Name: margalit
Location: Massachusetts, United States Professional writer, educational advocate, opinionated ultra liberal mother of 18 year old twins, living life in the slow lane due to hypertrophic cardiomyopathy, congestive heart failure, and diabetes.

email: margalitc at yahoo dot com

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Saturday, July 05, 2008


The past couple of days I've had a bunch of aches and pains that aren't really associated with any particular activity or injury. I just ache. It sucks, of course, but it's also pretty frightening. I'm feeling my age right around the time when my age will be increasing by a year. I don't like it. I don't like feeling like getting up from a chair or the sofa is going to be painful. I don't like that my hands ache, that my neck pain is radiating down my shoulders and arms. I feel like my spine is saying "enough" and I don't like that either.

Usually I need at least one day a week of complete downtime in order to be able to function at a semi-normal level for the rest of the week. Downtime means staying in bed, sleeping on and off the whole day, and reading when I'm not asleep. I need quiet, and I need to be very stationary, only getting up to pee. I think these downtimes let my heart catch up with the activity level I have the rest of the time. When I don't get the downtime, my entire activity level deteriorates to the extent that I don't have a choice because I just collapse.

The downtown also allows my body to get rid of all the excess water I tend to accumulate due to my wonky heart. If I stay horizontal for a full day, my feet and ankles go back to normal and feel so much better. I'm not sure why sleep works so well at balancing out the water, but it does.

It isn't easy to plan a down day. I try for weekends, but I'm not always successful. There are days that I just can't get up. I'm too tired, and too achy to even try. Those days are always the days that the phone rings non-stop and everyone needs me for something. I get that the kids need me, but I do admit that I turn the phone off because I don't have the energy or wherewithall to deal with phone calls.

It never fails to amaze me that my body is failing. I didn't expect that when I was younger. Even knowing about my wonky heart, I just assumed that it would be asymptomatic and not a big deal. My first cardiologist told me that I would have a new heart before I was 50 (he was wrong) and I just put it aside. I felt great, I could do everything and anything I wanted to do, so it just didn't occur to me that at some point my heart would give up.

And then it happened.

It's hard living with this level of heart disease. I wish I could go back and make some big changes in my life, especially to remove so much of the stress. But the fact of the matter is, very little of what I did directly affected my heart. Enlarged hearts are overworked hearts. They don't last as long as a regular heart. That my heart has made it this far is almost miraculous. I try hard to ensure that it will last even longer. To do that, I need my downtime. So I'll be sleeping tomorrow.

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Blogger Rhea said...

Have a good rest. I wish, too, you could have a lot less stress. It's not fair.

6/7/08 11:28 AM  
Blogger Daisy said...

Sleep well, friend. If wishes were horses...well, they're not. Here's hoping the kids let you have your day of rest. The rest of us? We'll just stay in the background.

7/7/08 9:12 AM  

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