I was sitting here today, trying to decide which of all the coping mechanisms that I use regularly, have proven the most beneficial for me. It didn’t take me long to figure it out because for me, it is not only a necessity, but also enables me to do more with less. I am talking about pacing.
I recently read an article that covered the controversy – at least in the world of medicine – of pacing versus Graded Exercise Therapy (GET). Apparently the National Institute for Health and Clinical Excellence (NICE) has determined that you and I don’t know what works best for us. According to Freedom From ME Blog, they discovered that,
[...] it is actually a controversial therapy for chronic fatigue patients because the medical community and the NICE guidelines are actively NOT in support of patients following a “pacing strategy” as a therapeutic intervention, whereas chronic fatigue and ME patients themselves are vastly in favour of this therapy. In a 2001 survey produced by the well-known charity ‘Action for ME’, 90% of patients said that pacing was helpful.Despite this, when wading through the NICE guidelines and Working Group reports on Chronic Fatigue Syndrome and ME, you will find that NICE supports “activity management” as opposed to “pacing.” The only other main therapies officially accepted and recommended for chronic fatigue and ME patients include, drug therapy using anti-depressants (which many patients are familiar with) and Graded Exercise Therapy (GET). GET is very controversial as it involves prescriptions of exercise to increase patient activity levels over time. In the Action for ME survey, 50% of patients said GET made them feel WORSE, not better, and caused them to crash.
I actually found this amazing because as I stated above, pacing has made a huge difference in my life. When I pace consistently, I am able to accomplish more. When I don’t, I find myself in bed more often.
For me personally, pacing is the one thing, if I do it consistently, that just about guarantees me that I will be able to do something I want. For instance, if I want to go out to see a Ballet performance, I always make sure that a day or two before, I rest as much as possible and do a little as possible. Outside of an unforeseen crash or flare-up, I am usually able to plan events this way. Not always, but more often then not.
In addition, I feel less exhausted if I am not constantly fighting with my body and trying to do more than it is able to do on a given day. In my mind, that only makes sense.
Now just because I pace myself doesn’t mean that on good days that I don’t get out and do some walking or yoga stretching. Maybe other people who pace stop doing everything but my goal is always to find a way to do as much as I can and that means being able to get outside and walk, or going out with my friends, or just going down to the river and sitting on a bench and looking at my view for a while.
Yet, NICE seems to be of the opinion that if I pace I just won’t do anything else. Again from the Freedom From ME Blog,
This difference seems to be based on the fact that NICE are concerned that “pacing” will lead patients to simply limiting their activity for good, and that there is no intention to increase activity levels over time. This in turn risks physical de-conditioning and would lead to further complications and deterioration.
While I agree with NICE that limiting activity for good would have serious consequences, it is obvious they don’t truly understand the innate make-up of CFIDS/ME patients. Most of us – me included – are “Type-A” personalities. Giving up is not in our DNA. Nor is it in mine. Again, just because I chose to be frugal with my energy and pace myself, does not mean that I am going to become a couch potato!
Unfortunately, this is another example of the assumptions that are made about those of us who are doing our very best to live with CFIDS/ME. And to be honest, it is why I decided that I needed to take control of my life and figure out what works and what doesn’t. As I have said before, if something doesn’t work, I toss it out and keep going forward until I find something that does work. When I find something that works, I incorporate that into my lifestyle.
In the end, for me personally, my journey with CFIDS/FMS is about finding ways to have the best life I can within the limitations that my body puts on me. Never in my wildest dreams would I ever just sit back and do nothing. That isn’t who I was, isn’t who I am and isn’t who I will ever be. Even with CFIDS/FMS I want to be the best I can be. Nothing less and nothing more.
Determined to continue forward,
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I choose pacing too, in fact resting and pacing. I’m a bit confused about what you say about the NICE guidelines. It was the NHS that taught me how to manage my CFS with resting and pacing, so maybe they do GET in other parts of the country, but I’ve never been offered it.
I was shown how to analyse all the components of a task,(e.g shopping) for physical, social, cognitive and emotional aspects. And then to try and take the peaks and troughs out of the task, e.g shopping at quiet times, making a list etc etc. Also building in scheduled rests four times a day. After this process I got about thirty percent of my life back. I’m still resting but I tend to forget the pacing and overdo it.
As you so rightly point out, it’s about finding out what works for you. I recently discovered that I can reduce fatigue by wearing earplugs. So I wear them to the supermarket, when I’m driving and when I’m vacuuming. Sometimes I even wear them around the house just so I can feel in my own little world. Try it, it’s wonderful!
Anyway, isn’t ‘activity management’ another name for pacing and resting? I think they’ve got their wires crossed. Love your determination
.-= Jo´s last blog ..Turning the corner and a question about fumes. =-.
Jo – I will have to check that out Jo. Maybe it is only in the UK that they offer the GET, although I think I had someone tell me recently that they were strongly encouraged to do the GET as well.
How did you get help from the NHS? 30% of your life back! Wow! That is huge!
LOL! I think we all struggle with the pacing part. I still do. I know it works but everything in me just wants to get things done, you know.
I love that idea about the earplugs! That is an awesome idea. I’m gonna try that tomorrow when I go grocery shopping!
I don’t think they have their wires crossed…I think they still just aren’t getting it.
I am so glad that you drop by Jo! You always bring a smile to my face and I always learn something from you! How much better can it get than that!
Good article, Dominique. I do not suffer from an illness such as the one you have, but I have learned to pace myself if I do happen to get sick. Too many times, I have seen people who have been sick for an extended period of time try to do to much when they first get back on their feet. That usually doesn’t end well.
I have noticed my wife does this same thing. If she knows she has something coming up in a few days, something that she has to do, regardless, she will rest before the fact, trying to keep her body from crashing as hard.
.-= LD Jackson´s last blog ..Richard Shelby: Poster Child for Arrogance =-.
Larry – I am glad that Tammy has figured that out. You know, I have been all over the world and our country is the only one that does this mad dash to accomplish so much. I don’t think it’s necessarily a ‘bad’ thing, but maybe we should take a lesson from other countries and ‘slow down’ a little.
I sometimes wonder if our bodies were made to work at the level we push them to or on the multiple levels we work them on. I believe that I am partly responsible in my illness because I pushed ‘hard’ for so long with very little sleep. It never dawned on me that my body had a ‘breaking’ point.
Great post! I completely agree with what you are saying. Pacing works best for me as well and I manage my commitments accordingly. It still frustrates me in the year 2010 these illnesses that we live with, are still SO misunderstood.
Dominique, I have faith that one of these fine days, researchers will get it right. Someday… Until then, we continue to pace, and do what works
I have figure out that nobody knows my limits, or capabilities better than I do. My husband can read me like a book now, but I am the expert on THIS body that I live in, as you are the expert on yours. We learn how to get through, and somehow we do.
Thanks for sharing,
Nancy
.-= Nancy´s last blog ..The Fun Things You Can Discover On The WWW =-.
Nancy – Thanks for sharing!
Just wondering about ear plugs. I have the annoying ringing in
the ears at night. Does shutting out more noise during the
day improve the ringing in the ears. And what causes the
ringing?–if that isn’t too technical. I know I’ve seen it
list as one of the many possible symptoms of CFS.
Patricia – I know when I use ear plugs during the day or when I am writing, it does help. I have also invested in a white noise machine and that seems to help with the ringing in my ears.
I know the ringing is called tinnitus. Here is a link you can read about what it is and so forth.
http://www.medicinenet.com/tinnitus/article.htm
Have to tell you how grateful I found your blog because I can
leave a reply. Before I would only browse a blog because it
was too much of a brain strain to have to choose a password,
get an account, and my browser just would not allow me to
type in thos letters. I found you through Renee’s blog. I read
her blog, but could not sign in and so I just e-mail her.
I have wanted to tell you how adorable your pugs are. I just love
dogs. Thank you for the link about tinnitus. People have
this condition without having CFS; but I also see so many people
have CFS and tinnitus-making me wonder if it is one of the
nervous system/brain symptoms of CFS or separate. We have a lot
of unanswered questions don’t we. Hope you made it to the chiropractor
and that the effort to go paid off in less pain.
Patricia – I never thought about the simple problem of logging in to a blog as a deterrent to someone continuing to read it! Wow! And that is really odd because I am always having problems with the spam catcha phrases! Ugh. I don’t know how many times I cannot add the 2 numbers together and get the right answer. Then those little phrases! I hate those. I have to refresh them several times before I can figure out what they say. It never dawned on my that it could be the CFIDS! Hello! Duh! I will definitely keep this in mind. I have no intention of turning that stuff on as I am trying to make this blog as accessible as possible!
Thank you – my puppies are adorable, aren’t they. The black one has severe allergies so he and I have a special connection!
Yes, we do have a lot of un-answered questions. Maybe someday soon we will get them….
Can someone give me tips on pacing in the supermarket? I bring a list, use a motorized cart if the store has one, ask for help bringing my groceries to car, and still crash. I think I spend too much time in the store; I honestly love grocery shopping. I do have someone to shop for me but there are some times when I have to go to a store like Trader Joe’s (which doesn’t provide motorized carts) and it’s always a disaster. I also find things I can do on certain days will bring on a crash at another time.
Andrea – I haven’t found anything that prevents me from crashing. However, I have found that going when it is quiet – not peak hours – helps me. Also, ear plugs have been suggested on my blog several times. I personally shop once a month now so I only crash once a month from doing groceries, instead of every week. Another suggested made here was to have your food delivered if they offer the service.
Pacing is the way to go. Working 3 hrs on a computer in 30-45 min shifts and accomplishing something is better than trying to do it in 1 go, ending up staring at the screen and feeling wasted afterwards.
As for GET, it works for me although I do it myself. I cycle (cardio) and use weights (strength). Find a level that I can do (not looking at what other people are doing) without triggering post-exertional malaise, keep doing it, and occasionally try to increase it. Sometimes it works, sometimes not. So maybe what I do is pacing and not GET of which I sometimes hear horror stories.
Take care,
Johan
.-= Johan´s last blog ..First Visit to Himmunitas and Prof. Dr. De Meirleir =-.
Johan – I remember reading you do weights and cardio. I am just not able to do either. The weights put me in such horrific pain afterwords. And cardio was causing me to not just crash but black out as well. I am so glad you can do it though.
Yeah, I haven’t heard many people who have our illness being able to do the GET. I tried and my doctors finally told me no weights and not cardio. Just walking slowly, 2-3 times a week for up to 20 minutes, that’s it. I am not consistent because of repeated flareup but I do try to do it as often as I can. I seem to be more consistent with it in the summer months.
I lived in Phoenix, AZ for a year and the dry heat helped me so much that I could do a little more walking.