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.
Nowadays, when I think of prioritizing my schedule, the major thing that comes into play is doing those things I Have to do. For instance, this past Saturday, I absolutely had to go to the grocery store. I could not ask my husband to go because he was sick; and I was out of just about everything. On days I go shopping, I might as well forget doing anything else, because that is the ONLY thing I will have energy for. And sometimes, I have to cut the trip short; because I can feel when my well is dry. If I try to push through my energy shortage, I pay with being too fatigued to get anything done around the house.
Sometimes, I am too tired to bathe or dress. I know most people would not want to admit that, but this is my reality: and if I'm going to encourage someone else that has physical problems, I feel like I need to be candid and honest. I used to feel very guilty about being too fatigued to get dressed, but I realized the guilt was draining my energy even more. Yesterday, I did not dress. I wore a cute medium-length night shirt all night, all day, and all night again. I missed church again, which I don't like; but, I am through with beating myself up over all the shoulds in my life. That can be a whole blog article in itself--The Shoulds and How I Make Myself Frustrated or Depressed. Something I did do was make supper for our family. I needed to use the ground chuck in the fridge; so, I made my easiest spaghetti recipe and cooked a frozen vegetable. My sweet husband blessed me by putting the dishes in the dishwasher and putting away the leftovers. Yes, I can cook in my nightclothes / leisure clothes. I am proud of that, because I remember days that I only had the energy to get a spoonful of peanut butter, eat a cheesestick, or put a frozen dinner in the microwave.
Today, I have a completely different priority--staying cool. Our air conditioner went out yesterday. I did not know it was broken, until I realized the fan had been running a long time. After that, I watched the thermostat steadily rise. I'm also wondering why 82 degrees seems so much hotter in the house, or maybe 85 by now. However, it is even hotter outside, so I am keeping the shades closed and staying as inactive as possible. I have the perfect FlyLady Beginner Babystep to do today. I am going to put a page in my control journal with some of my favorite inspirational quotes. And I am going to turn off this computer, because it is putting out heat. I did get dressed, but I will stay barefooted or wearing sandals. I did clean the fan off in our great room / living room, because hunks of dust flew off when I turned it to high. However, I will not be shining my sink, or anything that requires more than a quick drive-by cleaning on the way to the bathroom or getting something cold to drink. Also, I am going to pray the air conditioning repairman gets here soon.
Signing out,
Staying Cool in South Georgia
P.S. The good news is my air conditioner has been fixed, and it was not a huge amount of money. Talk about answer to prayer!
Motivation? For some of us, who have chronic illnesses, motivation is something we had in the past. I am not saying that we don't want to get things done. We just can't get started. Maybe, some of you are saying, "I have no problem with motivation. I just don't feel good." If you are very, very ill it is possible that's where you are, and you can't do any of the things that need doing. I hope you get better, and I hope you have someone to help. Hang in there, and don't feel guilty. If you are like me, you probably are frustrated, because you hate having someone else do your work. Try thinking of the situation this way. Other people are blessed by blessing you. This is a time to be gracious and accept the help.
OH MY! I did not plan the above paragraph. But maybe, there is someone out there that needs it. I know I had a struggle within when I could not do the things I do now. BUT now, I can get some things done. However, I got used to being sedentary; and, I think my lack of motivation is partly due to several things that I will list:
- I developed the habit of sitting all the time.
- I got tired easier than I used to.
- I felt overwhelmed.
- I didn't know where to start.
- I was addicted to playing games on the computer, reading, watching TV
Do any of these ring a bell for you? If you have some others I did not mention, please share them. So now that I have identified some of the things that I feel blocked me, how did I start changing? I have read self-help books, articles on the web, articles in magazines, and I have prayed. I have started trying and stopped. What changed? Not much changed, at first. For a long time, I was blocked and totally drained. Nothing seemed to work. But I never gave up hope. Finally, I saw the only way I was going to change was if I nurtured the child within. I think this was a God-thing. I believe I saw this, because He showed me that when I was a child, I did not take on responsibility all at once. When I was a baby I learned to sit up, to crawl, and to walk in small increments. I had to exercise those muscles to do those things well. When I was a child I learned to do groom myself, to pick up my toys, and to take on household chores gradually. And when I was a child, I never felt guilty about playing. I fished, played dolls, climbed trees, played on the jungle gym, and swam. I really had fun.
So guess what I did. I got dressed, found my fishing pole, stepped out the back door, and began fishing. Yeah. While I was fishing, I would enjoy the scenery and I would pray. That same day, I would take 5 minutes to put in a load of laundry or take 5 minutes to work on the pile on the table. So why am I trying out FlyLady's suggestions? I need continued motivation, and I think this process is going to help me rebuild my cleaning muscles. I am being careful to pace myself, which is easy to do with the FlyLady system. I have to tweek it to fit my needs.
For instance, I am only on Day 9 of FlyLady's 31 Beginner Babysteps. If I was following them consecutively, I would be well past Day 9. However, that does not mean I have stopped the steps I already learned. I am trying to do them everyday. In fact, I worked on my Control Journal today. I don't know if I will like using it, but I am committed to building some healthy routines. I say healthy, because I do not think it is healthy for me to sit in a chair all day. I am committed to working on my baby steps, resting when I need to, and enjoying this process. And I am enjoying the process. In fact, I look forward to setting my timer for 5, 7, 10, or 15 minutes and getting busy shining my sink, making my bed, or decluttering. OK -- maybe, I am going to have to work more on the bed thing. I don't know if I can honestly say I enjoy making it, but I LOVE looking at it when it is made. It changes the look of my bedroom, and I feel so relaxed.
I am sorry for chasing rabbits, but I do want to be honest; so you can know you are not alone. We can do this--one step at a time!
