Trusting the Numbers 2: What I Wish I'd Known

When I started pacing, I was terrified of my rapid loss of function, so I took quite literally everything that I managed to find. In doing so, I made some mistakes. I hope that others can learn from my mistakes, even though every person’s experience of ME/CFS is different.

  • I don’t have to be terrified of going over my anaerobic threshold. Yes, I want to avoid it, but sometimes it will happen, and it’s not the end of the world.

  • I wish I had not tried to reduce my heart rate so drastically that I had to change all my behavior immediately. In order to keep my heart rate low, I went almost immediately to full bedrest, getting up only to go to the bathroom (and often lying down on the way to the bathroom even then), and kept that up for weeks. I now wonder what would have happened if I had done much of my resting in a recliner instead. Would my POTS be so bad? I wish that I had “tapered” my activity, as I’ve since read is advisable.

  • I wish I had understood the value of good records. If I had it to do over again, I would record everything that I could bear to, even if I didn’t understand its meaning. For now, I find that too much data is better than too little. And I certainly wouldn’t erase my first couple of weeks of data if I had it to do again!

  • I wish that I had used all of my devices from the beginning. If I had, I would have realized that my new watch was not registering my heart rate properly, and I might have realized earlier that I had POTS.

  • I wish I had understood that there are three basic phases of pacing:
    • Getting out of PEM and treating orthostatic intolerance.
    • Stabilizing at a baseline, and understanding my safe baseline level of exertion. This is not a quick process! As I write this, I’m approaching this goal.
    • Living at the baseline and letting it (hopefully) expand. I understand that in this stage, the heart rate becomes less reactive, so I will likely be able to do more activity within the same limits. Hopefully, my anaerobic threshold will eventually rise as well!

Comments

I have excellent records. Always get a CD of anything done by radiology and a written report (usually available the day after procedure). Just file them away.

My neurologist told me that since COVID doctors don't have the time to share patient info with other doctors, thus it has fallen by the wayside. I carry a very thick file (have been diagnosed for at least 35 yrs.), and my doctors find it helpful.

If you change doctors, records often aren't sent in spite of all the HIPPA documents signed.

I used to keep a journal of my symptoms, but threw it away many years ago. It would be helpful to see what has helped and what hasn't. As the years pass, we forget.

I now have 7 stents (but I'm 75) and a whole host of cardiac problems, plus bone fractures due to epilepsy (2 types) and osteoporosis (which I've had in its worst form since the beginning of this journey). You name it, I think I've had it.....I could go on naming them, but what's the point?

I simply take one thing at a time. That's all I can do and retain my sanity. I'm a happy person, have learned that not everything is life threatening and just try to make life as easy as possible for my loved ones. Of course we all have those days.....! I know that, but they do end for most of us.

I hope you'll have more good days than bad ones, have every hope. Do something that makes you feel good about yourself each day, that's almost a necessity to keep our sanity.

We do tend to pick up other illnesses as time passes, but you know at the age I am now most people have faced some horrible problem or another. I have a close friend who has MS, cancer & is having a hard time recovering from COVID for the 3rd time (very young grandchildren). I want other people to tell me their problems, as it helps mine recede.

I'm not denying that we have major problems, it's just how I, one individual, deal with them. Better health for all of you. Yours, Lenora
 

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