Navigating My Personal Energy Crisis
Apr 13 10:42
Our nation has been in a perennial energy crisis most of my life. Some of the first images I remember seeing on television have been long lines of cars at gas stations, and I can remember my mom trying to figure out what day she could get fueled. Today fuel’s not rationed by the government, but the fluctuating costs still dictate what kind of vehicle we drive, how often we fuel up, and – not too long ago – how much gas we want to buy at one go.
I find life with multiple sclerosis parallels the national energy situation. Everything is a balancing act, requiring careful planning and calibrating. What pills can I take, and how often can I take them, for example. I take a pill to pee functionally, as many of us do, and it tips my energy balance too far into the fatigue column, so I take it every other day, until that catches up with me, and then I take it every three days … and you can see the vicious cycle that causes. I can’t wait to learn to cath, so I can get control of my energy back!
I want to go to New York City with my family later this week – the trip’s been planned for a long time now. But there is so much I can’t control. I have a hard time sleeping at night, and we’ll be sharing a room with a niece. So I will need to take ear plugs. I could take Tylenol PM, but then I’d wake up groggy, thus tipping the energy balance, so that’s not a good idea. I can’t take the pee pill and have the energy to do the tourist thing, so I have to manipulate our itinerary in such a way that we won’t be on a train or anything like that for longer than an hour – and that may be pushing it.
The actual site-seeing could go one of two ways. Either adrenaline will kick in, and push my balance over to the energy side (could happen), or we’ll have to get them to allow us to split up, so that I can tour all the coffee shops and cafés in the Big Apple. That’s not so bad, plus the caffeine will help the energy situation (but not the pee situation).
Or I can convince them to just let me stay in the hotel in Newark, N.J., one day, so that I can refuel. I know they’ll want to see the Statue of Liberty and the Empire State Building, but since I already have, I don’t need to see it again. But geez, what can be worse than sitting in a hotel room in New Jersey playing a dumb old computer game while your family’s out having a blast without you?
I’m not sure what I will do, but I know I’ll figure it out.
Have you ever wondered about how lucky many of us have been to enjoy such a host of privileges for as long as we did? So many things aren’t rights or entitlements, but rather free gifts that may or may not last forever. Like energy. And the luxury of peeing on demand.
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Apr 13 10:47
Melissa, the MOMA was incredible! Good suggestion, thanks.
Apr 13 07:33
I highly recommend the Metropolitan museum of Art. You can sit and take in the beautiful things, plus you can get in for a nominal donation and use your money to eat in the lovely cafe.
From one low energy person to another.