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.

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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.

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?

Secret Identity

The nature of my chronic fatigue syndrome leaves me feeling like I have a double identity. There is Normal Me, who appears to do all the normal mom stuff: dropping kids off, taking them to the park, planning birthday parties (low-key birthday parties!). Then there is the CFS Me: Must nap at the same time each day. I don’t volunteer at school. I can’t let my kids have friends over on early-out days. All shopping (except groceries) is done online. Vacations must have recovery time planned into them or there is hell to pay.

I watched and loved Smallville on TV. Clark Kent didn’t want to tell his friends the secret of his true identity because he was afraid of how they’d react to an alien. I knew just how he felt, except of instead of secretly being a hero, I feel like I am secretly the anti-hero. I don’t have a secret set of superpowers, I have a secret set of weaknesses. I don’t know how people will react if I reveal my true self. My family has lived in this city for nearly three years and I still haven’t found the courage and/or the opportunity to tell my friends. Does it matter if they know?

I’ve tried so many times to explain it before. In some ways, I feel lucky that I can sort of pick and choose who to try to tell. I definitely feel grateful that I am well enough to pretend I’m normal (by normal I mean CFS-free). But it often doesn’t go well. Once I tried to explain how postural tachycardia works. I came home and cried after. Another time I tried to explain by talking about symptoms. Tired all the time and need to nap every day came into it–and the lady I was talking to replied, “Oh! I have that too. It’s called being lazy.” I don’t think she meant to be rude–but golly, the implication left me feeling awful.  In college some of my professors didn’t react when when I gave them my disability letter asking them to take my requirements into account with regard to my needs in their class. Is it that hard to swallow just because I don’t look like I have a disability?

Chronic Fatigue Syndrome: which is it? A deep dark secret I share only with those I trust? Or a part of my self that is there the whole time and people will see it if they look carefully? Both?

The question gets knottier, I feel, when I take into account the fact that if I didn’t have chronic fatigue syndrome, I wouldn’t know who I am anymore.

To be continued . . .