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.

 

Checking in

It's been a while since I've posted.  It's been a combination of feeling like I've been hit with a Mack truck or being busy trying to catch up from being run down by said truck.  I was getting back to feeling like I'd been run over with a Volkswagen until the rain and cooler weather hit yesterday.  Oh my!!  When it hit it was quick and viscous. My pain went from my normal Level 5 to Level 9 in about 15 minutes. I was out running an errand and thought I was going to have to call a friend that lived close to where I was and see if I could veg on her couch until Bill got off work and could come pick me up.  I decided that I wanted my own bed and made it home driving slowly and on the back road.  Went to bed and only slept about 4 hours but it was enough to keep me up all night.  I've been up since about 8:00pm Wednesday night with the exception of about 2 hours this afternoon.  I'm headed to bed now to hopeful sleep more than 2 hours. 

Check out Apple Creek Cove, my blog where I'm going to attempt to write about ways that I've found to be able to maintain a semi normal level of domestic bliss in spite of my Fibromyalgia, Chronic Fatigue Syndrome, Myofascial Pain Syndrome, Peripheral Neuropathy, Peripheral Lymphedema, Sjogren's Syndrome, Arthritis, four herniated discs, Carpel Tunnel Syndrome, short term memory loss, sleep apnea and depression.  (I need to check my doc's notes because I feel like I'm leaving something out of my collection of diagnoses.)



As I head off to be at 4:13AM, here's my final thought for Thursday:

Fibromyalgia, Lymphedema and Loneliness

My legs are swollen slightly larger than the one on the right.

 I think I've mentioned before that this summer's heat has been really hard on me. I was recently diagnosed with Lymphedema and it has been "introducing" itself to me. My legs and especially my ankles are so swollen that I can barely walk. I'm afraid that they are going to start weeping any time.  The first time they weeped it scared me but I've gotten use to it.  When they would swell so badly in the past, I would often think that it would make them feel so much better if I could just stick a pin in them and relieve the pressure.  I was right, it does take some of the pressure off but too much of a "good thing" can be scary.  Mother's Day I was sewing and felt wet floor under my feet.  It took me a minute to figure out what was going on.  In the mean time a puddle had formed under both feet on my chair mat.  Had a measuring cup been handy, I feel sure I could have captured enough to  measure. 

My doctor has not yet addressed the weeping but I am concerned because everything I've read warns against having any kind of opening in the skin. I looked up Lymphedema on the Mayo Clinic site and this is what it said:

 The reddened skin or rash on both legs (that's me) may signal a deeper, more serious infection of the inner layers of skin. Once below your skin, the bacteria can spread rapidly, entering your lymph nodes and your bloodstream and spreading throughout your body. Recurrent episodes of cellulitis may actually damage the lymphatic drainage system and cause chronic swelling of the affected extremity.  In rare cases, the infection can spread to the deep layer of tissue called the fascial lining. Flesh-eating strep, also called necrotizing fasciitis, is an example of a deep-layer infection. It represents an extreme emergency. 

Isn't that just lovely - NOT!!!! It's hard to rate the pain from the Lymphedema but if I had to assign it a level, I'd pick Level 2.  It doesn't hurt a lot but it is very uncomfortable. If you had asked me 5 years ago if there was a difference between being in pain and being uncomfortable, I'd say there wasn't one.  Where my ankles are so tight from the swelling, I feel like my skin is going to burst open in the creases when I stand up and walk.  My Fibromyalgia pain is a Level 5 right now.  I'm ok but I have to take my breakthrough pain meds.I hate it when I have to do that.

Fibromyalgia causes so much loneliness.  Merriam-Webster defines lonely as being without company (lone), cut off from others (solitary), not frequented by human beings (desolate), sad from being alone (lonesome) and producing a feeling of bleakness or desolation.  Fibromyalgia leaves you feeling all of those things.  Fibromyalgia produces all those feelings.


When you are unable to move around much on your own, you pretty much stay housebound.  It gets the point where you don't want to leave the safety of your home.  I'm home alone five days a week except for the occasional trip to the grocery or drug store.  It's just too hard to get out and go somewhere alone because the pain won't let you have a good time.  

I worry about getting out and becoming too weak due to the pain to make it back home on my own.  My fibro fog makes me be unsure of my ability to make it where I'm going and back home again because I've been out before and not remembered how I got where I was going or how I got back home.  I'm a homebody by nature but this is different.  I can choose to stay home and enjoy it.  I love the amount of sewing, reading and that type thing I get done with it's just me and my sewing machine or me and a book and I enjoy it.  Now, I'm not making that choice and it makes me incredibly lonely.  Its another thing that Fibromyalgia has changed about m y life.

There's another kind of loneliness that comes from your friends (most of whom you discover are more a casual acquaintance  rather than a particularly close friend).  These are the people who prior to your health and your ability to be out and about diminishing, you went to dinner with or "painted the town red".  At first, they still call and invite you like they always have.  As you have to decline their invitations more and more or have to cancel plans at the last minute, their calls become less and less frequent until they stop coming completely.  Your acquaintances don't realize that you do have good days and can get out and have fun.  We may not be able stay out as long as we once did but we would have been out with our friends.  For a short time, we would have been “normal” again. Your real friends, still keep calling, real friends come over and just sit and talk.  Real friends even come over to clean your house and fix dinner for you.

Some don’t understand what Fibromyalgia is and the limits it puts on our bodies. Others do not believe that how bad the pain and fatigue is and call us lazy.  No matter the reason, they don’t know what to say so they treat it like any other uncomfortable situation.  It’s easier for them to avoid the situation than to take the time to learn about our illness.  I prefer to think that most would feel bad if they knew how hurtful their actions were but it’s more likely that they wouldn’t.  This illness weeds out your true friends from acquaintances.

There’s one last group that causes loneliness, emotionally attacks us and treats us as if we are hypochondriacs, lying or are drug seekers.  This group is nothing like the others.  Friends and family can be in this group but most are members of the healthcare profession - the ones that took an oath to do no harm and to work to heal their patients. Often these so called professionals are the most hurtful of all the people we encounter.  There are no tests, scans or x-rays to verify a diagnosis of Fibromyalgia.  Too many healthcare professionals refuse to admit that a condition exists if they can’t find it using technology.  Most are unwilling to accept pressure point testing as verification. I don’t understand why. I believe that a good diagnostician would be able to tell if someone was “faking” it.   Real pain is hard to hide and hard to fake. Many times I’ve told friends and family that I’m fine only to have them tell me I didn’t look fine so tell the truth.  Real pain shows in your eyes and on your face.   Surely doctors are taught how to recognize signs of pain in their patients. 

It’s important to become your own best advocate when dealing with physicians. Not only will it benefit you, it will help other Fibromites (those who suffer from Fibromyalgia) that come after you.  Fibromyalgia is a real disease and the pain is real. Do not settle for a doctor who does not take you and your pain seriously. You deserve to have your pain properly treated.  There are doctors who will believe you so never stop looking until you find a doctor who will work with you and treat your illness correctly and aggressively.  I’ve learned that just because a doctor is a specialist in something that doesn’t seem to be related to Fibromyalgia, he/she can be excellent at managing your Fibromyalgia. My awesome pain management doctor is a psychiatrist who switched to pain management exclusively.  When I was referred to her, I was afraid it was my doctor’s way of telling me he thought I was nuts. The Tramadol he had prescribed was no longer managing my pain even taking double the maximum dosage.  I was so desperate for help with the pain that I went to see her.    If you are able, explore every referral you get.  I know from personal experience that insurance companies have some interesting ideas about how often we should go to the doctor, what tests the doctor should order and what medicines should be prescribed.  I am embarking on an effort to get my insurance to pay for my bandages to treat my Lymphedema.  They pay for the related doctor’s visits, medication and physical therapy.  It makes no sense to not pay for the bandages.  That will be another post soon.  I’ll admit that the odds of them approving the bandages are slim to none but if I don’t push the issue I’ll always wonder if they would have if I asked.

This has not been a good week.  My pain has been on a roller coaster and my fatigue levels have been the worse they have been in months.  Insomnia showed up both Wednesday and Thursday nights.  Couldn't sleep until 7am the next day.  That just increases the fatigue and the pain.  I didn't get anything done around the house except vacuuming.  While I didn't really have the energy to do it and Mr. Supportive would have done it when he got home, I couldn't stand seeing the dog, cat and rabbit hair on the floor another minute.  If we can ever afford to do it, we'll have hardwood/laminate flooring instead of a light color carpet.  The dog is constantly shedding his dark hair - it's one of the basset traits he has - and it shows up something horrible on the cream colored carpet.  One of the cats is a calico so her dark hair shows up as well.  Our living room carpet is a dark green.  Why the people that built our house did that, I'll never know.  The rabbit is a light brown and the other cat is what most of us call orange but in the Maine Coon world he's considered red.  Their hair shows up awful on the green carpet.  Since Carter likes to sleep up next to the rabbit's play pen, their light colored hair changes the color of the carpet in that area.

I'm going to look for a fatigue level scale tonight.  It just occurred to me that if  there's a pain scale there should be a fatigue scale.  If I can't find one, I'm going to compose one to use here.  I think it will make it easier for me and those reading this to have my fatigue defined.  Like I said, it's been awful this week and I'm really not sure how to describe the fatigue.

Since I'm trying to save money by couponing, I went over the grocery ads and put a list together and matched my coupons up.  When I went to both Walmart and Target, I rode the electric scooter.  I see it as a sign of my "failure" but I knew that I needed to go all over both stores to get the things we needed.  I also knew that if I tried to walk, I'd never make it.  I've decided to call my insurance company and see if they will pay for one if I get an order from my doctor and find out how much my cost would be on it.  If it's very much, then I'll have to forget about it and continue to miss out on things that require much walking.  It's one thing for me to have to stay home when our friends go out.  It's another thing for Mr. Supportive to miss it because he feels he should stay home with me.  It's not fair that fibro and chronic fatigue have ruined my life.  It's for sure not fair that it's ruining his.  I miss out on so much with my grandchildren because of it. Until I couldn't walk very far, I never realized how much we depend on walking.  I know that sounds crazy but think about.  I'm not talking about your everyday getting around.  I'm talking about  when it comes time to do fun stuff.  Things like going to the zoo or just to the park.  Those are things that unless I have access to a scooter, I can't do anymore.

Back to my shopping yesterday.  I got some good deals and we now have enough body wash and deodorant to last us about six months and I probably didn't pay a total of $10 for it all.  That will be a huge help. Body wash and deodorant cost was not something I paid attention to when I was able to work.  Now that we are living on 40% of what we were then, it's a lot of money.  Especially when you realize that you can not stink or buy a pound of ground beef or a whole chicken.  Bathroom tissue will be my next thing to stock up on when the tp sales comes around. It's another thing that I didn't pay much attention to the cost of but I do now.

I did better on this shopping trip than my last one up until the end of the day. That's when my pain and fatigue decided to show up all at once instead of easing into being there.  One minute I was a Level 5 and the next a Level 8.  That's the way Fibromyalgia is.  One minute you are functioning pretty well and the next you can't function at all.  The fatigue is the same way.

Friday  morning I drove Mr. Supportive to work because it had rained Thursday night and the forecast for Friday was 50% chance of rain.  That meant that I had to go back and pick him up.  When I got home from shopping, I brought in the items that had to go in the freezer or the refrigerator and left everything else in the car.  I set my alarm and went straight to bed until time to pick him up. I'm really not sure how I woke up to go get him but I did.  Usually on payday we go out for an inexpensive dinner but he could tell by looking at me that we shouldn't do that.  When we got home, Mr. Supportive got the groceries out of the car.  I went to bed for what I intended to be a short nap.  That was about 6:45pm Friday.  I woke up about 8am Saturday.  I stayed up long enough to see Mr. Supportive off to work and went back to bed.  I got up again at 3pm.  

With all that sleep, I am still very tired.  I'd like to go to the bookstore with Mr. Supportive to get him a book for Father's day tonight.  Tomorrow is my altar guild's Sunday to prepare and then put away the items used on the altar.  I'm not sure how I'm going to do either one.


My pain is down to a  Level 7 but I hoping it will be a Level 6 since the sun is going down and it's getting cooler.  If I can get it down to a Level 5 by in the morning, I'll be able to go to church.  That's very important to me.

Mr. Supportive has a theory that the heat may be what's making my fibro be so ugly to me.  Our air conditioning is not working very well so the house is not as cool as it should be.  He's sending me to our oldest daughter's later this week to see if being cool will help.  Being with my grandchildren will help my depression for sure.  It get's lonely being home alone, day in and day out. I talk on the phone some days but it's not the same as having someone with you.  I will miss Mr. Supportive more than I can say but I've got to do something to feel better.

It's time for him to get off work so I'm going to go and try and make myself presentable.  I love this man more than I could ever put in words.  Having him love me like I love him makes everything better.

Of All the Things I've Lost, I Miss My Mind the Most

Yesterday was a beautiful day. The sun was shining and my wonderful hubby was off. It was a little on the warm side hot as blue blazes once again but it didn't seem to be nearly as humid as it has been.  Since Mr. Supportive (I keep reading blogs with "cute" names for their husbands so I thought he deserved one!) was off, I was able to get up, take my morning meds and go back to sleep until about 11. I do so much better when I can sleep almost straight through a 12 hour night.  We had a relaxing morning and then went to visit his mother.   My pain has gone back up to Level 4 and is pushing a Level 5. 

My "normal" every day pain is usually somewhere in between Levels 4 and 5.  The more active I am, the higher the pain goes. If you'll remember, last Tuesday I went grocery shopping. My pain jumped up to a Level 7  before I got home.  The way Fibromyalgia pain comes and goes is one of the worse aspects of this disease.  It's next to impossible to make any kind of plans. Many a time we've had plans that I felt confident I would be able to go through with because I had been at my normal pain level for several days. Sometimes, getting ready to go out will cause the pain to go up so quickly that we never leave the house.  Other times, we'll actually get where we are going before the pain escalates to an unmanageable level. When this happens, I try to suck it up and fake it.  When I'm doing this I have to try and stay away from Mr. Supportive and a few friends who can read my face like a book.  If they realize how bad I'm hurting, they worry about me and making me comfortable instead of having a good time.  Times like these are when I feel like a burden to my family and friends. I have become someone that they have to take care of instead of having fun.  I have become someone that my family and friends can no longer depend on to do what I say I will.


No longer being dependable was one of the hardest things to deal with when my illness got to the point it is.   I was the one that everyone knew they could depend on to get things done correctly and on time.  That's no longer the case.  The Fibro Fog has taken away the sharpness I once had.  Tasks that I once performed quickly and correctly are now a struggle to complete in three or four times as long and no matter how many times I proofread, it will be riddled with mistakes.  

Writing these blog posts is an example.  Once upon a time, I would have taken less than an hour to write something like this.  It would have had more and better content with pictures to break up the rows and rows of text. Now it takes me two or three hours to write a short post. I forget what I was saying in the middle of typing a sentence.   I loose track of how many times I have to proofread once I finally get it written.  Not only do I misspell words or use the wrong word, I leave entire words out.  Since I have trouble figuring out what I was trying to say, I'm sure that y'all would be totally lost.  It's frightening to think about how badly my writing skills have deteriorated.  Loosing mobility is hard to deal with but there are so many products on the market to increase your mobility that it's not a problem.  Loosing my thought process and writing skills - that's a much different problem.  There are no products on the market to help you remember what you were saying when your mind went blank. There are no products to help you learn new tasks and retain that knowledge.  There are no products to help you make decisions.  There are no products to allow you to grasp what is being said in a conversation so that you can contribute to the conversation.


Because of my memory deficit and foggy thinking, even if my body would cooperate and allow me to do some kind of work outside of the home, I can no longer be dependable for an employer. I can't guarantee that I would be at work, on time everyday.  I can't guarantee that I could meet deadlines with a quality product. I would be a detriment to the organization in the same way that I use to be a huge asset.


This is my life with fibromyalgia pain.

Fibromyalgia - She Rules My Life

Today was the best day I've had in awhile. The fatigue was still bad this morning and I went back to bed as soon as Bill left for work. When I woke up about 1:30 I felt much better. My pain was a Level 3 most of the day but as I've been more active it's coming up and it is quickly approaching a Level 4.

For my pain to be so low is not normal.  I wish that it was.  It would make my life and my family's life so much easier.  Sad isn't it?  I know Fibromyalgia all to well.  I know that she will not make my life easier.  Fibromyalgia will do everything she can to make my life difficult.  Fibromyalgia takes away the joy of a good day because you know the other shoe will fall. You know that the pain will return. You know that not only will it return but it could come back with a vengeance like it's never been before.

It rained today and brought the temperature down.  That was a welcome relief. Had the lights not gone out,  I would have gotten a good bit more done.  I did manage to pick up a lot of clutter that was laying around.  It made the house look better and in turn, I felt better.  Tomorrow I hope to get the house vacuumed and the laundry finished.

My sleep specialist called this morning with the results of my study.  My apnea has worsen slightly since I was first tested five years ago.  I've got to take my cpap in tomorrow and have the settings changed.  He is sending the results to my cardiologist so we have one more piece of the cardiac puzzle.  I wish I didn't have to wait until the end of next month for the MRA. I would really love to have all of this finished up. It's like a dark cloud following me around because it leaves a huge question unanswered.  Have I had mini strokes in the past? Is there really a possibility that I could have a stroke or a heart attack and with no warning die immediately?  Do I have multiple sclerosis?  Am I missing out on treatment time that could make a difference in my life in the future?

It's always irritated me that doctors don't seem to have the sense of urgency that we do.  We're told that our condition could be serious and that they need the test to determine exactly what is wrong and the treatment.  It's serious but we can wait a month or more to have the testing done?  I'm also having a hard time wrapping my brain around the fact that even though my cardiologist is requesting the test, I have to see the neurologist first?  It would seem to me that professional courtesy (and common sense) would be to schedule the test, review the results and share them with the requesting specialist.  If it's indeed a cardiology problem, I save the time and money of a neurology appointment and the neurologist has an open appointment for someone that really needs to see him.  If it ends up it's a neurology problem, then we've already got that information when I see the neurologist and treatment gets started sooner.  Makes complete sense to me.  What do you think?

My Rollercoaster Life with Fibromyalgia

I've lived most of my life in the south.  I'm proud to be a Mississippian.  I grew up with no air conditioner and never missed it.  Before fibro, I camped, fished, hiked, all kinds of outdoor things in the summer heat.  Before fibro, the heat never bothered me. Today, it took every ounce of energy I had and I never left the house. The air is running full blast but I'm still hot.  Pre-fibro i would have been comfortable if not cool.  Not anymore.  Thankfully when I am asleep, I've got two fans blowing on me and I sleep well.  It's when I get up and try to do housework that it's bad. Today I ended up with a wet wash cloth on my neck. There wasn't much accomplished except a couple loads of laundry that still aren't folded. Days like this make me feel pretty much worthless. I miss the person I use to be.  I miss the being able to keep my house clean so that it's something to be proud of. Instead, I feel like it should be on one of those shows about messy houses.
 
My fibro pain has stayed down at a Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications for several days. I feel blessed for that but my Chronic Fatigue Syndrome has taken it's place. Last night I slept about 11 hours.  I saw my wonderful hubby off to work and went back to bed and slept another 3 hours.  Did I want to get up when I did?  Nope. Could I have slept longer?  You betcha. But I had to get up.  I had to get up, clean up the house, do the laundry and fix a good supper. Otherwise, I see myself as worthless. I'm feeling pretty worthless tonight.  I hope I can sleep but I'm not sure I will.  Between my emotional state and the burning in my legs, I don't know if it's possible.

I suppose the physical acceptance of my illness is easier because I can't argue with a body that refuses to move any more. For the most part, I feel like I've accepted that I am not and never will be the person I was.  I accept my limitations and move on the best I can.  Emotionally, I'm not so accepting.  Emotionally a part of me refuses to accept that I'm a very sick woman.  Most people I read about accept that fact with just a Fibromyalgia and/or Chronic Fatigue diagnosis.  Adding Chronic Myofasical Pain, Neuropathy and lymphedma would confirm it to anyone but me.  Doctors, friends and family tell me that I'm a sick woman and I need to accept it.  Why can't I?

Now that my edema diagnosis has been changed to lymphedma, I'm terrified. I have signs of cellulitis beginning on my lower legs.  The look on my doctor's face when she walked in the room last week terrified me.  Her talk of finding a vascular surgeon if the lymphedma therapy doesn't work has me terrified.  Reading that some insurance companies don't pay for lymphedma therapy has me terrified. Knowing that the pain of the Fibromyalgia and the Chronic Myofasical Pain in my legs may keep me from being successful with the lymphedma therapy has me terrified.  Knowing that once again I'll be running up even more medical bills that we can never begin to pay has me terrified.

On days like today, I feel like a failure and a burden.  I'm only 54 years old.  I shouldn't be a burden to my husband.  I shouldn't be causing him to daily live the "in sickness and health, for richer, for poorer" part of his wedding vows. That was for when we're 80 years old, not now.  Occasionally, I think that I should suck it up and go back to work. I know people who still work with their Fibromyalgia, so why can't I?  We desperately need the income. Then I remember working. 

I remember throwing up because the pain was so bad.  I remember falling asleep at traffic lights driving to and from work. Only by God's grace did I not fall asleep driving. I remember spending my lunch hour in the car sleeping to make it through the rest of the day. I remember being taught a new task and three days later not remembering how to do it or even having been taught to do it.  I remember the feeling of failure because I was no longer the "go to" person.  I remember the feeling of failure that I would never use the degree I had worked so hard for just a year before.


I truly don't know how I survived as long as I did at work when things started to get worse. They got worse quickly, before I really understood what was going on with my body.  My pain levels went up and didn't come down below a 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)  for almost six months.  Most days it was a 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.  Some days it was  a 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.  My supervisor and co-workers were not sympathetic so I pushed myself to be the old me.  The me before the Fibro Flare from hell that lasted almost a year.  Bill was without a job because of the economic crisis at the time.  I had to work.  We had to have my income and my health insurance.  I pushed myself to go to work with Level 8 and 9 pain.  Until the day I could do it no longer. 


I can no longer ignore deny that my life is different.  I'm a sick woman.  I can no longer work.  Will today be the day I accept that?

The tears are coming...

Just a quick check in

It's almost 1am Tuesday night/Wednesday morning. I'm back in bed after my early evening nap. I should have kept my mouth shut about hoping to have 3 good days in a row. Monday I slept 14 or 15 hours until a wrong number called and woke me up. I felt awful about sleeping because it was Bill's day off. Bless his heart, he can tell what's going on with me even when I can't or at least won't admit it. Today was even worse and I'm starting to think I need to go to the doc but I don't know which one. I hope I'll feel up to writing to
catch this up tomorrow. Until then, good night n

Where Did the Weekend Go?

I can't believe that it's already 11 o'clock Sunday night. Why is it that when I feel OK, time flies but when the pain is high, time seems to move so slowly.? My son and daughter came up for a visit Saturday and I realized that it was the first time I could remember when I felt like visiting instead of taking pain meds and sleeping.  When they come to visit, no matter how bad I feel, I still try to put on the "Mom" face. They drive too long and I see them so infrequently to let my fibro, chronic fatigue and chronic myofascial pain interrupt our visit.  Friday night and Saturday my pain was only a Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications or 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. When I mentioned it to them and my husband, everyone agreed that it had been way too long since I was in decent shape when they were here to visit. I find it so sad that feeling OK is something noticeable and being in pain is so normal that I no longer even notice it.


Fibro has changed so many things in my life including visits from my children. Before fibro when they came up to Memphis we would go to the park or the zoo. Now Monica and Dave come up while Brian says home with the kids. She leaves them home so that she can do my deep cleaning and help me go through things that I've had in storage for going on 10 years. We've got the house decluttered for the most part and the clutter is pretty much confined to the garage.  Since we gave up our storage unit years ago, we've not been able to get the car in garage.  I'm hopeful that we'll be able to get the car in the garage soon.  That would make things so much easier for me.


I've never had a garage except for the first couple of years that we were here so I didn't realize how important having one could be.  Having the car in the garage during the summer means that the car would be in the shade with the windows down.  Not getting into a boiling hot car would be so nice. Heat takes so much out of me. It makes it so hard to do anything.  Spring and summer use to be my favorite seasons because I love to fish, hike, camp and ride the Harley behind Bill. Since my fibro has gotten as bad as it is now, the summer heat is not my friend.  That means that most of my outdoor activities have pretty much gone away Since the heat has had such a negative on me, having a cooler car that the a/c can cool down quickly will be wonderful.


Cold weather has its down side too. The colder it gets the harder it is to get around.  My joints are so full of arthritis that they they don't want to work.  The cold weather makes my already painful muscles hurt even worse.  Going outside to scrape the iced windows makes me so miserable that it's hard to actually go where I need to go by the time I get ready to leave.  Being able to have the car be warmer and not have to scape ice off the windows will be wonderful also.


I'm headed to bed now.  It's been a good weekend and my pain has stayed down.  I don't want to stay up too late and not get enough rest.  That will send my pain back up. I've had two good days.  It's been along time since I've had three.  Maybe, just maybe, I'll wake up with my pain still around a Level 3 or 4.

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

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