The Impossibility of Time Management When You’re Chronically Ill

Merry Christmas and Happy Holidays <3 Oh how I have missed you all. Despite the horrors of 2020, I hope you are all finding some joy within this holiday season.

I am sorry it has been SUCH a big break between my posts. There are two reasons for that:

1. I have not been in a good place. While I think it is important to share during the good times and the bad, I have also, from the beginning, felt it very important that FightingWithFibro never became a rant. I have always wanted it to remain a place of honesty, hope and help.

2. I have simply been incapable. So, remember reason #1? I haven’t been in a good mental place, because my physical “place” has not been good. Since my visit with a new Neurologist, I initially had a good spell and it was absolute Heaven. For a few days there, I actually felt like a normal, functioning human. I even actually had some hope that maybe my new diagnosis and treatment protocol might restore some quality to my life. Incidentally, you can actually read about my newest diagnosis of Vestibular Migraine and my awesome new Neurologist here: https://fightingwithfibro.com/2020/11/12/what-is-a-vestibular-migraine-some-hope-with-a-new-diagnosis/

Well, I was wrong. Those few great days did not last and instead, I ended up completely couchbound. Again.

I spent nearly 18 months couchbound, so this is certainly not the first time it’s happened and I know it will also not be the last. In the years since I was initially so devastatingly sick, I have spent plenty of weeks down. But this time threw me, mentally, for a huge loop. I had allowed myself the mistake of having hope in a new treatment protocol, the hope that maybe with a new diagnosis, that we could improve the constant illness I live with. But the thing that really did me in was feeling normal AND having hope. Because once I wound up back on the couch again and this time without any full days off, I quickly began to mentally struggle.

See, the thing about living with chronic and constant illness is that I LIVE for the two, sometimes three, days a week that I get to spend off the couch. I relish in them. Those days give me a chance to live and feel like a human again. I chat with or see my kids, catch up on texts with friends, tackle the house and try to do anything else that brings me happiness. So what happens when those days no longer come? What happens when the two days per week that I have, to condense all the living I get to do, disappear? The result is not pretty. And this is where I have been for the last month.

I have managed to get a few hours each day, *sometimes*. And in those hours, it is necessary to do the things that cannot wait; like the dogs, the dishes, the laundry and the food shopping (although we did skip buying any food for a week, simply because I was incapable of going to the grocery store). And for me, it was a absolutely strangulating hold to live solely to do the dishes, take the dogs out or throw in a load of laundry, before being relegated to the couch for the day again. It was like some horrible rendition of the movie Groundhog day. I was simply surviving and cleaning, with no semblance of life between. And the longer it went on, the more I mentally struggled.

For many years now, I have known that I no longer live in the same construct of time that most people do. For those of us that are chronically ill, time is a constraint which no longer applies. Instead of days, weeks, years and the future, time becomes until I get sick again, when the next flare comes, when I can get up, can I survive the next five minutes in this much pain, maybe tomorrow will be better, how much longer until the pain meds kick in, how much longer will the pain or migraine last and will I be well enough to enjoy Christmas.

Time, like my body is no longer my own. And coming to terms with that has been just as difficult as the original loss of my life. During this time, on multiple occasions, I’ve had to wonder why it is I fight so hard, just to live another equally torturous day. And I have had to slowly come to terms with relinquishing my two precious days a week, to now somehow learn to relish in 2-3 hours a day.

The pain of that became something that I need to learn to live with, adapt to and accept. Much like the losses of my old life, activity levels, independence and career or the constant pain, nausea, dizzy spells and migraines.

Except, I did learn. I came to a place of acceptance, peace, gratitude and joy and I will eventually get to those same places again, within the new constraints of my life.

How?

By altering my management of time. By letting go of any and all expectations and by relinquishing the semblance of control that I had fought so hard to hold onto. Because as we ALL know, we are not in charge of our bodies or our time. Our fragile and sick bodies determine what and how much time we get. And that is what I have been working on for the last month.

So what have I been doing? Well, a whole lot of nothing, for starters and wallowing in a whole lot of self disdain for a body that won’t work as I wish it would, no matter how good I am. And guess what? It hasn’t been working. So instead, here is what has:

  • I try to keep a schedule. I try to get up at the same time and go to bed at roughly the same time
  • I know that I typically get a few hours, in the morning, after the pain meds kick in, to get stuff done and I capitalize on that time
  • Knowing how sick showering makes me, I try to do what I can, prior to a shower and accept that once I do shower, I’ll be down. (Incidentally, I wrote a post on the difficulty of showers making us sick). You can find that post here: https://fightingwithfibro.com/2019/09/27/sick-from-showering-with-fibro-this-might-be-why/
  • I have asked for more help around the house, so that IF I get some time to myself, it isn’t ALL consumed with chores or responsibilities
  • I have been learning to let go of ‘what needs to be done” and just doing something I want to do
  • We have started to meal plan and make larger sized dinners so that cooking is no longer a nightly responsibility

But most of all, I am working on acceptance and adjusting my expectations. I hold myself to impossible standards of what I should be doing and what I should be getting done. Worse yet, I’ve allowed self deprecating thoughts like: “maybe I’ve just become lazy’ to fester their way in. Most interesting of this is that I do not measure the people I love and choose to have in my life, by those same impossibly high standards. I don’t respect my friends or loved ones because of what they accomplish; I respect and love them for who and what they are.

So now, when the days of nothing but illness carry on, I’m learning to once again adjust the construct of time I live in. If I only get a couple hours a day of humanity; then I’m working to learn on finding five minutes to do some Reiki, five minutes of petting or playing with the dog or five minutes of using Essential Oils.

It’s a far from perfect system and one that often still depresses me to no end. Sometimes, it’s still astonishing to me to be where and what I am now, instead of the “Wonder Woman” I used to be described as.

But we cannot control disease any better than we can control time. So the best we can do is once again, learn to live within the confines of what our diseases allow and look to find peace, comfort and yes, even happiness within those confines.

While I certainly can’t say when I will improve, I know that the pattern has been that I eventually will. When that time comes, I look thoroughly forward to returning to Blogging more consistently.

Please know that you have all been in the back of my minds, knowing that you’re all out there and many of whom are struggling just the same. I always keep you in my thoughts and it brings me great strength.

Much Love <3 Stace

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Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

10 thoughts on “The Impossibility of Time Management When You’re Chronically Ill

  1. Great transparency love. I had to learn the hard way as you have. For me, with Fibro, Chronic Migraine, and a Spine that feels like it’s on fire most of the time, it’s letting my body dictate. It’s not lazy to build up rest. It’s easier for me, as I live alone and don’t have an immediate family to care for. I have learned to ask for help. It was hard at first. Humbling. My daughter in law and son most willingly helpful. I’m praying over you . God Bless. 💜🌺

    1. Thank you for the prayers and comments.
      The hardest part is learning to let go, again, of what precious good time I got to have.
      We obviously can’t fight it, the body *always* wins, but it’s tough to have to adapt to a couple good days a week, to a couple good hours a day. Which (at least for the last two weeks), I could only use to breathe and be grateful I didn’t feel as awful. It can be an impossibly tough road. But……we get there, right?

      I’m happy to hear you have a support system in place. It’s tough to ask for help. The last thing we want is to feel like a burden……but I’m sure that you give plenty in return to those you love. ❤️

  2. Good to hear from you but so sorry to hear that you’re not doing well. I definitely agree that if you get a couple of days a week that you’re feeling not too bad it’s a must to get done what you can to try and catch up on the days that you’re flat out on the couch. Unfortunately it’s extremely hard to find the happy medium so that you don’t overdo it and flat out again. The one thing about living with chronic illness is that we have all had good practice for the quarantine of covid. Wishing you and your family a safe and peaceful Christmas.

    1. Thanks Kim!! You’re so right. It’s such a delicate balance. And it’s tough-sometimes all I can catch up with is what’s necessary. With my cognitive issues the bills are a nightmare-but obviously can’t wait!!
      So I’m always grateful and relieved to get done what’s needed, but often I have nothing left for what I’d like to do. Mostly, I can handle that, but boy, lately, I’ve felt like a petulant toddler wanting to stomp my feet and cry. It can get old.
      But how absolutely right you are! None of us have really had to change our habits for Covid! I rarely leave the house anyhow! Though it is nice when I can!
      Thank you for my Christmas wishes ❤️
      I wish you and your family the same.
      Thanks for reading and commenting!!
      ❤️❤️❤️

      1. New reader here!! I just found your blog via Pinterest, and I understand your struggle. My current one isn’t where you are and has never been as bad as yours, but I know what it’s like to be physically, emotionally, and mentally DOWN like that for months and months on end. After “recovering” from my worst times, (and I know you’ll understand this) Im thankful for the struggle because I/we/all with chronic illness see the TRUE and REAL value of the little things – a relaxing walk on a sunny day where you feel kinda like a normal human. A beautiful flower you’re able to bend down and pick. The ability to walk through your house, take a deep breath, enjoy it, and feel healthy. The ability to eat your favorite food without feeling nauseous. The ability to enjoy the taste of your morning coffee without being distracted by the vice-like pressure you feel in your head and neck… We experience miracles more than the average person… As odd as that sounds… Keep those little miracles in the forefront. ❤️

        Sending lots and lots of love, hugs, encouragement, good vibes, etc., etc., etc. ❤️❤️❤️

      2. Beautifully said, Dorothy and I whole heartedly agree. I’m guilty of having never slowed down when I was healthy. It was just in my nature. So not that I didn’t appreciate life, but you’re SO right…..I didn’t understand the power of feeling well. Now, when a migraine lifts or the nausea stops, it’s such a beautiful feeling. Dog walks feel like exotic vacations…..it’s one of the (very few) upsides to it all.

        I’m very happy to hear you’re on the other side of your worst times. But no one’s worst is any less traumatizing than another’s. Being down is being down and it’s a tremendous challenge to get up again.
        I think the biggest miracle of it all, is that we DO get up again.

        Thank you for reading and your thoughtful and beautiful comments.
        Know that I haven’t lost hope or lost sight of ALL the beauty & miracles around me. No matter how low I get, I am always full of gratitude.
        Sounds like you’re the same.
        But oh how awful the rough patches can be.
        I’m grateful you found my Blog and commented. Thank you ❤️

  3. Finding a group of people who understand that we’re not lazy or swinging the lead is part of the battle, and I thank you and your correspondents for the lovely comments. It’s quite true that for us Fibro Warriors, and indeed for an awful lot of the chronically ill, the Covid restrictions feel a lot like our normal lives. Odd to think that we are the experts in how to live within stricter limits! And yes, it’s quite horrid, admitting that we can’t cope alone any more, that we can’t be as active in supporting others any more, that we are the ones who now have to ask for help. Thank heavens for our support networks. Best wishes to all of us!

    1. Well said, MA!!
      Thank you for your kind words, I’m grateful you found my blogs and all my most fabulous Readers’ comments helpful. They really are an amazing group of people.
      Funny enough, I have yet to find a lazy one of us amongst the bunch. If anything, we’re all just the opposite. Only hindered by disease.

      You’re right, the COVID restrictions are much like normal life-seems we’re the only ones not having to adjust to such extreme life changes!!

      How right you are, Amen for our support systems. I could never do any of this or cope without my supportive Husband and kids ❤️

  4. Hope you quell those nasty cytokine storms, if even a little. Nasty business these inflammation issues.
    Robin has been doing better with low dose Naltrexone. It is still under study and she does not want pharmaceuticals, but she’s was done with all other methods she’s tried over the last 24 years. A brief window of normal, or several brief windows during the week has been noticed (by me).
    She still experiences down days and must stay within limits, but I have noticed a difference.

    1. Oh, I’m sorry she’s resorted to Pharmaceuticals. I know it wasn’t something she wanted, at all. It’s a terrible choice. I hate swallowing all that poison, but I have no quality of life without medication…..So eventually, you have to decide which is worse.
      BUT…..it sounds like she’s having a good experience with Naltrexone. I’m SO happy for both of you!! That’s great!
      And you know, Mark…those brief windows are what keep (at least me) going…..It’s the little glimpses of life that give us some semblance of normalcy.
      Yeah, this storm has been long and particularly ugly, but we get through them….which is always miraculous to me how strong people are who live with this.
      Robin included ❤️
      Wishing you and Robin a Merry Christmas and/or Happy Holidays. I will keep my fingers crossed and pray she continues to do well on the Naltrexone!!
      Be well ❤️

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