PPS Pain and Fatigue

5 Oct

 

When I complain to my Doctor about pain or fatigue, he usually tells me that I am not getting enough rest.

  I GET SO TIRED OF HEARING THAT I NEED TO REST!  

BUT I KNOW THAT I MUST!

 A day without pain is rare. 

 I was told when I was first diagnosed not to do anything to cause pain or fatigue because I may cause more damage to my nerves and muscles.  But exercise is encouraged… so you have to find the level of activity that is best for you.  My Physiatrist told me that he loves his PPS patients because  “all I have to do is to say,  “Don’t do that!”   

Let’s see…what causes me pain and fatigue?  Breathing too much…..sitting up too long…..holding my head up…..chewing bubble gum or holding my mouth open at the Dentist….walking, standing, sitting.  Any activity that involves using my arms or hands without rest for short periods of time;  such as: driving my van with my hand controls,  sewing a hem into a skirt or pair of pants, holding up a newspaper or book without it resting on something, drying off after a shower, taking a shower in the first place……  Did I say just breathing makes me hurt and causes fatigue?  I know I did.  That would have been almost unthinkable to me way back when I first heard I had Post Polio Syndrome.  Now I have to use my Bi-Pap at night to do the breathing for me so I can breathe unassisted during the day without pain in my chest.   

I think the worst kind of pain associated with Post Polio Syndrome is what we call the “Polio Flu”.  This is usually brought on by long periods of activity when you  FEEL “OK” while you are doing it (so you just keep on until the task is complete).  I call this “Polio Flu” because the pain is like the worst case of Flu you ever had…all of the muscle aches and pains similar to the “Flu”  but without the respiratory congestion of the real “Flu”.   When you finally lie down, a fatigue that overwhelms your whole body just pins you to the bed.  It feels like your body must weigh 1000 lbs!  You are hurting, but so tired that you can’t move….not even to go get pain medicine  or even to cover yourself if you are cold.  You may be hungry, but the thought of  moving one muscle to get food is just way too much!  The pain is in every muscle: legs, arms, body, even your eyeballs hurt to look around the room.  At times I have been way too tired to even talk.  My Mom used to call our home and sometimes if Terry told her I was resting, she might ask, “Can she TALK?”  And she didn’t mean could I talk TO her, she meant was I ABLE to talk!  

Over the years, I HAVE learned to pace myself…more out of necessity than anything else.  My tolerance for driving my wheelchair van, even with ” 1/2 Effort Assisted” steering and brakes, has lessened.  I can describe it more in miles than anything else.  10 years ago, I could easily drive my Mother to one of her doctors near the hospital, which is about 20 miles from my home.  We could have a nice lunch, and stop and shop at a couple of stores while we were out that day.  Mama walked, and I used my wheelchair.  Every stop requires me to transfer from my van’s driver’s seat to my wheelchair.  Starting about 5 years ago  I couldn’t take her to her appointments near the hospital anymore.  She had to change one of her doctors because we needed one that was closer to us. I can drive to the Library, which is 7 miles.  I can only handle about 2 stops in a day, 1 if it is somewhere like Wal-Mart or a doctor where I have to wait.  On these days when I am going to be out, my husband either takes me out for supper or calls for a pizza or I have “planned” leftovers so I won’t have to cook when I get home.  The next day I almost  always require total rest.  Several years ago I had to stop attending  Women’s  Bible Studies and mid-week services at my old church which is about 9 miles from home.  I now belong to a sister church which is only 2 miles away.  I can attend many more things and am not as shut in because of it’s proximity to my home. But I still have found that it is nearly impossible to get to the morning Women’s Bible Study that starts at 9:15. 

 

When I go to church or to a week day Bible Study, I have to get up at least 2 1/2 hours early.  I often have to rest  after I shower and rest again after I dress.  If I have to rush out of the house an hour after I get up, I am “done in” for the day.  This is my life.  My doctor said that he wishes that more of his patients knew how to pace themselves like I do.  Well, if I am doing it WELL, I’d hate to be one of his patients who don’t know “how to pace themselves.”  I do what I do out of necessity. 

 

Post Polio has caused many other problems with my nerves, muscles and joints and I hurt somewhere all of the time.  My Physiatrist told me that I don’t take enough pain medication.  We have an on-going feud about this.  I feel that pain is an indicator that something is wrong.  More pain than “normal” for me and I know that something I did has caused it.  I usually know what it was and adjust accordingly.  For me, as a general rule of thumb, I need about twice the amount of time to recuperate from something I did to cause pain or fatigue.  For example: 1 week vacation at a resort requires at least 2 weeks total rest when I return.  I “rest up” before I leave home.   I rest every afternoon while “on vacation”, but the preparation for the trip, travel and getting settled again when I get home end up doing me in..  Lunch out, a little shopping and a movie with my husband driving my van will cause me to have to stay in bed most of the next morning.  I will not discuss pain medication here because different things work for different people and no two people are alike.

       

   ?????   QUESTIONS I ASK MYSELF   ?????

I have talked to other PPSers and I find that I am not the only one who is constantly asking myself questions.  “Should I do this?”  “Does it really HAVE to be done now, by me, or can it wait until I get help?”  “If I do this, how much pain is it going to cause?”  “Will the consequences be worth the pain/fatigue?”  These questions are applied to dozens of tasks every day….from washing a load of clothes to reaching for a special pot or dish in the cupboard, to going up 1 step to get to something, watering a plant with a watering can…..you name it, If I do it there will probably be consequences. 

I have long ago given up trying to do my own housekeeping.  It has been about 24 years since I have been able to vacuum a room.  The same year I scrubbed out my bath tub for the last time. I still do the laundry and fold clothes.  This give me a lot of satisfaction to have everything clean and put away!  My dear husband does the ironing and it “magically appears” on my closet door before I wake up in the morning!   I have monthly household help for the heavy cleaning, but the day-to-day things are taken care of by my husband.  He clears the table after supper and empties the dishwasher in the morning.  He pumps my gas and does a thousand little things…he is my angel.  I sometimes get cross at him for scolding me for doing too much or saying “Save your steps!” when I take off to go and get something that he could easily do instead. 

                                                                                           

 It is hard to learn to accept help from others when we have been used to doing it all ourselves.  But I found that one of the ways you can bless other people is by letting them help you.  I often accept help with opening doors, fetching things from grocery store shelves, etc. because it is nice of the person to offer, and they feel good when they get the smile and “Thank you!”  for helping.  We often forget to thank those who help us the most.  I know I don’t thank my husband enough for all the things that he does for me without my asking. 

I was given advice that when writing about PPS Pain and Fatigue to try and write it as if someone who has never heard of PPS needs to know how it impacts my life.  I have really just scratched the surface.  If any of my readers have anything to add, please let me know and I will add it to the “Comments” section (you can do it yourself if you register).  So long for today…I need to go and rest now.   

 

Till Next Time…..I’m Outta Here!

 

ADDENDUM……

I forgot to mention that the PAIN saps your body of your STRENGTH, thereby also causing severe FATIGUE.  Your body puts out so much effort to try to keep you going when you suffer chronic pain.  There is a so a psychological component.  It is depressing to be tried and hurting all of the time.  It is a struggle to try to stay positive…every now and then, when I am having one of my “Post Polio Flu” episodes, I let my mind wander and I think about the fact that there is no cure for PPS.  I will ALWAYS have it….and it may even get worse!  If you let yourself dwell on this fact, you could become a very depressed person and not very much fun to be around…so I just try to think positive, be grateful for all of the things that I have been able to do in my life…and know that there  still will be some good times ahead. I try to think of things to be Thankful for…..Especially my husband and my wonderful friends and my Church.  And I have very good Doctors who understand and want to help.  I also have gotten more and more PPS “brothers and sisters” who will always know without me having to go into a lot of detail if I am having “one of those days.”  I hope that they, too, know that I am here for them.  

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5 Responses to “PPS Pain and Fatigue”

  1. Bobbi Stevens April 19, 2016 at 12:58 pm #

    Thank you, Linda. I identified with so much of what you wrote. You have helped to validate my feelings and made me feel less alone.

  2. Nancy Woolsey Almirall June 3, 2012 at 7:13 pm #

    Hi Linda. I feel that I could have signed my name to this as well. I am always exhausted and in pain and know I have to make changes. I am going to my physiatrist tomorrow which is a 140 mile round trip and my husband is visually impaired and can’t drive. I am planning to change to a doctor who is closer as soon as I get my wheelchair ordered. I’m in an old Jazzy that doe not meet my needs and need one with tilt and recline because I can’t sit up for more than an hour or so. I am in a tortured position right now, trying to find someone who will drive me to Kansas City to see my granddaughter’s dance recital and doing the impossible which is drive myself the 240 miles. I know that I can’t do it. But it breaks my heart not to be able to go. I don’t know which pain is worse or which does more damage. I know you will understand and I am so thrilled to have found your blog.
    With best wishes,
    Nancy Almirall

  3. jazzyroller October 6, 2010 at 3:16 pm #

    Hi Linda, I couldn’t agree with you more about PPS and fatigue. The summer ended with relatives from out of State coming to see the sights and visit. It was so much fun to see them again and do things together. However, they wore me out! When I over do it I get sick. I am sitting here with a heart monitor attached to my chest with electrodes and wires. I had some pretty bad chest pains, dizziness, and extreme weakness and fatigue. I will be taking the monitor back to the hospital later today and then I will have to wait for the results. I hope I don’t have to have another angiogram.
    My wife, Liz, is always asking me to slow down. This is hard for me to do. I have always been an “over achiever” and tried all of my life to ignore my polio. But now, the pain and fatigue associated with post polio is conquering me. I do mask my symptoms with pain meds that my doctor insists are necessary for me to have if I am going to have any quality of life at all. At times I feel that I may die soon, and then the old fighting spirit returns and I feel that I can make it until age 80! I enjoy everyday, all of God’s creations, my friends and family, and every hobby and activity I get to do!

    • lindaonwheels October 6, 2010 at 8:19 pm #

      I know what you mean….multiple health problems…I, too have a heart condition and am on medication for that as well as a-typical epilepsy. Holter monitor…been there, done that…..

      You know what, though? (and this is DEFINITELY going out of the way to see the glass half full) I honestly think that because of PPS slowing me down, that the valve replacement that I was told would happen before I was 50, hasn’t been necessary. If I had not slowed down…….? My Dr. says that a diabetic is not addicted to insulin and if I take regular pain meds BEFORE the pain becomes horrible, that I might feel better, and I will NOT get addicted! I do take pain meds, but like I said, if I have unusual pain, I know that I shouldn’t have done something that I did…and it makes me think twice about doing it again. I ask for help more now. Thank you for your comment and for your support! I hope that you feel better soon!

  4. cobaltt72 October 6, 2010 at 2:48 pm #

    Linda -u write very well – from ur writings i would think u were in my body writing about me!

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