The reality of a spoonie’s mornings

September 22, 2015

I feel like my day has just started, but when my mom calls and says she’s just gotten home from her zumba class, I remember that for most people, the morning is half over. I chat online with a friend who’s sitting in her office 2 miles away, who has already dressed, gotten the kids off to school, managed her commute, and turned in a project to her boss, as I’m about to get breakfast. And the thing is, that’s ok!

I’ve never been a morning person. Now I know that I have a circadian rhythm shift, so of course I hated mornings. But I didn’t know that then. All I knew was the I wasn’t about to do anything more than I had to in the mornings. I loved turning off my alarm on weekends. When someone suggested I find time to work on a project or to exercise but doing it before work, I told them there was 0% chance of that happening, and I never understood how anyone could do things early in the morning.

Now that my sleep is a bit better, I can start to understand. My brain starts to function well within 1/2 hour of waking up. My body, though, is slower than ever.

As I have started to consider the possibility of earning a bit of an income, I’ve been reading books and blogs on solopreneurship. (Solopreneurship is entrepreneurship that’s done on your own. Often it’s just one person working from home or from a cafe with a laptop.) Many of them suggest being super productive by waking up an hour earlier than usual and using that extra time to get more work done. Doesn’t that sound nice? Gee, why don’t I just do that? Oh, right, because my body doesn’t work the way it should. I think it’s great advice…. for other people.

My mornings typically go something like this:

  • Wake up 7:30-8am, sometimes with the alarm and sometimes without it.
  • Read for 1-1.5 hours.
  • Take pills.
  • Get out of bed. Head to living room. Sit at computer.
  • Check Facebook for a while.
  • When thyroid pills have finished dissolving under my tongue and I have enough energy, get up for breakfast. This is usually around 10am.
  • Return to computer. Continue on Facebook and other sites (and maybe some solitaire) while eating breakfast, with the blue light pointed at me.
  • Around 11am-1pm finally get up, get dressed, brush teeth, and try to do 1 or 2 productive things like buy groceries, wash clothes, or straighten up the living room.

This might not sound like much of a morning to most people, but it’s what I can manage. And that’s ok! Sometimes my brain wants to do more. Sometimes my body has the urge to go out and enjoy the lovely weather. But it’s rare the two line up.

One day I’d like to get an earlier start to my days. I’d love to be up and doing things by 10am. That would be amazing! The reality is that it might never happen, so I have had to accept that.

What are your mornings like? Whatever they are, they’re ok! Because you’re doing the best you can, and that’s all you can ask of yourself.

4 Comments | Expectations, Fatigue, Frustration, Limitations, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

Even “healthy” people need time to recover

September 6, 2015

We get so used to dealing with pain every day, it’s easy to forget what a huge effect an acute incident can have on our health.

It’s easy to see “healthy” people and assume they heal quickly and easily from every malady. I get a “cold” that knocks me on my ass for a full week, with fever, chills, congestion, and plenty of other symptoms. The friend who gave me the cold goes about their regular routine while dealing with the sniffles for a few days. So when I react poorly to a new condition, I always assume someone “healthier” would have healed quickly.

That’s why I was giving myself a hard time this week. The incident involved my own clumsiness, a chef’s knife, a visit to the emergency room, and stitches. The day of the incident was horrible. The pain was horrific. The fear was deep. The next day was much better, but still painful. The day after that I assumed I’d be fine, so I was shocked when I wasn’t. I’m used to dealing with pain, so what was the problem?

A friend reminded me that “healthy” people need time to recover from something like this, so I should give myself time, too. My uncle reminded me of having to care for my aunt (his wife) last year when she had a biopsy in a location similar to where I was cut and spent 3 weeks recovering. And her operation was planned, whereas mine was clearly more physically traumatic. Story after story reminded me that “healthy” people take a while to recover from these things, so I should give myself a break, too.

After 3 days at home, I went out briefly yesterday. It was exhausting, but it felt good to be out and around people. Today, though, I’m resting again. I’m exhausted. I’m in pain. And I know I need a break.

I don’t have to worry about rushing to a job. I have enough food to last me a few more days. Sure, I have things to do. I’d like to cook and do laundry and read and work on a few projects, but I’m giving myself a break. Because if a “healthy” person needs time to recover from something like this, then I need even longer.

How do you handle acute injuries? Do you give yourself recovery time, too?

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Posted by chronicrants

Knit 1, Purl anything

August 23, 2015

One of the hard parts about being unable to work at a job is feeling like I’m not doing anything substantial. Sure, I do favors for friends and offer advice online and do other intangible things, but it’s rare for me to do anything I can point 2015-07-09 12.01.45to and say “I did that” and be proud of it.

I started knitting as a child. My grandmother made such beautiful things, and she loved knitting so much, that I thought I should try it, too. At the age of 6 I learned the basics. Unfortunately, I never progressed much beyond those basics. Then a few years back a friend taught me to crochet, and I really got the hang of that. Before I knew it, I was making some complex items.

I spend a lot of time sitting on my ass. It’s sort of inevitable when you have chronic fatigue. So while I’m sitting and watching tv, sitting and listening to an audio book, or sitting and talking on the phone, I’m also knitting and crocheting. I always have multiple projects in the works at any given time, and I love creating them. The best part is, I’m making something useful! At the end of each project I have a physical, tangible item that I can say I made, and I can be proud of it. I sell some things and donate others. It feels good to donate hats and scarves to a local homeless shelter and know that I’m helping people.

Last year I taught a friend with chronic illness how to crochet. Like me, she knew how to knit, and wanted to learn something new. Now she feels the same way I do: excited to be able to make something, especially because she can no longer work.

Crocheting and knitting doesn’t solve all of my problems. But it solves one problem. And I’m grateful for that.

What do you do to feel a sense of accomplishment? Please comment below so we can get ideas from each other!

10 Comments | Expectations, Fatigue, Frustration, Isolation, Job, Limitations, Raves | Tagged: , , , | Permalink
Posted by chronicrants

Too much weight on the seesaw

July 27, 2015

You know those cartoons where someone jumps on one side of a seesaw and the person on the other side goes flying up in the air, over the first person’s head, and finally lands in a puddle of mud? Keep that image in mind.

Being chronically ill requires a careful balancing act. Symptoms, treatments, pills, diets, supportive friends, unsupportive friends, jobs or lack thereof, and everything else in life contributes to this. If were all placed on a seesaw, somehow it would just evenly balance, so that neither side was on the ground or up in the air. Sure, it might totter. You might feel like it was going to tip at any moment. But miraculously, it wouldn’t.

That’s how it feels, most days. Obviously, something big could throw that seesaw out of whack, just like it would for a healthy person. A car accident or death of a loved one will always disrupt life. Usually small things can be absorbed into the heap on either side of a healthy person’s seesaw without any lasting disruption to the equilibrium, and that’s great. Those of us with chronic illness know that our seesaws are a bit different. They have a lot less room for extra weight.

I was chatting with a friend yesterday. She updated me on her recent hospitalizations, then said, “I know this is going to sound silly compared to everything else, but I have an ingrown toenail….” I knew just what she meant. When we deal with severe health problems, it feels like we should let the little things get to us, but I feel like it’s the opposite: because we deal with severe health problems every single day, we just don’t have the capacity to handle anything new, even if it’s small.

I often feel the same way. I could be in excruciating pain, trying to simply breathe through it, and some small new problem sends me into a tailspin. Why? Because I’ve already used up all of my energy dealing with the pain and I just don’t have a damn bit left for anything else. That new thing, tiny though it is, adds just enough weight to one side of my seesaw that everything on the other side flies up and lands in the mud.

Have you experienced this yourself? I’m certain at least some of you have. My friend was relieved to hear that I had. We’re often told by society that we should be able to handle our health problems, and for us chronically ill folks that’s hard enough on the best days, so it feels like defeat to let a so-called “small” problem tip our seesaw. But I’m sure it’s happened to some of you. Please share in the comments; if you don’t want to share details, a simple “Me too!” will let others know that they aren’t alone.

Leave a Comment » | Expectations, Fatigue, Frustration, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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