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November 18, 2010 / zzirf

I think I need a heart-rate monitor.

I was coasting along, still not being able to put my hands above my head without inducing a migraine, but one day I felt good enough to get in the car and drive the hour and half to visit my son and grandson and family.  I had not seen them for a few months and they have no car.  I left the next day not looking forward to the drive home (sometimes I like to drive).  I knew I needed to sleep off the consequences of this sudden change in activity levels but I did not feel bad enough as I was slowly crashing to completely stop – but who can completely stop when they are their own carer and can rely on no-one else?  I had to get groceries – half an hour tops, the next day and I wasn’t ready or able to beg anyone I know to get them for me especially since I had not fully crashed yet.  I had to sort a few little baby things like that and a couple of days later I just “had” to drag myself to get tobacco for my roll your own’s.  Please don’t comment about my smoking.  Just don’t.  I am not writing this so that I can get any more lectures, thank you.

I am writing this to say that I crashed, I feel fluey, I ache everywhere including the eyeballs and the posture I have been trying to maintain (for my spine’s sake) has drooped.  So has my smile.  You can have one though – my lovely brave readers.  I know my body is crying but I am not.  It is time to zone out a bit from this world but my live-in adult son won’t seem to let me and for the past two days there have been workman replacing the guttering all around the house.  Who needs noise at a time like this?  I sleep as much as I can which is pretty easy but always disturbed (which can be taken both ways).  In between I sit at my computer until I ache too much but I have been reading all about cardiac insufficiency and heart-rate monitoring.  I can’t read lying down for long – my brain dies and later I fall asleep.  I am lucky I can get to sleep – it is the best pain killer I know.  Anyway, I read mostly sitting up at the computer screen but with my legs raised onto the chair sitting cross-legged.  It seems to work the best when my feet are not all the way down there on the floor.  Maybe the blood doesn’t have to pump as far?

Monitoring my heart rate would mean I could even check out little things like leg position.  Anyway I dug out the blood pressure machine which I have never been told to buy by a doctor – I just did buy it but it freaked me out so I put it back in the cupboard after a bit of a muck around with it over a few days.  I used to be an electronic junkie anyway and there is a lot of it still hiding there somewhere under the CFS and fibromyalgia but I think I too am changing my attitude to what I always loved – a challenge.  But now if it takes more than a day or two to figure out, that new computer program or whatever is put in the “too hard” basket.

I seem to be one of those persons who is able to do less and less over time and at the moment my level of functioning over the long-term is severely threatening my latest dream (which already was a compromise to a career).  But when I read what I have read this week albeit in small doses, I am getting a big light bulb go off or what I call a big “click” as things click into place.

Watching Dr Cheney’s video at http://www.cfids-cab.org/MESA/CFS_Dist.htm was a big click.  I always have had a history of “insignificant” heart investigations and I have watched my ex-boyfriend with his severe “drop-dead-at-any-time” kind of heart condition and his regular and caring doctors appointments.  He has a better quality of life than me but he seems to be proud of any pain he puts himself through and thinks that I should push on regardless just like he does.   But I have an innate desire to preserve my life and if that means coming to a stop when my heart rate exceeds 99 beats per minute, I am willing to try it.  I doubt if anyone else will approve but in all this time with this disability I have never had a concrete measurement to test until I read the advice on http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope and watched the video on http://vimeo.com/groups/whataboutme/videos/16263125.  I am really grateful for this advice and I am pretty sure I will be buying a heart rate monitor soon.  It seems that my Aerobic Threshold is 99 for my age and I have already exceeded that several times today even though I am on a ‘go slow’.  Just making and stirring a bit of gravy, putting some chips in the oven and microwaving some frozen vegetables got me up to 103 with several sit downs in between each thing.  I did feel terrible but I didn’t feel terrible when I slowly walked to the letterbox and back and said hi to the neighbor’s dog and got 107 beats per minute.  The highest today was 111 and that was just walking around the house slowly.  I assume a blood pressure machine showing pulse rate was OK to use until I get a proper heart rate monitor.

The other article that seemed to be describing me when the only way I can explain the way I have got through crises in my life as “living on adrenaline” was the one at http://www.hfme.org/adrenalinesurgetips.htm.  It just seems so disheartening to have to find this sort of information overseas on the Internet rather than through a caring doctor locally.

 

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2 Comments

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  1. alisa / Nov 18 2010 10:00 PM

    enjoyed this blog. you are so good w/ words you must not have brain-fog;) i am so happy that you got something fr my vid. it is very challenging but does seem to work if you don’t overdo. please contact me w/ any questions along the path. we also have a man on the vimeo group who wrote a great post (actually 2) about this on pheonix rising his code name there is ‘only resting’. look fwd. to your progress reports;) http://www.forums.aboutmecfs.org/showthread.php?8360-PEM-delayed-fatigue-cardinal-symptom/page9&highlight=onlyresting

    • zzirf / Nov 19 2010 12:02 AM

      Thanks Alisa – In bed lying down my heart rate was down to 70 but I got up this morning to do the usual toilet and coffee making and boom, straight up to 115 bpm which is over limit before I even get to make breakfast. Oh darn. As for brain fog, it is relative and the above post is not the best I can do with words but I find writing much easier than talking. But you are right, I am not too bad with the fog at the moment – just light headed. I have to get some food now but I am not sure I should leave the house to get a heart-rate monitor today if I can’t even walk around the house (in my annoyingly slow way as far as others are concerned) without going over AT.

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