It’s so hard for people to understand how you can seemingly overnight, go from being active and busy, to being “anti-social.” Believe me when I say that it’s a very gradual and painful transition, fraught with many difficult adjustments.
It’s a shame that people stop asking us to do things because we’ve had to say no on occasion. We truly would rather say YES to spending time with others, doing things we mutually enjoy. We may have to cancel at the last minute due to a flare-up, increased fatigue or pain, little or no sleep, or brain-fog that keeps us drowning in the inability to focus. We truly do want to spend time with you.
Social isolation can be both lonely and depressing. It’s difficult to watch your family and friends carry on without you. It’s really difficult to have to say no when we want to say yes. So even if we say no nine times in a row, please ask the tenth time. We may not be able to stay as long as we’d like or participate in the same way, but we still would love to be asked.
Some things I really enjoy when I’m able: playing miniature golf, going to a good movie, taking a walk along the beach, eating at a great seafood or Indian restaurant, going grocery shopping with my husband, playing a board game. What kinds of things do you like to do when you have the energy?
Last year I went with my husband to choose a Christmas tree at a local farm. The first real tree we’d had in years. We sat near an amazing fire pit while the gentleman wrapped our tree. It may seem like a simple thing, but it was a precious memory for me. I get very few of those, so I enjoy the moment and just breathe in the wonder, simplicity, and normalcy.
I also enjoy being asked to for an ice cream. My husband and I used to go get some great BBQ and sit in the car by the lake as we ate, I enjoyed those times. I enjoy sharing a good cup of coffee or tea with a friend. I enjoy a good phone conversation as long as it doesn’t last more than an hour or so.
I say all of that so that you will reach out to those who are chronically ill and offer them the simple, but priceless opportunity to do something special with them. Don’t give up on us.
Please don’t stop asking me.
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