So Tired of Being Tired

Truthfully, I don't usually post many blog posts from my phone, much less spontaneously with the sole intent of complaining about a fact of Spoonie life rather than with a purpose of conveying a point. This is one of those exceptions, because, really, I need to vent a little.

I've been caught in a Fibro flare for several weeks now. I can't say it's unexpected; the change of the seasons tend to bring them on, and when you add on the fact I got normal-person sick on top of it, it was a perfect Spoonie storm. I could honestly live with the pain; pain is a constant background noise in my life that regularly shoves itself into the foreground, demanding my attention like a toddler throwing a tantrum until I attend to it and it reduces back to that background noise state. It's never totally  -gone,- it's just varying levels of presence.

The exhaustion, on the other hand... that's what makes this suck. People hear the term chronic fatigue and assume you're just tired all the time and need to sleep more. I wish it were just that. The fatigue is completely crippling. I can count probably on no more than both hands how many times in the past few weeks I've had the ability to get out of bed to do more than use the restroom or make a quick-and-easy snack or small meal. Some days even holding my phone is exhausting. Chronic fatigue syndrome also causes aches, itself, in the joints and muscles, it causes sore throats and headaches, even fevers. For all intents and purposes, it's a bit like having the worst flu you've had in your life.... but it doesn't go away.

I spend so much time sleeping, but I wake up as exhausted or even more exhausted than before I went to sleep. Then there are the days I'm dealing with either insomnia or painsomnia, so the sleep that at least seems to keep me going is denied, and the fatigue is bolstered by pure mental, emotional and physical exhaustion the likes of which makes my muscles tremble and my stomach churn with nausea, and my mind blank with white noise because thinking is too difficult and too demanding of my ever-dwindling store of energy.

When I'm on Twitter and I don't interact much beyond likes and retweets, it isn't personal. It's because it's too exhausting to type; to do more than scroll and tap either like or retweet and carry on. That's my way of reaching out beyond my fatigue into the social sphere with what little I can offer.

I'm only 30. I shouldn't feel this way. But I do. And there are many people older and younger who share this situation with me. We are the invisible people to the outside world; we rarely go out because of how drained we are. We miss out on life itself because we're putting our energy simply into existing, into surviving, into trying to make it through one day at a time.

Life slowly passes us by... and we can't do anything about it but watch it as it goes.

I'm tired of being tired. I know you are, too. We are all tired together, being drained by that invisible energetic vampire trying to suck our lives away. Knowing we aren't alone in this... It helps some. Knowing there are others feeling what we feel - physically, mentally, emotionally... it reduces the sense of isolation this brings on. But nothing will eliminate it completely. Nothing but a cure.

Few scientists seem interested in that. We usually aren't in a popular category - our illnesses typically won't kill us. They aren't contagious. So why should they bother trying to cure illnesses like chronic fatigue, fibromyalgia, ehlers-danlos, etc.? It's not like we're going to drop dead. We'll just exist in a Half-Life of pain and fatigue as the world passes us by. Best not to bother about us, right?

I know. That was bitter. And I'm ignoring the progress that -has- been made in fibromyalgia and cfs research. But damn it, I've been dealing with this for most of my life - coming up 21 years! And it isn't getting any better. Not for me, not for any of us I think. Progress may be progress and Rome wasn't built in a day.... but it seems, from my viewpoint, that people aren't aware - or don't care - about the invisible illnesses that take their toll on the millions that suffer with them.

That needs to change. Desperately.

We want our lives back.

I want a life for the first time!

And it isn't just up to those of us that are ill to fix it. We can't do it on our own. We need you, too. We need help, we need awareness, compassion, and empathy.

We need a cure.