If I need to quickly define my health issues, I say I have “chronic fatigue and chronic pain”. (Cuz even *I* can’t remember all 20-something of my diagnoses.)
As I described depression as being sad times 1,000, fatigue is being tired times 1,000. Times a million.
I just ran across a site called “Mis-Treated“, about a woman’s search for answers to health problems. As I’ve clicked and clicked and read a bunch of posts, I’m mentally jumping up and down (cuz physically jumping up and down would hurt). She is writing about ME. About MY Story. About dealing with being chronically ill and disabled.
She wrote a very cogent post, “Five Reasons Fatigue Isn’t Like Normal Tiredness (Proving Most People Don’t Get It)“. And it is SPOT. ON.
I hope she won’t mind if I share her five reasons:
5. Sleeping “cures” tiredness; it’s only mildly helpful for fatigue.
4. Fatigue can actually keep you awake.
3. Pushing through tiredness means you get extra work done; pushing through fatigue means you’re out of commission for a week.
2. Tiredness is to fatigue as a pimple is to face herpes.
1. Fatigue is a daily struggle; tiredness is a temporary inconvenience.
All of that is true. So very true.
What it feels like: being bone-tired exhausted practically every second of the day. If you have a little energy and do something, you know you’ll pay for it later in further, deeper exhaustion.
What it is: being so tired that nothing helps. You want nothing more than to go to sleep, but even sleep, once you fight your way there, doesn’t necessarily help.
Treatment: None. Seriously. None.
Another of my super-fun health issues.
As my chiropractor says, it’s kind of a “waste basket” diagnoses, because it essentially means no one really knows what’s wrong with you.
However, fibromyalgia is a “real”, “recognized” diagnosis, even if most people have never heard of it and don’t know what it is. Or, you only know the term from seeing those annoying medication advertisements on TV. You know the ones: that promise you’ll get better from one condition, but in the meantime, your eyeballs will fall out and you’ll bleed from your fingers and oh yeah, you might die. Medication that I have tried that did nothing for me but make me put on 30 lbs. Which is ironic, because extra weight on your joints can also cause pain.
Sounds fun, doesn’t it? Pain times 1,000?
What it feels like: Everything hurts. All. The Time. Prolonged pressure of any kind causes pain. My dog knocking in to me in her “I’m-so-excited-to-see-you” dance hurts. My cat lying on my leg hurts. My hubs accidentally brushing my arm hurts. Running into a wall (because I’m a big klutz) hurts.
And I’m not kidding when I say “everything”. Nor am I being hyperbolic. If I think about any part of my body, say, my little toe, or my elbow, or even my eyelid, it hurts. The hurt can range from a dull ache to a railroad spike being hammered into my spine to throbbing to tingling to everything in between.
What it is: According to mayoclinic.org, fibromyalgia is “a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.”
Treatment: There are some medications that are supposed to help, but in my case, they did nothing but make me gain weight. Or did nothing at all. (I’m sure they work for some people, so if you’re suffering, don’t NOT try just because it didn’t work for me).
I’ve tried muscle relaxers, all kinds of sleep meds, pain medications (from OTC to the ones that they warn you might get addicted to), physical therapy (which did help, but I can’t afford to continue with the co-pay), talk therapy (to learn to deal with this hand of cards I’ve been given, and which I’m continuing), chiropractic (which helps), and, as I wrote about under C (“coping”), exercise can help.
I’ve also had some positive benefits from some OTC pain creams, including arnica (I get the best relief from this, tho it would probably really help if I could bathe in the stuff), tiger balm (I use the patches on my back when a tornado pops up back there), and penetrex.
One of the more depressing (to me, anyway) parts of having Invisible Illnesses, and being a Sick Person, is what happens to your IRL friendships. They… sort of disappear. (Thank goddess for online friendships. I can sit here in my PJs and wearing my sexy-sexy lumbar brace and not having showered for a few days, and no one knows. Or cares.) (Cuz taking a shower wears me out. And it’s difficult to wash my hair with arms that won’t go up, thanks to ye ole rotator cuff and frozen shoulder nonsense.) (And thank you soooo much to a friend who sent me an email yesterday. It means the world. Really.)
Prior to being this shell of my former self, *I* was the get-together planner. I threw the surprise parties; I found things to do and rounded people up; *I* made the contacts and the plans.
I can’t do that anymore. I’m a Sick Person. I haven’t the energy.
Now, I want to make this VERY clear – I am not pointing fingers at anyone in particular, nor do I cast blame or aspersions on anyone, because I understand the reasons, but … being a Sick Person means being a very lonely person.
And this is how it is (for me, not necessarily everyone) as a Sick Person:
- If you were the planner and the get-together-er, and you don’t do that anymore, people kind of forget about you. They are used to you calling, and now you don’t, and they don’t even think about it.
- You never know how you’re going to feel on any given day. Your friends don’t invite you anywhere because they know this. They also know you are flat broke and can’t really afford anything that costs anything.
- Your friends don’t call, because there is nothing to say. And you don’t call, because there is nothing to say. (I literally have four calls to return to people who have called me, but I’m trying to wait until I don’t feel like death-warmed-over so the chat won’t be a big bummer.) (In the meantime, they probably think either I suck or that I don’t love them any more.)
- Convos, if they happen, go something like this:
Friend: How are you?
Me: I feel terrible. My eye just fell out of the socket and I’m considering polymer as a replacement.* You?
F: I’m doing great. I’m dancing up a storm, I just met Matt Damon, I’m dating a new guy, I got a huge raise and a promotion, and oh… <trails off, remembering how your life sucks right now and your eyeball mishap.>
*Note: this has not actually happened to me.
- And sometimes, you just don’t want to get into all the crap that’s happening in your life because it’s too depressing. Or you don’t want to bring your friend down with all the terrible things in your life. So if there is a call, it’s very short.
- And then, if you do actually make plans, and IF are able to do those plans, said plans (whatever they may be), wear you out so much you’re wrecked for days.
I have a friend who suffers from crippling anxiety and depression. She lives about 20 minutes away from me, a fairly easy drive (considering the general horrid state of traffic around here) and we love each other dearly. But it can be months between our visits, because she’ll be feeling bad on a day I feel good. Or vice versa.
It always lifts both our spirits when we see each other, but somehow, too often we just can’t manage the 20 minute drive (or even the getting dressed before hand) to see each other.
Thankfully, our friendship is strong enough to withstand this Sick Person business (partially because we only too well know what the other is going through)… but it seems most of my other IRL friendships have not.
And that, my dear readers, is terribly, terribly depressing.
I almost decided not to include this topic – after all, my word count is already 950! – but since forgiveness is such an important part of healing, I decided I needed to write a few words about it.
But first, these words are from the book Love Letters from Vietnam by Alex Woodward, a singer/songwriter / writer who started writing songs based on people’s letters. (The first book in the series is For the Sender, and it, and LLfV include full-length CDs of the songs written.)
I read those lines, and my heart stopped.
“let go of hope for a better past”.
Because, yeah, isn’t that what we want? I want my dad not to have abused me. I want the other things I’ve suffered not to have happened. I want my first marriage not to have failed. I want to not have hurt people I love. I want to find that Ford jacket my first love gave me, that somewhere along the way got lost. I want to be a better friend. I wish I’d written more over the years.
But none of those can be un-done.
The past is gone.
I have to forgive my younger self. I have to forgive my past. I have to forgive my friends who don’t live up to my expectations and can’t stay in my life the way I would wish.
I have, with a LOT of work, forgiven my father, even if I can’t forget.
And that’s not what forgiveness is; it’s letting go of the hurt, while remembering what happened and the lessons learned.
I have to continue to hope, believe, and work for a better future.
I have to forgive.
And so do you.