ME/CFS: Analyzing Every Step You Take



Do you remember the days before ME/CFS where you just got up, went about your daily routine and didn’t think, rethink, and overthink every step you take and every move you make?  (Great – now I have the Police song “Every Step You Take” going through my head!)  People unlike us, the healthy ones, or who I refer to as “normals”, go through life just going and doing whatever their hearts desire and never realize how lucky they are to not have to worry about how their activity will affect them tomorrow.  Or the day after that.  Or the week after that.

Because of ME/CFS symptoms, particularly the cognitive dysfunction and post-exertional malaise, I personally feel as though I have to take into consideration every little detail of daily activities in order to try and get through life.  Does that make sense?  For example, I have to determine daily if it would be less exhausting for me to take my shower in the morning or at night.  If I have to work plus run errands afterwards, I have to usually break up my errands into a couple of days because to do it all at once is too exhausting.  If I want to have a weekend away with my family, which we usually plan well in advance, I try to schedule all housecleaning and errand running so that I have very little to do the week of our getaway.  I still have to work but with the exception of laundry and cooking meals, I do little else at home so that I have energy to go away.  If I’m not going anywhere & if I don’t have to work, I usually won’t bother to put on any makeup and I have my hair cut every four weeks so that it only takes me five minutes to style. 

Over the years I have went from the woman who wanted it all to the woman who contemplates and tries to figure out every possible way to make life easier and less exhausting.  I went from loving to have decorations all over my house and practically every wall space covered to minimalizing it all so that I have way less to dust.  Every action & every decision I make revolves around how it will affect my ME/CFS & how many days a particular activity may keep me on the couch lifeless.

Now that my son is an active first grader (almost 2nd grader – hard to believe!), I have school activities and his sports activities I have to constantly analyze as well.  We only allow him to participate in one sports activity at a time because I know that there is no way I would be able to handle all of the running around to practices and games that is involved.  He just finished soccer and my husband had to take him to a few of his practices for me and I missed two of his games because I was too exhausted. 

Wouldn’t it be great to go back to the days where you didn’t have to think about all of this stuff?  How many of you are the same way and analyze every step you take?  Please comment!

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  1. SOunds like my days and weeks. Somehow “make hay while the sun shines” doesn’t quite do the trick anymore because doing that means paying for it for days after. I, too, have to plan ahead for everything. For example, my husband has some paperwork that needs to be hand-delivered during business hours (when he’s working of course) so I volunteered to take the packet over to the other side of town (a 30 min drive each way). But I told him that he needed to NOT wait till the last minute — I needed at least a five-day window within which to plan when I was going to do that particular errand. I never know how I’m going to feel, what meds I’ll be taking, and whether I’ll be able to drive that day. This will be a case of “make hay while the sun shines” — somewhere in the five day window I’m bound to have a good day when I can drive that far and get from the parking deck, to inside, and back again.

    And yeah I miss the days when I could just jump out of bed every morning and do what I wanted, when I wanted.

    Great post!

  2. I can certainly relate to this post. I have several conditions that cause me to have similar problems mentioned. Since there are no “outward” signs, a lot of people, even friends and relatives, still don’t get that there is something wrong with me. Any day I’m vertical is a good day to me!

    I would love to be able to do like I used to, but I just can’t anymore. I have learned to adjust to my illnesses in order to make things easier on myself instead of trying to be a martyr. I think the people I know see the few things I can do and think I’m being lazy. I’d love for them to spend a day in my body.

    Thank you for sharing your story. I can certainly empathize!

  3. Ditto on everything. I was a person who power housed her way through life. I assumed that my body would cooperate always with what was on my agenda. If it didn’t, I’d push some more. Now the thought of a shower brings me to tears. Life has changed dramatically over the course of these past 8 years. I’ve taken so many steps with traditional and alternative treatments only to be left existing in a body and brain that screams at the thought of living each day.

    Our social life has ended. Our sons are older, 21 and 24, so I am fortunate that they do not require the hands on care that you little one does, Sandy. I parent from the bed. It’s now about life skills and their questions. They understand the limitations that have been imposed upon me. I don’t. The process of acceptance has been a roller coaster ride and makes me nauseous.

    Yes, everything has to be planned out and analyzed. I’ve had to cancel Doctor Appointments due to the debilitating days and nights. My son’s graduation from college two years ago had to be a 5 day plan in order for me to attend. Even with the best planning, one of the most special days in my and my son’s life was spent with my thinking, Please get me through this upright. Came home a mess. Our younger son graduates next May, and I am already thinking of how I will attend. Plus, the “vain” part of me doesn’t want to be seen. I don’t look like the person I once was. Tremendous weight gain, even following a good food plan.

    Our younger son play college baseball. I’m a “I didn’t miss a thing” Mom at any given opportunity. Could not attend one simple game in the past two years. It it the end of the world? No, but it’s sad. Most days I feel as though I am existing, not living. Friends have finally given in and allowed me to be quiet here and stop playing the role they wish I could play.

    I don’t do errands. I can’t food shop. I could walk around a store for 10 minutes and flare worse. I don’t have one day of reprieve. Perhaps that’s part of the post exertional malaise due to the mental exertion. I only do laundry, and my husband helps me with that. I am the “breadwinner” in the family, only due to a total restructuring of our life with my husband and I. He had numerous job debaucles and I was becoming increasingly sick. We decided that he would take on my role in the home (so hard to let go). What a growing process with pains for us both and a huge challenge to our marriage. So my days consist of waking, taking medicine, going down to my basement office in pj’s and bedhead (I could never work outside the home and have to be showered and dressed). I take some medication that helps with the clarity of the brain for some hours, but I am not the person I once was, and I am always feeling stressed. Yes, I know that’s the worse thing for the illness. The stress of no health insurance or income for my family would be worse. So we take it a day at a time. It a job that I’ve been doing for close to 30 yeasrs, but it carries a heavy load.

    I have a Doctor appointment on Wednesday, which may need to be cancelled. My primary Doctor is having me schedule a scan on the liver and pancreas. One Doctor in a week or two is my limit. This is coming from the person who use to run around from 6 am to midnight. It’s surreal.

    One day when I was actually out and at a gathering for an hour or so, a friend was talking about his previous day and how he was on the go for 14 hours, blah, blah, blah, and all he had to do. I told him that when he got home he was to get down on his knees and thank God for the ability to function at such a high level. He was complaining to the wrong person, and he’s very aware of my illness.

    So, I still fee as though this is a extended nightmare, and I will wake up to the person I once was. The caretaker, the volunteer, the executor of my father’s estate, the go to person for whatever. Those days are gone. My husband reminds me of the emotional support and guidance I provide the kids, along with getting them through college with no loans to contend with.

    I’ve driven twice in the last year. When I was driving, which was local in the next town, I felt as though I had been freed from prison. Windows open, CD playing, sunny sky. What a joy. It lasted for 20 minutes. I had to come home and get into bed.

    Sandy, I don’t know how you do what you do physically. I understand about the minimalization in the home. My home was redone in the early 80’s when I first moved in. The plan was about five years ago to do an “extreme makeover – home edition”. Let me explain it this way. I am typing on my laptop in my bedroom, looking at walls where I ripped off wallpaper years ago, only to be left with old funky green paint, holes in the wall repaired with spackling. I can’t take the thought of anyone working in the house unlessi it’s an absolute necessity. It bothers me, but I keep having to let it go. If I can’t walk up two flights of stairs from my office to my bedroom without almost crawling at the top, then I would be delusional to think I had the stamina to redo this house. Out of necessity we had to replace our kitchen appliances. We had the dimensions and I picked them out in 20 minutes, threw myself back in the car and went to the Doctor appointment. I had my husband go back and finalize the deal. That’s so not me. I was a single parent for years and accustomed to taking care of EVERYTHING. Now I can’t even take proper care of myself. Oh, by the way, the kids are great about the house. Our younger one refers to it as “under construction”. Kind of like me, only I feel as though I’m in the demolition process.

    Well, Sandy, I could go on and on and on, which I’ve already done. You hit a nerve with this topic. I wanted to let you know that every step I take (I can’t believe I just used those words and started humming the song) is planned out, and the best of plans don’t always come through.

    Thank you for your commitment to Even when you are exhausted from lack of sleep or feeling down right awful (our kind of awful), you pull it off.

    God bless you on raising your little guy. I pray that you are given the strength and stamina to enjoy the journey of raising a little boy. They’re great.

  4. Thank you Nancy for your wonderful words of encouragement. It’s great readers like you who keep me going with this site! You’re a gem! 🙂

    Nancy – something you said sounded like what I do at events…as I’m sitting there trying to enjoy whatever it is my son is doing, in the back of my mind I am thinking and praying “God, help me make it through this. I just want to go to bed.” I feel awful sometimes feeling like that because I try to be in the moment, especially for him but pain and severe fatigue doesn’t leave room for much else.

    Sherlock & Teresa – I am sorry that you both feel like this also. It is comforting to know, however, that I am not alone. It always makes me feel a little better when I realize that I’m not the only one who feels this way about life and other things that happen. I’m sorry that we all have to experience it. Please continue reading and posting on here! Thanks! 🙂

  5. Hi. I so relate to all of you. My oldest daughter just had a baby and I have been going over there every day to help with the baby and help my daughter. I can usually get through the long day, but when I get home, I am exhausted and fatigued. I also have neuropathy in my feet and they are usually on fire when I get home. I so want to be present for my daughter, so I don’t complain or anything, but it just seems to unfair that I have to deal with this day in and day out — its so hard to tell your loved ones that you are simply EXHAUSTED and can’t do anything more. I honestly don’t know how I have made is this far, while raising three daughters (27,24 and 17)… the only thing that keeps me going is keeping on going . . but alas, I am tired, overweight and uncomfortable! and of course my exes new wife weights 90 pounds! Thanks for listening. I so want to be a part of this group.

  6. Oh, and by the way, the only natural treatment that kind of worked for me was acupuncture, but it is so expensive I can’t do it anymore. I did see a chiropractor for an adjustment (he said he specialized in Fibro), and got a massage from his massage therapist. I could NOT walk for three days and suffered for another week. Gentle to my body is hardly touching!

    One thing I do use is: one day at a time, or one minute at a time when things are really overwhelmming! Keeps me “kind of” sane!

  7. I can relate on every level. ME and fibro have stolen my life, bit by bit, and it’s so unfair to my son! I had him late in life (infertile – took us 11 yr and infertility workups in FL, Puerto Rico, Scotland, and MD and a lot of practice to get it right – but at least the practice was fun! ;D). He didn’t get my strength, others did. I gave him whatever I could then I had to caregive my mom and he spent a lot of time wondering if he would lose me before he lost his grandmother. She’s in heaven now. I’m in a living h-e-double hockey sticks and can’t wait for my turn to get to heaven some days! But most of all I regret that just when he needs help to go to college, I have become too disabled to work. I have fought fibro since 86 and chronic fatigue since 97. I lost; it won. At least I put it off for a while – but I think it’s getting even with me right now!

  8. Just want to say I couldn’t agree more with all your comments, and empathise with all the planning which has to take place when you just want a day out and unfinished jobs around the house. Even having workmen in to do jobs is tiring! Well when I can afford it, as I can only work part-time now and wonder how long I will be able to carry on doing that. I’m trying to deal with ME and fybro and Crohns and several medications which make me tired also, but don’t think I’ve quite got there yet, as I still miss the days when I could’burn the candle at both ends’ and still hoping for a cure. Also trying to look after my son, who has severe depression and has tried to take his life, so I suppose I’m still trying to act as normal as I can, but just have to go to bed sometimes or I just pass out.

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