I would love nothing more than to write a detailed, inspiring, thought-provoking article today. My body says no. So this brief post will have to do for today but I hope it sparks a conversation with endo blog readers!
I have learned the importance of listening to my body. I think this is an important lesson for anyone who is chronically ill.
Years ago, I would feel guilty when I had to slow down and rest. I don't feel that so much anymore. I have accepted the fact that I have numerous chronic illnesses and I do the best I can to manage them and be productive... but there will be days when I just have trouble functioning at a basic level.
So this quick post is about the importance of listening to your body. I have learned some hard lessons about the consequences of not listening to my body. Now I know that when my body says, "slow down and rest"... I need to listen.
So I'm going to go do that but I would be thrilled if this post can spark a conversation with others out there who know what I'm talking about. I know there are others out there because about 90% of my local endo support group members have shared with me that they have these days too.
Please share your comments on the topics of listening to your body, physical exhaustion, emotional exhaustion, chronic pain/illness, co-existing conditions, and feeling drained. I know there are readers out there who know what I'm talking about and I'd love to hear from you!
That's going to have to do it for me for now. I'm just too tired to type!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
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14 comments:
I totally agree Jeanne! Some days you just need to rest and listen to your body. Good for you! :)
Alexandra
www.curetogether.com
Thanks Alexandra! :)
I have those days every day! It's all I can do to drag my sorry butt out of bed. I've learned to keep my pain meds right beside my bed so I can take them first thing when I wake up.
I'm a single mom with two kids so even when I have those days, it's almost impossible for me to take the time to rest and relax. I drink coffee, put on some upbeat music, watch or read something inspiring, etc. to get me going. This usually works well but when you have chronic pain it can get really depressing at times.
It's really helpful to hear from other women who suffer the same thing however, even though it's sad to know there are so many. But hey, strength in numbers right? :)
Hey Cassie!
We've talked offline but I know this is the first comment you've posted here on the blog... so welcome!
I have my little tricks to get moving too. Like you, I rely on upbeat music and also taking in inspiring materials. I don't drink coffee but will acknowledge that I drink more Pepsi than I should. Sometimes I feel like I need some caffeine just to function safely. I know Pepsi is not the healthiest thing for me, though. Yes, chronic pain often leads to depression. This is very common.
I agree with you too that it's helpful to hear from other women who are struggling with the same/similar issues. At the same time we obviously wish there weren't so many suffering!
I like your attitude about "strength in numbers", though. If enough people speak up about this illness, I truly believe we can make a difference!
Thanks for joining us. :)
Jeanne
Jeanne this is one that is near and dear to my heart-chronic fatigue. This is the one that frightens our family and friends.
I, now, believe it frightens them because they look at us unable to get out of bed and, silently, think if it happened to them it can happen to me. And, it can!
But, their inner fear, their protective mechanism is to put us down for not being able to overcome the fatigue and move on with our day. we can not and we should not even try. It is our inner voice-our core talking to us.
When we don't listen to our body, the sicker we feel and the longer it takes to recover.
In May of this year, I wrote a blog entitled "Stop Fighting Chronic Fatigue Syndrome. You Will Not Win". And you will not.
http://livingwithachronicillness.blogspot.com/2008_05_01_archive.html
When our body says rest, we should accept what it is telling us to do. We only have one body. We can stop now and rest for a day or two. Or we can attempt to keep going and be bed ridden for several days or weeks.
Not listening to our body breaks down our body's immune system and allows other illnesses to enter.
As a result, we lie there wondering "why did this happen to me now". Can't you just imagine our body answering. Are you CRAZY?
Jeanne I am glad you are resting today. You need and deserve it. Rest, rest, rest,... :~)
Jeanne,
This is something that I am still coming to terms with, and learning how to listen to my body and approaching symptoms and exhaustion. You are the one who has taught me to do such a thing and who also reminds me to do so! I used to always get sick because I ran myself ragged, but now I'm getting better at catching myself before I go overboard on activities. It's hard to listen to your body when your mind says 'go, go, go', but it is essential in order to maintain my health.
Mckay k,
I agree with you that family and friends can really have a very tough time understanding all sorts of chronic illnesses and also that they can be frightened by them! (WE PATIENTS GET FRIGHTENED TOO)! Not only can it provoke fears in them that it could “just as easily be them” but my experience in talking with both patients and their loved ones is that they often feel HELPLESS and aren't sure how to "make it better". This causes frustration all around! While there are occasionally things loved ones CAN do to help (I’ll take a massage, dear hubby, if you are reading this!!!), sometimes there ISN’T anything anyone can do to "make it better" (except MAYBE to listen)…
It's true, Mckay k, that sometimes those who are healthier than we are will instinctively “put us down” rather than experience the helpless feeling of not being able to help “lift us up"! It's easier for people to put others down than to “get creative” and figure out *HOW* to be supportive and helpful… *HOW* to assist the patient in coping with the challenges associated with being chronically ill.
It's tough on both the patients AND the loved ones!! I absolutely agree with what you said about it taking longer to recover when we don't listen to our bodies. I have experienced the consequences of ignoring my body's signs and they are not pretty.
I read the blog post you referenced. The examples you gave of cramming too much into a week (and what happened next) are a terrific illustration of how overdoing can have a direct effect on one's health! This is a hard thing to accept when one is trying to accomplish as much as possible for his/her own personal satisfaction, to satisfy a loved one’s expectations, to satisfy an employer’s expectations, OR just our society's expectations!
We live in a society that highly values productivity. There's certainly nothing wrong with being productive! However, when someone's illness reduces their productivity or simply slows them down... it's too easy for others to frown upon them for the reduction in productivity or slower pace (that their illness causes). There IS a stigma attached! It’s easy to throw out words like “lazy” for people who are anything but lazy!
Being chronically ill is hard work!! I work far harder just getting through the day now than when I worked 80+ hour workweeks (obviously I had fewer illnesses then or I couldn't have pulled those hours)!!! Plus I got paid for what I was doing then!
If someone is ill, it is not their fault. Yet, too often my support group members will tell me how guilty they feel if they don't accomplish tasks x, y, and z simultaneously!
I'm not saying that I never feel those pangs of guilt when I can't keep up with others' expectations. You'd better believe I do! The thing is that after 26 years of having endometriosis I am coming to realize more and more that it's NOT my fault that I'm sick!
Are there times I feel badly that I can't participate in a certain activity or keep up with others around me? You bet!
At the same time, I have to remind myself (!) that if I try to “keep up” and if I fight against my own body, I will lose the fight. So will those around me! In the long run, EVERYONE will lose if I fight nature. This statement is a very similar line of thought to what you said in the blog post you mentioned, Mckay k! (Hint, hint… everyone go and read Mckay k’s post that she referenced above).
FORCING yourself to do more than your body can handle can result in permanent damage to the body or easily weeks of lingering pain as a consequence. It's a very hard (and painful) lesson to learn!
Does that mean to give up and become totally 100% sedentary? No, of course not. I'm certainly not suggesting "giving up". What I am suggesting is recognizing one's own limitations and accepting them for what they are!
Our bodies are smart enough to warn us when there is trouble (usually, anyway). We just need to pay attention to what our bodies are telling us! That's the part that can get tricky!!
Sometimes it's VERY hard to prioritize and to figure out which activities either need to wait until later or can't be done at all!
That said, I can "talk the talk" but can I "walk the walk"??? What I mean is that I didn't listen to my body today as well as I should have. So I "talked the talk" but didn't quite walk the walk".
In other words, I posted today about the need to listen to the body and the other day about relaxation --- but then I caved and ended up doing blog-related work both days anyway! (Wake up and smell the coffee, Jeanne)!
In fact, I have worked on the blog at least some part of the day - each day - since I started it on June 1st! Granted some days I put in more time than others… However, I truly haven't had a true DAY OFF since I started blogging on June 1st!
So watch me and see if I can do a better job tomorrow following my own suggestion!! (I’m issuing myself a challenge, here)! I'm going to try to go one day “blog free”: tomorrow. I'm going to write a post tonight, if time allows, and schedule it to post in the morning… It will basically say that I'm taking a real DAY OFF tomorrow. Then I will give myself permission not to write a post tomorrow *AND* not to reply to any comments that may come in (until the day after tomorrow at the earliest). We'll see if I can do it!
(For those out there who don't write a blog, there much more to writing a blog than just the posts that readers see and posting the replies to readers' comments. There's also installing tools on the blog and otherwise maintaining it. There's also networking with other bloggers - an aspect of blogging that means wading through ENORMOUS amounts of email and takes FAR more time than I ever could have imagined when I started a blog! Plus there’s researching for articles and simply reading through other blogs and websites to sift through the info and try to pull out what readers will find meaningful to them. It all takes time)!
Don't get me wrong... I'm not complaining! It just takes much more time than I imagined it would before actually doing it myself.
Mckay k, I say "you only get one body" to people all the time!! So I chuckled when you said it in your comment!! I say it to endo support group members when I'm concerned about them overdoing. (Of course, I need to "practice what I preach" and that doesn't always happen).
I am a walking example of what happens when someone pushes their body too hard. Just call me Exhibit A! I can no longer work outside the home because I have so many chronic illnesses that so severely limit me in what I can do. I used to routinely work 80+ hours a week (for almost 2 years straight). You talk about an unbalanced life! I lived it!
The beauty of blogging is that now I can get up and stretch whenever I need a break to do so… especially so that my fibromyalgia and neuropathy won't get way worse. Also, anytime I need to use the facilities, there they are, right there, just a few feet away from me in my own home… when I need them. (Those with interstitial cystitis, endo, and IBS know what I’m talking about)!
At the same time that I am finding ways to do blogging, I'm sick enough that travel is VERY challenging. I'm talking about finding it extremely challenging just to get to all of my doctor's appointments!!
I'm sick enough that I have to plan out everything I possibly can in advance.
When I read the Spoon Theory a few years back (see http://butyoudontlooksick.com/the_spoon_theory/) it REALLY resonated with me because for years I used to “use up my spoons” and “go into the next day's reserve”... only to find the next day that I had put myself in real danger my "borrowing ahead" like that! (Hint hint: read the Spoon Theory)…
So, Mckay k, I'm going to do my best tomorrow and listen to you and your "rest, rest, rest" comment by not blogging tomorrow. Thank you for reminding me that I need to actually act on my own suggestions!!
Alicia,
I have been coming to terms with this for years and I still have a lot to learn! Just see my (detailed) reply to Mckay k above to see just how far I have to go! In it, you’ll read about the challenge I have issued to myself to go blog-free for a day tomorrow!
It is HARD!! Our society teaches us to “push” to excel, to “push” ourselves to our potential, and to “push” to achieve.
What our society DOESN’T teach us well AT ALL is: HOW TO RECOGNIZE OUR LIMITS!!
Recognizing our limits doesn’t mean “giving up” (again, see my reply to McKay k above). Quite the contrary. It’s knowing when to either slow down, re-prioritize, or REST as Mckay k put it. It’s to figure out how to focus our energy in a HEALTHY way!!
I remember how worried I was about you when I first met you! You reminded me very much of myself when I was in my 20s!!!
I was concerned about you having as many illnesses when you get to be 39 years old as I have now! That is why I tried so hard to warn you of some pitfalls that commonly befall endometriosis patients (and other chronically ill patients). I could see where you were headed if you didn’t slow down and I was truly worried for you!
I am VERY, VERY proud of you!!! You have taken so MANY steps towards self-care in the last many months!!! You have gone to frequent acupuncture (so frequent that I’m green with envy… hee hee). You have investigated herbs & supplements and learned what does and doesn’t work for you. You value the importance of sleep (even if you sometimes share an insomnia-filled night of blogging/emailing with me). You are EXCELLENT at taking in the present moment and truly appreciating it!!! I have learned so much from reading YOUR blog posts about going to the park or spending a day with a friend. Sometimes I get so intense about endo that I lose the “everyday stuff” and you have truly helped me to recognize that I have more work to do in this area!!
Like you, my mind says, “GO! GO! GO!” and I have to slam on the brakes sometimes to slow down!!! That is my # 1 biggest problem, no doubt! My body CANNOT keep up with my mind and it is incredibly frustrating when you feel like you are trapped within your own body!
I am learning, though, bit by bit… that it does not pay off in the long run to overdo things! There is always a price to pay in the end!
The reason I am so passionate about the local endo support group and now about this endo blog too… is that I truly believe people can learn from my mistakes and that by sharing my story, I can help to prevent future suffering of others by helping them learn how to SLOW DOWN NOW BEFORE THEIR BODIES FORCE THEM TO!
If I can prevent one person out there from suffering then it is worth the time of writing the blog, communicating with local endo support group members, and replying to readers’ comments’ here. The trick is not to harm my own health in the process.
After almost 7 years as an endo support group leader, I have learned a great deal about how to balance this out. However, today’s overdoing shows I have more to learn! (See my reply to Mckay k above for all of the details on how ridiculously I have been overdoing).
I plan to recharge my batteries tomorrow. We’ll see after that. We have relatives from out of state coming to visit following that. So my one day off of blogging could easily expand beyond one day… and THAT’S OK!!!
I have to learn to PRACTICE WHAT I PREACH!!!!!
Oh wow, where to begin? That is such a difficult concept to get across to people, because on the outside we don't "appear" sick... the spoon theory thing. How do you explain that constant pain has sucked every ounce of energy out of you? That you've been going on 1-2 hours of sleep for MONTHS and just getting out of bed takes monumental strength? So, so frustrating... And then a lot of days you forget that yourself and try to do too much or get angry because you want to and can't. *sigh* It's hard to even give myself permission to have those "lazy" days... I know I need them, but it always happens at the most inopportune (sp?) moments!
Alex,
Wow! You said a mouthful! I totally agree with everything you said and how you said it. The "invisible illnesses" are the trickiest, I think, because when you don’t look sick… people just can't seem to comprehend how sick you really are!
Recently I found a blog with "invisible illness" right in the title. It is written by Sherril Johnson, a patient advocate who leads/facilitates support groups for fibromyalgia and NAMI Connections. Here is her blog:
http://theiciexperience.blogspot.com/
I was first made familiar with the term "invisible illness" when a fellow endo patient/friend and I attended an excellent workshop at a local college on "chronic illnesses and disabilities".
They devoted entire workshop sessions to "invisible illnesses" and we talked at length about the profound impact that invisible illnesses have on patients AND that it is especially frustrating for those chronically ill patients with invisible illnesses because so many people just can't wrap their brains around how someone who looks well can be so very ill.
It was the first time I had heard the term "invisible illness” used but it seemed to me to be a great way to describe it!
As I've mentioned elsewhere on the blog, I too am a big fan of the "Spoon Theory": http://butyoudontlooksick.com/the_spoon_theory/ that you mentioned.
You are absolutely correct that the pain literally drains the energy right out of you. Like you, there are times that I have operated for MONTHS on somewhere between 1-3 hours of sleep a night on average. This makes simple daily functioning a challenge and is obviously not healthy!
You described it perfectly when you said it takes monumental strength simply to get out of bed! It is incredibly frustrating on so many levels.
Every chronically ill person I know (and there are many) has days where they are able to somehow distract themselves from their pain/limitations just long enough to overdo activities... only to "pay for it" later. The paybacks for overdoing can be severe… even permanent in nature.
Or, as you also pointed out... there are days when we're 100% aware of what we CAN'T do and it results in anger. Yes... It is hard to give yourself permission for "lazy days" mainly because that is how others look at it... as the patient being "lazy".
In reality, on such days the patient is wisely engaging in the rest needed to prevent burnout and further/additional illness. Pushing too hard can definitely lead to more illnesses/diagnoses cropping up OR exacerbating existing illness(es). There are many co-existing illnesses that are often found in endo patients (fibromyalgia, irritable bowel syndrome, and interstitial cystitis being just a couple of examples). I believe that by pushing myself so hard when I was in my 20s (working 80+ workweeks, for example) that I have acquired some co-existing illnesses that I might have prevented had I listened to my body better and SLOWED DOWN.
Another site that I've mentioned on this blog before but is worth mentioning again is Mckay k's chronic illness blog. I believe those reading this comment section will appreciate her blog if they haven't already seen it:
http://livingwithachronicillness.blogspot.com
I couldn't agree with you more. The days I REALLY feel like I need rest seem to coincide with the most inopportune moments... generally when things are the busiest/most stressful!
I have been getting acupuncture for over 7 years now. One day we were discussing meditation (with my acupuncturist responding to what I was saying by very gently reminding me that I really should incorporate meditation - or some similar relaxation technique - into my daily routine). Then I said, "but it's so hard to find time to do it when I have so much going on".
He is a very wise man. He looked me right in the eye and said something that sounded so logical and so common-sense that it really rang true for me. He said, "Jeanne, the times that you are most stressed out and busiest are the times that you could MOST benefit by making time for meditation/relaxation techniques". I was speechless (which is pretty rare)! He was right! The times I need MOST to slow down and relax are the times when my body and mind are the most taxed! I had never really thought about it that way but in my gut I knew what he was saying was very true!
Does that necessarily mean I always find a way to implement his advice? No, I'm afraid not. Sometimes I get caught up in the "whirlwind" and forget to practice my self-care.
What stuck with me, though, in what he said is basically that if I'm smart (my word choice, here) I will try my hardest NOT to lose sight of his suggestion: to look at times of high stress as times when I need to use my relaxation techniques (meditation is just one example) the MOST!!!
Yes... it's sometimes easier said than done. However, my brain knows that he's right. Now I just have to strive to make it happen!
Jeanne
P.S. I think the most frustating part isn't the agonizing pain or the sleep deprivation that often follows it. I think the MOST frustrating part is when those around us DON'T UNDERSTAND! It is a constant challenge!
I believe we are all getting it now. It is not others we need to change, It is our way of thinking about them and our illness.
Maybe we can have a contest to find a better word for our "down days" other than lazy. I am erasing the word lazy from my vocabulary. OK endo community- let's replace it with something new. My input is "down day".
Our body really does talk to us. I have three books of meditation in my bed, yes in my bed, right now. I have a queen size bed and sometimes I don't have the strength to get to the other side of the bed to reach the night table. So all of my study material is at arms reach on one side of my bed. I paid for the whole bed, I might as well use it for something.
When I am at my weakest IS when I meditate the most. FUNNY! I was listening and did not even know it! :~) Have a great day everyone!
Mckay,
Sorry for the delay in posting this comment & responding. We have relatives in from out of town and I have gotten behind.
I absolutely agree with you that "lazy day" is a poor word choice for the days when chronically ill people NEED TO "back off" and rest. What I was referencing is the way many in society, unfortunately, tend to view it when we do take a day of rest.
Also, trying to "change" those around us and "force" them to understand can certainly be a losing battle. We do sometimes need to find a way to adjust our thinking... I agree.
I can't tell you how many support group members have relayed their stories of friends & family who don't "get it". These patients have pushed themselves too hard and they have paid the price health-wise later.
It's really a shame when people put their health at risk due to fear of being judged by others but it happens quite commonly from what I've observed.
I totally agree that we as patients "get it" and that the people around us often "don't get it" --- or in some cases "don't want to get it".
I do think, however, that some people need a little nudge occasionally to remind them to slow down (myself included).
In my support group, I see often women who are very, very active despite extreme pain and other symptoms. Some people don't ever give themselves permission to “back off” for a day or whatever their body asks for or “say no” to others’ requests.
I used to push and push myself that way. Sometimes I still do. However I am better at listening to my body than I used to be... that much I'm sure about! Of course, it's easy to improve when you're starting out at such an unbalanced schedule as 80+ hours a week working, as I used to do.
I think some of this is "with age comes wisdom" and some of it is that being around other patients who have learned when to "back off" on a heavy schedule can provide role models that make it easier for others to "back off" too.
Also, some healthcare practitioners are extremely good at conveying the importance of self-care and listening to one's body. My acupuncturist has taught me a lot, for example. So has my therapist.
I'm glad you have found what works for you when the Chronic Fatigue Syndrome is really bad. It's hard for people who haven't experienced it to comprehend. There are times I'm so sore from fibromyalgia that it's an effort to pick up a magazine. I actually use concrete examples like this for the really bad days to get others to understand just how bad a day I'm having. In other words, people can't tell by looking at me how sick I am. So if I'm so sore that picking up a magazine is a serious effort, I'll tell my husband this so he has a clue of just how very horrible I'm feeling that day. Sometimes examples do help people "get it" a little better.
The description you gave with the books on the bed is a good example of you doing something productive even when confined to bed. I remember hearing that the author of Seabiscuit: An American Legend, Laura Hillenbrand (that was later made into the Seabiscuit movie) wrote the story while confined to bed with Chronic Fatigue Syndrome. (See more info on Laura Hillenbrand here: http://en.wikipedia.org/wiki/Laura_Hillenbrand).
I believe we often have instincts that help us out as you described. In other words, the fact that you do meditate more when you are at your weakest is in line with what my acupuncturist taught me... but you figured it out naturally!
It's great when one can get that in tune with his/her body! It sounds like you have good instincts for knowing what your body needs. That's great!
Jeanne
Jeanne, You do not ever have to apologize for taking a day off. You certainly need it.
I am happy that you spent time with relatives. Sometimes the little distraction of having loved ones visit, can take our minds off our pain.
Unfortunately, when I first became ill, I did not have a community like this to help me understand that it was alright to slow down, take time to let your body heal, and rest for as long as it takes.
I felt guilty because I felt like I was not doing my part-not doing enough. I slowly realized that no matter how much I did for some people, it was not going to be enough.
No one could feel my pain, feel my exhaustion, or feel my fear but me. I was going to have to learn to live with me.
And, as a result, I was going to treat me very well. If every one else walked out of my life (A lot of people did), I would still be here. Those people who really mattered, in the first place, are still here and so am I!
So take care of your self first. (Act just like the airline hostess instructs us to do in the event of a problem with the air plane-put your oxygen mask on first then your child's)There is a problem with the plane!
Mckay k,
I'm sorry that you didn't have the support you needed when you first became ill!
It is VERY helpful to network with other chronically ill patients and fully realize that it IS OK to slow down, rest, etc.
I think just about all chronically ill patients go through some level of guilt at some point because... by nature of our poor health we simply can't meet the expectations of others.
You are right that it is impossible to please everyone!
Being able to live with oneself is important. I'm sorry you had to go through so much pain but you have a great positive attitude about things now! You are obviously very strong.
You are right that people who really matter stick around... through thick and thin, as they say.
It's funny... My therapist gave me that analogy with the oxygen mask about 8 years ago when I first saw a therapist. It's very true.
Since then, I heard Randy Pausch mention it on the ABC news TV special the other night too.
I think the reason this analogy is quoted so often is that it really is true...
If you don't take care of yourself, you can't properly take care of others in the long run.
People often try to care for others first thinking it's the right thing to do but inevitably (sick or well) they burn themselves out in the process (bad for all concerned when that happens)...
Burnout may not happen overnight but it does happen.
Putting the oxygen mask on yourself first is necessary to "retain consciousness and help others on the plane".
Likewise, self-care first is crucial for people to be able to be there for others.
If a patient gets burned out (or so exhausted that self-care falls by the wayside)... then they definitely won't have the energy long-term to help others!
I agree with you that self-care is very important and necessary.
Jeanne
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