Sunday, June 12, 2011

Does it Ever Get Easier?

I’ve been going back and forth on whether or not I was ready to post on this topic yet, as I haven’t been sure if I could answer the question.  A comment on the subject got me thinking.

I concluded that this is not a simple yes or no question.  It is something that even those of us who have been ill for years may still wonder about.  I think that in some ways it gets easier, but in many ways it doesn’t.

In the 13 years I have had this illness, I have learned a lot about it. I know how it affects me and how everything I do affects it.

I know that I am more sensitive to everything…temperature changes, medications, lack of sleep, stress, etc.  I know that my plans need to be flexible and that I need to make sure there is someplace I can sit and/or rest wherever I go.  I am finally learning to recognize the feeling I get when my heart rate is going over my anaerobic threshold, even if I am not wearing my heart rate monitor.

I do know that certain things without fail will cause me to crash; all it takes is half an hour of anything slightly strenuous, like planting a few flowers.  I know with less than eight hours of sleep, I will not be able to function, and I usually require 10-12 hours.

I know some of the reasons for certain symptoms.  POTS explains why standing up feels like running a marathon.  The use of a heart rate monitor has shown me that the reason many seemingly simple tasks feel so exhausting is because they cause my heart rate to go over my anaerobic threshold.

In those regards, it gets easier because I know certain things I must avoid. The alarm on my heart rate monitor lets me know when I need to stop what I am doing.  Knowing why certain things happen makes me feel that there is at least a reason.  I have also learned to accept that this is how my life is going to be right now and to deal with it the best I can.  Knowing others who are going through the same struggles also helps.

On the other hand, I don’t think the symptoms ever get easier to live with because of their variability.

When dealing with a constant symptom that doesn’t vary it may get easier.  When I actually injure myself, the consistency of the pain makes it easier to handle than the inconsistent fibro pain.  Cuts, bruises, burns, sprains, etc. are constant and consistent pains that after awhile can be ignored (I’m speaking of the pain…after taking appropriate measures to prevent infection or further injury, of course).

Knowing why I can't do something or hearing my heart rate monitor alarm go off does not make the desire to do things go away.  It still takes discipline to stop what I am doing, even though I know the consequences will be terrible if I don't.

Another issue that doesn’t allow for things to get easier is that some crashes seem to come out of nowhere.  We can do everything we are supposed to in order to avoid a crash, flare, or relapse, but we can still be hit with one.  There is an unpredictability factor that is always ready to throw us a curve ball.  No matter how much were prepare, this part does not seem to get easier.
What we can do is accept that we can’t control everything.  We can do our best to prepare for the unexpected, and we may need to change our expectations.

What do you think?  Do you feel that it ever gets easier?


  1. BRAVO! Definitely the inconsistencies are the worst. YES, like normal physical trials and tribulations, they hurt, they hurt less, then they are gone. The variability and not being able to make connections to avoid a repeat are the craziest part of this journey. What works or doesn't work one time, does not guarantee that it will work/not work the next. Since I cannot make the connections, those around me can't really understand. I accept this is my life and what is, is. I just wish I wasn't as crazy an ailment as it is! I am defiantly going to be a new member of your blog! I like that you don't write as a victim. Thank you!

  2. My sister has been trying the heart rate monitor thing, too. Glad to know it helps some.

    I've found that making myself keep my activity levels low makes a big difference in my pain and brain fog levels. It means living with my parents and letting my mom do most all the housework and cleaning, which is hard for me, but does make my quality of life so much better. Good luck as you, and all of us, continue to figure things out.

  3. Thank you for this article. It is one of the best descriptives yet on what it 'feels' like to have this illness. I actually cried reading it since you truly seem to 'know' exactly what I have been experiencing for so long, especially the part about being overly sensitive to so many things. It is reassuring to know that I am not going crazy, yet some people look at me as if I am when trying to explain just what it is that is going on with me, including my own mother. Fortunately I have a loving husband who truly cares; he may not understand, but he is always there for me. I find now that I am much more grateful for what I do have rather than worrying about what I don't have; those days are gone. So I guess you could say I have leatned a valuable lesson about life, and in this way, my life is better.
    Blessings to you and the others . . .

  4. Thank you and blessings to you too. I am always happy to hear that my writing has helped in some way. And don't worry about people looking at you as if you were crazy. It happens to all of us. We just have to shrug it off sometimes because some people may never understand. It is great that you are able to focus on what you do have--it definitely helps.