Wednesday, July 24, 2013

Listening To Your Body

As most people with ME/CFS quickly learn, listening to your body is probably the most important thing you can do to improve your quality of life and prevent constant, unpredictable crashes. Unfortunately, it is also the hardest thing to do. Even after over 11 years with this illness, I am constantly relearning this important lesson.

I am alone this week - my kids are spending the week in Rhode Island, sailing with their grandparents and cousins - so the level of noise and chaos around me have quieted down enough that I can actually hear my body again! I had a really bad week last week. My husband was traveling, so I was on my own to get unpacked from our camping trip and get the kids ready for their trip. Now, they are 15 and 18, so they did their own packing and even loaded the car. But with them around, I still had plenty to do, plus two extra trips to the doctor for my son's ear infection, two trips to PT for his knee, many trips to the drugstore, and an exhausting trip to his school to turn in his sports physical forms (the main office is a long walk down the hall and up two flights of stairs, plus the front entrance was closed for construction!). Anyway, I won't bore you with all the details (really, there's more), but the bottom line is that I went way past my limits last week.

When I finally got back home on Saturday after dropping them off (a 4 1/2 hour return trip on my own, stuck in traffic), I was a mess. I completely collapsed and spent the next few days lying on the couch. It was such a huge relief to have no one to take care of but myself! I realized this weekend that I expend an enormous amount of energy simply taking care of food for our family - planning meals, going to the grocery store, cooking, cleaning up afterward (my husband helps with dinner clean-up). Realisticially, that probably takes up a large portion of the limited stamina I have available each day. It's important to me, though, to have healthy, tasty meals for my family, and I actually enjoy cooking, so I'm not sure that can change much.

I am determined, though, during this week alone, to listen to my body and stay within my limits. It's still incredibly difficult, after all these years. While I am attuned to the symptoms that are big signs of danger for me (sore throat, flu-like aches, exhaustion), there is a much louder voice in my head saying, "But you have to do XYZ..." And normally, there is an even more persistent, real voice next to me saying, "Mom, can you take me to...(fill in the blank)." I have learned some lessons over the past 11 years. I usually know when it needs to be a Plan B day. But I still tend to go past my limits almost every day.

The interesting thing is that my limits have greatly expanded from when I first got sick, but as I am able to do more, I still keep doing more than I should! Of course, in that first year, before I was diagnosed, I didn't know about post-exertional malaise or exercise intolerance, so I had no idea why I would feel fine one day and horrible the next. Back in those days, my crashes were severe, leaving me useless on the couch and often lasting for weeks. With treatment (correcting sleep dysfunction, beta blockers for OI, low-dose naltrexone, and Imunovir mainly), I have many more good days now, my crashes are mild and only last a day or two, and I am able to do much, much more than before.

All that is good, but the more I can do, the more I push past those limits and try to do more! I guess it is human nature (and certainly it is my nature!). I guess it's just never enough! I suppose even perfectly healthy people try to do more than they should. But I know it's been bad lately, and I need to refocus on staying within my energy envelope, as they say.

I think that is one of the toughest things about living with CFS: having to constantly, always be aware of your symptoms, your limits, your activity level, etc. It's mentally tiring to keep tabs on it all. In fact, in the first years of my illness, my mother worried constantly that I was "too focused on my illness." She thought I'd feel better if I could just get my mind off it. I suppose she probably still thinks that to some extent, even though she understands CFS so much better now. A normal, healthy person really can't understand what it's like to have to be so ever-vigilant.

Ah, well. Lots of musings and not many solutions in this post, huh? Do you have any tips on staying within your limits? I could sure use some!


hkd said...

Sue...I so understand the "vigilance fatigue" someone recently posted a quote on Facebook about "not talking about an illness" and I got the gist - don't "dwell" but people don't understand if you aren't hyper aware, as soon as you decide to try and forget or not causes great pain and crashes...thank you for this post.

ME CFS Self-help Guru said...

Hi Sue,

I certainly share your frustration, and the better I get the more I want to do too!

I aim for relaxed effortlessness is all that I do. I try to notice when I'm having to make an effort to do something, and use that as a trigger to think about whether I should be doing it or if there might be an easier way. I don't have a family to look after though so its a bit easier to manage the demands on my energy. Could you get help with you food shopping or something like that? All our big supermarkets in the UK have a internet ordering delivery service which is great. I also get a weekly organic box of vegetables delivered, so I have to expend very little energy shopping.

Hope you have a good time taking it easy for the next few days!

Anonymous said...


I wanted to say that I really enjoy reading your blog. I've had CFS for 1.5 years, and a month ago I started seeing a holistic massage therapist who actually keeps telling me that I shouldn't be afraid to do anything. She has not completely convinced me, but I realized that a lot of times I would worry in advance about having to do more than usual, and the worrying would actually add more stress. I've been trying not to worry so much, and while I still crash, I have been able to do more (my fitbit can prove it :-)), without any terrible side effects.
Enjoy your time to yourself!

Tracey said...

I've been the same way myself this week. Last week was winter school holidays. It was only 1 week and I had Pip and his friend E for Monday & Tuesday, Pip developed an ear infection on Wednesday then he was away on Thursday then I had them both back on Friday. On Saturday I drove the ten minutes into town to see a movie with Pip before dropping him at his friends for the rest of the day.
I dedicated my week to the two of them, but before that I dedicated about two weeks to gathering supplies and printing and laminating materials for us so that we had a full program of activities for those days. It was seriously over my limits, I knew it would be and I knew I would be paying for it. I've been couch bound for this entire week just watching movies. I've reached the end of my tether though for this laid back, do nothing, week and ready to get back to all the other million things on my list.
I wish I had like an app for my phone that I could turn on in the morning and have it show me exactly the number of spoons I can use that day. Or like my household budget app, "you have 200 spoons this month", "you have spent 20 spoons today" but, of course, it would need to be able to predict our unpredictable spoon levels - and now I'm rambling ;)

Take care of yourself and enjoy those times when you don't have to care for others, I keep wanting one of those periods myself.

Sue Jackson said...

Absolutely! I've tried explaining this to my mom, and she sorta gets it, but I;m sure she still thinks I dwell too much on my illness.

Sue Jackson said...

Our grocery store used to offer home delivery but no more. And i do belong to a local CSA, but with ours, you have to go to the farm to pick up your veggies each week, so that's another errand to run!

"Relaxed effortlessness" - I like that! Will have to try to keep that in mind. If it takes effort, it is probably too much. Of course, we may never eat dinner again if I did takes a huge effort to get up after my afternoon nap each day! lol

Sue Jackson said...

An app showing how much energy we have - I love it!! I might actually get a smart phone if THAT app was available - ha ha

I totally understand how you are feeling. It is soooo much harder when the kids are home all day, even now when my kids are older. I really miss those quiet hours to myself during the summer.

Suzanne said...

Hi Sue,

This is so true. After 17 years of illness you would think I would have this mastered by now, but I don't. It is so hard to slow down when you have a better day. If I can master this, I might get somewhere. Hope you feel better soon.

Anonymous said...

With all my past 10 years of suffering from cfs and dealing with doctors, I realised that there are a few tests that must be carried out and if diagnosed they should be treated as soon as possible are: hemoglobin, vitamin d, calcium, vitamin b12, thorough hormones, cortisol, thyroid, blood sugar and insulin resistence. Antidepressants better be avoided as they numb your nerves and senses.

Along with that, regular stretching, gradual exercises and keeping yourself busy with some possible activity will contribute to the healing process. Healthy diet will help in general well being and fight against possible infectious and life long diseases. In my case herbal treatment, homeopathy, acupuncture, chiropractice, osteopathy nothing worked.