This is Pride week in Boston. I love Pride! It’s such a fun holiday. Unfortunately, I can’t celebrate as much as I’d like. There are great parties Thursday night, then the Dyke March on Friday followed by the Dyke March after party, and then of course the parade on Saturday. There are parties Saturday night, and then more events on Sunday. And earlier in the week there are dedications, movies, etc. It’s a fun time, but who has the energy for all of that?
My parents came with me to the parade today for the first time. We all had a lot of fun. We walked around, watched the parade, then walked around some more. By the end I was exhausted. I wanted to stay longer, see more, listen to the music, see more friends… but my body said no. My parents were tired too. So many it was normal to be so tired?
Then again, maybe I shouldn’t be comparing myself to people who are 30 years older than me. Maybe I shouldn’t be as tired as a couple of 60+ people. I looked around at my peers. Many of them went to the festivities that I missed on Thursday night, as well as the Dyke March. They walked in the parade today. They plan to go to a party tomorrow. They’re a bit tired, but after some sleep they’ll be fine. They’re my age. Is that what I should be aiming for? Is that how I’m supposed to feel?
It’s been so long since I felt “normal” amounts of energy that I have no idea what to expect now. The last time I felt that, I was around 20, so I suppose I would have less energy now, in my mid-30s, anyway. But how much less?
I know it’s impossible to measure my own health or even my goals against the health and reality of others. But I also know it’s human nature to try and compare anyway, so I don’t berate myself for it. Still, is there any point? Will I ever be close to achieving that level of so-called normalcy? There’s no way to know. But I’d sure love to get even part way there.
Chronic Rants 
I can understand the need to compare with healthy people to aim for ‘normal’ (though I think you’ll find that every person has a different definition of normal – even when it comes to tiredness); but make sure you don’t overdo it in the attempts to follow suit, as that will only lead to a decline (which nobody wants).
But I think, in general, it’s the fact that sleep revives most people which is the different factor anyway. I want to say only compare to how you were at your worst, but I get the feeling that you don’t want to be told that lol.
Tamara, I think you’re right that sleep is a big differentiator – even my parents feel much better today after a good night’s sleep. Me? I’m debating whether or not I should even leave my apartment today. You’re right – I’m better than I was at my worst. But I still want to be even better 🙂
It gets harder to know what normal is as life goes on. I remember very little about my pre-arthritis life anymore. Today I do the Arthritis Walk so I’ll see how that goes. It will be a new experience
Good luck anet! I hope the Walk goes well today!
The pride celebration looks really fun. I’m glad you got to experience some of it. Anyway normal is over rated you have to do what you can do and be pleased with that. Even if in the back of your mind you have this wistful image of being able to do everything. I think that after all this time of being chronically ill and in pain our bodies would not be able to do normal. You have so much spirit and strength i’m sure if you can do more you will eventually. While our minds still have the ability to dream it means that we still have that instinct hope of better times.
Hugs
Lorna x