I've been feeling lately that my world has been shrinking.
I was very over-scheduled in June because essentially every doctor I see for just about anything wanted to see me at least once. I was ending up with three, four or even five medical appointments a week (including acupuncture). And then I was also finding time to run brief errands too -- never more than a brief trip to a store, and usually only the ones that offered electric scooters. And all that was just way too much.
I don't know if that's what triggered my flare-up last month or not. All I can really do is guess. But I find it somewhat amusing, in an ironic kind of way, that it was only after I got worse again that I realized how much I'd improved. (I think it was the acupuncture, which went on hiatus when my acupuncturist's baby was born in late June, that was responsible for the improvement, particularly in my energy levels.)
These days, I find myself mostly housebound again, and sleeping more than I have in at least several months. I've had weeks when I haven't left the house at all despite having a long list of errands and things I'd like to get accomplished. Heck, I haven't even had the energy to tackle the stack of DVDs I got from the library delivery last month. (Good thing they give me two months between visits!)
Last time I was this house-bound, my illness was still in its early phase and was new so people made a point of visiting and volunteering to help in various ways: Friends brought meals, arranged playdates, visited me even on weekdays when
Ellie wasn't here.
And over the year-plus that I've been sick, a lot of acquaintances have fallen by the wayside. I haven't been able to keep in touch with as many people, even via email. And I'm sure there's always the element of "out of sight, out of mind" for casual friends who get caught up in their own lives.
I find it interesting that in the early days of my illness, I found it very isolating and lonely to be home and unable to get out and be around people. I was incredibly grateful for those people who made the time to come visit me, especially the other moms with young children who have so little time to themselves.
These days, I guess I've gotten more comfortable with being home alone and having less contact with the outside world. I have so little energy lately that I'm grateful when I look at the calendar and don't see any doctor appointments or commitments.
I'm not sure if that's a good thing or a bad thing. Certainly it's good not to be wanting what I can't have. Last year this time, I really grieved the loss of my playgroups and being able to do things with Ellie on my own. Now it still saddens me that I can't take care of my own child by myself, but I enjoy the quiet when the house is empty. And I'm grateful that when no one is home, I can sleep as much as I want without feeling guilty. I'm less inclined to make phone calls to chat with people than I used to be.
And I wonder if it's a bad thing to be satisfied with what seems in some ways to be such a small life. Or is it healthy to accept my life as what it is, with ups and downs and limitations.
I went to a birthday party last weekend for a former co-worker's 5-year-old son, and was happy to see another former co-worker there. I'd wanted to check in with how she was handling being essentially pressured out of her job due to worsening multiple sclerosis. She hadn't answered emails I'd sent or voicemail I'd left. And I know from experience how hard it is when a chronic illness drastically changes your life. Although leaving the job she'd loved for many years was hard, she told me the hardest part was having to give up driving because she could no longer move her legs well enough to handle the foot pedals. (I'm not sure if her hands are reliable enough to get her car converted to hand controls, but I know she doesn't have the money right now anyways.) She is feeling very lonely and isolated -- losing the ability to drive was worse than losing the job, she said -- and I certainly remember feeling that way last summer and fall.
I think my friend is still in the angry stage of the grief process. Sometimes I think I haven't so much reached the acceptance stage as I've just lost the energy for the other stages.
Wake up with me! - I see so many videos on youtube where posters are saying "Wake up with me!" I thought it would be cute to do a blog post so ya'll can wake up with me :) ...
2 months ago