Finding the right support group has been a great encouragement for me.  I live in a small town, so there are not any support groups that fit my needs;  however, I have found sisters in the spirit with similar problems that understand what I am going through on Facebook, Spark People, and a couple of other forums on the internet.  When I first became ill, it was difficult to find anything that gave me any answers or support; and actually, answers are not always certain in some illnesses.  But just knowing someone else understands helps me to feel that I am not alone.  I have left a couple of forums in my search for the right fit.  Sometimes, it was because I was too ill to  participate.  I left one group, because the posts were becoming more and more negative and I didn't like the jokes.  

Support groups can be both informative and encouraging.   I belonged to a group on a forum, which gave personal antidotes about what it was like to have hip replacement surgery, as well as answering questions the newbies asked.  It was belonging to that group that helped me make an informed decision.  I also did research on my own and talked to my orthopedic surgeon;  but it was communicating with the group members that helped remove my fear of having the surgery.  Having a joint and hip replacement is probably one of the best things I could have done for my health at this point  in my life, for I was extremely sedentary because of the pain.   While the hip heals and because I deal with other health issues, I have taken very small steps in adding activity.  I feel better because I'm moving more, but I try not to push myself;  because, I know that I will run out of fuel for several days if I do too much.

Do I have to tell people my real name?

I can be authentic without sharing
 all information about myself on the internet.

There are forums where you can use a pseudonym, as well as social media where you can use your real name.  When you are in an online support group, which is open to the public, you don't have to share anymore than you are comfortable sharing, certainly not your real name if you are talking about personal matters.  

I hope you have found this information to be helpful.  If you are a regular internet user, then you are probably well aware of what a great tool it can be;  however, it is on-the-job training for new users.  One more thing, do not let the internet totally take over your life.  Yes, we can make friends on the social media and reconnect with old ones;  but there is more to life than spending all day on the computer. If I have a day or two away from the computer,  I actually feel like I am doing something good for myself.  I lived a very full life before I had a computer, and I don't want to feel it has taken over my life.                                                         

When Games Become Work

It's been too long since I've written here, but I am ba-ack.  God has gotten me through serious surgery and a move.  In fact, I'm still unpacking and putting away.  

Have you ever felt like you

will never be able to find a

place for everything?  That's how I have been feeling for the past year.  Clutter is ugly, distressing and fatiguing.   However, I am taking baby steps and getting my new home in shape.  Now, enough of talking about chores and on to my topic for the day  -- when games become work.

Me, my computer and my dog.  
Since it isn't easy to sit on the floor, my dog has gotten spoiled.

Being part of the computer generation is a great boon for people with invisible illnesses.  We find understanding and support; we are able to connect with friends quickly; and we can play computer games.  Uh-huh!  Did you know that was where I was going?  Many computer games are like hobbies, because you can arrange the pictures they provide however you want.  It is the computer generation equal to having an electric train and building a set for it.   However, like any hobby, this can take up too much time;  moreover, it can be a big energy drain if I  begin to get obsessive about it. 

Energy drain, the bane of the chronically fatigued, is something we have to guard against.  In my own life, I have been taking gradual steps to increase my energy and learn my limits.  I have discovered one of my limits in playing games.   When the game becomes work, I have to step away for a while.  How long depends on my  work schedule.  With limited energy, I have to make a decision about what really needs to be done each day. Now, that I am able to accomplish more and I am sitting less, I have to choose my activities carefully.

Sometimes, I have to let my games go for a while: then, I close my eyes and lean back in my chair, I watch television, or I just read.  Balancing my playtime is just as important as balancing my work.  May your playtime be fun and your work be satisfying.  

Until next time, 

Deborah

Letting Others Bless Us

When I was well, I would have considered helping someone else an honor;  moreover, I still would love to be able to bless someone else, so far as I am able.  I think most of us feel that way;  however, I have had to accept help in areas that I considered my domain as a professional homemaker.  I did not want to even acknowledge I need help.  Letting go started gradually--my husband vacuuming, cooking supper, or cleaning the kitchen because I was too fatigued.  He has even done laundry.  Not that there is anything wrong about a man doing those things--it was just hard giving up my jobs on a regular basis.  I had gotten used to doing things my way.

What is going on?  Where did my furniture go?

My most recent area of giving up things that have always been my area of expertise is in the area of moving.  I have dreaded this move with a deep, stomach turning, hurting heart kind of dread.  The primary reason is my pride and knowing I could not do it myself.  In the past, I packed most of the boxes, and I even picked up boxes to stack them.  However, now I cannot pick up most boxes that I used to heave.  Also, I worried about how we were going to get everything done when we could not afford movers.

I agonized over one of my daughters and her family coming to help us move some of our things;  however, it turned out to be a  wonderful blessing.  We had a good visit; and I think the only things I cooked were a salad and a chocolate cake, which my 6 year old granddaughter helped me frost.  My daughter brought food and I bought frozen lasagna.  Hurrah for frozen foods and daughters that cook!  My son-in-law, grandsons, and granddaughters helped my  husband move boxes from our attic to our new house, as well as moving some furniture and other items.  My daughter packed things, which I myself would have packed in the past.     That wore me out;  and I didn't pack anything!   In fact, I didn't pack very many boxes until this week.  I have been packing one, two, or three boxes a day, and I consider that an accomplishment. 


I am thankful that I can do more than I did two years ago, which is due to having learned to pace myself, as well as letting the guilt go.  This is one of the most important things I want to impart to you:  let the guilt go.  Carrying false guilt is debilitating physically and emotionally.   It was false guilt and pride that caused me to worry about my family helping me.  The emotional energy of feeling guilty when you should not, drains you of more physical energy;  and it pulls you down into feelings of depression.  I know because I have been there; and, it was oh so sweet when I let that icky feeling go.  In fact, I have to actively continue to let that false guilt go--to push it away.    

Finally, don't let your pride keep you from letting other people help you.  Saturday morning, men from our church are going to come and help my husband move the rest of the furniture.  I still am not quite sure what I am going to do with myself;  but, if I have to,  I am going to sit in my recliner with my feet up.  Hopefully, I will not feel a bit of guilt. 

The Bible says in Phillippians 4: 6-7, Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus (NASB, 1995).   I memorized this verse as a young military wife, and I still need to continually put the wisdom of this passage into action.   So often  we pick up all our worries and try to carry them alone, but this is not what God wants for us.  God wants to give us His peace:  it is there for the asking. 

Questioning Why I Have a Difficult Time Doing Activities I Desire to Do

For the most part, I have developed an upbeat outlook on my life;  but, every once in while, I go through the questioning process again--because there is so much I want to do.  And--of course--I would like my life to be like it was when I was healthy.  Thank goodness there is support in the cyber world for those of us that have CFS/ME.  When I start questioning myself about why I don't get out of the house more or why I do not accomplish more around my home,  I read what other people say and I know I am not crazy, lazy, or alone.  I have an illness that I don't want, nor did I ask for it.

Today's article is a departure from my series on using FlyLady's techniques to help me simplify and boost my habits.  I found myself questioning again--feeling guilty for staying home when there are church services on Sunday to go to, funerals to attend, children to visit, boxes to pack for a move, and birthday presents to craft (that are late).  I miss my old life;  but when I try to return to it, I am broken down for months--too fatigued to bathe, pick up, do laundry, or cook.  I find it difficult to do the basic things most people take for granted;  because once I put out the energy, it is gone for days, weeks, or months.  Therefore, I am getting very good at conserving my energy for the things I must do.  I have learned to pace myself;  even though sometimes, I still get a bit confused over what I should do.

Today, I read something that helped me to put my life, as it is now, back into perspective.  I would like to share one of the comments left at the end of Adrienne Dellwo's article Understanding Chronic Fatigue Syndrome: A Simple Explanation--This Goes WAY Beyond Tired!.

 Every chore is like doing a marathon
I've had CFS/ME since 2003 and usually explain the symptoms to friends and family as a "never-ending flu". However, after doing stress exercise testing at the Pacific Fatigue Lab in Stockton California I have discovered a new way to explain it. The testing shows that Post-exertional malaise is so bad that the day after the maximum exercise test day #1 it looks like I had run a marathon, not exercised for 15 minutes. It shows that I don't even produce enough energy per day that is required (on average) to take a shower. That seems to be a good way for others to relate the CFS symptoms to their own lives.

—Guest missjanny 

I invite you to make this a conversation.  I have found it very helpful to read what others have to say.  Let's support one another.