Category: websites

Now that I have finished the dreaded deep analysis called How I am Doing I started to overhaul this site to be more about whatever interests me and less focused on the single topic of my illness. The SCDS section I created will always be there as will the related content but now that I’m used to writing a lot online again I am beginning to want to write about random topics that interest me and hopefully other people as well.

Part of preparing to shift the focus of the site is archiving the pages. Not hiding anything but organizing and putting little snippets on pages explaining how they worked or didn’t work in the overall scheme of healing up.

A lot of the task lists (See Food Tidings) seemed so reasonable at the time. A lot did not get done or got half done. You’d think between my husband, my friends, my family, and myself that these things would have been a breeze. I want to talk a little about why it’s not a breeze and also what might be a solution.

What goes wrong?

Getting things done when ill is not a breeze even with a supportive community because:

•   Illness takes spoons. Read the article that links to. It has been a vital part of conversations about illness since it was written.
• Your spouse/life partner/key caregiver is exhausted. Isaiah has been doing all the household chores for two years while working and taking care of me. Sure taking care of me was not at the level that taking care of some sick people is but it is still emotionally draining. By the time it is time to take action (like surgery) your spouse/life partner/key caregiver is either going to be confused (because they’ve never gone through something like this before) or exhausted (because they have been going through this too long). They will continue to keep the ship afloat. Be understanding. Extra tasks may not be for your person. If they do pull off extra tasks they are a super hero and deserve roses and gushy cards.
• Your friends, family, and extended people need instructions. Giving instructions is exhausting and sometimes confusing. They can only help as much as you can describe the help you need. They also all have lives of their own.

What is a possible solution?

You need a compassionate bully. Find that bossypants in your life who runs roughshod over everything but is still endearing in enough ways you keep them around and say “oh that’s just how they are.” I’m like this when I’m not sick. I get impatient when others can’t make decisions or agree on times and will sometimes simply say “Ok, enough discussion, we are seeing Hunger Games at 2pm at Cinema 10. Anyone who can’t make it will have to make other plans.” This is embarrassing to admit but imagine what this person could do organizing a food calendar!

Get in touch with your bossypants person and ask if they have some free time. Ask well in advance if possible as this person has the next two to three months planned out. Unless they love you lots they psychologically need to stick to their plans and those plans are likely to already include caregiving for others, potentially sick cousins or children or other people you have to admit have priority over you. Don’t get stressed over the “no” just look for your next bossypants.

Tell them you value their skills, explain you are strapped for cash (odds are you are) but would love to have them over to dinner (which your primary caregiver already has under control) and would set up some sort of trade for when you’re feeling better for the use of their skills. Maybe you quilt, maybe you knit, maybe you make bamboo chopping boards or websites. Arrange a pay back. Also know that this is a bond you are creating with your bossypants. They will be in your life for years after. It will be worth it. If it isn’t don’t ask.

There. To finish up I want to say I listened to the book BossyPants by Tina Fey in audiobook format with her as the narrator a few years back and highly recommend it. I really also need to talk to Amazon about that thing where you get a few pennies when you link to stuff because I love to link to stuff. Do they still do that??? Edit: They DO!