Image by National Media Museum via Flickr
Yesterday I had plans to spend time with a friend of mine.
She was really eager to see me since we haven't seen each other for months. I was encouraged by her enthusiasm, since getting together means she needs to come to me. She lives well outside my comfortable driving distance, so driving to her, or even meeting her half-way, isn't doable for me.
Now any visit with family or friends is always fraught with uncertainty. After all, even when I am consistently living inside my energy envelope, something like a change in the weather, allergies, a cold, a bad night's sleep or doing too much the day before can mean I have to cancel my plans. For me, making a date is a real exercise in optimism.
Plus for this particular visit, in addition to scheduling extra rest before and after our date, I knew I needed to run an errand to be able to make this happen.
You see, the last time we got together, I was so short on cash my friend had to pay for everything. She paid for brunch, she left the tip and she literally bailed me out of the parking lot. I was so embarrassed. Unfortunately, being short of cash sometimes is what happens when you are disabled and living off Social Security.
So this time, I wanted to pay her back. That meant asking my hubs to help me with a trip to the recycling center to take in the bottles and cans piling up in our backyard. Not a lot of money there, but just enough to pick up the check if we decided to head over to our favorite restaurant.
The trip Saturday to the recycling center wore me out! I crashed when we got back and slept for 3 hours on the couch. Then I worried on Sunday that I might have to cancel when I woke up extra tired and took another 3 hour nap. Remembering my friend's insistence that we make this work and her enthusiasm to see me, I managed to pull myself together Sunday night and made sure extra rest would see me through Monday.
In a surprising twist of fate, it was my friend who canceled at the last minute on Monday. She left me a message that a guy she met at Starbucks around New Year's had called her and asked her out for lunch. She hoped I didn't mind.
It's funny, because I am not quite sure how I feel about this.
I've canceled on her several times because I wasn't up to getting together like we planned, so on the one hand I figured that I shouldn't complain. But on the other hand, I was really looking forward to seeing her and was disappointed.
Plus there was all that preparation on my part just to get ready for our date. It's a lot of work for me to get together with someone, which is something that really hit home with me yesterday. I don't really think she or any other of my "healthy" friends and family truly understands this.
I know this will get worked out and we will reschedule. But in the meantime, I find myself pondering the question, "Should I expect my "healthy" friends be more reliable that I am?' That and I am once again amazed at how many hoops chronic illness makes me jump through just to spend some time with my friends.
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I probably should mention that the monthly blogging theme for July for NaBloPoMo is SAVE. It's been a while since I blogged on a theme, but judging from this week SAVE is an apropos theme for me. I don't know if I have 20 some odd posts that will fit the theme or not, but it's always fun to just write and see what happens.
I find being disabled is practically synonymous with filling out forms, lots and lots of government forms. Inevitably, I feel like I have to prove (over and over again) that yes, I am disabled. More than once I have encountered a question that asks me something like this:
Please describe your typical day, including the activities you engage in and self-care behaviors.
So when faced with this question once again, I decided I needed to write a bit of prose that definitively answered the question, once and for all. Here is my answer:
Every day starts with figuring out how much energy I can expend. I usually have about 2 to 4 hours worth of energy on a good day.
Every activity needs to be broken down into smaller pieces -- 15 minutes at a time, followed by a rest break.
I constantly monitor my pain and fatigue level during the day and sometimes need to put activities off if my symptoms increase.
Every day, I plan to spend 15-30 minutes on chores/housework, 15 minutes on pet care, 30-45 minutes on meal preparation, 25 minutes walking my dog using my mobility scooter, up to 30 minutes on e-mail or phone calls to family & friends, 15 minutes taking a daily 1 to 2 block walk, 15-45 minutes on hobbies and 15-30 minutes on writing.
If I plan to leave the house, which I can do 2 to 3 times a week, I adjust my activities accordingly and include more rest time before and afterwards.
The rest of my awake time is spent in a reclined position watching TV, spending time with my spouse and pets, reading, listening to music or watching DVDs.
Upon reflection, I think this is a pretty solid answer and somewhat akin to my own personal story about spoons or marbles or what ever other currency you image your energy takes. In fact, I think I might have transcended answering a mundane question and arrived at a real, honest-to-goodness personal plan to save my day. And yes, for the most part, I really do follow this plan, mostly because it is the only way I have found to prevent major setbacks from and flare-ups of my fibromyalgia and other pain and fatigue inducing conditions.
What is your plan to save your day? I'd love to hear what you do to manage the limited energy you have each day.
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My apologies if you've come here looking for My Mayo Clinic Adventure Day 3 post, because as you can see, it's not here!
