Friday, August 24, 2012

Living a Cautious Life

As anyone who has lived with ME/CFS for any length of time comes to understand, the most effective way to manage this complex, debilitating illness is also the most difficult: live within your limits.  As Bruce Campbell puts it in his well-known (and worthwhile) self-help courses, we need to "live within our energy envelop."

This is easier said than done.  I struggled mightily with this concept during my first years of illness because it goes against my natural tendencies.  I like to be exuberant and spontaneous, openly expressing the joy and excitement I feel in my life.  I was actually quite the wild party girl in my youth, a trait I inherited from my mother for whom "moderation" is a bad word!  So, to not go all out and do everything I wanted to do as soon as I felt well enough in those early years was pure torture for me. 

As a result, my first years with CFS were spent in a rollercoaster existence, swinging from horribly crashed to feeling almost normal again.  At first, before I had a diagnosis or had even heard of CFS, I was certain I was well again each time I went into one of those good periods.  The ups and downs seemed random to me - I didn't see the pattern at first (who would ever guess that exercise would make you sick?) - so I continued to swing back and forth.  The good times were exhilarating, but the crashes were devastating every time and often lasted for weeks or months.

Once I learned about ME/CFS and the exercise intolerance/post-exertional crashes, I slowly - very slowly - learned that I could limit the severity and length of the bad times by reining myself in during the good days.  More recently, I learned that I could use a heart rate monitor to more accurately measure when I was doing too much and was in danger of triggering a crash.  So, now I live a cautious life, being careful to stay within my limits, restricting my activity at all times, and living very cautiously.  And it does work - severe or long-lasting crashes are rare now and most days I am able to function fairly well, as long as I don't do too much (of course, this is not only due to activity restriction but also to piles and piles of medication).  I don't like living so cautiously, but it sure beats spending whole months lying on the couch, too sick to do anything at all.

And now I am watching my son go through this same learning process.  He has had CFS since he was 10 years old, so this is nothing new to him, but until his battle with Lyme and other tick infections began a few years ago, Florinef allowed him to do almost anything he wanted.  Besides, I have been guiding him and helping him to limit his activities all these years.  He turned 18 last week and is headed off to college tomorrow (!), and, as he keeps reminding me, he is now an adult and needs to make his own decisions.

Last weekend during a family vacation, I watched him out in the yard playing soccer with his cousins.  He was having a ball, but I was having a heart attack, watching him from the deck!  Earlier this week, trying to fit in lots of time with his friends before they went off to different colleges, he told me he had planned a hike in a local park one day and tennis with another friend another day.  Tennis!  I tried to keep quiet (no, really, I did...for a minute or so...), but I ended up telling him that was too much, that he had to save up his energy for moving onto campus this weekend and starting classes next week.  We got into an argument over it, with him reminding me again that he is an adult.  I know that, and I know that he will be making all of these decisions for himself starting tomorrow...and probably making a lot of mistakes, too.

I am trying to let go, but I resent that he has to worry about this in the first place.  It's one thing for me, at 47, to be living a cautious life, living within my limits and carefully restricting my activities.  But he is only 18 years old and heading off to college!  My own college years were characterized by reckless abandonment.  Isn't that the essence of youth?  Freedom?  It breaks my heart that he has to live this cautious life, though of course, I am grateful that he is able to go to college at all, even with so many restrictions and cautions.  This illness is just so unfair, especially when it affects children and young people.

Step by step, day by cautious day...


Renee said...

Oh my goodness, must be so hard. You are so right, it is not fair that Jamie has to be cautious at all! Your post is written so well and I am sure expresses what parents of kids with CFS or Lyme feel. Hard enough to have our kids leave the nest and then when they are ill ? Hope and pray all goes well, like you said, one day at a time.

hkd said...

you couldn't have said it better..

Anonymous said...

I totally relate. It's against my nature too and yet the consequences have by now got me trained pretty well. I'm sure it will be the same for your son as he learns to manage his own pacing more independently. The cost of overdoing is too high and is a great motivator after a few bad crashes, at least for me. Sorry you have to have your son go through this though at such a young age.

I have been sick since fairly young adulthood. I would have much preferred to have bad health problems much later in life if I had to have them at all. The only possible advantage I can think of to being sick younger is being able to plan for a life with the sickness in mind rather than being blindsided later and finding out all your previous preparations and effort were all for naught as they don't fit into the life of chronic illness. I wish him a great time and good pacing at college. :)

Anonymous said...

I can relate to this. Also, something really upsetting and frustrating about this: This generation is sicker earlier than the last generation. By which I mean, the last generation seemed to get sick later in life (you were in your 40s when you got sick, right Sue? And my dad developed CFS in his 40s/50s too). And now the offspring of your generation is getting sick in their teens. This disease is destroying lives, but it's more like a frog being boiled to death and therefore very few notice.

Baffled said...

I can't imagine watching your sons go through this. I get so nervous every time my own son gets a cold. I'm scared it won't go away and he'll be stuck with CFS like me. I wouldn't wish this illness on anyone.

Don't worry too much. He'll learn. It is his time to grow up and become independent. It can be hard to watch but he'll be okay.

Bloomin'Chick Jo said...

It is such a comfort and even empowering to know there is someone I can relate to so well on this topic! I struggle with my limitations vs what I want to do/would like to do every day, but for me, as I get older, it seems I'm having less tolerance for all that my RA/AS/Fibro encompasses instead of it getting easier, however, I too live with caution every day. It's been so many years of living that way now I'm forgetting how it was not to. Yours feelings & concerns about your son are exactly why I have not tried to have more children. (I lost my daughter in 1999 because of a bacterial infection that nearly took my life as well). It's one thing for me to be sick, but, my doctor's cannot tell me one way or another if my children will be born with or eventually have what I have and I have yet to come to terms with possibly their having to live like I do and go through what I go through.

Sue Jackson said...

Actually, kids have been getting CFS just like adults for a very long's just that CFS is so rarely diagnosed accurately that most people don't know about it. Are you familiar with Dr. David Bell? He is a pediatric CFS expert...he started out as a small-town doctor in western NY. Back in the 80's, about a third of his patients suddenly became ill, including many, many children - the now-famous Lyndonville cluster outbreak.

It's an interesting thought, though - hard to say whether there are more people getting CFS now or just more people being diagnosed accurately by something that has always been around. Outbreaks of CFS have been recorded for decades and decades (one of the earliest recorded was the Royal Free Hospital in the UK in 1955), but it wasn't until later that individual cases began to be recognized.


upnorth said...

It is so unfair, I hate that anyone has to live this life, let alone children and youth. You are right, too, he will learn eventually how best to pace himself, but I can't imagine having to watch that as a parent from the sidelines. I'm sure you just want to telepathically instil all your hard-won knowledge about pacing into his brain.

Tink said...


I have terrible cardiac problems, myocarditis, cardiomyopathy and tachycardia plus NCS NeuroCardiogenic Syncope.(POTS family).
I'm starting Beta Blockers is a few days and hope it will make my life less miserable. ;-) This month I 'celebrate' my 30th year with ME. I have trouble pacing myself with the little energy I have, I'm 90 % bed bound, and would like to use a heart rate monitor to get the best out of my energy. I typically crash and burn.
I looked on Amazon but am overwhelmed by the choices, looks like there are thousands and all aimed at sport and fitness. Most are not aimed for continuous use and some reviews mention that is you use it for longer that 3 hours the battery will be drained. I need one that works 24/7. I sometimes even faint when I turn around in bed.
Would you be so kind to tell me what kind of watch you are using? The brand and all? That would be very helpful! Thanks a million in advance. Also many thanks for the information about the Beta Blockers. I will ask for Propanol. I'm very meds intolerant so I hope for little to no side effects.

Sue Jackson said...

Tink -

It sounds like you are a perfect candidate for beta blockers! I hope they help you. Don't get discouraged it doesn't seem to help right away = there are dozens of different beta blockers and many different doses to try - it may take a bit of trial and error to find the right one and right dose for you - we are all different. It's best to start with a very low dose (too high a dose can cause fatigue!!) and see how it goes.

Just in case you missed it, here is my blog post on treating Me with beta blockers:

As for selecting a heart rate monitor, I suggest you ask that question in the ME/CFS - Pacing with a Heart Rate Monitor group on Facebook:

It's an open group, so just click on the button to request to join. Once you are a member, you can ask your question. My own HRM is a Polar brand, but I only wear it during exertion - going to the store, taking a walk, etc. I did wear it more during the first few weeks, just to see when my HR went up the most.

Good luck and let me know how it goes!


Unknown said...

Could it be that children have so many more imminizations now than previously, which could affect their immune system and make some children more suseptible to CFS? My daughter became ill with CFS (ME in the UK) following her HPV vaccination, which she had when she was 12.

There are also some researchers who think there may be a link with CFS and autism, and autism has increased massively over recent years.

Your post really struck a cord with me. It's just so cruel for children and young adults to have to live thinking about their every move and being so cautious. I feel as though my daughter has been robbed of her teenage years.

Sue Jackson said...

Caron -

You might be interested in our Facebook group for Parents of kids and teens who have CFS and related illnesses. It is a warm, supportive group and provides a safe, private place to share information and support each other. It just helps SOO much to be able to "chat" with other parents in the same situation as you. Here's a link to the group:


Tink said...

Thanks so much Sue, I really appreciate that you're taking the time ti answer my question. I will check out the FB group, sounds like a good place to get info. I did read all your blog postings about the OI and beta Blockers and I was so encouraged! When my dr. suggested 2 weeks ago I should try beta Blockers my immediate reaction was NO, I was scared that it would cause all the adverse reactions and I'm at a point that I can't take much more. But after reading your blog and some entries on Phoenix forum I have a flicker of hope that it might help me too. Thanks a million!

Sue Jackson said...

No problem, Tink! Glad to help. Please let me know how it goes. And remember don't get discouraged if it doesn't work on the first try - keep trying different doses and/or beta blockers until you find what works best for YOU.