“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. 🙂

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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. 

 

 

I am not my illness . . . ?

Admittedly, this post may not be for all sufferers of CFS. Those who have recovered in great part and those who were first afflicted after their formative years may find this post moot.

But for some of us–me included–it’s a valid question.

I contracted pneumonia and mono virus simultaneously when I was fifteen years old. It feels a lot more complicated, but the bare bones is pretty simple: after that, I wasn’t the same. It’s like I never left the recuperation period after a long illness. It just went on and on and turned into chronic fatigue syndrome.

Not exactly what you want to have happen when you’re struggling just to figure out who you are, and where you fit in the world. Unsurprisingly, the struggle for identity and the struggle for wellness became enmeshed. Nineteen years later and counting, I couldn’t tell you what parts of me are strictly Isabella and which are my CFS, filtered through my personality. (Cuz it’s not the thing itself, it’s how you react to it–right? *wry laugh*)

For example, am I shy or does it make me shy?

Am I a forgetful ditz or is that just the CFS talking? (I’d say brain fog is the problem that bothers me the most. I really hate when I’m in a conversation and I can feel my brain losing information like an over-saturated sponge loses water.)

I’m not even sure if it matters. What matters is this: it’s hard when you don’t know who you are. In this culture, a lot of who you are is determined by what you do, but when that changes on a daily basis, how is the decision made?

And another scary question I think that all sufferers of CFS face: does having CFS affect my value as a person?