The question seemed simple to her: “How is your energy compared to how it was around the time of your last visit?”
Well first, you’re asking someone with memory problems to remember how she felt a month ago. Then you’re asking her a 
very subjective question. Try again.
“How is your energy on a scale of 0 to 10?”
That seems better, but it feels even more subjective. I did a lot this weekend. I did more than I had in a long time. And at the end of the weekend I was completely worn out. I was too exhausted to cook dinner last night. I had to sit and rest for close to an hour before I could even get out of my chair to heat up food from the freezer. Still, I was excited at how much I did.
Well, I was excited until I realized how much more everyone else did. Take the brunch. I was a bit late, but still one of the first to arrive. I didn’t have the energy to cook, so I brought chips and salsa. It was such a lovely day and we were near a great park, so afterwards I went for a walk with a friend who was at the brunch, K. It was a short walk, but it was great to get outside. That was all I could manage, though. I went home and collapsed. K, on the other hand, had been out before the brunch. She had gone downtown and visited the memorial at the site of the bombings. She lived farther away and it took her longer to get there. Then, after the brunch and our walk, she met up with a friend for dinner. Huh, I guess people can do that. The host had to get the apartment set up. She prepared everything. She cooked. She entertained. Then after all of that she walked out with us and headed to a meeting for a volunteer group she’s in. Huh, I guess people can do that too.
So how can I possibly measure how I feel? I did so much, yet it was so much less than everyone else seems to do. Still, I tried to be as objective as possible and rated my energy at a 5. Then my doc read back my last visit’s report, from just one month ago: I’d rated it 6 out of 10. I’m sure I don’t feel worse than I did then. I’m certain it’s just my perspective. So now the question is, was I too high last time or too low this time? Or am I really getting worse after all?
I just don’t know. I don’t know. I wish I knew but I don’t. I think I’m getting better but it’s so hard to tell. And there are just so many problems holding me back. I need to find a new doctor to work on my thyroid. I need to get this insurance issue settled so my stress will be reduced. I need to keep adjusting my diet. All of these things are holding back my progress. I just wish I knew if they were holding it back entirely or if I really am moving forward.
I really hope I’m moving forward.
Chronic Rants 
Your experience resonates strongly. I’m wondering if the ‘measuring’ might not be getting in your way. Healthcare providers use it as a way to get a handle on how we’re doing but it’s so subjective – of course, you can’t remember your own rating system from visit to visit. Who could? And it’s especially painful when we notice what others can do that we can’t. Have you tried setting ‘intention’ — clearly identified ways that you want to show up or what you want to accomplish so you can measure yourself in ways that you can feel good? If this is all stuff you already know, then excuse my stepping in to offer another view point and please just take my gratitude to you for sharing.
Thanks Rosalind! I like the idea of setting intention. So far, I’ve been giving examples of both typical and extreme days. I’ll describe the activities I did, and let my doc decide for herself how that rates. Combined with my own rating, that seems to be working decently, though not ideally. I’ll try what you said, too.
I totally understand your dilemma as I have exactly the same problem. I feel I’m doing better, but then I still have days when I can’t get out of bed. I’ve found that writing a list of what I’ve done each day (and I mean every little thing) is a good way to judge as in a month I can then look back and see how much more I’m doing now, even if I ‘feel’ the same. I mean, if you gave that 6 after having a shower, versus giving that 5 after going out to the brunch, you may be physically feeling worse ON THAT DAY but it doesn’t take into consideration what you have managed before feeling like that.
Hope this makes some kind of sense and that it helps. But I do agree with Rosalind – perhaps worrying about measuring your energy, is stopping you from living with the energy you have.
Tamara, I think you’re right. I’ve been resisting any sort of tracking because it feels overwhelming, but it would probably be helpful. I may have to suck it up and just do it. Thanks!
Well, something else like the pain scale – totally based on lots of reasons running through your head at that moment. It is often odd that we tend to go for the middle ground – yeah we know we haven’t lots of energy but don’t want to go with the can’t get out of bed because that’s not every day either, I think that health professionals try to quantify us in order to have some measurable idea of what is going on. Not always for us to feel better but for them to be able to have some understanding of where we are now and last time.
Now, you know that your outing was a big deal – hurray for you! Don’t let this scale and your comparisons to others take away that you did good for you and enjoyed it!
Just keep taking life a bit at a time. I sadly have no answers for you other than celebrate the good bits.
I am still recovering from my six month old grandson visiting had to cuddle,sing and play with him lots but it completely knocked me out.
Take care
Extra hugs!
Lorna x
Lorna, your comment made me laugh because you wrote exactly what I said at the appointment, “Well, it’s not like I can’t get out of bed, so maybe a 4 or a 5?” It’s so true! You’re right about celebrating the good bits. Sometimes I do celebrate and sometimes I get pessimistic about things. I’ll try to focus more on celebrating.
I’m sorry to hear you’re still recovering from your grandson’s visit, but how great that you got to have a visit with him! It sounds like a lot of fun, even though it was tiring. It sounds like it was worth it for you 🙂