A good sign

On Wednesday I had a headache in addition to my usual fatigue. I don’t get headaches often, but I think the stress of the past few weeks has been adding up, since we’ve decided to try to sell our home and move. I’ve moved plenty of times before, but selling a home is a new and unique stress. I feel overwhelmed but grateful at the same time that I haven’t had too much backlash from all the extra goings-on.

Anyway, Wednesday: I got the kids from school (I have a 3rd grader and a 1st grader) and realized I had to rest. NOW. As I slogged towards the stairs, I reminded them “Today is bath day!” Which was followed by my checking out completely.

I came back downstairs about three hours later–it was about time to start our bedtime routine, and I realized with a sigh that they’d probably forgotten all about showering since I’d neglected to nudge them in that direction, and it would have to be put off till the next day. They were in front of the television, where I had left them. But they were both in their pajamas and their hair was wet. There were also two empty but used cereal bowls sitting on the table: without asking me, or their dad, or fighting about what to do when, they had stopped watching TV, fed themselves, showered, and then resumed their TV-watching.


All these things in combination have never happened before. As I tucked them into bed I told them how proud of them I was, and how much I appreciated what they had done. It was good for me. It was good for them.


ME/CFS Awareness Day!

I would wish you a happy ‘Awareness Day’ but if you’re aware of chronic fatigue, you probably either have it or live with someone who does, and that’s hardly a cheerful thought. I got an e-mail about it (it’s like being part of a secret club! That no one wants to join!) that gave me this link with information about the day. Apparently blue is the color of ME/CFS awareness, so I have changed some of the colors on the blog to reflect that. Also, here’s an article I’ve been meaning to link to (it has two parts) about the lack of understanding and awareness of many medical professionals with regard to chronic fatigue. If you have a good doctor, take a moment to thank your lucky stars.


Second guess

It seems like one of the things to be dealt with, having CFS, is frequently assessing the state of one’s health–and doing it while dealing with brain fog, too, which renders any decision-making automatically an ordeal.

I know that sometimes it’s better to make myself keep going. I also know that if I choose to do that and I should’ve rested, I’ll pay for it. On the other hand, if I choose to rest and ought to have kept going, I’ll pay for that too. So, sometimes it’s a question of which price I’d rather pay today. For example, biffing a whole day as long as the grocery shopping is done often seems like the better option: at least there’ll be food in the house.

I feels like damned if you do, damned if you don’t all the time and frankly I find it exhausting. Mostly I try to set up a routine and stick to that. That way, I don’t have to think so much and if I’m doing my routine and find myself feeling too ill, it’s a sign for me to stop and take an assessment. (Because really, I try not to think about how I feel physically as much as possible.)

On a bad day in bed, I feel like even more is at stake, in some ways. As I said in my previous post, it can be great if my kids spend time with me reclined upon pillows, but what about–and I really hate to say this, because my kids are my salvation–the days when I just don’t want them around? Gosh, that looks really awful all typed out. But I’ve got to be honest with myself here: those days exist. If I shoo them away and say “mommy only wants to rest by herself,” will I regret it later when they’re grown and gone?

I don’t know. I try to find a balance, but I can never be sure when I’ll become unbalanced and tip over. Or if I won’t know I have until it’s too late.

Or maybe I’ll have forgotten about it all entirely by tomorrow. Good ol’ brain fog.

“Yes, I’m tired all the time too.”

Do you remember the first time someone said that to you? The last time? As everyone who has ever tried to explain having ME/CFS knows, most people just don’t get it. That their tired and your tired are not even on the same planet. It cannot be fixed by a nap, a good night’s sleep, or by a schedule change. This is the metaphor I came up with to help people understand the difference and how it sounds to me when they say that:

I ask her to imagine that she has just taken a final exam on which she performed poorly when she expected to do well. Of course she is disappointed, sad, maybe even angry. Then I ask her to imagine that we are having a conversation. I tell her that my mother has died, and that I am just devastated. She replies that she knows exactly how I feel, because she just did poorly on a test. Then I can either let it hang or spell it out: this is difference between us saying “I’m tired.”

It’s difficult to imagine someone actually reacting that way, of course, because most people can imagine how sad they would be if their own mother died. And I think that many of them wouldn’t make the comparisons they do (“Yes, I’ve got that too–it’s called being lazy”) if they could as easily imagine what is felt like to have CFS, and this is how I try to help them do that.

Feel free to borrow the metaphor if it works for you. 🙂

Sleeping . . . at night?

In an effort to shift my disastrously irregular sleep schedule, I got up at eight o’clock this morning and went out, thus proving that I don’t actually shrivel when exposed to direct sunlight before noon (who knew?). Nature saw fit to reward my diligence by providing me with the sight of two goldfinches (I love watching birds). I have provided a picture (not mine, but public domain), so that you don’t even have to go look them up to find out what they look like. 🙂 Isn’t he pretty? Anyway, I am hoping to be able to sleep at night, also known as that time when normal people sleep, so that I can be awake when they are and have more socialization. I’ll let you know how it goes.Image

What do you do (when you can’t do anything)?

One of the mainstays of my entertainment has been books on tape. There have been times when I was too tired to sit up and watch something, and even to lie in bed and read, but listening to a book is a degree easier than either of these things. If you can’t go anywhere with your legs, at least you can travel in your mind. And if you can find a series you like, even better!–you won’t run out material for a while. Some of my favourite series have been James Herriot’s books (such as All Creatures Great and Small) as read by the actor who played James (Christopher Timothy) in the television series of the same name. I’ve been listening to those since I was a child, home from school for weeks with walking pneumonia. Another series I have really enjoyed is the Aubrey/Maturin series, by Patrick O’Brian. (I have one reader I prefer to another, but I’m not sure which–it might be Patrick Tull.) And the Redwall series (Brian Jacques) is good on tape–they have a cast to do the voices, including the author. If you have any recommendations, let me know!

Not useless, not worthless

There have been oh so many days when I lay in bed, cursing myself and my illness, for my inability to get up and do something.

Of course cursing doesn’t help, nor does it make me feel better. 

During one particularly bad stretch, I realized I was going to have to come to terms with a self that couldn’t do much of anything, and not even half of what I wanted to do. I started to wonder–if the worst-case scenario came true and I became permanently bed-bound, would I be worth anything, or just a drain on my loved ones? Is someone who contributes virtually nothing to society still valuable as a human being? 

I’m still not sure why–that is, I’m not sure I could argue it with facts and figures convincingly–but I feel very strongly that the answer is yes: even someone who can’t go anywhere or do things is a valuable person. I would say as valuable as any other person. Maybe I can’t choose my circumstances but I can try to be as positive an influence as possible in my sphere of influence, even if that only includd the person who is taking care of me. 

As beings inhabiting this planet at this point in space, at this point in time, we experience existence as much as a doer of many things. 

That existence is valuable! 

Well, so, good. That’s decided. Now what? I struggle to play this decision out in practical terms. One thing that’s helped is trying to focus on what I can do instead of what I can’t. (Let’s all chorus together: “Easier said than done!”) 

Here’s one practical comfort: On a day when I’m definitely not going anywhere, my children are perfectly willing to come to me. I think they like it pretty well to come jump in bed with Mom and read books for a while. Sometimes a day in bed leads to more together-time than would have happened if I were up and about.

It’s taken me a long time–years, I think–to realize it’s much better to relish the extra cuddle time than worry that we had pizza delivered for dinner. Again.