Sunday, February 26, 2012

HOLY MOLY i have cfs!

So that statement might sound a bit odd - considering i write a blog titled Chronic Fatigue Chronic Hope - but that is the caveat about this illness - it takes a long time for it to sink in - that this isn't something you kind of have - and i think that's how i have always looked at it - I kind of have this thing - its not well will be resolved sooooon... etc etc...and despite being in the medical field i decided to take a back seat and be a patient for awhile - giving in to trust.  In the beginning i was so tired of fighting doctors and their old ways of defining this illness - when i found the one that finally got it - i just let go for awhile.  An example, last September when i went for my annual OBGYN appointment my former doctor - when she asked me about exercise and i was really excited since i was up to about 25 minutes of walking - she told me at my age i really need to hit 45 minutes to get a maximum heart rate - i repeated - you do know i have chronic fatigue?  And she still went into the benefits of aerobic exercise.

I really don't expect every doctor to know everything - but i do expect people to admit when they are not a specialist in a field - or be curious to learn more.  In my irritation i would like to send her all the great research from Sue Jackson's posts - but i am trying to live more zen!  When reading these articles i realized i intuitively did many of the suggestions - for example using a chair.  Often when i get up and am trying to make breakfast or other meals i need to grab a stool to sit on - I also have trouble emptying the dishwasher - but it is a lot of bending and standing - constantly changing your blood pressure.  I have extremely low blood pressure - normally around 90-100/60-70 - and most people when taking it comment how great that is - what they fail to put together i also may have a resting heart rate while seated anywhere from 85 -90 beats per minute - the two don't go together.  So it takes that much heart pressure for me to maintain a minimal blood pressure.

I have always known this, but once again, this illness often forces you to believe the unbelievable - so my Mr, Big swim from the day before was a bit overzealous - its just so hard to not push when you feel good - my brain telling me you can't be sick - look you are swimming today - then the crash sets in the next day.  I think I will get myself a heart monitor - just for information sake - and to help chart progress - the other articles do a great job of explaining how difficult it is for our bodies to work in an aenorobic state - which for me (except in very young age and 22 - 32) has always been difficult to gain muscle mass -

my thought processes are really off today - but i wanted to get theses articles out -
heart rate these are Sue Jackson's excellent posts regarding orthostatic intolerance - it is helpful for people to understand because so much of this illness is counter-intuitive - and often people will encourage me i should do more or exercise more because that is what normally helps in fatigue situations d/t depression, anxiety, or acute type illnesses -

However, after reading these and consulting with my physician I don't intend to go one beta blockers for numerous reasons - but it also explains why my blood treatments work so well for me because they not only help with the infections but oxygenate my blood - i often feel as if i am starving for air or nutrients - despite breathing fine and just eating - but its this cellular dysfunction that i am very grateful so much research is going into....

alright - that's it for now - hope everyone enjoys the oscars tonight - as always i am looking forward to the jewelry.


  1. Hi -

    Thanks for the shout out to my blog - I'm glad you have found my posts on OI helpful! Actually, I DO sometimes print informative articles for my doctors, and it can really help.

    The best one on OI is the summary article by Dr. Peter Rowe - he's a well-respected doctor at Johns Hopkins so that usually gives him instant credibility with other doctors. I;m guessing you've already read this, since I link to it from several of my blog posts, but just in case, here it is:

    The article ("clinical written material") is an excellent one to share with your doctor or sometimes I even just take in excerpts, like on particular treatments or how to diagnose.

    Thanks for visiting my blog and taking the time to comment - I am glad to have found your blog now, too!


    Live with CFS


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