A Personal Lesson in Humility

September 13, 2009

A Guest Blog By Laurel

(Laurel, a young woman with magna cum laude from Tuft’s University, has a severe case of ME/CFS. In this poignant blog she talks about some of hard lessons she learned (which everyone with this disorder should contemplate) and provides a personal look from the world of the severely afflicted.

The CFIDS Association of America recently took a poll in which, among other things, they asked their members which personal stories they were most interested in hearing about. Not surprisingly, somewhere at the top of the list were stories from those who had recovered. People want to hear about what others did to get better. They want hope.

So I guess I should have known who would be towards the bottom of this list, and which stories were among those that generated the least amount of interest. Who did they not want to hear from? Yep, you guessed it. People most severely afflicted with this illness. People who are bedridden. People like me.

Those of us fully homebound with this disease can feel so isolated and invisible. We often (quite literally, in my case) don’t have a voice. No one wants to hear our story. Not even, it seems, many of our own fellow sufferers.

But really I shouldn’t have been taken aback by this. After all, when I was still working full time, I often came across stories like mine, and for the most part, I didn’t want to hear them either. It was too depressing and scary. I refused to believe becoming home or bedbound was even a remote possibility for me, and didn’t want to let the idea of it needlessly enter into my mind.

In fact, when I first got sick, I remember I actively sought out only those who had fully recovered from CFS. Not those who had merely improved, but only those who had completely regained their health. I did this because I firmly believed that was the only possible outcome for me.

People who had fully recovered were difficult to find at the time, but I was not deterred by this. If even one person had been able to restore their health after battling this illness, then that meant I could (and would) as well.

But it didn’t quite turn out that way. Not yet, anyway. If I could do it over again, I would have been much broader in how and from whom I sought advice and wisdom. I would go back and read the stories of those who had become bedbound, and I would listen to what they had to say. There’s a lot to be learned not just in hearing what people felt they did right, but also in hearing what people felt they did wrong. In many ways, I think I would have gained even more from the sickest of patients than from those who had gotten well, because their stories would have humbled me. I would have more fully realized what was at stake, and perhaps been better able to let go of the idea that I was invincible.

If I could speak as myself now to the highly determined young woman I was back then, this is what I might say:

First, don’t worry. If you listen to your body, truly listen to it, then it’s extremely unlikely you will end up anywhere near where I am now. Second, treat your body like the temple that it is. Eat healthy, meditate, stay only as active as your body allows, and rest when your body tells you to rest. Never put a job, other’s opinions or anything else above your own health. Similarly, don’t let your ego, your pride, your need to please or your desire to accomplish get in the way of doing what your body tells you to do. Letting my ego, my ambition and my need to please others take priority over my own health was, I think, my gravest mistake. It is something I still struggle with on a daily basis even today.

Now this isn’t in ANY way to say that it’s not possible to recover from (or live with) CFS while still working and keeping a comparatively normal lifestyle, of course. It is most certainly possible. Nor do I mean to imply one needs to in any way let go of ambitions or stop trying to achieve. Far from it. I certainly have not let go of any of my life-long goals, and given where my energy stands today, I achieve more now in one day, comparatively speaking, than I did in a full 40 hour work week. It is only to say I wish I’d learned earlier that, contrary to what I’d previously believed, the course that any given illness takes is not solely measured by the strength of your spirit, optimism or determination. If only it had been that easy. It’s about balance. Balance, pacing, and listening.

Of course, finding appropriate treatments (and, better yet, a cure) would be of tremendous benefit as well.

In the end, I think the most important thing for all of us, no matter what level we are at, is to stay positive, trust that things will get better, and that the answers will soon come. And, without a doubt, to never let go of hope.

Check out Laurel’s beautiful blog.

13 comments

{ 13 comments… read them below or add one }

monicajane September 13, 2009 at 5:55 pm

thanks Laurel,
I’m bedridden too and this is helpful. I’ve only been bedridden a matter of months and I too have avoided the thought that I would get this bad. And I too think I pushed too hard and didn’t listen.

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cort September 13, 2009 at 6:08 pm

Laurel’s story is really a lesson for all of us. If this bright vivacious person with so many strengths can be brought so low then anyone can. It reminds me of Dorothy Wall’s (author of Encounters with the Invisible) story. She pushed too hard on a trip and was rewarded with a horrendous crash. I asked if she felt she was getting into dangerous territory before she crashed and she said ‘yes’; what really surprised her, though, was how hard it hit her.

For her interview: http://aboutmecfs.org/Int/IntWall.aspx

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Amy September 14, 2009 at 4:43 am

It’s great that you posted this here. Laurel speaks for me too in many ways. I’m a 34 year old who’s had ME since I was 15. I always pushed myself as hard as possible, determined to be well through sheer willpower (there was no real information or advice from my doctor here in the UK when I became ill, except to keep trying to be as “normal” as possible). I never understood that my condition could get worse. Over many years it has, until I too ended up bedbound for the last few years. I desperately wish I had taken better care of myself in the earlier years of my illness.
Those of us who are severely affected have the least capacity to make ourselves heard, and as Laurel says, our stories are not always encouraging or uplifting for other people to hear. It’s terrifying for any of us struggling with this illness to think that we could deteriorate – I tried not to think about the severely affected when I was more moderately affected. But I now find strength and inspiration from hearing how other people, such as Laurel, cope with severe ME/CFS, and manage to maintain hope and courage in the face of it.

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upnorth September 14, 2009 at 5:53 am

What a good reminder. I think it is timely for me at present since I’ve been pushing my body to the edge recently (perhaps playing the line too closely).
Thanks for sharing, Laurel (thanks for posting this Cort).

Cort, is it ok if I put a link to this particular blog (story) on my site?
http://upnorth-gailstories.blogspot.com/
Thanks

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cort September 14, 2009 at 11:08 am

Please do Gail. Thanks.

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NTE September 14, 2009 at 7:10 am

Laurel, thanks for sharing your story. It is such a familiar one to me, as it echoes so much of my own story… Yes, there’s a lot to learn from these experiences – if somebody had told me back then to listen to my body instead of the doctors who didn’t believe me, other people’s standards of how I should be living, or (and probably most imporantly) my own ego and sense that I could conquer anything just by believing it enough – and your post really brings these points home.

Not to mention that yes, it’s a constant battle to keep walking that line. To know how much is too much and how much is not enough.

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Ricky Buchanan September 15, 2009 at 3:25 am

I don’t know if listening to my body better would have stopped me becoming bedbound. I’m 34 and have been sick since I was 19, bedbound for many years now. I listened to my body as best I can, and my path downwards has been more or less steadily down … there was no one single huge “crash” point except at the 19 year mark when I went from pretty much normal to “too sick to study or work” in the course of about a month.

I recently started the website Four Walls No Limits for those who are housebound or bedridden for any reason, including ME/CFS but also other problems. I’d be very interested to have people’s stories, tips and tricks, ideas, etc. up there. Contact me if you’re interested.

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cort September 15, 2009 at 6:33 am

Very nice website Ricky. Good luck with it.

Unfortunately I screwed up at the end of Laurel story and didn’t place her own blog in there. She’s got a wonderful blog at http://dreamsatstake.blogspot.com/. She just did a great blog on health care and the severely ill.

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Suzanne September 15, 2009 at 7:24 am

I’ve had infectious onset ME for nearly 20 years and am in partial remission. I too wish I had not tried to push forward in an effort to deny my disease. I don’t know whether it made it worse or not, but I have learned to stay within my envelope. I am especially careful in August and September when many viruses reactivate and circulate as that is when I tend to crash.

However, it does not change the fact that I am permanently disabled and will most likely be so until the day I die. My attitude does not change the permanent damage to my brain and heart.

But, and this is the bottom line – other than occasional worries about money, I am happy and content. I have accepted my life. I’m not living the life I intended, but very few of us are regardless of our health. When asked how I rate my health in comparison to others I always reply, “Other than a severe neuroimmune disease, I’m fine thank you.” And I am.

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Laurel September 15, 2009 at 11:28 am

Thank you, Cort, for allowing me to be a guest blogger on your blog. I consider it quite an honor!

Thanks, too, to all those who commented. I’m so glad that what I wrote resonated with some of you.

I do think it’s so important that patients from all ends of the spectrum get to share their stories. We all need our voices heard, and we never know how our story may help someone in the same or similar circumstances.

When I was seeking advice from recovered patients, each one told me to slow way down and pace myself. However, in focusing solely on those who had gotten well, I failed to fully realize what the consequences could be of ignoring my body. I really think I would have fared much better had I more fully grasped that early on in the illness. But one can never know… I may still not have listened. :-) In a way, it was easier at the time to listen to my doctors, who kept telling me to just push past it. I found this more appealing because it (incorrectly) implied that not only could I get well, but that I could do so while still going about my life as though nothing were wrong.

As someone said, it’s still a constant struggle trying to figure out where that fine line is, and to this day I still often make the same mistakes. It’s quite the challenge for all of us to find that balance. Especially when that line can change on a daily basis.

After posting this entry on my blog, I started to think about how important it is that the bed/homebound patients be heard for advocacy reasons as well. Otherwise, how can we convince doctors, the CDC, family/friends & others how serious this illness can be on all scales if those stories aren’t told? So, despite the poll results, I hope the CAA (and other CFS advocacy organizations) do continue to print personal stories from each (and all) side(s) of the spectrum… from the bedbound to the recovered and all of those in-between.

Ricky — I’ve often wondered (especially when first homebound) if there was a site out there for the bedridden, and could never find one. Glad to see you have started one!

Thanks again to everyone for your kind & thoughtful comments. I have really appreciated them.

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Ken Davis September 15, 2009 at 3:17 pm

Hope is a two edged sword. What if we never recover? I’ve had this disease for 20 years. Hope is OK in my books as long as it travels hand in hand with acceptance, not in competition.

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Anita Burgess September 18, 2009 at 2:20 pm

Thank you Laurel (and you too Cort) for bringing this important information to us. I wish I had read more stories like yours during my first years, and even later. I did not listen to my body but tried to meet the expectations of my extended family who did not believe I was sick. “Fatigue” hardly sounds like a reason to be as sick as I really was—BUT we were stuck with the label “chronic FATIGUE syndrome”. I KNOW I got worse, much worse over the years because I pushed too hard. The “hopey-copey” stuff in the Journal that CAA printed did us no good. Rarely did they print a story that even comes close to how sick we are. I have had this for 19 years now and am mostly homebound. I manage to get out to go the doctor occas. and to the pharmacy (drive thru) and even get a few groceries every 6 weeks. That is my social life and I enjoy every bit of it but crash afterwards. My “CFS” started when I was hiking, backpacking and camping in the wilderness of the Rockies. I was bit by a tick but not treated for Lymes until 2 years later. Too little, too late and I was then given my dx of CFS. I wish all newbies would read some articles like yours Laurel.

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Cathy in NZ September 24, 2009 at 12:34 pm

It seems I never had true CFS but that is just something that happened…I had many of the symptoms but what really had been overlooked was a tiny paragraph at the end of a follow-up letter from the Greenlane Hospital Chest Clinic that stated that the I was breathing at 1/2 the normal pace for my age & gender! I had been sent to the clinic to do with a chest x-ray taken when I was majorily ill with Glandular Fever, a liver dysfunction & bronco-pnuenomia; something was wrong with my ‘lung’ (it’s since been found to just part of me!)

That was not followed up the breathing aspect…even though this was 3mths after initial x-ray. Once I had the label CFS, I would regularily front up for appointment with ‘ailments’ that I believed were not part of CFS, but the doctor always had an answer…some new medical theory. SOOOOOO in the end I adopted quite the wrong stance (in hindsight) and would use a ‘wait/see’ process

I believed the breathing attacks came in under that radar…I would have terrible attacks but then I would get over them and they would subside (see, hindsight mode in operation). One Summer, I went out of town (not usual time) to visit a group friends/staying with family. Family not pleased with my breathing (actually had a couple of attacks before I came up) soooooooooo I ended up at the local medical centre and I was advised to see my doctor on returning home.

Obviously the breathing attacks were getting worse, I had one the night before I went to see home/doctor! New diagnose tentatively added Asthma. Within 2wks of intensive meds – diagnose was Asthma!

Although, my life has changed substantially, I still need to be mindful of various off-side problems which in turn basically means I have not ventured out into a really great social life. I need to make sure that I have quality sleep and such like otherwise I become ‘brain-dead’ rather rapidly.

The other part of my life that changed…WAS WHAT I COULD do! And that is getting a BA @ Auckland University. Hence, probably why I can’t do all those social sort of things as I believe what I’m achieving at Uni is more important!

An example of mindful living/Uni wise. Someone asked me why I just sat on the bus and stared out the window…when I had this opportunity to do some reading/study. I just said “it’s my time out” but what it is…I need to upwind or unwind depending on where the bus is taking me!

Occasionally I crash…or get so ‘brain dead’ that even getting on the right bus is a nightmare…that is when I have to take a step back and give myself “time-out” to recover….

Some of the things I achieved when I was ‘ill’ I cannot achieve now…as study is more important. So if you say “well you’ve recovered” I have but, I still need to “think carefully, about a great many things” :-)

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