist you have had this thought.  My preference is a Christian therapist, but that because I know a Christian therapist would understand how important my faith is in my life.  There are things in life we should not have to tackle alone.  It is not failure to see a counselor that can help you manage the thoughts you have about your life in a healthier way. That is what I  call being smart and handling your illness.

Finding peace in a life that has become a daily round of illness is challenging. It sometimes feels like climbing a mountain you can never leave or being inside bars that will not let you go.  I have felt sometimes like my body has become a prison.  However, you can learn to live in a new normal. I have written about how I find that peace in God and in letting go of negative thoughts by turning them around into positive thoughts.  

Recently, I had to admit to a loved one that I couldn't spend several days visiting.  It was hard.  I did not want to call.  I was afraid of how that person would feel and whether she would understand.  But I had to do it, because I know my body.  I know I have been more ill this past winter and not yet totally  recovered. When I made the plans, I was optimistic and thinking I would be ready.  Unfortunately, this is not the case.

I had to risk telling the truth that I cannot handle the type of trip we were planning.  At least, I cannot at this time.  It was like a weight lifted when I was truthful.  I admitted my weakness and my inability to handle what would have been a fun trip during a time of feeling healthier.  I'm not saying I don't feel disappointment over not going somewhere I wanted to go.  However, I do feel peace in having been truthful.  And I have let the disappointment go. 

I have many blessings in this life.  I think I will count those, and smell the roses.  That is life-giving or life-living for me. 

Perhaps you have heard the saying:  "Have an attitude of gratitude."  Even in negative circumstances it helps one to get through tough times to count your blessings.  There are time one feels like he or she is barely hanging on, but that is part of life.  Sometimes, if I feel depressed, I tell myself it will pass.  Also, I find something to do:  I don't dwell on my feelings.  I feel them and I try to move on to put activity appropriate to my physical condition on that particular day.  

Today, I could not get motivated, but I have had some unusual things going on this week.  I considered that and a friend said, "This would be a good time to read a book."  So, I did.   No guilt.  Then, later on I took a shower and washed my hair even though I did not feel like it.  Funny how I feel better now, and I am not feeling guilty about not cooking supper or not doing housework.  Tomorrow is another day.  The world is not going to quit turning, because I didn't fix supper or didn't do the laundry.  If it was going to quit turning over my putting something off until tomorrow, we would be in lots of trouble.

Until Next Time,

Deborah

Pacing Yourself, Resting, and Getting the Job Done in Baby Steps

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Today, I get to exercise practicing the art of slowing down.  While I write this, I think, "As if I wasn't slow enough already."  It is true that I don't see myself as speedy anymore, nor do I  accomplish everything I would always like to accomplish, but that doesn't bother me like it used to.  I have learned to accept it as part of my life, and I have learned I can still make improvements in areas that for a while, seemed impossible to change.

One of the things you need to learn when dealing with chronic illness is pacing yourself.  Sometimes, it includes uncomfortable attempts to change one's upside down schedule to a more normal one.  When I woke up today, after only sleeping about 5 hours of only partially restorative sleep, I decided to make another try at staying awake and going to bed at an earlier hour than usual.  Have you ever tried to do something like this?   It may or may not work.  Unfortunately, my night owl tendencies tend to override a normal daily schedule with the fact, I often lie in bed wide awake, even when all I want to do is sleep.  I have found different ways to compensate, and I have gotten to the point in my life, it is not worth it to agonize over a weird schedule.  It is what it is.  

However, once in a while, I have to try to normalize my schedule to fit in with some of the scheduled activities I want or need to do.  If it works, great!  If it doesn't, I am not  going to be miserable and guilty over something I can't help.

The second thing I want to mention about pacing is knowing when to say no to work.  Sometimes, we feel like we have to force ourselves to do things, even though our bodies are drained and the very thought of work is almost painful.  The bone deep fatigue is something we can feel gnawing at our muscles and nerves.  Our cells are depleted of the energy they need to function normally.  Sometimes, it hits us unaware.   And there are times, it is not surprising at all.  

However, even though the fatigue is there, we know there are things that need to be done.  Only  you can decide what is important.  If you still have children that live at home, then sometimes you have to push through to get something done.  However, you need to remember that when you give in one area, you will have to let something else go.  Otherwise, you could end up where I was a few years ago, which was on empty--able to do nothing.  And I have never been able to fully recover.

If you have been following this blog, you know I have been trying to make our house less cluttered, as well as making it a welcoming, comfortable home.  I have had to contend with dark walls and changes that were not in my former home, which was newer;  and, it is even more challenging with my disabilities.  However, I have been taking baby steps, and I am seeing changes that help improve our surroundings and my motivation. 

It seems to me that getting started is often the hardest thing to do, whether you are ill or not.  But if you take the first step you can usually take another one, and then another one.  And the wonderful thing is that the first step can be as small as putting one thing away or cleaning for one minute.  The pre-step can be visualizing what you are going to do, and how you are going to do it.  

1.  Yep, looking really bad.

That is how I got this sideboard cleaned  off -- one baby step at a time.  In fact, I have more to do to complete the job:  I want to decorate.  But I have done the hardest part for me, which was to clean it off and not just shove things into a bag or box, and stick it in a closet.  It took me about two months to get this done, because I have been working on the whole dining/work room

3.  Here, I have a nice clean palate to work with.
I see  endless possibilities.  Woohoo!

2.  It's better, but very dusty and there
are those icky little pieces of paper  to
go through -- not my favorite thing.

Finally, I want to end with how I am pacing myself.  Today, this sideboard and wall does not have to have objects placed on it.  In fact, every time I walk by it, I can enjoy the uncluttered surface and anticipate with enjoyment the thing I like better  than cleaning, which is decorating.  Moreover, I think I may still have a couple of boxes that were never unpacked from moving.  Next week or sometime this weekend, I might have Christmas in May and discover what is in one of those boxes.  Delicious anticipation...  Will it be something that looks good on that wall or on the sideboard?  What fun it will be finding out!

One final word:  I believe you can learn to do this.  I have not gotten to this point overnight.  I have been working on rebuilding good habits and learning new ways to get the job done over a period of years.  It took not being able to do anything for me to learn how to do things in  baby steps, and to give myself a psychological break.  Be kind to yourself:  do what you can and realize tomorrow is another day.  We are building habits.  That does not happen overnight.  

God bless you and have a good weekend.   

Frozen, But Melting

Honesty, my policy of truthfulness to myself and others
Is not what I want to think about,
Because I will begin to doubt
         
             Me.

Frozen in a sludge of half-desire to jump in and Be, 
I wonder how I manage to get to this 
Point of having to push myself to get anything done.

I know what to do, but since I kept falling asleep
Today, after an uncomfortable bout of intestinal flurries,
I seem frozen to my chair.

And I wonder if other people are like me, 
Sometimes frozen, sometimes bustling in flurries of useful activity, 
Sometimes only able to get one or two things done,
And that has to be enough.

At least I got dressed and combed my hair, 
But I never put on my shoes, 
My fuzzy, warm socks caress my feet,
Leave me feeling relaxed and comfortable.

So I will accept these moments, knowing when I'm patient,
I escape the ice that encapsulates me.
Each small chip in it brings me closer to the me I like best.
I don't have to get depressed and cut myself down.
As the ice melts, I move a little more.

Self, talk nicely to me.  I needed a break.
My eyes are closing again, as my fingers
Rest on the computer keys,
C's and brackets cover my page...
cccccccccccccccccccccccccccccccccccccc[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[

Where is that light load of laundry?