(of probably 1113 episodes)
We're 227 days and counting away from my sister's wedding, the save the dates are in the mail right now, and the number of things I have to worry about in regards to it seems to be ever expanding. But for today, I'd like to focus on this -
I can't remember the last time I was outside of my house (and expected to be social) past, like, 7:30 at night. Usually by around that time, the pain and fatigue and achiness and dizziness have all worn me out, and I'm not up to my normal, fake-believe-everything-is-ok levels. And this wedding starts at 5:30. After what I'm sure will be a very full day.
So, I'm a bit concerned. Because, even though I am good at delegating, I will still need to be doing some things, such as keeping Sister J sane and the rest of the bridesmaids focused, and that's before all the intense stuff.
And, the thing is that my disease(s) are pretty are changeable, so even though I was in my roommate's wedding back in 2001, my cousin's in 2002, and two separate cousins for each of the following two years, I'm not the same kind of sick now as I was for any of them, so past experience isn't really helping me out too much here. I mean, I know I'll have to do what I can laying down in the days and weeks before, and on the day of especially (or else disasters will occur, and if there's anything worse than being 'the bride's sick sister,' it's being 'the bride's sick sister who passed out in the middle of their vows' or, even better, 'the bride's sick sister we had to call the ambulance for'... Shudder.); I know I'll have to be taking all my meds and have emergency meds for pain and breathing and all sorts of stuff on my person at all times (or, rather, on my chair at all times); I know better than to take even a sip of champagne, what with all the meds; I know enough to cross everything not absolutely necessary off the to-do list in the weeks leading up to and the month or so following the date; I also know that there'll be stress and stress is not good for me, so I've got to remember to take it slow and keep eating healthy, or things will be worse.
And, I know, that I'll fake what I can because that's what I have to do to get through it. And that I'll have fun at the same time, because that's the kind of multitasking people with chronic illnesses are awesome at!
But, since I don't actually know how I'll do at night, I think I'm going to do a trial run at the surprise party for one of my (other) cousins this Saturday. It's much more low-key than a wedding, but it's late, it's loud, it's all of the things that I'm going to have to deal with come May, so I'm going to make the effort and give it a shot. Of course, it's Tuesday, so my plans could totally change by Saturday (stupid sinus infection needs to listen to its antibiotic friends and DIE!), but for now, I've just made my first after dark outing plans at least 2 years. Yay!
3 comments:
My mom has MS,Chronic Fatigue and Fibromyalgia. Stress and doing too much is what sets her off. And when the pain comes and exhaustion she's in bed for weeks after. So I know how ya feel. Praying that you will have a great day and it won't wear you out or cause any ill effects!
You know all this, but I'd get by on short breaks and often. The trial run is a great idea. Duck out to other areas. With both the party and the wedding, is the whole thing in one place start to finish? Is a large part of it in a hotel or other venue where there may be quiet areas you can seek out? Will it be too cold to be outdoors in the fresh air, even if just for a few mins? Can you make your current state clear and have everyone understand if you need to slip out now and again? I know you may feel as it's not your wedding you don't want to say "Hey but..." but I would, even if only to a carefully chosen one or two. Good luck, and there's plenty of time to get prepared.
Perhaps the adrenalin of the wedding day excitement may help get you through? Sounds like you're doing all the right things though.
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