I'm Back! I Hurt! What's New?

I can't believe that I've not posted since January 14!  So much for part of the life changes I had planned. I did a update on how they are coming along over on Rambling Thoughts of a Southern Lady. 

It's been crazy around here since Thanksgiving. I wrote about some of it  here and here.

Between the holidays, kids coming to visit, sinus infections, a reaction to a new drug, the flu and the stomach flu, not much of what I planned has actually happened.

My pain has gone up and down much like a kid's see saw.  It's been a Level 4 and it's been a Level 9 it even hit Level 10.  Sometimes it's been at both ends of the scale in a 24 hour period. I can't take the flu shot because I had Guillain-Barre Syndrome when I was 14 but I've been blessed to not have had the flu for several years.  This year I got the flu.  For about 4 days my pain stayed between a Level 7 and Level 9.  I probably could have taken more medicine for the pain than I did.  Since I was also taking antihistamines in an effort to try and open up my sinus passage and I was home alone much of the time, I was afraid to take much more that my normal.  I would rather hurt and still be here to see my grandchildren grow up than to take a chance on mixing the wrong medicines or amount of medicines.

About a month after that I got the stomach flu that was going around.  I woke up one morning and felt pretty good and I was loving that.  A couple of hours later I took Mr. Supportive to work so that I could have the car to run errands.  The errands didn't happen.  I suddenly felt nauseous and got my window down just in time to deposit breakfast down the side of the car in the parking lot where he works. Right outside the big double glass doors.  The doors that his co-workers were standing at watching the morning unfold and drinking coffee. Of course the guys came running out to see if they could help.  Sigh... Talk about wrong time, wrong place.

I headed home and made it about 3 blocks when I knew I was going to be sick again.  Since I knew the Goodwill store had a clean bathroom, that's where I went.  I grabbed a washcloth off the rack on the way to the back of the store.  Thankfully I was able to make it into the bathroom and wet the washcloth before I got sick again.  After what seemed like forever, I was able to pay for my wet washcloth (or at least I hope I did), get to the car and make it home before I was sick again.  Once again my pain was up between a Level 7 and a Level 9.  After I had been home for a little while, it hit a Level 10 that I hadn't experienced since 2009. Between the pain and throwing up more than I did in both my pregnancies combined I barely moved for almost a week.  I was in a lot of pain when I had the flu but it was nothing like this.  This was the pain that I had before I was prescribed any kind of pain medication but this time I was having it taking 60 mg of Kadian every 12 hours and 30mg of morphine every 3 or 4 hours.


But as the saying goes, this too shall pass and it did.  It took me a while to build my strength back up but I did and started getting back on track.  For a while...

This is where this part of the story ends and a new chapter begins.

 

Guess what? I'm hurting.

Today has been a rough one.  I didn't fix Bill's lunch this morning. All I did was let the dog out, take my morning meds, kiss Bill good bye, let the dog back in and I was back in bed.  When I finally got up from my morning "nap", I had to go to the bank and post office.  I like my routine of only running errands once or twice a month. My plan had been to get this stuff to the post office yesterday when Bill was off work to take it for me. Of course, that didn't happen.  With the holiday coming up I knew that they really needed to go so off I went. 

This was not the day for running errands.  My pain level had gone down during the night to 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.  Level 5 was an improvement over the Level 8 it was when I went to bed last night.  My bad days seem to be becoming more severe and more frequent. I really hoping that this is not going to be my new norm but is just a stage. Only time will tell.

I've been out of bags for my homemade bread and decided to stop by Walmart and run in real quick (not literally of course) to pick some up. Thankfully there was a handicapped parking space empty but when I got inside,  there were no motorized carts. Of course, what I needed was in the very back of the store but at least I was on the right side. I grabbed  a cart and set off on my trek. I looked at the bag size but I was so tired and the pain was going up so much that it didn't register with me that the size wasn't right.  I figured that out when I got home and tried to put a loaf in them.  The "old" me would have gone back to the store and looked for the correct ones.  If they didn't have the right ones, I would have gone to every Walmart around to try and find the right ones.  These days I will wait until the next time I get out and hope that I remember to look for the right bags.

By the time I got home, my pain was up to a Level 6: You simply can not ignore your pain for even a few minutes. Prescription pain medications provide you with limited functioning abilities. I took a nap and then got up to spend some time with Bill. I'm headed back to bed.  I should have been in bed 3 hours ago but  it's taken me almost that long to finally get this written. I'm determined to get a post a day written.  

My prayer is that I will be able to sleep until my body wakes up on its on tomorrow.  Hopefully my pain will go down a little bit more and I can get something accomplished tomorrow.

 Good night all.

Cynthia

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.  :-)

Finally! A Pain Scale that Makes Sense for Chronic Pain Sufferers

Since my Fibromyaliga has worsened my idea of a “10” on the pain scale has changed dramatically.  What I defined as a “ten” five years ago is so far from a “ten” today.  I was a pain “baby”. A paper cut would drive me to the point of tears.  As my disease has progressed (and yes, it does progress) my pain levels have become so high that it’s hard to arbitrarily assign it a number.  When I visit my pain management specialist, she has a form that we use to show her where our pain is.  It has a line drawing of a body (front and back) and we are to mark where our pain is and how we rate the intensity of our pain.  Most of the time, mine looks like I’m been “coloring” the body with my pencil because there is not one part of my body that does not hurt.  There are some areas that are worse than others but for the most part my entire body is racked with pain 24 hours a day, 7 days a week, 365 days a year.  The hardest part of answering any questions about my pain level is assigning my pain a numerical rating.

We’ve all heard the “rate your pain on a scale of one to ten with ten being the worse pain you’ve ever experienced.”  I often wanted to ask “today”, “this week”, “this month”, “this year”?  Some days it could be “what hour”?  According to About. Com the Numerical Scale is designed to be used by those over the age of 9. The numerical scale gives the user the option to verbally rate their scale from 0 to 10 or to place a mark on a line indicating their level of pain. 0 indicates the absence of pain, while 10 represents the most intense pain possible. In theory, this Numerical Rating Pain Scale allows the healthcare provider to rate pain as mild, moderate or severe, which can indicate a potential disability level.  Pain scales are subjective.  Remember when I said I was a pain “baby”?  Five years ago I would have said that an ankle sprain was a 10.  Comparing that ankle sprain pain to my daily Fibromyalgia pain, Myofascial pain, Chronic Fatigue pain, Neuropathy pain and the pain from my edema when it’s exacerbated knocks it down to a “1”.  I have to wonder how  “Severe” can cover four numbers? Are there stages of “Severe” that I’ve not heard about?

The Wong Baker Faces Pain Scale combines pictures and numbers to allow pain to be rated by children over the age of 3 and adults. The faces range from a smiling face to a sad, crying face. A numerical rating is assigned to each face, of which there are 6 total. I laughed out loud when I read the notes below the faces.  I literally can’t remember the last time my pain was a “2” and forget about a “0”. Like the numerical scale, it’s so subjective.  I can’t remember having anything but an “8” or a “10” going by this scale. Believe it or not, I can be at an “8 – Hurts a Whole Lot” and my pain can do their definition of a “4 – Hurts Little More.”  It’s not unusual at all for me to be “Hurting a whole lot”, then  “Hurt a little more” so that I hurt worse..

Chronic pain suffers need a reliable pain scale to convey to their pain levels to medical providers.  When my brain fog isn’t too bad, I like to do research on my illnesses. Recently I came across the fibromyalgia pain scale below at. FM/CFS/ME Resources. This Fibromyalgia Pain Scale gives a “definition” for each number, eliminating the guesswork that is involved when attempting to use the Numerical Rating Pain Scale or the Wong Baker Faces Pain Scale.  I’ll be using the FM/CFS/ME scale in my posts.

Here's the FM/CFS/ME pain scale:

Level 1: You experience very minor pain in parts of your body. You don't have to take any pain medications and you can do your work with no problems. 

Level 2: The minor pain has increased to dull aches in some parts of your body. You don't have to take medication and you still can work as usual. 

Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications. 

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. 

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. 

Level 6: You simply can not ignore your pain for even a few minutes. Prescription pain medications provide you with limited functioning abilities. 

Level 7: This level of pain is the kind that keeps you awake at night, makes it hard to think and act. Your prescription medication only dulls the pain for a short time. You limit your activities in order of importance. You really can't work well. 

Level 8: This is serious pain. You don't want to do anything or be bothered by anyone. You have taken so much pain medication you are unable to fully concentrate on anything. Work is out of the question. 

Level 9: Very serious pain here. You can not concentrate on anything but pain. You should not do business transactions or make any important decisions because of your limited mental state. You can not go to work and you shouldn't drive a car. At this point you begin withdrawing from the world around you. 

Level 10: Pain has made you totally unable to function. You don't want to deal with or talk to anyone. Even with narcotic pain medications you are still in horrible pain. You go to bed or go to the emergency room for any help you can get. 

I like this pain scale because I can say that my pain is “only a 3!”  Those are the days that I wake up and go “Wow!  I feel pretty good” in the way that people without chronic pain would go "I feel awful".  It’s on those days that I try to do my errands and get as much housework done as I can without overdoing it. There’s a problem with having a Level 3 day.  They are so few and far between that I tend to do as much as I possibly can because I don’t know when I’ll be a Level 3 again.  Because of overdoing, a day that starts out a Level 3 can become a Level 6 by the end of the day.

My normal everyday pain level varies from Level 4 to a Level 8. I realize that is a wide range but Fibromyalgia, Chronic Fatigue and Myofascial Pain can cause a wide range of pain. It’s unpredictable and uncontrollable.  It can literally change in a 15 minute period. I’m sure as you read my posts over time there will be a day where you’ll see that change.  It can change because I over do it or for no reason that I can figure out. It’s life with chronic pain.  Throw the peripheral neuropathy in and well… this post is long enough but I’m sure we’ll talk about it soon. That’s just the way my life is. 

Cynthia

September 20 - 24, 2010 - Pain Levels been up and down

What a week.  I can't believe that it's already Friday!  This has been such a strange week.  Sunday we dropped my Kadian prescription off at Kroger and went by Monday to pick it up.  When we got there, they had not had enough to fill the prescription and had to order some more.  (Note to self - turn prescription in 7 days before I need it.)  I was really disappointed because a) I only had enough for one more day and b) they always have it in stock.  I took my last dose Tuesday morning.  I had finally gotten my pain to being manageable but without the Kadian it started creeping back up Wednesday. I spent all day Wednesday in bed because by mid afternoon the pain was up to a 10+.  As long as I was laying down and dozing, it wasn't so bad.  Being up and trying to do something was not good.  Thursday I was determine to make it to Bible study and I did, 20 minutes late.  Showering and getting dressed required that I lay down and rest between the shower and dressing and then after I dressed.  Thursday night Bill picked up my prescription on the way home from work and I took one as soon as he handed it to me.  I had another one this morning and the pain is going back down to a decent level.  I forced myself to do some grocery shopping today because we had hardly anything left in the house.  It took me forever to pick up the few things we needed. I'm headed to bed now and will take another pill before I do.  Hopefully once I get Saturday morning's dose on board the pain will go down considerably. 

This week has been so reminiscent of my last months at work.  There is no way to be dependable with this hideous disease that hides itself from public view but yet wreaks such havoc on our lives.  I started getting ready for my 10:30 Bible study at 8.  It took me 2 1/2 hours to get ready to make the  15 minute drive to the church.  This was how it was when I was working.  I kept having to get up earlier and earlier to try to make it there on time.  The problem was that my fatigue level kept going up and in order to get enough sleep to be rested enough to get up in time to be on time to work, I would have had to go to bed before I ever left work!  I need at least 10-12 hours of sleep because of the Chronic Fatigue.  To get to work at 8:30 meant getting up between 5 and 5:30.  I certainly didn't ask for all of these disease/syndromes that I have but I have to make the best of the life God has given me.  I just wish there was a way to make a decent wage working from home, using the hours that I am most productive and not having to go by someone else's rules.  Unfortunately, even if I could find that job, my cognitive problems wouldn't allow me to learn the new tasks that I'd have to learn.  But the memory and comprehension is for another day when I can actually remember how those problems affected my day.

September 10 - Pain Level 10+

This is going to be short and to the point.  I hurt something awful. My pain is off the scale.  I hate this disease.  I hate that I had a good time with my son yesterday and now I am in so much pain I can barely move.  Why is it that if we try to live a "normal" life we are wracked by pain so bad that we can't to anything for days afterward?  All I'm asking is to not have to live the life of an invalid.  All I want is  to be able to participate in life and enjoy it and not "pay" for it afterward.. 

September 9, 2010 - Pain level = 7

My son picked me up this morning for us to go to see the ribbon cutting for the new Engineering building at Jackson State University.  He's a Civil Engineering major.  After the ribbon cutting, we walked over to the student center and bought a soft drink so that I could take my pain pill.  I started out doing pretty well but then the pain in my right knee and hip started going up. The pain got up to about at 9 or 10 but the pain medication helped bring it back down to about a 7 or 8. When I got back to my daughters, I took another pain pill and a nap.  The nap helped a little and kept the pain down around a 7. It's still around a 7 so no playing with the grandchildren tonight.  :-(  My feet and legs are swollen horribly and so I'm wearing my compression hose.  Trouble with that is that my most severe myofasical pain is where my legs swell the most making the hose extremely tight.  My legs were hurting so badly, I had to take the hose off and cried taking them off they were so tight and painful.  I'm headed to bed now and I hope that when I wake up in the morning, all my pain  will be back down to a 5.  It's so sad that my "normal" is considered to be bad pain by most people.