This Heat Has Got to Go and I Need My Mind Back

I had forgotten how much the heat bothered me last year.  Today the high was in the upper 90s and our a/c isn't working well. During the middle of the afternoon, it was 87 degrees in the house and the outdoor temp was 92.  All I could could do was lay in the bed with the ceiling fan and a floor stand fan blowing on the bed.. As I cooled down, I dozed off and slept really well. When I woke up my pain was still around a Level 4: The pain is getting stronger, you are taking more OTC medications but they don't last long. You begin to cut back on your activities in favor of just sitting down.

I am feeling so much better that I'm afraid I will over do it trying to get caught up with the things that were left undone last week when I could hardly move.  That's one of the hardest things about this collection of diseases that I have.  A good many of us with fibro are overachievers who are accustomed to having a spotless home with a place for everything and everything in its place.  I was one of those people. I had a housecleaning plan where I scrubbed the bathrooms three days a week and cleaned my baseboards every three months. That's no longer possible and it is really hard to accept.  I'm use to being the woman who could do it all.  There's no way I come even close. 

I have a long list of things I need to get done in the next few days. Ten years ago, I would have been able to get it all done in one day and throw in a couple of loads of laundry that I would fold and put away. (Currently there are two loads of laundry on the couch that we've been going and pulling what we need from.  I hate that.  Remember "a place for everything and everything in it's place?")  

On my to do list is sorting through a huge stack of medical bills, figuring out which ones are duplicates and making a good list of what we actually owe.  I'm sure in the stack I'll find other bills that I may or may not have paid. My cognitive problems have gotten so bad that it's not unusual for me to not discover that a bill is over due until the collectors start calling. Because of the problems this has caused in  embarrassment, late fees and bank charges, my precious husband is taking the job of paying the bills and balancing the checkbook.  Before I hand it all over, I feel responsible to sort it all out so that he can figure out what questions he has for me.  It will also make it easier for him to figure out where to start to get it under control.

I was looking for some information to help me not feel so frighten about the memory problems I'm having.  I did a Google search and came across information on the Mayo Clinic.  I'm not sure how I feel about it because it paints a pretty negative picture of what I have to look forward to l.  Here's what I found:

According to the Mayo Clinic website, your brain changes as you grow older just like the rest of your body. Many people notice gradually increasing forgetfulness as they age. It may take longer to think of a word or to recall a person's name.  But consistent or increasing concern about your mental performance may suggest MCI. Cognitive issues may go beyond what's expected and indicate possible MCI if you experience any or all of the following:

• You forget things more often.
• You forget important events such as appointments or social engagements.
• You lose your train of thought or the thread of conversations, books or movies.
• You feel increasingly overwhelmed by making decisions, planning steps to accomplish a task or interpreting instructions.
• You start to have trouble finding your way around familiar environments.
• You become more impulsive or show increasingly poor judgment.
• Your family and friends notice any of these changes.

The article went on to say that if you have MCI, you may also experience depression, irritability and aggression, anxiety and apathy.  I don't have any aggression problems but I definitely have all the others.  I hate to admit it but I am so overwhelmed when it comes to too little money and and too many bills.  I am so discouraged that I can't come up with any ideas on how to manage our money or keep the house clean.   I have often said that Fibromyaglia has changed my life as I knew it.  When I've said that I was talking about it had changed my life physically.  I had no idea how much it was changing my life from an economic and organizational standpoint.  Stress and worry causes Fibromyalgia to worsen and I can see that happening a good deal.  I'm not sure what we are going to do.  My prayer is that Bill will figure out how to get this mess unraveled and everything will ok.  

It's taken me almost three hours to write this so I'm going to bed.  If I didn't have time to write about my other tasks for tomorrow the odds are I'm not going to get around to doing it.tomorrow.. Tomorrow night I'll have to update you on what I got a accomplished and what I need to do do Friday.j 

Cynthia

 

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My Body Hates Mornings!

This morning I got up at 8:15, made my husband's lunch, kissed him goodbye and said a prayer for his safe travel. It's my morning ritual when I'm physically able to do it.  For some reason, I broke part of my ritual by not going back to bed after he left and now I'm exhausted.  Last night I only had about 8.5 hours sleep.  To function at an acceptable level I need 10 - 12 hours. I call it my morning nap although I'm sure that's not the correct term.  Usually I've only been up about 30 minutes before going back to bed.  Now that I seem to have the correct medication regime, my mornings have gotten better and I'm so grateful. My morning pain now is a Level 3 or 4, so much better than the Level 7 or 8 and a huge difference form the Level 9 or 10 that I experienced in March, April and May of 2009.

When I was trying so hard to continue working, I would get up early enough to get ready with time left to take a short nap in order to have the necessary energy just to get to work.  Most mornings that plan didn't work too well because I still had the pain from the day before.  The pain never went away. The severity of the pain (Level 7 or 8 that eventually became Levels 9 and 10) was such that I would lean on the kitchen counter, trying to find a position that would ease the pain enough that I didn't throw up just to get to the car to leave home.

Bill's hours are 9am - 6pm.  I hate that he gets off so late. it takes away from our together time and causes us to stay up too late squeezing in a few more minutes.  If his start time, was earlier I wouldn't be able to get up with him.  As long as I'm not in a flare, I'm able to get up around 8 or 8:15 to have some time with him.  He's usually already had breakfast but I enjoy making his lunch and pretending that I'm able to be a good wife.  God blessed me with a wonderful, loving, caring, God fearing husband.  Without him, I'm not sure where I would be today.  What I do know is that my quality of life would be much less.  He never complains about having to take me to the doctor because I can't understand or remember what the doctor says. He doesn't complain when I'm not able to do something we had planned or when he picks up my nine (9) prescriptions at the pharmacy.

By around 11:30 this morning I had only been up for three hours.  My pain was awful and didn't seem to have any interest in going away despite the meds.   Today's pain started at a Level 6. (You simply cannot ignore your pain for even a few minutes. Prescription pain medications provide you with limited functioning abilities).  Now it's down to a Level 5, (You can't ignore this pain for more than an hour, even with OTC Medications. You cut back of all activities except the most important ones. Work is possible, but just barely.)

I had much more to do than I was able to accomplish.  It was all simple things - make a spreadsheet my meds, fill out a form for my LTD insurance company, make a list of things I'd like to blog about on my Apple Creek Cove blog (I'll talk more about it later) make an appointment for physical therapy and a Physical Abilities and Limitations Evaluation.  I wanted to sew.  Sewing calms my nerves and gives me a few minutes of feeling like I can still accomplish something.  Did you noticed four of the six things on my to-do list were illness related.   I'm beginning to believe that being sick with a chronic illness is a job in itself.  :-)

Cynthia

P.S. I just noticed that this posted with the time I started this morning.  It took me until 6:15 to finish with taking breaks from sitting, eating lunch, and taking a short nap.  :-)

Good days, Bad days and Learning to Adapt: September 10 - 17, 2010

This past week has been one of ups and downs much like the week before. Tuesday we went to visit Bill's mother but my legs were hurting so bad that I sat in the car and napped while they shopped at Walmart.  I knew I would never be able to make it through the store.  Friday I had to go to the store if we were going to eat and I was exhausted from the walking when I finished.  Had I remembered to get one, I would have used one of the motorized carts but I didn't remember until I was halfway through with my shopping and wondering if I was going to make it to the check out.

Mornings are beginning to be harder again as the temperatures are beginning to drop into the 40s at night.  When that happens, I can barely move until it warms up around noon. Late evenings are beginning to be hard as well because as the temps go down, it gets more and more difficult to walk.  To say that I walk like an old lady would be an insult to old ladies!  Most of them walk better than I do. 

I've tried to accomplish as much as I possibly can during these good weeks.  I hope to have a few more because I'd like to accomplish a little bit more before winter weather shuts me down for a while.  I'm setting up a dedicated sewing room so that I can feel like I have somewhere to be productive.  It really helps with the depression to feel like I can contribute something to the household even if it's just sewing my own clothing and gifts.

With fibromyalgia, neuropathy and arthritis, it's all about finding a new way to do things that is less painful.  I say less painful because there is no such thing in my life as pain free anymore.  Hand sewing is difficult because of  the arthritis in my hands.  Thank goodness for my sewing machine.  Using scissors is difficult these days as well but I've learned to use a 60mm rotary cuter to cut most things. I have a smaller one that I can use when my hands are not quiet as bad.  Last year for Christmas, Bill bought me a new sewing machine that can be operated without a foot pedal.  I prefer to use the foot pedal but on days like I've had this week, it's nice to have that option.  I spent most of the last week feeling as though my legs were on fire under my skin.  My feet were numb and had the pins and needles thing gong as well as "falling asleep" so that I couldn't feel the foot pedal.  Being able to sew with the push of a button was good.  Anything I can do like that helps with the depression.  I WANT to be a productive member of society.  Unfortunately, MY BODY WILL NOT cooperate.

As I type this, my right hand is swollen and hurts.  Especially the middle finger. That poor finger hurts so bad and is swollen much more than the others.  The knuckle closest to my hand (is that one the first knuckle?) is so large that I can't straighten it out. Holding a pen or pencil is out of the question. Typing is painful but not as much because I've learned how to hold my hands to cut the pain some. 

Memory becomes a bigger problem every day.  I've pulled out my Daytimer from my working days to make lists in one place in something that's easy to find .  I've also started putting  notes from important phone calls there as well because I forget what arrangements, etc.  I've made about our bills and that kind of thing.  I've got notes in my phone too.  The notes in my phone have kept me from buying patterns or supplies that I already have more than once.  There's a reason that pattern was cute - I've already bought it.  Yes, I did need a 3" block template - last month when I bought it.

It's time to rest my hands because my pain is up to a 7 or 8 from writing this.  Thank you for sharing my life.

September 30, 2010 - Pain Level 9

Where did September go?  This week has been full of me realizing it was the end of September. The house note had to be paid by the 29th and even though I had reminders written down in several places, I almost forgot to pay it.  The only way I remembered was that I looked on line at the bank account and saw where my LTD check had been deposited and I knew that it had to go to pay the house note.  Yes, house notes are usually due by the 15th.  However, when fibro fog and cognitive problems are running rampant, you tend to forget things.  Well several months ago, I completely forgot to pay the house note. Yep, didn't even think about it until the mortgage company called and asked if we'd like to continue living here.  Fortunately, they were really good about working out a way for us to get caught up over several months and allowed us to make the payment each month when my check came in. 

My next realization that it was the end of  September came when I realized the light bill was due October 1 and that was Friday!  My pain level is so high today because it's been a very long, humiliating and humbling day with me either sitting for hours stiffening up or standing and causing my legs to start swelling.  Because I can't work and my LTD is only 50% of what I made and medicine had to be purchased to the tune of almost $500 this month, we can't pay the light bill.  There's just no way to make less than $50 pay a $550 light bill.  So this morning I was at a local agency by 7:30 to get in line for my chance at part of the funds they have to help the many people that need it these days.  Mornings are my worse time of the day. I can barely walk normally.  Picture the shuffling feet of a 90 year old woman.  That's me in the morning.  I got there almost on time and then proceeded to sit for over 2 hours.  We were packed into the waiting area so tight, there was no getting up to move around.  This resulted in the little old lady shuffle being even worse when I was called back because I was still stiff.

As the social worker was interviewing me, I could tell by the look on her face that I was not making sense. I stopped talking, gathered my thoughts and explained my problems to her.  She understood and we started over with her talking slower and me stopping to think about how I was going to answer before I opened my mouth.  That was much more successful. 

So here I sit stiff and hurting and hoping that tomorrow is a better day in more ways than one.

September 4, 2010 Pain = 7

Today was fairly productive.  I was actually able to get out the door by 11 am.  Not bad considering I didn't get up until 8. It only took me two hours to drive 4 miles to the bank, make a deposit at the drive up window and then go to Walmart and pick up 6 items.  By the time I got home, my head was pounding but I stayed up instead of taking a nap so that maybe I can get my sleep pattern back on schedule.  My biggest accomplishment for the day was that I was able to  sort my button stash by color and match up sets if I came across them. 

Keep in mind that I got up at 8 am.  It's now 2.23 AM and I am just now beginning to get sleepy enough to go to bed and hopefully fall asleep.  I just don't understand how I can sleep 18 hours one day and the next not be able to fall asleep for 20 hours or so.  I did take advantage of being up and have showered and washed my hair for church in the morning.  Since I'm up so late, I'll need have as much prep done as I can to get there by 10:45.  Bill's ushering and I really want to go to church.  So I have to be ready to leave by 10:20 because ushers can't be late.  I don't want to take two cars because I think it's a waste of gas and because I am cutting back more and more of my driving because it's beginning to be difficult with the cognitive function problems

Good night all.