Chronic Tonic at VOTS-Napalot

I used to be pretty active. I was never what you would call athletic, but I did recreational things, I traveled, went camping, went out and about, you know, did things, went places. These days it seems like there's only one place I ever go, only one place I get to regularly and that's Napalot.

Napalot, the land of Nod, Siesta, whatever you want to call it, almost every day for two hours or so I'm going to need to lay down and go to sleep if I can. This is usually going to happen sometime between noon and three because that's when my kids are in school and that's how it works out, but I've been known to be flexible and grab the odd nap after supper or even mid-morning if need be.

Because I am exhausted. There's a kind of tired that comes with Fibro that is hard to describe without sounding melodramatic. If you tell people, "Look, that whole Thanksgiving meal and the aftermath? That took a lot out of me and I'm having trouble moving today." They look at you funny. If you try to explain how you have to break down the housework into manageable bits and pieces or what things your husband does for you so that you're not out of commission for several days over it--you get "the look." And I'm sure some of you know what look I'm talking about, they might as well have the word "dubious" stamped on their foreheads. So, it's not like they'd understand that daily trip to the land of Nod. Here's the thing--I don't care.

I used to care, used to feel judged and try to convince people that I really was sick or I really was doing what was best for me, but you know what? What anybody else thinks does not matter. When you have an invisible disability there are always going to be people who do not understand, who will never understand, they may not want to, am I going to let that affect what I do or feel? I can't. So, some people think it odd that a grown woman who looks healthy enough needs a nap every damn day, that's a shame, but I don't have to justify my nap to them--I just take it.

 

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Thanks so much for this Triv33

NY brit expat's picture

We have illnesses that knock the energy right out of us; sleep is essential. My doctors told me to take a nap if I need it. You know that feeling of cold that nothing besides lying down will help? That is how I know that it is time for a siesta. If I don't take one then I will continue feeling even worse.

We know that we need to do it; the fact that others cannot see that we are unwell due to our invisible disabilities and insist on passing judgement (like they do with those that do not look poor enough to be eligible for food stamps or on other forms of benefit) is just their arrogance and ignorance speaking for them. I still feel guilty that I cannot do everything that I used to, I feel guilty that I need to rest when I need to; it is how we are raised that somehow we are less valuable to society and to ourselves because we are ill. I am learning to live with it; I need to stop punishing myself. I cannot control how other people think; but I certainly will not let them make me feel even more miserable than I already feel.

Working on stopping punishing myself due to the illness is more of a priority than listening to the judgements of the ignorant.

Thanks so much for this Triv, I cannot tell you how much I appreciate it.

 

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It took me so very long to come to

triv33's picture

terms with it. Then after I had kids I had a new wave of guilt to deal with, that one still creeps up on me here and there. I mean the 24 year old in the park frolicking in the heat for three hours with her kids? That will never be me, but for all I know she's a neat freak and doesn't make slime in her kitchen or whatever. My kids are happy and healthy and I need to keep focus on that and not that I'm not perfect, fit, active mom.

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We have to do what we have to do

NY brit expat's picture

but I really wish that I didn't feel so guilty. Realised that I had set myself up for 4 meetings this week. It takes me ages to do anything, I need at least 8 hours of sleep a night. I find myself explaining that I cannot do too much and feel bad. At least these people understand that I am ill, need to take care of myself and contribute where and when I can.

It is me that is frustrated, I need to constantly remind myself to be careful. Then I need to remind myself not to feel guilty, then I need to remind myself to have a little compassion with myself and learn to adjust. 

I ws never extremely athletic, but I was always busy. There are days, like today, where I literally needed to go to bed before I went out again as I was having problems. If I answer the door in pjs, I feel embarrassed, I feel guilty, I feel like I am not contributing. Am working on the compassion thing; I can find sympathy and empathy with others, it is myself that I am not great with finding compassion. It takes time, readjusting to illness and changed abilities is not easy. But very few things in life are easy and they are especially difficult in societies in which those of differing abilities are viewed as lazy or it is somehow their fault. sigh

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I have been having brain fog

NY brit expat's picture

more and more as a common thing. But I get that bone-chilling cold and then I know that I need a nap; brain fog for me comes with insufficient sleep and too much activity rather than needing a nap. 

Honestly between the bone-chilling cold and the hot flashes, my body thermometre is driving me nuts! :D

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I can't seem to keep my body temperature

triv33's picture

regulated. Some days I'm wearing a sundress and other days I've got sweaters on. But I know what you mean, sometimes you need to get bundled up in bed until you're warm, nothing else will do it.

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Since it is British winter

NY brit expat's picture

I am alternatively freezing (which has nothing to do with the temperature; it is not that cold here) or boiling (which has to do with the 5 layers of clothing that I wear due to the weird weather combined with the hot flashes) ... it is ridiculous. 

Love my bed, it is probably my favourite thing in the house; even more than the cats, books, and the computer. sigh, but one should never sneer at a close friend. :D

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i call it "mushy brain"...

poligirl's picture

i have no concentration ability when i am exhausted... and i don't even have to be sleepy tired to be exhausted...

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I lose words mid-sentence, I stand there,

triv33's picture

mouth open, face mildly panicked, eyes rolled up, as if it were up there and if I could just look far enough I would see it, but no...I got nothing. It's infuriating, I hate it.

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I was worried that I was developing

NY brit expat's picture

incipient dementia, then thought it was adult-onset ADD, then realised it was a by-product of the condition. Drives me mad, my brain was the only thing that I could count on. So, started using phone to help me remember stuff, but that doesn't help when I've walked into the kitchen for a drink, noticed the dishes or the counter-top, start cleaning them, then remember I was chatting with someone on line and return to the computer and then realised that I forgot the drink. It is embarassing ... usually only noticed by the cats who raise non-existent eyebrows at me. Lack of attention span, forgetting what I was doing, getting caught up in something else. You cannot set reminders on the phone to get a drink ... 

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