Fighting the Battle

It often seems like the battle is never ending when you have a chronic illness.  Even when you have been seeing improvement, there are times you feel like you cannot throw off all the cords that have bound you.  It seems they tighten and pull you down again.

The only thing I can say for getting through this is "keep on fighting."  Rest between bouts; then, start moving forward again, one step at a time.

You may think that is easy for me to say.  No!  It is not!  I know this, because I live it.  I am living it right now.  I am having to modify my behavior to fit my situation, and it is not easy.  I start retreating into my little turtle shell, only wanting to be in situations where I feel comfortable, which is mostly at home;  and, my step backwards throws me back into a loop that means I am having to regain ground on the habits I thought I had fixed.

Has this ever happened to you?  Have you ever had a relapse and ended up sitting around in your pajamas too much?  Have you seen your house get a little messier (maybe a lot messier), and you have not cleaned your bathrooms and other areas as often as you normally do?

Have you ever had another member of your family become ill or had some other prolonged situation arise that sapped your strength and emotions?  I bet I could name many things that may affect how you are able to handle your illness and responsibilities.  However, the point I am making is not about what affects you, but what you do when you realize how far you have fallen from where you were.

I can write about the backward steps from experience, because I have lost count of how many times this has happened to me.  Moreover, I am experiencing this now.  I am having to climb my way up again, and it is worth it.  My brain tries to get stuck in the old ruts and loop back into what used to be the chronic illness norm for me, which is quite depressing.  Some of that dread I used to to feel in the morning upon awaking has tried to creep back into my life, and I am having to make behavior changes that include telling myself that the feelings will pass and it will be a good day.  Praying and thinking of scripture before I even get out of the bed has helped too.

The point is not to give up, because there is still a race to run.  It may be a very slow walk with one heavy foot in front of the other, but it is doable.  It can be done, even when you do not immediately see large scale results. In fact, you may never see large scale results, but you can feel good whenever you take a baby step forward.

Here are my daily basic steps forward this week, and I am not limited to just these steps.  In fact, I have already been able to achieve more.  I am not listing obvious steps like self-grooming, eating, or taking medication and supplements;  however, one certainly can do this when planning one's goals for the week.

• Get dressed in something other than pajamas.
• Do stress relieving exercises, such as slow counted breathing patterns.
• Focus on one household chore at a time, and do not think about how much more needs to be done.
• Enjoy reading my book without guilt.
• Take a short stroll outside, because it is better than sitting in the house all day.  
• Do not talk negatively to yourself about all the things you have not done.

These are my goals.  What are yours?

Tips for Jumping Back In After a Flare or Relapse - Day 1 and Day 2

Going back to your regular routine after a relapse or a flare can be a daunting task.  I don't know about you, but I get used to sitting and lying around.  I also start spending too long reading, watching TV, or playing games on my laptop.  Last week, I  sometimes felt bored, because I wanted to be active, but I felt awful.  Not even the usual quiet pastimes kept me from feeling antsy about not doing my regular routine.  But I know part of that was that I really felt too icky to have much of an interest in anything.   However, I did use some of those  times to throw in a load of laundry or wash some dishes.  I was blessed to have some mobility, even though my energy didn't last long.  I also used those times to care for myself -- rinsing out my sinuses with Neil - med, taking my medications, getting a healthy snack, and replenishing my water.

One of the problems for most people after an extended illness or a bad flare-up is getting back into a routine.  Let's face it.  When you lie around the house, you lose muscle mass.  People with Fibromyalgia and Chronic Fatigue Syndrome already have problems with joint pain, muscle pain, and energy levels.  Then there is that conundrum of having not been active, so you lose more energy by being inactive.  It's walking the balancing beam again.  If you have one of these illnesses, you have to learn to pace yourself.  When you have been inactive, you have to start activity gradually, or you may walk yourself right back into bone-wearying fatigue. 

Each of us has to learn our own balance and pacing.  You don't what is right for me, and I cannot tell you what is right for you.  Really -- only you know that;  and, I can tell you from my own experience, it is a learning process.  The first 12 years I began to experience the downs and ups of chronic illness, I tended to jump right into things full speed ahead, because I wanted to catch up.  If I had a good day, I wanted to make the most of it.  Experience and aging has taught me I cannot do that.  If I push myself past my limits, I can expect another flare-up or relapse.  Therefore, I thought I would share with you a break-down of how I get back into the swing of things.  By the way, my swing is not quite as strong as it used to be, but at least I have gotten to a point where I can do the basic things I need to do at home.  There was a time I could not do that.  This doesn't leave energy for outside activities;  but at least, I do feel like I am ministering to my husband.  He doesn't have plans to retire anytime soon, and he is getting older too.  I don't want him to feel like  he always has to take care of me;  although, I know he would if there was that need.  When the need has arisen,  he has definitely stepped up to the plate in doing things that have traditionally been my domain;  however, I feel it is healthier for me physically, mentally, and emotionally when I can do my part.

First Day

1. Take a shower and get dressed.
2. Rest .
3. Fix yourself a meal if you have not been fixing your own.
4. Eat.
5. Clean up after yourself.
6. The rest of the day is yours to do with as you wish;  Or,  in one area of your home, spend 5 minutes picking up, if you feel strong enough.
7. Rest.   
8. After my most recent flare,  I actually had energy to fix a simple supper.  I made that easier by sitting down to cut up the vegetables.  Be mindful, that I have been doing some simple tasks  like putting a load of laundry in the washing machine and dryer, so I have been doing light activity during my illness. And I had help with cleaning up the kitchen afterwards.

Second Day

1. If necessary, take a shower.  However, you might want to wait until later;  because today, you will do more.  Get dressed.  I am not saying you cannot clean in your pajamas, because I have been known to do that;  however, I like having on a comfortable house dress (something pretty) or comfortable jeans or skirt.  Being dressed makes me feel ready for the day.  
2.  After dressing, rest for a few minutes.  Put your feet up.  Perhaps you will want to make  a short list of things that need to be done.  Then pick three things off that list.  Work at them no longer than 15 minutes each.  You may need to cut the time for each activity to a shorter amount, depending on your strength.  The key to getting back  into your routine is adding things gradually.   
3. Make sure you rest between each activity.  Put your feet up.  I often work or play while sitting:   ie.  reading, working on a blog post ( which can be very tiring and time consuming), eating a snack, watching TV, or simply closing your eyes for a few minutes). 
4. You have to learn to listen to your body.  That is not always easy for those of us who like to push through and finish an activity.  However, I have learned that if I take a break and go back to what I was doing, I am more likely to have the energy to do what I  need to do tomorrow.  

I am learning not to sweat the small stuff.  As capricious as chronic illness can be, we can still live our lives.  I have to admit that I have lost some ground the last few years, but there are times I gain some ground.  Worrying about what I can do or cannot do does me no good.  It won't do you any good either.  Worrying is an activity that drains the mind, body, and spirit.  If you worry, you might as well picture yourself with a drain attached to your body.  It makes things worse, not better.  Believe me, I know!  However, I have learned to let the anxious thoughts go.  That isn't always easy, but it is possible.                                                                                                

Chronic Fatigue Syndrome and Relapse

Raindrop on Wisteria Vine

Hello my dear friends and readers.
 It's terrible that I just had the thought,
 "Lord, why don't you just take me
now?  I am so tired of being sick."  The Chronic Fatigue Syndrome has taken over it seems.  I am hoping it is just a relapse, and I will get better.

Have you ever felt like that?

Sometimes, it feels like I have been sick forever, and I want to tell myself to snap out of it;  but the body doesn't cooperate.  Just in case you are having a relapse, I am going list my symptoms;  because I know how it feels to be alone even when you have a loving friend or spouse.  But how can they really understand, when you yourself doesn't understand why you have to feel like this?

My Doggy Comforter

By the way, for anyone that thinks these symptoms are psychological--that does not make sense.  I have so many things I want to do, and I am struggling to do the basic things in life right now.

My dad used to say, "What doesn't kill you, makes you stronger."  This has made me stronger spiritually.  You see, the Enemy would like us to give up the fight, but my God is a god of hope and grace.  I may be going through a difficult time, but absolutely nothing can separate me from Him.


However, my body feels weak now.  And I have moved from not being able to sleep to falling asleep in the daytime.  Here's a list of symptoms -- I may forget something.

• sore throat
• swollen lymph nodes or gland in my throat area
• joint and muscle pain
• brain fog
• dreadful fatigue
• restless legs syndrome, but not all day
• sinus problems
• neck pain
• shoulder pain
• back pain, especially lower back
• weight gain
• low body temperature
• heat and cold intolerance
• tinnitus
• anxiety, but not all the time
• hypersensitivity to sound, more than usual, but not every moment of day
• memory problems (short-term)
• dry skin
• light-headiness
• weakness
• blurry eye (but not all the time)

Thank goodness, I don't have every one of these symptoms every moment of the day, or I think I would go mad.  And I didn't add dry mouth, which doesn't help at night when you have to get up to go to the bathroom more.  I would not be surprised if I forgot something.

Anyway, I think it is time to focus on taking care of myself better and a little less on blogging and facebook pages.  I am going to be around, but I need to see if I can head this thing off and get back on track.

As far as stress being a factor, I have to admit to feeling a certain duty to tending the blogs and the pages.  However, I think I am going to give myself a break.  If I am feeling pressure about it, then that is not good.  One of the things my doctor before I moved told me was I should not work, because of stress.  But even though I am my own boss and not paid for writing, the A part of my personality has been pushing me.

There is a part of me that says, "You cannot let them down."  But if I don't take care of myself, I will not be here for you.  It is a conundrum.  So, I will vacation a bit from writing as often, or feeling like I have to.  This is part of balancing my life changes.

I know you understand, and if you are a subscriber you know when I write.  Also, I always post announcements various places.  I will see you later.  God bless and take care.
                                                                                                          Love, Deborah