And praise God I was because if I hadn't been, it's hard telling how much worse things would be for me now. But reading now is no longer fun; it's no longer the escape or the joy it used to be. Now it's a not just a challenge.
It's a tedious, exhausting, mind-twisting chore. There is virtually no joy in reading for me anymore. Now there's a loss for you. Just posting like this takes extremely long amounts of time because of the reading & reading & trying to comprehend what's been said, how you mean to respond, how you ACTUALLY respond, etc. Every little detail becomes a nightmare.
Many people I've known who "only" have FM... they have it "bad enough" for sure. It's a horrid, life-changing, exceedingly misunderstood illness. The pain they feel is probably the worst they've ever or almost ever felt.
FM and CFS-ME, over time, have gotten so mixed up that a lot of times people w/FM think they have CFS-ME because they get so much more tired than they used to or they can't "do" as much.
For me, with the CFS-ME combined with FM, it's not that simple and the tiredness is far deeper than many can imagine. And worse, the researchers are now grouping the two together so it's a massive mess. And they may well be sub-groups of each other somehow or related somehow. But often, it's incredibly frustrating when people gripe about how they'll go do this or that and then they're so tired and hurting so much. And I have no hope of coming anywhere close to being able to "do" the things they do... or "go" the places they go.
Try not being able to "go" at all. Try not being able to "do" at all. We're not talking here about the average tired that most people get. Or even the tiredness that comes with something like the flu. It goes much deeper than that and is more of a feeling that permeates every cell in your body. The words "tired" or even "exhausted" simply do not cut it; do not appropriately describe the feeling. But it's as close as we get so let's keep it simple. We'll stick with the word/misnomer "tired." How about being so tired you physically are unable to:
- get yourself cleaned up for the day
- even move to brush your hair or your teeth
- get more drink
- get the food you desperately need because lack of food is making you feel sicker...
Try being that tired and much, much worse; so much so that simply moving 20 feet is exhausting and you end up having to lay on the floor for a while to recuperate. Or taking a shower and being so wiped out and hot that it's all you can do to get OUT of the shower and back to the bed. Then you're sweating so badly from the journey and from the shower that you have to lay in front of a fan blowing directly on you for almost an hour or more to cool off. And all you can do is lay there. You have no energy left. How can I possibly explain this intense, complete lack of energy that goes straight to your core; that makes it difficult to lift a glass, much less your arm or your body.
I truly praise God that my brain & my health was as good as it was when I first got sick because I'd be in much worse trouble now if it wasn't. And at the same time, while I'm acutely aware of what I cannot do, I am exceedingly grateful for the blessings and abilities that I have. I hate the phrase, "it could be worse." But the truth is... it could be.
Makes coming to a forum a real challenge -- for a long time not only wouldn't I, I couldn't. Simply too overwhelming. I still struggle with that a lot and I really am better off than a lot of PWCs (people w/cfs). And that's exactly the situation with a lot of people who have CFS-ME.
How a place looks (visually) makes a huge difference. Text formatting is a lot more important than most people ever consider or can imagine.
Lots of text on a page. No breaks. No difference in text weight or even caps/lowercase. No logic to it, to the flow. Can make a person run away from an otherwise good article fast.
The easier something is to read (even visually I mean), the more likely people will read it.
I won't make any claims that anything I write is easy to read. My brain is damaged from the illness; that I'm able to write anything or make any sense is a miracle!
Take care & find the good!
