Helping women with chronic illnesses
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Time Management And Illness

The following post was written by my friend Stacy. Fibromyalgia and endometriosis are among her chronic conditions. Soon I hope to post about my recent experiences with chronically ill travel. I am still quite drained from a few days out of town, though. So, in the meantime I am publishing this guest blog post written by Stacy.

Stacy_new

It is after 9:00 pm and I am writing this from my office desk. I have been at this desk for more than twelve hours today. I’m plugging away as fast as I can. I may sound like a workaholic but what I am is a working woman battling an auto-immune disease. Fibromyalgia and I are at war. I feel good today and haven’t even had to take ibuprofen so I am going to squeeze in as much work as I can. I know that a pain filled, completely exhausted day is on the horizon so I am doing what I can while I am able to focus. I have a fairly high level and very high stress sales position and I don’t want to give it up; so I work when I can and leave early to cuddle up in soft flannel pajamas on my feather bed topped cuddly bed when I am not able to work. I hope that someday in my lifetime there will be a better way to fight auto-immune diseases but in the meantime, this is my way.

I am stronger than my illnesses in my mind and today my body is matching that thought.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Time Management And Illness

17 comments

1 YayaNo Gravatar { 09.01.09 at 5:49 am }

So true. Great guest post. I have my days where I feel great and I “go go go” and then I have my days where I sleep the whole day. I try to make the most of my good days. For example, if I’m having a good day I try to make last minute plans with a friend for that day. It’s so hard to schedule out stuff like that since I have no idea what I’ll feel like when the actual day comes along.
.-= Yaya´s last blog ..Friday Fragments/Focus Friday =-.

2 JeanneNo Gravatar { 09.01.09 at 3:29 pm }

Alicia,

Yes, Stacy makes some great points about maximizing the “good days” with full knowledge that there will be “bad days” on the horizon. Like you and Stacy, I have my very active days and I have my very inactive, sedentary days. It is hard to schedule things in advance when there’s no way to predict how we’ll feel on a given day. I think anyone who is chronically ill can relate to this on some level.

Jeanne

3 SonjaNo Gravatar { 09.01.09 at 4:27 pm }

Oh yeah, great post. Definitely can relate about maximizing the good days. It’s a way to cope. The skill comes in making sure you can maximize it while not overdoing it, setting yourself up to fail.
.-= Sonja´s last blog ..100th Post! =-.

4 JeanneNo Gravatar { 09.01.09 at 4:38 pm }

Sonja,

You bring up a very important point! Maximizing what we get done on the good days is great but we do need to be careful not to overdo things on those days. I have seen this so much in my local endometriosis support group. Patients so often do too much on the “good days” and then pay for it later with extreme symptoms that might have been prevented or minimized. I know I have certainly made the mistake of pushing myself too hard… only to pay for it later. Pacing ourselves is important too. Excellent point!

Jeanne

5 ElizabethNo Gravatar { 09.01.09 at 8:18 pm }

Good for you – I work as a tax CPA so I am in the same boat with high stress only it’s migraines that I battle. Have to worry about pushing too much in when I feel good that it doesn’t’ bring on the pain.
.-= Elizabeth´s last blog ..Babysitting nephews =-.

6 Jenni Saake - InfertilityMomNo Gravatar { 09.01.09 at 10:21 pm }

{{{hugs}}} to all.
.-= Jenni Saake – InfertilityMom´s last blog ..IVIG 4, heading to Stanford, and a Busy September =-.

7 JeanneNo Gravatar { 09.01.09 at 11:49 pm }

Elizabeth,

Yes, Stacy has opened up an interesting discussion! So many patients struggle with “balancing”… for some it’s balancing work vs. home, for others it’s balancing basic things such as whether to tackle a shower/bath with very limited energy and severe pain or whether to skip a day to conserve precious energy. Still others struggle with how to fit social engagements into their schedules when they are struggling to simply get through the day. Some may struggle with a combination of all of the above. I believe we need to learn how to listen to our bodies and heed their warnings. Pushing ourselves too hard can be counterproductive. Not pushing ourselves hard enough can have negative consequences too. I think it’s really important to strike a balance.

Jeanne

8 JeanneNo Gravatar { 09.02.09 at 12:18 am }

Jenni,

Hugs back to you! I hope your IV treatment goes as smoothly as possible!!

Jeanne

9 endochickNo Gravatar { 09.02.09 at 12:47 am }

Time management is something all chronically ill people need to learn (says the person who is typing this while her YouTube video loads even though she just Tweeted how she was going to go to bed).
.-= endochick´s last blog ..Last night =-.

10 JeanneNo Gravatar { 09.02.09 at 12:55 am }

Endochick,

Ah! Talking about doing something and actually doing it are two different things, right? 🙂 Seriously, I totally agree w/you that time management is very important for the chronically ill. No matter how hard we try, there are times it’s difficult, if not impossible, to manage our time as well as we’d ideally like. We just do the best we can.

Jeanne

P.S. Sweet dreams.

11 AmandaNo Gravatar { 09.02.09 at 7:23 am }

Jeanne,

sorry about not commenting for a while… the trip to Italy took all my focus (it was absolutely beautiful btw and Tim proposed, how romantic!! photos are on my latest blog post)

Anyway… the traveling is tiring of course but I feel a hell of a lot better than I thought I would thanks to some new travel sickness tablets and buccastem which I had when I first had the ear infection and was suggested to take to ease the effects of flying on my inner ear… still felt rough last night but it didn’t last too long!)

We’re off to the other wedding on Saturday coming so not much time but we’re getting there and it is all so beautiful and amazing it far makes up for any exhaustion (though ask me the same question when I’ve been back at work a week and having to move all the boxes of brochures and stuff to our new office!!)

How are you doing, other thank being exhausted from the travel?? How are things going with the dizziness and the absolute exhaustion you can’t even wake up? I hope you’re feeling a bit better? xx

Oh and I loved this post – very honest and true!! Thanks xx
.-= Amanda´s last blog ..Roma – beautiful, romantic Roma =-.

12 JeanneNo Gravatar { 09.02.09 at 12:10 pm }

Amanda,

Oh my gosh… please don’t apologize. I can only imagine you have been busy with the trip to Italy.

CONGRATULATIONS ON YOUR ENGAGEMENT!!! 🙂

That’s awesome!!!

I will have to check our your post! I am so happy that you found a way to travel without getting so sick!

You sure are going to a lot of weddings! I remember when I was at the age where all my friends were getting married at once. It was a busy time!

The trip definitely drained me and I have been trying for over a week to blog about it. I’m just very tired. I started writing about it last night, finally, but it’s a work in progress. However, the dizziness and profound fatigue I was experiencing back when I was feeling faint every day are much improved. So I am grateful for that. My beta blocker medication was adjusted and my blood pressure isn’t plummeting the way it was. I’ll see the cardiologist and the primary care doctor again in a couple of weeks but it’s much better.

Yes, Stacy always hit the nail on the head with her guest blog posts, doesn’t she?

Thanks Amanda! Congratulations again!!

Jeanne
xoxo

13 Dorian aka coffeesister |_|)No Gravatar { 09.03.09 at 5:13 am }

Perhaps it’s because I have no meds or treatment to support the good days or diminish the bad ones but there’s a direct & immediate price to pay if I try to take advantage of my sporadic functionality. For each day I push myself, I risk triggering any number of worsening symptoms & lose at least the next day. If I’m lucky, it’ll only be a 1 for 1 exchange; I’d more gladly sacrifice a day to get more done on the previous one if only it ever really worked that way. ~_~

Having been bed-ridden, I’m no doubt more wary of triggering events than I may even need to be. As I contemplate what many of you fit in while you can, I start to understand why most of you get so much more done than me. However, I just take it slow; doing what my brain as well as my body will co-operate with, taking breaks throughout my endeavors, in the hope that — when I want to do more — I’ll have gotten enough rest to have some spoons on reserve. Am I fooling myself? Who knows!? Should I just use the spoons I have while I have them?!

(|_|*cheers*|_|)
“See where your own energy wants to go, not where you think it should go. Do something because it feels right, not because it makes sense. Follow the spiritual impulse.” ~ Mary Hayes-Grieco
.-= Dorian aka coffeesister |_|)´s last blog ..Latest Quotationary =-.

14 JeanneNo Gravatar { 09.03.09 at 2:32 pm }

Dorian,

First, let me say that I think it’s abominable that we don’t have universal healthcare in the United States.

I think you are making smart choices! If I did not have health insurance, I’m sure I’d be far more cautious than I am. By that I mean that I would probably be doing exactly what you are… It sounds like you are not “taking chances” by “daring” to engage in some of the types of activities I do because in the back of your mind you know that IF the consequences of engaging in those activities wind up being serious enough to require medical management, there will be no painkiller or physical therapy or acupuncture to help do damage control after the fact. (I’m no daredevil but I fully realize that something as simple as me sitting in the car for the short trip we just took is still affecting me 1.5 weeks later, for example).

We need universal healthcare!

It makes perfect sense to me why you would feel the need to be more cautious! The safety net is just not there. 🙁 You and I have discussed this elsewhere. The very fact that you don’t have health insurance forces you to be extremely cautious in what you take on because you know subconsciously that you can’t afford to worsen your condition… even marginally.

As far as the 1 for 1 exchange, there are plenty of times when it does not work out to a 1 for 1 exchange for me. That concept is not exclusive to not having insurance. I think anyone who is chronically ill can relate to the concept of “pushing the limits” for a day and then paying for it for many days or weeks afterwards. I know exactly what you’re talking about there. Yes, it’s easier to “sacrifice a day” when we know (or think we do) that it’ll only result in losing another day. Too often, “sacrificing a day” results in losing far more than just one day afterwards. This is all part of the balancing act that I believe all chronically ill patients struggle with, insured or not.

Certainly, not having health insurance complicates matters. As you and I have discussed, I believe the need for health care reform is absolutely urgent. Having almost lost my house thanks to medical bills a few years back (and believe me this is just the tip of the iceberg on what we went through due to catastrophic medical bills), I have the utmost respect for your grace and dignity as you struggle, without health insurance, to function as best you can! I deeply admire your work on twitter advocating for health care reform and I hope you will have much-needed health care soon!!

Since you have been bed-ridden in the past, it makes perfect sense you would be cautious in pursuing any activities that might cause that to happen again. I think you are smart to be wary of triggering events. It sounds to me like what you’re doing is (wisely) protecting yourself.

Honestly, I don’t think looking at what a series of people gets done and comparing is necessarily helpful because everyone is different. Each person’s body is different, people have different histories (like yours with being bed-ridden), people have different health insurance situations, etc. I think you should “give yourself a break” and be proud of all that you DO do!

You are a fierce advocate for health care reform on twitter. You are spreading information and educational materials to help people better understand the health care reform cause. You should stop and take a moment to give yourself a pat on the back because you truly are accomplishing a great deal on twitter for health care.

Readers, you can follow Dorian (aka coffeesister) on twitter: HERE.

It is good that you are listening to your body and mind regarding what your limits are! It is your body and mind that you need to be concerned with, after all. You are doing exactly what you need to do for your own health.

Some people might even take a cue from you about the importance of slowing down, taking those needed breaks, and conserving those spoons. I know you want to do more. I think we all want to do more than what we’re doing, regardless of how much we’re already doing.

In my opinion, our Western society has us “brainwashed” in a sense that everything is all about being PRODUCTIVE. Don’t get me wrong, productivity is a good thing. However, when we become obsessed with sheer quantity of output… even in cases where there are medical conditions that limit our capacity to be “productive” in the “traditional” sense… I think we endanger our health and lose perspective.

Also, there are different definitions of “productive”. Productive isn’t necessarily about how much work is done at a paying job, for example. Productivity could be measured in other ways.

For example, how many people have you helped with your health care reform messages? Probably more than you’ll ever know. How many people have you helped with your uplifting tweets, inspiring quotes, and messages of compassion? Immeasurable. You may not make a penny doing these things but I would argue that you are extremely productive!

I don’t think you’re fooling yourself at all. From the discussions we’ve had elsewhere, I think you are putting your spoons to good use. I think you have a good intuition and that you have learned the hard way the consequences of pushing too far.

Excellent quote! Follow your gut, Dorian. You have good instincts. I think they will tell you what’s right for you!

I know you are going through a challenging time right now on multiple levels. I am thinking of you!!!

Jeanne

15 Dorian aka coffeesister |_|)No Gravatar { 09.07.09 at 5:31 pm }

I cannot thank you enough for the feedback, insight & encouragement! It has been a saving grace that I live by other cultural norms rather than our own 😉 & has no doubt saved my life, in fact. Moreover, it’s a life I live by quality not quantity so do again really appreciate your support. I am indeed an advocate for rest as well as universal healthcare 😀 thus hope we’ll all focus on doing what we can to make our lives better (not to mention more livable). To each & every one of us who’ve had the challenge — maybe even privilege — of learning first-hand just what truly matters & how to prioritize.. (|_|*cheers*|_|)
.-= Dorian aka coffeesister |_|)´s last blog ..Latest Quotationary =-.

16 JeanneNo Gravatar { 09.08.09 at 12:20 am }

Dorian,

I’m glad you found the feedback helpful. Yes, you have been advocating for the importance of rest for all the time I’ve known you. 🙂 It’s funny that you bring up the notion of the challenges brought up by chronic illness as being a privilege because I have heard this notion time and time again over the years and especially in the time I’ve been blogging (and meeting so many other people who are chronically ill with all sorts of conditions).

I agree with you that it’s indeed a privilege to learn first-hand what truly matters/how to prioritize. As difficult as it is to be chronically ill, I truly believe being so affords us the opportunity to hone in on what matters better than we might be able to if we were healthy.

Chronic illness changes our perspective. I believe most chronically ill people eventually come to see this positive outcome of such a negative situation. For me, this is one of the notions that comforts me through the nasty aspects of being chronically ill… knowing that the illness (illnesses in my case) help me to better discern what matters most and help me to sort out where to devote my limited time and energy.

Jeanne

17 I Will Not Suffer In Silence » Blog Archive » Downtime is near { 07.02.10 at 5:54 pm }

[…] back, and my pelvic region felt like it had all been beaten up. I did not bicycle to work that day. This small blog post sums up exactly what I go through on a regular basis. It is written by a woman named Stacy, who guest-blogged on Jeanne’s endo blog: It is after […]

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